Now I no longer carry a diagnosis or take meds. Now I own my house, my business, a car, and the sweetest brown AND black spotted dalmation mix in Kansas City. Now I ride my bicycle across the Midwest for work trips to places like Omaha, Wichita, and Jefferson City (last week.) I ride across the city to meet homeless guys and visit places most people didn’t know existed, like our double decker train bridge, the concrete canyon blooming beyond with street art, and the worldwide ultraglobal top secret super headquarters. I’m engaged to be married in May to an awesome guy and I am finally getting the chance to be a parent that was taken away from me by my diagnosis. I’m a regionally recognized artist, have retirement savings and no debt but student loans, grow much of my own food, and have really awesome friends and hobbies and community connections. As Arlo Guthrie says, “I’m not proud, just tired.”

Tired of seeing my brothers and sisters in recovery dying. Tired of seeing them give up on their dreams. Tired of seeing people get a permanent diagnosis for a temporary problems. And mostly, I’m tired of hearing about the problems without the solutions.

My thought is that if people that were in emotional distress could pay for all of their own treatment, we can eliminate the middleman. We eliminate the need to search for charity funding or lobby for government funding that tends to be dominated by institutional recipients. We can create a model with a very minimal need for professional “help” by people with 4-10 years of student loans to pay off.  In our business, Wellness Wordworks, peers help each other with factually verified recovery information, inspirational stories, profound artistic statements, challenging exercise opportunities, and engaging community building.

Wellness Wordworks is a type of business called a social entrepreneurship. A business that helps provide benefit to our community has a better chance to solve our problems if it can pay for all its own expenses. Then the growth of the business only depends on the demand for the business, and we all can feel deeply and sorely in our hearts the huge unmet need right now for honest mental health information. Here is a description of 12 priniciples of mental health social entrepreneurship and how our program fits those. We would love to hear in the comments below about how your business fits into these 12 principles.

Mental health social entrepreneurship uses Google Fiber’s 100 times faster internet:

Pitching our mental health social entrepreneurship idea at Startup Weekend KC

We were a semi-finalist for $350,000 from Google since we are in Kansas City and figured out a possible way to use the 100 times faster internet that Google is building here. Kansas City was selected as the only city out of 1200 cities to apply for Google Fiber and it’s huge to bring the recovery movement into this project. What can you do with 100 times faster internet? Imagine getting your 40 hour workweek done in 24 minutes. Imagine driving your car across the country not in 7 days but in 1.68 hours. That’s what 100 times faster means. We are on top of something huge, so huge I haven’t even really figured it out. It’s kind of like when Edison invented electricity – no one knew how to use it. What do you do with a light bulb, anyway? And I don’t even know whether a server in KC means you get 100 times faster internet in North Dakota or not.

If you want to help us figure this out, please, please volunteer. Here’s our application form from two months ago.  Currently we have 54 volunteers working on projects like grant writing, medical research, video editing, making surveys, researching software programs, writing blogs for us, going to advocacy meetings, and creating artwork. Our economy is now the gig economy, the new economy, the rise of the creative class with up to 25% of people in the US self-employed. You CAN build your own job, and anyone in the country can help us from anywhere. When you help us, you gain skills, connections, and approaches for increasing your own income, including with our rapidly expanding programs.

Wellness Wordworks mental health social entrepreneurship has two main focus areas:

B: The second focus of our Mental health social entrepreneurship focus is to solve those problems.  We are envisioning a website that might be called Connect Power that would be able to fix mental health care for pennies on the dollar. We are also going to expand to all chronic disease like arthritis, lupus, cancer, diabetes, etc. in reasonably short order. The Connect Power Website will have three main functions:

1) peer support: people volunteer or get paid by membership fees to help share knowledge with each other via phone text, email, video, online forum, in-person etc. People can make profiles to list what they know, want to learn, and what hours and how they are available. If the video work is done locally it might use the Google Fiber network.

2) crisis care: people volunteer or get paid to let folks in urgent need of help come over to their house and couch surf for a while. People again put up profiles with what kind of crises they know and can handle, and what kind of space is open in their house.

Vickie McCarty of Maine has been following our mental health social entrepreneurship since day 1

3) health care: people can hook up with alternative health care providers and get unlimited group help like exercise, yoga, therapy, or self-improvement classes. If these clases were hosted with video on the web it would again tie in to the Google Fiber network. A higher level of help would included unlimited 1:1 help like therapy, case management, massage, Reiki, or medication advice. This recognizes the huge expense of 1:1 help, especially with people who have degrees and student loans to pay off.

The website will be grant funded initially and then paid for by membership fees. If people can’t afford membership fees they can count some of their volunteer time above for the membership fee. I’d like to start by focusing nationally on peer support (1) but locally in Kansas City market for the crisis care and alternative health care providers. Then later expand nationwide or worldwide.

I sent them to a colleague, far more experienced than I, for couples counseling. When I conferred with him, his stories of their sessions frequently bore little relation to how they each described to me their marriage.

Over the years, I’ve learned a couple of very troubling things that this situation exemplifies.

The first is obvious: a therapist cannot reasonably assume a client’s reports to be accurate.

The second is a bit more subtle: “supporting” a client’s perceptions can easily wreck lives. In this instance, supporting the husband’s understanding probably wouldn’t have worked out well for the wife, and vice versa.

In the twenty-five-plus years I’ve been in practice, I’ve often had therapists refer the spouse of one of their clients to me. Almost invariably, they’ve given me an account of what they understand the spouse’s issues to be—based entirely on conversations with their own client. I’ve learned just not to expect these accounts to be accurate. These accounts aren’t always terrible (though sometimes they are), but they’re often enough off in significant ways.

I’ve also occasionally had the parents, siblings, or significant others of my own clients come in for consultation. In almost every case, I’ve had to revise my surmises about those people—sometimes in a more positive direction, but sometimes in a negative one. One case in particular stands out in memory. A client brought in her older sister, whom she’d generally portrayed as a stalwart supporter. I was stunned to watch the sister systematically undermine, contradict, and control my client, while my client willingly submitted to being demeaned.

I remain puzzled that therapists, all of whom have some sort of graduate degree, think they can understand someone they’ve never met, based on the pained accounts of suffering clients. I’m excruciatingly vexed that therapists are routinely willing to support, encourage, or exhort their clients to actions based on such questionable views.

Even the most by-the-book, “correct” therapy can be dangerous: the client’s changes impact people outside the therapy room, who have no say in shaping the therapy. A therapy that makes a client very happy can easily wreck the lives of those he or she influences.

The direct relevance of these observations to “Mad in America” is this: The psychotherapy and counseling industries have themselves played a significant role in our culture’s willingness to embrace biological psychiatry. We will not win back the hearts and minds of the public if we keep repeating the mistakes that made people willing to leap into the arms of the pharmaceutical companies.

Many people, both people who need help and their significant others, quite rightly fear therapy. The possibility of getting relief without falling prey to the influence of therapists offers those people hope.

Two major historical phenomena illustrate the problem: NAMI, and the False Memory Syndrome.

While NAMI is sometimes portrayed as a front for the pharmaceutical companies, that’s not how it started. It started with families of the seriously mentally ill who were sick to death of being portrayed as causing the problems of beloved family members. While we can, and should, decry the perfidy of the pharmaceutical companies for many things, we can hardly blame them for supporting an organization that needed an alternative to therapists who blamed them for their own heartbreak.

And the False memory Syndrome, which was almost entirely manufactured by the therapy industries, simply disgraced talk therapy and proved that even the most highly trained therapists, at prestigious institutions, could not be trusted to abide by basic principles of logic and evidence.

While we are rightly aghast at the machinations of psychiatrists and pharmaceutical companies, we do not often enough ask why our culture has been so ready to embrace biological psychiatry. After all, “drugs” face a generally negative bias in our culture, and we have historically tended to see “facing your problems” as a moral imperative. As the most religious culture in the industrialized West, America is not naturally inclined to embrace materialist explanations of human suffering.

If biological psychiatrists have lied to us, we need to ask why, as a culture, we have been so willing to embrace those lies. Generally, we’re most apt to be conned when the con men appeal to our hopes and fears. We know that people in pain hope for relief, and the people in their lives hope that for them. What we don’t like to admit is that they fear the influence of therapy, and often rightly so. If we want to defeat biological psychiatry, we can’t just show its lack of integrity. We have to offer alternatives that deserve trust.

During the program, Irving Kirsch provided the bottom line finding from his analyses of FDA data documenting that antidepressants are not effective in treating persons scoring in the mild and moderate ranges of depression. Kirsch indicated that antidepressants are effective for persons scoring in the severe ranges of depression. What Kirsch could have said, which he said in his book, is that even for the severe depressed, there is only a 4 point (out of 51) difference between the placebo and the drug treated. Moreover, comparing those who are mildly depressed with those scoring in the severe range, the same level of improvement occurs for the mildly depressed and those scoring in the severely depressed range. The reason for the finding of better performance for the drug in the severely depressed group is that the severely depressed don’t exhibit much change in response to placebo. Ironically, Michael Thase, the exponent for antidepressants, has admitted that, on drugs, only 47% are in remission. By the way, the program could have discussed spontaneous remission, but did not. Even the severely depressed do recover. Before drugs, the average duration of an episode of depression was 6 months. Over a two year period, 80% of persons on drugs or without drugs will recover.

In the broadcast, the focus of the discussion was on the short term outcomes from the studies evaluating treatment for eight weeks. The outcomes for drugs appear even worse if one examines long term. For example in a study by Maj et al (1992), during a five-year follow-up 72 persons with 76.3% remaining on drug, 75% have relapsed. In a meta-analysis, Williams et al. (2009) reported that for those who fully recover on drug and remain on drug, 45% will relapse during a three year period. Fava and Offindani (2011) and Andrews et al. (2011) have compared relapse rates among those on drug versus those not on drugs. Those on drugs have higher rates of relapse.

Lesley Stahl correctly cautioned that people should not discontinue taking their drugs abruptly. Stahl did not detail the very dramatic drug withdrawal effects. In his book, Kirsch indicates that 20% of persons experience withdrawal symptoms when drugs are discontinued. In fact, in 1994, I argued that the very high rates of depression relapse (around 75% of persons randomized to placebo maintenance) within the 6 months after switch to placebo probably reflects drug withdrawal. The withdrawal symptoms noted in the literature include mania, motor problems in the jaw, nausea, abdominal cramping, headaches, sleep disruption, blurred vision, numbness, twitches and tremors. What is even more disturbing, although Stahl advises supervision from the doctor during withdrawal, request for assistance in drug discontinuation will find the doctor unprepared. There is a literature on how to detox from heroin, alcohol, benzodiazepines. Similar literatures are unavailable for detox from antidepressants.

There was reference to the side effects in the program, but no specification of what the side effects entail. Side effects are not trivial. Most people are aware of the diminished libido and sexual dysfunction associated with antidepressant drugs. They may not be aware of the association with suicidal ideation, for which there is a black box warning for young people and children. Long term, people lose the ability to respond emotionally both to positive and negative stimuli. (This has been verified with brain imagery.) SSRIs are associated with bone loss. (Cells in bone express the protein on which Prozac operates). SSRIs are associated with bleeding problems. (Platelets also express the protein on which Prozac operates.) SSRIs are associated with weight gain, metabolic syndrome, loss of vagal tone, an increase in inflammatory markers, and an increased risk for diabetes.

Stahl did report that the British health system is training more psychotherapists. In the studies evaluating drugs, many have included a psychotherapy control group. Psychotherapy consistently proves as effective as drugs, although drugs sometimes achieve remission more rapidly by several weeks. Moreover, persons treated with psychotherapy, in various studies, are less likely to relapse than those treated and continued on drug. As Kirsch argues in his book, psychotherapy is more cost effective as well.

Stahl also reported that the British are encouraging exercise, which has shown to be effective in preventing and treating depression. While the 15 minute segment was insufficient time to detail other alternatives, there is an emerging literature on dietary interventions (curcumin, omega-3s, Mediterranean diet) that prevent and ameliorate depression. Dietary interventions and exercise, unlike antidepressants which increases risk for diabetes and heart disease, will prevent heart disease and diabetes.

Hopefully America can learn from the British. As Americans move into universal health care coverage, we need to learn from those across the pond how to do it better and more cheaply.

Annotated Bibliography on Outcomes for Treated and Untreated

Andrews, P. W., Kornstein, S. G., Halberstadt, L. J., Gardner, C. O., & Neale, M. C. (2011). Blue again; perturbational effects of antidepressants suggest monoaminergic homeostasis in major depression. Frontiers in Psychology, 2, Article 159, 1-24. Analysis suggests greater relapse in those being treated with antidepressants

Beck, A. T. (1967). Depression: Causes and treatment. Philadelphia: University of Pennsylvania Press. Comments that in the more refined studies estimate is episode of untreated depression lasts about 6-8 months p. 51

Fava, G. A. (2003). Can long-term treatment with antidepressant drugs worsen the course of depression? Journal of Clinical Psychiatry, 64, 123-133. Fava reviewed literature on the increased frequency of episodes and shorter remission periods reported in the new literature compared to older literature. He reviewed studies finding emergence of depressive symptoms in groups who were treated with SSRIs for conditions such as panic disorder but were not depressed. He also reviewed the literature considering the precipitation of mania in individuals taking an antidepressant. He advanced the hypothesis that antidepressants may impair whatever switch mechanism the body has for maintaining equilibrium. He also considered the possibility that people may just become tolerant to antidepressants, which might be a permanent condition. He acknowledged the similarity of his hypothesis to the possibility introduced earlier (1989) by Fredrick Goodwin that drugs will accelerate a natural cycle of mood fluctuation.

Fava, G. A. (2003). Can long-term treatment with antidepressant drugs worsen the course of depression? J Clin Psychiatry, 64(2), 123-133. Speculates on reasons for worse relapse on drugs

Fava, G. A., & Offidani, E. (2011). The mechanisms of tolerance in antidepressant action. Prog Neuropsychopharmacol Biol Psychiatry. doi: S0278-5846(10)00292-7 [pii] speculates on why high relapse rates on medications

Gueorguieva, R., Mallinckrodt, C., & Krystal, J. H. (2011). Trajectories of depression severity in clinical trials of duloxetine: insights into antidepressants and placebo responses. Archives of General Psychiatry, 66 (12), 1227-1237. This study identified the curves in depression scores in those treated with placebo and drug over the 8 weeks of the trial. Both the placebo and drug responders showed a decrease in symptoms of depression over time. (About 76.3% of those receiving drug were responders). However, for the 23.7% of those on drug who were non-responders, the trajectories was either flat or with a positive slope. The authors questioned whether there is subgroup of depressed persons who are worse off on drug.

Kirsch, I. (2010). The emperor’s new drugs: exploding the antidepressant myth. New York: Basic Books.

Klein, D. F., Gittelman, R., Quitkin, F., & Rifkin, A. (1980). Diagnosis and drug treatment of psychiatric disorders: adults and children (2nd ed.) Baltimore: Williams and Wilkins. See page 410-says 8 months average duration of untreated depression

Lehmann, H. E. (1983). Clinical evaluation and natural course of depression. Journal of Clinical Psychiatry, 44, 5-10. Summary statement: “Without antidepressant therapy, episodes of clinical depression last from 2 months to several years, with average around 5 to 6 months. One-third of the patients recover within a year; probably one out of four untreated episodes last more than 2 years. Depressive episodes occur, on the average, every 2 to 3 years.”

Posternak, M.A., Solomon, D. A., Leon, A. C., Shea, M. T., Endicott, J., & Keller, M. B. (2006). The naturalistic course of unipolar depression in the absence of somatic therapy. Journal of Nervous and Mental Disorders, 194 (5), 324-329. Median time to recovery was 13 months for those who did not seek treatment; was 6 months for those who sought treatment

Spijker, J., De Graaf, R., Bijl, R. V., Beekman, A. T. F., Ormel, J., & Nolen, W. A. (2002). Duration of major depressive episodes in the general population: results from The Netherlands Mental Health Survey and Incidence Study. British Journal of Psychiatry, 181, 208-213. 20% of the subjects had not recovered after 24 months-level of treatment did not alter result.

Thase, M. E., Haight, B. R., Richard, N., Rockett, C. B., Mitton, M., Modell, J. G., VanMeter, S., Harriett, A.E., & Wang, Y. (2005). Remission rates following antidepressant therapy with bupropion or selective serotonin reuptake inhibitors: a meta-analysis of original data from 7 randomized controlled trials. Journal of Clinical Psychiatry, 66 (8), 974-981. After 8 weeks for all but one study which followed for 16 weeks, response rates across drugs range from 62% to 63% and for remission 47%, which is better than placebo with 51% response and 36% remission. Authors estimate that placebo effect may account for 75% of the efficacy in response to an antidepressant drug.

Williams, N., Sampson, A. N., Simpson, K., & Nahas, Z. (2009). Relapse rates with long term-antidepressant drug therapy: a meta-analysis. Human Psychopharmacology, 24, 401-408. Continuation on antidepressant, risk of relapse is 23% in one year, 34% in two years; 45% in 3 years

Zis, A. P., & Goodwin, F. K. (1979). Major affective disorder as a recurrent illness. Archives of General Psychiatry, 36, 835-639. A literature of studies before drug therapy. Those who never experience a second episode: Kraepelin 60%; Pollock 57%; Rennie, 21%, Lundquist, 66%, Stenstedt, 62%

Annotated Bibliography on withdrawal symptoms

Ceccherini-Nelli, A., Bardelllini, L., Cur, A., Guazzelli, M., Maggini, C., & Dilsaver, S. C. (1993). Anti-depressant withdrawal: prospective findings. American Journal of Psychiatry, 150, 165. Examined 10 individuals withdrawn from various antidepressants. Seven exhibited withdrawal symptoms which included cardiac arrhythmia, resting tremor of the jaw, tongue, and upper extremities, insomnia, chills, sweating, nausea, headache.

Haddad, P. (1997). New antidepressants and the discontinuation syndrome. Journal of Clinical Psychiatry, 58, Supplement 7, 17-21. Indicates that patients need to be on SSRIs for 8 weeks before a discontinuation syndrome will be observed; indicates that 20-86% of sample report symptoms; symptoms include dizziness, nausea, lethargy, headache, anxiety, tingling and burning sensations, confusion, tremor, sweating, insomnia, irritability, memory problems, anorexia

Lejoyeux, M., & Adés, J. (1997). Antidepressant discontinuation: a review of the literature. Journal of Clinical Psychiatry, 58 (Supplement 7), 11-15. Mentions: gastrointestinal distress, arrhythmias, anxiety, sleep disturbance, movement disorder, panic attacks, mania or hypomania, delirium, mood changes, dizziness, sensations of tingling and burning in limbs

Littrell, J. (1994). Relationship between time since reuptake-blocker antidepressant discontinuation and relapse. Experimental and Clinical Psychopharmacology, 2 (1), 82-94. This article analyzed results from 11 studies in which persons who had fully recovered from an episode of major depression had their medication discontinued. All studies found high rates of relapse (57% to 100%) within the six months following drug discontinuation. The paper argues that the high relapse rates represented drug withdrawal rather than a reemergence of major depression.

McGrath, P. J., Stewart, J. W., Tricamo, E., Nunes, E. N., & Quitkin, F. M. (1993). Paradoxical mood shifts to euthytmia or hypomania upon withdrawal of antidepressant agents. Journal of Clinical Psychopharmacology, 13(3), 224-225. Report emergence of mania/hypomania in 2% following antidepressant withdrawal in persons without a history of mania/hypomania.

Stoukides, J.A., & Stoukides, C. A. (1991). Extrapyramidal symptoms upon discontinuation of fluoxetine. American Journal of Psychiatry, 148, 1263. Report of man who had taken Prozac for 6 months, upon discontinuation was experiencing muscle spasms and exhibiting protruding tongue movements

Annotated Bibliography on Drug Side Effects

Andersohn, F., Schade, R., Suissa, S., & Garbe, E. (2009). Long-term use of antidepressants for depressive disorders and the risk of diabetes mellitus. American Journal of Psychiatry, 166(5), 591-598. Increase in diabetes

Bliziotes, M. (2010). Update on serotonin and bone. Journal of Clinical Endocrinology and Metabolism, 95 (9), 2124-4132. Recognizes that there are serotonin transporter on the membranes of cells involved in bone turn over. Indicates that SSRIs are associated with decreased bone mass, increased bone loss, and increased fractures.

Csoka, A. B., Bahrick, A., Mehtonen, O. P. (2008). Persistent sexual dysfunction after discontinuation of selective serotonin reuptake inhibitors. Journal of Sexual Medicine, 5 (1), 227-233. Discusses case reports of persons experiencing persistent genital anesthesia, loss of libido, and erectile dysfunction following discontinuation of an SSRI.

Fava, M. (2000). Weight gain and antidepressants. Journal of Clinical Psychiatry, 61 (Suppl. 11), 37-41.

Hamer, M., Batty, G. D., Marmot, M. G., Singh-Manoux, A., & Kivimaki, M. (2011). Anti-depressant medication use and C-reactive protein: results from two population-based studies. Brain, Behavior, and Immunity, 25(1), 168-173. Higher C-reactive protein, risk factor for cardiovascular disease

See Kawail, M., & Rosen, C. J. (2010). Minireview: a skeleton in serotonin’s closet? Endocrinology, 151(9), 4103-4108. Contains list of studies finding bone loss with SSRIs

Kivimaki, M., Hamer, M., Batty, G. D., Geddes, J. R., Tabak, A. G., Pentti, J., et al. (2010). Antidepressant medication use, weight gain, and risk of type 2 diabetes: a population-based study. Diabetes Care, 33(12), 2611-2616. Both weight gain and diabetes increase

Laje, G., Paddock, S., Manji, H., Rush, A. J., Wilson, A. F., Charney, D., & McMahon, F. J. (2007). Genetic marker of suicidal ideation emerging during citalopram treatment of major depression. American Journal of Psychiatry, 164, 1530-1538. 6% (120/1862) of their sample developed suicidal ideation early in treatment. Laje et al. were able to identify alleles for genes associated with the emergence of suicidal ideation

Licht, C. M., de Geus, E. J., Zitman, F. G., Hoogendijk, W. J., van Dyck, R., & Penninx, B. W. (2008). Association between major depressive disorder and heart rate variability in the Netherlands Study of Depression and Anxiety (NESDA). Archives of General Psychiatry, 65(12), 1358-1367.

Loke, Y. K., Trivedi, A. N., Singh, S. (2008). Meta-analysis: gastrointestinal bleeding due to interaction between selective serotonin uptake inhibitors and non-steroidal anti-inflammatory drugs. Alimentary Pharmacology & Therapeutics, 27, 31-40. A meta-analysis finding that SSRIs doubles risk for upper gastrointestinal haemorrhage and when combined with aspirin raises risk to 500%. It should be recognized that there are serotonin transporters on platelets and thus SSRI use can be expected to affect blood clotting.

McCabe, C.,Mishor, Z., Cowen, P. J., & Harmer, C. J. (2010). Diminished neural processing of aversive and rewarding stimuli during selective serotonin reuptake inhibitor treatment. Biological Psychiatry, 67 (5), 439-445. Cites anecdotal reports of emotional numbing to aversive and positive experiences in people taking SSRIs. Conducted  functional MRI observing the response to positive and negative stimuli in areas of the brain that are known to be activated by emotional stimuli. Healthy individuals who had taken citalopram for 7 days were less responsive to both positive and negative stimuli.

Moore, T. J., Glenmullen, J., & Furberg, C. D. (2010). Prescription drugs associated with reports of violence towards others. PloS ONE, 5 (12), ep. 15337. Analyzes the relative risk of increase in report in violence among those taking various drugs. Risk is elevated for those taking antidepressants and chantix for nicotine withdrawal.

Raeder, M. B., Bjelland, I., Emil Vollset, S., & Steen, V. M. (2006). Obesity, dyslipidemia, and diabetes with selective serotonin reuptake inhibitors: the Hordaland Health Study. Journal of Clinical Psychiatry, 67(12), 1974-1982.

Rosen, R. C., Lane, R. M., & Menza, M. (1999). Effects of SSRIs on sexual function: a critical review. Journal of Clinical Psychopharmacology, 19 (1), 67-85. Reports that as much as 80% may experience sexual dysfunction when taking SSRIs. Symptoms include anorgasmia, erectile dysfunction, diminished libido, and genital anesthesia.

Rubin, R. R., Ma, Y., Peyrot, M., Marrero, D. G., Price, D.W., Barrett-Connor, E., Knowler, W. C. (2010). Antidepressant medicine use and risk of developing diabetes during the diabetes prevention program and diabetes prevention program outcome study. Diabetes Care, 33 (12), 2549-2551. SSRIs doubled the risk of development of Type II diabetes unless an individual was also taking metformin (a drug used to treat diabetes)

Serebruany, V. L., (2006). Selective serotonin reuptake inhibitors and increased bleeding risk: are we missing something? American Journal of Medicine, 119 (2), 113-116. Indicates there are 120 cited peer reviewed articles documenting risk of platelet malfunction in persons on SSRIs.

Shah, A. (2011). Antidepressant use linked to thicker arteries. Emory University. Atlanta, GA. Retrieved 12/12/11 from http:shared.web.emory.edu/whsc/news/release/2011/04/antidepressants-linked-to-thicker-arteries.html.

An encounter from this week:

I saw a 24 year-old theater actress who was started on Lexapro nine months ago for a one-time “panic attack” and has gained sixty pounds since.  This is extremely distressing to her as her physical appearance and fitness is essential to her job.  She suspected the weight gain was being caused by the medicine, and so she went to her prescribing family doctor and he said that, no, it wasn’t from the Lexapro.  She couldn’t account for any other lifestyle changes that would cause such dramatic weight gain.  He checked her thyroid and said it was fine, and so he told her to exercise more and eat less.

At a subsequent visit, she asked him straight-up if she could stop the medicine, and he said no, because it was working so well to control her panic attacks that she should stay on it at least a year and maybe indefinitely.  He reassured her it was a very safe medicine and it was not causing her any side effects.  She tried to stop it on her own anyway, and after three days without it felt dizzy and then had a horrible panic attack.  This confirmed to her that he was right:  she had a disease and needed the drug.

Later, she told him she couldn’t concentrate anymore (unable to memorize lines), and he diagnosed her with ADD and started her on a stimulant.  In all of this, he never recommended any remedies for her mood or thought disturbances except drugs.  She lost a little of the weight after starting the stimulant and found she could concentrate better, but started having insomnia.  So he started her on Ambien.  It worked to help her sleep, but the daytime fogginess got worse, so he increased her to the maximum dose of the stimulant.  At this point, she became frustrated that he wasn’t really listening to her, sick of taking pills, but she didn’t know where else to turn.

A friend recommended that she try a new doctor, so she happened to come see me, not knowing anything about my take on mental health alternatives.  When she saw me, she was disheveled and tearful.  She now carried the diagnosis of three diseases (panic disorder, ADD, and insomnia), was taking three medications, had become suddenly obese, and most distressingly, was feeling mentally worse than ever.  She said she felt like her head was in a fog all the time.  Her panic attacks had returned along with chest pain, she couldn’t concentrate, she was moody and volatile, she couldn’t sleep at night, and the theater manager told her she had to figure out what was wrong soon or she would lose her job.  She didn’t know what was wrong with her, but felt like in a year her life had fallen completely apart.

After a long discussion and a medical evaluation, I told her that I was worried that all of her problems had been caused or worsened by the medications, and that we seriously needed to consider coming off of them.  We came up with a plan to taper over the next three months, one medicine at a time, supplementing with lifestyle changes, acupuncture and counseling.  We’ll hope for the best for her.

So the questions I ask are these:  why did her primary care doctor, who I assume had the best of intentions and did not intend to harm this young woman, jump to the conclusion that she needed drugs after she had one panic attack?  Why did he not question the need for the medicine once she started showing such known side effects?   Why did he continue diagnosing her with more diseases and adding more drugs?   Why is there no safety net to catch patients like this, who are being slowly drowned by the system, or to catch recklessly prescribing physicians?

I was fired from my employed position last year in part because I had started cautiously helping patients withdraw from drugs that seemed to be hurting them.  The hospital was concerned that my methods fell outside of the standard of care, could be harmful to patients, and thus did not represent the hospital’s interests well.  But do you think this patient’s original doctor will ever be questioned by any employer or licensing board for diagnosing and prescribing with such abandon?  No, he won’t be.  You would think it would be in the best interest of her insurance company to ask this question:  “How come this previously healthy, active young woman, in the course of nine months, now requires three medications at over $200/month, in addition to multiple office visits and blood testing?”

In short, why do we primary care doctors, who prescribe over 75% of psychiatric drugs in America, practice the way we do?

In my next letter, I’m going to offer an answer to this by offering examples of recent “Continuing Medical Education” activities that I have received, which are thinly disguised, unchallenged propaganda for the biomedical model, all coming from expert psychiatrists who have multiple ties to drug companies.

Best regards,

Mark

Editor’s note: These letters are selected from an exchange that Dr. Foster and Robert Whitaker have had since he read Anatomy of an Epidemic. They describe his interactions with his patients, and his changing thoughts about the prescribing of psychiatric medications. In all of these letters, the specific patient situations he describes are real, but all identifying characteristics have been altered or obscured, or permission has been sought, in order to protect patient privacy.

I am happy to be invited to blog here on Mad in America, and I hope to use this first post of mine to describe my personal answers to the above dilemma.  I will outline the life experience that led to me getting interested in mental health change, and then the various openings I have found to start creating such change as both an activist and as a mental health professional.  I am writing to join with others who have shared their stories, in the hopes that all of these stories will in turn inspire more people to do their own part to create the revolution that will bring real science, wisdom, and humanity into mental health care.

Early trouble: 

Like many people who later experience mental health difficulties, I had a lot of trauma in my childhood.  As do many traumatized children, I internalized much of the oppression, resulting in a defective identity and difficulty making social connections.

Personal Revolution:

I began my senior year in high school in 1972, the year the 60’s finally made it to my small town in Michigan.  Being a “freak” was suddenly a good thing, and people were experimenting with sharply different ways of seeing themselves, though this was mostly limited to taking drugs that opened their minds for no more than a few hours.  I quickly identified with this movement but saw reason to take it much further:  I saw it as a chance to be completely reborn or remade, to re-invent myself, and eventually to re-create the world as well.

From a psychiatric point of view, I was getting a bit “grandiose” or even “psychotic.”   I was not unaware of this, as I was studying psychology at the time, but I was also reading about alternative views of psychosis from people such as R. D. Laing who saw it as a possibly positive journey.  I was lucky enough to be able to discuss this with people such as my best friend at the time, a guy with his own “wild mind” with whom I worked at a nursing home that cared for many psychiatric patients, as well as with a thoughtful psychology professor at the first college I attended.  This professor informed me that he had been asked by the administration to watch out for young people who might be becoming psychotic, and that he was currently watching two people, with me being one of those; but he also said that he could see that I was currently getting by adequately and did not need an intervention.  Instead, we had long talks about the nature of reality, madness, and society, and I learned that I could make some sense out of my far out perspectives within such dialogue.

The sense that the journey could be positive kept me from developing an excess fear of madness.  Research suggests that such fear typically contributes to madness itself (Hirsch and Jolley (1989)).  One reason for that may be that the fear contributes to increased emotional arousal which in turn creates more “symptoms,” and this increase leads to more fear, etc., in an a vicious circle.  Another function of the fear of madness is to shut down curiosity and the willingness to explore divergent perspectives:  but while such curiosity may have a dangerous side when it leads a person into exploring “mad” ideas, it also is vital for preventing getting stuck in “madness,” as that same curiosity is required in order for a person to look critically at his or her “mad” thinking and eventually to transcend it.

I do recall at times having some intense fear of being truly seen as mad by others, and being dismissed as non-understandable, and denied the sorts of relationships that could affirm my newly emerging identity.  But I also feared being “normal,” not just because I sensed that “normal” culture was sick, but also because when I thought “normally” I felt defined by my past, and since my past was traumatic, that felt terrible.  Instead, I was fortunate enough to find people who could see me as “mad” in an interesting kind of way, and who had their own interest in challenging personal and cultural identity.

It was a time for many people to question the nature of reality, and I was fortunate enough to get involved with (and be tolerated by) groups such as the Institute for the Study of Consciousness founded by Arthur Young.  I learned it was possible to challenge the limits of everything we thought we knew, and at the same time think systematically.

Another group I got involved with was the San Francisco Suicide Club (the precursor group to the Cacophony Society, which in turn was the group that took Burning Man to Nevada, with my good friend John Law playing a key role in that.)  In the Suicide Club, we aimed at bizarre adventures, while needing to develop good communication and discipline in order to carry these off successfully.  That is, in order to share our creative madness with others, we had to learn how to successfully sharpen our “sanity” – for example we had to be able to deal with the technical challenges of dealing with exploring abandoned buildings, climbing bridges, etc., as well as the social challenges ranging from interactions with police to the dynamics within our own organization.

One of the events I led for the Suicide Club was a “mental health tour” of San Francisco.  The way the tour worked was that some of us played the part of mental health professionals, while others played the role of “patients” who were on tour.  Since the “patients” were already being “supervised” by “professionals” they could act as crazy as they wanted, without having to worry about being taken in by the mental health system, since they already were “patients” under control of “authorities.”  Good fun, but also a metaphor for the whole notion of exploring madness within a safe container, a concept that needs to be better understood within mental health treatment generally.

Family Mental Health Problems:

While I got through my “mad” exploration of identity and reality in a fairly successful way, without having any mental health treatment until I sought counseling in my 30’s to deal with unresolved trauma issues, many of my siblings did not fare as well.  Some were forcibly hospitalized, and while some managed recovery, not all did.  Yet, I could see that the basic outline of their journey was the same as mine – they were chaotically attempting to find a way of being in the world that made sense even given the traumas of their upbringing, and they were doing that without finding the supports that I was lucky enough to have found in my journey.  But as Eleanor Longden says, good mental health outcomes should not depend on one being lucky enough to find exceptional supports:  they should be what our system is designed to produce.

Becoming an Activist:

Moving away from San Francisco to help raise my child, I I eventually arrived in Eugene Oregon.   I met David Oaks in the 1980’s as he founded what became MindFreedom, which still has its home office in Eugene.  Though I was working at the time in fields totally outside mental health (first as a woods worker, then as the financial person for a worker owned construction company,) I slowly began speaking out against, and protesting against, the status quo in mental health care.  This took years to develop, as my interest waxed and waned, but I was gradually drawn into more activism.

What motivated me was the understanding that people similar to myself (including my own siblings) were being misinformed about what they were going through by a system that failed to understand the process, by a system that saw only bad in a process that I knew from my own personal experience could also be good.  The “treatments” that were then given were ones that suppressed the person along with the problem, and that didn’t open any doors to real healing, or even imagine that it was possible.

In the earlier days of my involvement, I would just attend events as a spectator or volunteer at mailing parties.  But then, I began participating in some protests, and also speaking to the public, and writing editorials for the local paper.

Currently, I work as a coordinator for our local chapter of MindFreedom.  We lobby for positive changes in mental health treatment locally, applying political pressure; for example, we organized to get a city council resolution supporting mental health empowerment.  We play a major role in creating progressive discussion in the community about mental health issues through the Opal Network, which brings together consumers, survivors, family members, professionals, and other interested parties, all around a mission of supporting the voices of consumers and survivors.  We have lectures, discussions, and also movie showings, to address important issues.  We also create protests, often using humor, to have fun and point toward needed changes – the Normathon, in which we all worshipped a giant pill, is only one example.

Becoming a mental health therapist:

I started doing volunteer work in the 1990s in mental health, and then began a graduate program in social work in 1997.  Social work school provided a reasonably good overview of how to help people with mental and emotional problems, that is, except for people whose problems happened to be severe.  Then, we were told, the problem was really biochemical, and we had to make sure they were given medication, and we learned nothing about how to apply our basic understanding of human beings to resolve their problems.  The professors either didn’t know how to, or didn’t dare, challenge the psychiatric orthodoxy about problems like “schizophrenia.”  I graduated in 2000, and immediately went to work as a mental health therapist working in an outpatient clinic with a mix of adults, children and families with a wide range of mental health issues.

While I spoke out some during my education, internship, and early employment, I mostly kept a low profile, so I did not threaten those who were educating me by appearing confrontational.  In retrospect, I think that was a good strategy, as it allowed me to focus on my own learning and to establish my credibility as a therapist.

A few years into my career, I was ready to take on something more challenging.  I had read about a new approach to hearing voices in the work of Paul Chadwick, who had researched groups for voice hearers run by professionals, using a CBT for psychosis perspective.  I emailed Paul and asked for particulars on his methodology, and he was kind enough to email me back with a complete guideline, which I then took to the manager of my agency and to the county mental health department, suggesting that I be allowed to organize a group.  At this time, I had no professional experience working with people who heard voices or who were diagnosed with such things as “schizophrenia” but I was lucky in that the manager of my agency, the late Martin Waechter, was a courageous guy who believed in supporting people in doing what they were passionate about, and the county was cooperative, so the group was formed.  I soon after learned about the Hearing Voices Network, and began incorporating their insights and methods into my groups as well.

I also began studying CBT for psychosis in earnest, reading lots of books and beginning to practice individual therapy with people struggling with psychotic experiences.  To avoid being alone in trying to make sense of this work, began making monthly contact with a consultant from the UK, Pauline Callcott, who was an expert in CBT for psychosis.  I found the fact that CBT for psychosis is well researched, or “evidence based,” was really helpful in explaining my work to other professionals, many of whom had been taught, erroneously, that psychotherapy with people diagnosed with “psychosis” or “schizophrenia” was generally ineffective.  I also found that CBT for psychosis as a method was highly compatible with the recovery movement in general, and some of the latest developments in CBT borrow very directly from that movement.

While I believe CBT is a great approach for “extreme states” such as those that get called psychosis, I am aware that it isn’t perfect.  Often CBT in general is taught in a somewhat narrow, dogmatic way, and some CBT practitioners see their role as being to reinforce traditional mental health approaches, including concepts of biological illness and “medications adherence” for life.  But the best CBT practitioners rise well above these defective approaches, and that is the part of the tradition that guides my practice.  I also see the heart of CBT, “balanced thinking” as being very compatible with the aim of the Open Dialogue treatment model.  Open Dialogue treatment has a remarkable success rate while being entirely non-dogmatic, as it aims simply to establish dialogue within a person’s social network.   I see this as essentially the same goal that CBT has in individual work of helping a person create a thoughtful dialogue within themselves, where different points of view can be explored.

Handling the Medication Issue:

One issue I had to confront in my work was how to handle the issue of medications.  As a non-medical professional, I was supposed to leave the medicating up to the medical people.  Or rather, what I was trained to do was to be very forthright in steering people toward medical treatment, as in “perhaps this is biochemical and you should go see a psychiatrist,” but I was never supposed to steer anyone away from medication, as that would allegedly be dangerous and outside the scope of my practice.  And yet, I knew people were being routinely lied to and made dependent on medications that in many cases were not helping or were making things worse.

While I can’t say I have developed the perfect approach to this dilemma, I have learned to take a role of supporting people to make their own thoughtful evaluations of the use or non-use of medications.  Instead of encouraging people to stay stable by staying on medications as the doctor prescribes, I suggest they can decide for themselves, but that they might be wise to make changes slowly and in conversation with various people including their prescriber.  By supporting a person’s own choices, I don’t take a medical role, but only the standard role of a therapist in helping a person to become aware of, and to choose from, a range of options.  This is tricky, as people’s ability to be thoughtful is frequently impaired by a number of factors, including their own mental health problems, the high volume of available misinformation, panic and pressure from people in the family, other professionals and people in their social network, as well as the brain numbing effects of many of the medications themselves.  But it is often possible to make substantial progress on this issue:  I have written more about this in my Guide to therapists in helping clients rely less on medications.

Changing the System through Education:

After a couple of years of organizing a voice hearers group and practicing CBT for psychosis, it was obvious I was bringing something really new to the community, and so a local managed care organization, LaneCare, agreed to sponsor a seminar for me to teach cognitive therapy for psychosis to other professionals.  This was a success, so I began doing more seminars, first just on cognitive therapy for psychosis, but then later adding a second day focusing on the (often denied) relationships between trauma and psychosis and how to help people who had experienced both.   I have sometimes been sponsored by professional groups, or by universities with continuing education programs, and I have sometimes organized such seminars myself.  I have now taught hundreds of professionals in a number of states, and I know at least some of these professionals are doing more progressive work as a result.

I am currently working with an organization, The International Society for the Psychological Treatments of the Schizophrenias and other Psychoses, US Chapter (ISPS-US), to organize web-based trainings on psychological approaches to psychosis that will be available to professionals everywhere, providing CEU’s, etc.  I am chairperson for their education committee, and we are hoping to have such trainings become available later this year.  I think the web approach will be particularly helpful for this topic, as people interested in learning alternative approaches are frequently very spread out geographically, and traditional organizations in many areas are often afraid to sponsor alternative approaches.  Those who want to be notified as these trainings become available can email me about their interest.  (The yearly ISPS conferences, and local area meetings, are another good way to learn about psychological and social approaches for psychosis.)

I also function as co-moderator for the listserv of ISPS-US.  This email discussion group covers a wide variety of topics related to the nature of psychosis, treatment, and recovery, and is a great place to get feedback on ideas or learn about new resources.

Handling Conflict:

Speaking out about the need for change can be risky in a mental health system that often reacts very defensively to criticism.  In some ways, working to change the mental health system’s beliefs and practices is very much like working to change the possibly unhelpful beliefs and practices of a person diagnosed with psychosis.  A direct assault on the beliefs of any human is likely to result in a defensive reaction that often leads to those beliefs becoming even more entrenched.  Yet going along with the beliefs as if they were true, or collusion, also strengthens those beliefs.  So what is a person to do?

In cognitive therapy, the aim is to identify the distress of the person to be helped, and then to engage in an open minded discussion that looks at all the evidence in order to better understand the distress and what can be done about it.  In this exploration, both the pros and cons of any belief can be explored, working with the middle ground between confrontation and collusion.  One comes across as uncertain, but curious, and persistently interested in exploring questions not resolved by prevailing dogmatic explanations.

To apply these methods to mental health system reform, it makes sense to first look at the areas in which the current mental health system is aware it has a problem, and then start looking to better understand those areas and to provide methods to improve outcomes.  Two problem areas even biologically oriented psychiatrists can acknowledge for example are how to help people with “symptoms” that aren’t helped by medications, and how to help people who refuse medications.  Once methods are introduced that can address such problems, one has credibility to ask other questions, such as how might we help people who currently are getting excess side effects as a result of medications, or whether we might improve outcomes if we do better at identifying people who may be able to recover without ever starting medications in the first place.

In working with people with beliefs that may be delusional, it is important to be humble and keep an open mind, exploring the evidence rather than just insisting that our own conclusions are correct:  often a detailed review finds that there is at least some grain of truth to the belief that sounded delusional, or the belief is a metaphorical expression of some truth even when it is not literally true.  I think it helps when we reformers keep the same sort of open mind and attention to the evidence when we engage in dialogue with those who defend extreme biological beliefs or the status quo.  Mental health questions are very complex, and often even those who are wrong about many things are right about some, and we all need to be learning as we go, even from our “opponents.”

It is not always clear how to find this midpoint between confrontation and collusion when dealing with the mental health system.  For one thing, it is very difficult to do so when speaking to a group, which may have very different people reacting in very different ways.  At one point, I was even “laid off” for no good reason from a part time job, after a new lead psychiatrist took offense to hearing my opinions which were expressed to a group of which he was a member.  In retrospect, I might have had more influence by speaking out more cautiously.  But while speaking out about problem areas in mental health care is risky, just colluding with defective care is not only risky but unethical.  We all need to keep experimenting to find ways to speak out which allows our message to get across.

Advocating for Change through Blogging:

I find psychosis to be a fascinating topic, which reaches into the core of what we understand about our own existence and the nature of reality.  Far from being a simple “illness,” mad experiences have within them the seeds of, both the best and the worst of what is possible for humanity.  While ideas about a possible positive side to psychosis have been criticized as being misleadingly “romantic,” there are now lots of scientific studies that are starting to explore what madness and successful creativity have in common.

Once we grasp that psychotic experiences are complex and multi-faceted, it becomes apparent that the mental health system should really be focused on helping people access the best of these experiences while leaving the worst behind, so that these individuals can eventually make their own unique contributions to the world instead of being labeled as permanently disabled and inferior.

I have been writing about these and other sorts of ideas for years now on my blog http://recoveryfromschizophrenia.org/ and I will now be contributing articles here at Mad in America as well.  I appreciate your interest, and I hope you find some of my perspectives helpful as you discover your own ways to work toward positive changes in mental health care.

In my last blog, I shared my experiences with the power of storytelling and its importance in the recovery process, my own and the hundreds of families that I have been privileged to meet over the years.

I invited readers to consider sharing their families’ recovery stories and to open to the possibility of the healing that is available when we connect with each other through this sharing. I am so thankful for those who reached out and did just that. I would like to share one of these stories with all of you.

I am grateful to the eloquent mother bear who took the time to touch my heart by sharing what was in hers. I am also grateful that she is willing to share her story here. I have changed the names below, but her story and her healing insights are real.

Dear Lisbeth,

Reflecting on the last five years, so many emotions have begun surfacing for me. I realize that I have placed myself in a sort of self-imposed isolation from the world since our trials with our Scott began. Fear of being judged or misunderstood by others has kept me there.

I have been stuck… merely getting through the days weeks and months. I have kept myself sealed in a “safe haven” that has thwarted my personal development and my ability to give back to others. In many ways, Scott’s illness has kept me in a kind of status-quo equilibrium.

At the same time, I have been enjoying the peace that has been afforded to us by Scott’s continuing recovery at CooperRiis for which I am so grateful. His recovery is mostly where I find my joy out of life.

But I am beginning to realize that I have kept myself from really living my life more fully and becoming the person I was meant to be. I want to do something that I can feel good about.

I am still very afraid to come out of this self-imposed shell, but I feel this opportunity to join with others through the Mother Bear Community Action Network is providential and has the potential to help me create some meaning out of the hell our family went through.

I am more than a little nervous but very excited about the possibility of helping other families by sharing our family’s recovery journey. I am grateful to be able to do so with the support of other mother bears like myself – those who have fought hard to find healing for our family members, often alone and seemingly against all odds.

As I write, the tears are flowing. I know I have so many built-up emotions that need to come out somehow. I know I have many stories that I still need to tell. And many stories I still need to hear.

I have begun reading the blogs on Mad in America. Your recent blog, A Mother Bear’s Story, resonated with me on so many levels. Your reassuring way of telling your story was so comforting and healing.

It made me realize that hearing from someone who has traveled the road to recovery before me, who has experienced similar challenges, helps me create a kind of road map that gives me reason to have hope.

I feel more equipped knowing what I can do today and where our family is headed. This road map, if you will, has taken some of the fear and worry out of my recovery journey. Knowing that our family is not alone in this journey gives me the confidence to believe we can overcome our obstacles together.

Thank you from the bottom of my heart,

Kelly, a newly minted mother bear

Mother Bear Community Action Network (Mother Bear CAN) is dedicated to uniting families to create a new mental health paradigm in which the whole person is supported, recovery is expected, hope is encouraged, the role of medication is carefully considered, the relationship between mental health and addiction is understood, and family and community are an important part of the healing process.

Mother Bear CAN is committed to empowering families through education about the many pathways to recovery, family-led community support, and access to recovery-oriented providers.

You can visit our growing network of mother bears (and father, sister, brother and other family bears) on Facebook at www.facebook.com/MotherBearCAN.

But in Healy’s blog, there was a reference to new data from the NIMH’s Treatment for Adolescents with Depression Study (TADS), and therein lies a much more important story.

In his blog, Healy published a table on suicidal events from the NIMH’s TADS study of antidepressants in youth, which had been prepared by a Swedish correspondent, Göran Högberg. That table put the suicidal risk associated with fluoxetine in a different light than had been presented in the published articles about the TADS study, and I thus asked Högberg where he had obtained this “updated data.” He pointed me to a 2009 article authored by Benedetto Vitiello, titled “Suicidal Events in the Treatment for Adolescents with Depression Study (TADS),” which was published in the Journal of Clinical Psychiatry. In particular, Högberg pointed me to a table titled “Timing of First Suicidal Event.”  And there, hidden in plain sight,  was the real suicide data from the TADS study.

The Background to the TADS Study

When the TADS results were first published, the practice of prescribing SSRIs to children was taking an evidence-based beating. First, in 2004 the FDA held a hearing on the increased risk of suicide with SSRIs in children, which led to a black box warning. In addition, the FDA’s Thomas Laughren reported at that meeting that these drugs—with the exception of fluoxetine—didn’t work in children either. Twelve of the 15 pediatric trials that had been conducted prior to that date had failed, as the SSRI had not bested placebo. The FDA, in fact, had rejected the application of six manufacturers seeking approval to sell their SSRIs to children.

Fluoxetine (Prozac) was the one SSRI that the FDA had approved for pediatric use. Two of the three positive studies reviewed by Laughren had come from trials of this drug. But as many critics pointed out, there was no reason to think that fluoxetine was any more effective in children than the other SSRIs. The percentage of children who responded to Prozac in the two positive trials was similar to the response rate in the twelve failed trials; Eli Lilly had simply been better at using biased trial designs to knock down the placebo response rate and thus make it appear that its drug worked. Indeed, Australian investigators who reviewed the trial data wrote in the British Medical Journal that the evidence for fluoxetine’s efficacy in children “is not convincing.” As such, they concluded, “recommending [any antidepressant] as a treatment option, let alone as first line treatment, would be inappropriate.”

The editors at Lancet came to a similar conclusion at that time: The truth, they wrote, was that SSRI antidepressants “were both ineffective and harmful in children.”

Such was the embattled status of SSRIs as a treatment for pediatric depression when the TADS investigators, in 2004, first announced their efficacy results. In the study, 439 youth, ages 12 to 17 years old, were randomized either to placebo, fluoxetine, cognitive behavior therapy (CBT), or a combination of CBT plus fluoxetine. At the end of 12 weeks, the response rate was highest for the combination group (71%), and lowest for the placebo group (35%). Although industry-funded trials hadn’t provided good evidence for the use of SSRIs in youth, this NIMH-funded study had done so, at least for fluoxetine.

At that time, several academic critics, including Jon Jureidini from Australia, noted that the two cognitive therapy groups in the TADS study were unblinded, and that in the only blinded comparison from the study, between fluoxetine and placebo, fluoxetine did not provide a statistically significant advantage over placebo on the primary endpoint, the children’s rating scale. As such, Jureidini concluded that the TADS studied showed “that fluoxetine, like all other antidepressants, is of doubtful clinical importance for children.” But this criticism was mostly ignored, and psychiatry now had its efficacy data for an SSRI in youth.

However, a safety problem did show up in the TADS study. There was an increased risk of suicidal events seen in the fluoxetine group compared to placebo, and the question of that risk hovered for a while over the trial, until it was basically dismissed in subsequent reports. However, with the publication of Vitiello’s 2009 report, and Göran Högberg’s alert reading of that study, we can see how the NIMH-funded investigators  finessed this risk, keeping its true scope hidden from the public.

The Suicide Data, Step by Step

The 12-Week Results: Then and Now

In 2006, Graham Emslie and the other TADS’ investigators published the 12-week “safety results” in the Journal of the American Academy of Child and Adolescent Psychiatry. They reported that in the 109 youth treated with fluoxetine, there were 10 suicidal events (9.2%), which was defined as either suicidal ideation or suicidal behavior/attempts. There were three such events in the 112 youth given a placebo (2.7%.) Two in the fluoxetine group attempted suicide, versus none in the placebo group.

Although this data clearly raised a concern, the investigators wrote that suicidal ideation rates had improved in all four groups during the trial, compared to baseline rates, and that nobody in the trial had actually committed suicide. Thus, the excess risk in the fluoxetine group was not seen as unduly alarming.

In Vitiello’s 2009 paper, we find slightly different data. In the 12-week study, there had actually been 12 suicidal events—rather than 10—in the 109 fluoxetine patients. There were three attempted suicides in the fluoxetine group, rather than two. Moreover, in the group of 112 placebo patients, there were 8 that were put on fluoxetine during the 12 weeks, and 2 of these 8 then suffered a suicidal event. But these 2 suicidal events in fluoxetine-treated patients were not included in Emslie’s 2006 report.

Thus, in Vitiello’s paper, we find this additional data: two more suicidal events among the 109 youth randomized to fluoxetine, one additional suicide attempt in the fluoxetine group, and two suicidal events among fluoxetine-treated patients in the placebo group.

The 36-Week Results: The Initial Report by the TADS Team

After the initial 12-week period, the study was unblinded (in the placebo and fluoxetine-only arms), and those in the placebo group who hadn’t done well were offered the choice of choosing one of the three active treatments—fluoxetine, CBT, or a combination of the two—during the 24-week followup.

In 2007, the “TADs Team” published the 36-week results for the three “active treatment” groups, but not for placebo, in the Archives of General Psychiatry.  They reported the following “suicidal events” at the end of 36 weeks:  16 of the 109 fluoxetine patients (14.7%) had such an event; 9 of 107 in the CBT-plus-fluoxetine group (8.4%); and 7 of 111 in the CBT-alone group (6.3%).

The researchers did not break down the suicidal events into their two components (suicidal ideation and suicidal attempts), and thus there is no data, in this article, on the number of youth in the study who attempted suicide. And while suicidal events were notably higher in the fluoxetine-only group, the researchers explained it away. They reasoned that CBT likely mitigated suicidal thoughts (as opposed to fluoxetine triggering such thoughts), and thus they concluded in the abstract, “adding CBT to medication enhances the safety of the medication.” (Emphasis added.)

Yet, once again, in Vitiello’s 2009 paper, we find additional suicidal data in the chart titled “Timing of First Suicidal Event,” and when it is included in the data analysis, we see that the risk of suicide, during the followup phase, was found only in fluoxetine-exposed patients.  There were no suicidal events in the CBT-alone group who didn’t take fluoxetine during this period. However,  some of the patients in the CBT-alone group were in fact exposed to fluoxetine during the 12-week-to-36-week period (we don’t know how many), and there  were two suicidal attempts in those fluoxetine-exposed patients.

Here is the bottom line: at the end of 36 weeks, of the 12 suicide attempts in the three groups, 11 were by youth taking fluoxetine.

The TADS Report on the 36-Week Results of the Placebo Group

In March of 2009, the TADS investigators, led by lead author Betsy Kennard, reported the 36-week safety data for all four groups in the American Journal of Psychiatry. As noted earlier, the 112 youth initially randomized to placebo were given the option, at the end of 12 weeks, to opt for one of the three active treatments.

The TADS reported that of the 112 youth assigned to the placebo/open group, 12 (10.7%) had a suicidal event between week 12 and week 36, compared with 32 of the 327 (9.8%) from the three active treatment groups. The researchers wrote that they had also compared suicidal events in the placebo/open group to those taking SSRIs, and the results were the same. There was no excess risk of suicide in those prescribed fluoxetine, compared to the placebo/open group.

In this article, it appeared that 15 of the 112 youth in the placebo/open group had a suicidal event during the 36 weeks (3 in the initial 12 weeks, and 12 in the 24-week followup). It was unclear how many of these events were suicidal ideation and how many involved suicide attempts, as this distinction was not reported. Then, in the discussion part of the paper, the researchers muddied things a bit more, writing that 15 of the 112 in the placebo/open group made “suicide attempts.”

Thus, the impression from this report was that there had been a fair number of suicidal events–and suicide attempts–in youth not exposed to fluoxetine. And having presented the 36-week safety data in this way, the TADS investigators drew this conclusion: Assignment to placebo during the initial treatment period “does not increase harm-related events, including suicidality.” Since placebo didn’t lead to increased suicidality, the use of placebo in research settings was “acceptable,” although “delaying the onset of meaningful treatment in non-research settings is not ethical or clinically appropriate.” Fluoxetine was safe, and in normal clinical care, pediatricians and psychiatrists should prescribe the drug as a first-line therapy (and ideally in combination with CBT.)

Now let’s return to the Vitiello paper and his table, which can tell us the real story about the placebo/open group, from start of the trial to the end of 36 weeks.

Here is the data:

Of the 112 youth randomized to placebo, 103 stayed on placebo during the initial 12 weeks, and three showed suicidal ideation during this period. There were eight in the placebo group who were put on fluoxetine during the initial 12 weeks, and two of these fluoxetine-taking youth developed suicidal ideation.

In the 12-week to 36-week followup, no youth in the placebo/open group who stayed off medication had a suicidal event. However, seven in the placebo/open group who went on fluoxetine suffered a suicidal event, including six who attempted suicide.

During the 36 weeks, no youth randomized into the placebo group attempted suicide while on placebo.

In Vitiello’s table of “first suicidal events,” there are 18 suicide attempts listed for all four groups. Of the 18, 17 occurred in youth on fluoxetine (94%). The one non-drug suicide attempt during the 36 weeks occurred in the CBT alone group, roughly at week five of the study.

In Vitiello’s table, there are 44 total suicidal events listed. Of the 44, 36 were in fluoxetine-treated patients (82%).

Here is a graphic that shows this data.

The Scandal

The TADS study has been used to justify the prescribing of Prozac—and really, by extension—other SSRIs to children and adolescents. The TADS researchers reported that the drug treatment was effective and didn’t increase the risk for suicidal events, as compared to placebo. Adding CBT to medication “enhances the safety of medication,” the TADS researchers wrote.

All the while, the real suicide data was being hidden. The TADS investigators weren’t disclosing the number of suicide attempts, and they weren’t reporting that all but one of the suicide attempts were in fluoxetine-treated youth. Instead, they made it appear that a similar number of suicidal events had been seen in the placebo group, and, at one point, even wrote that 15 in this group had attempted suicide.  The real suicide data didn’t appear until Vitiello’s 2009 article, and even then it had to be dug out from a table, which Göran Högberg did.

This, of course, is a hiding of data that puts the lives of children at risk. Maria Bradshaw is blogging on this site, and she has written how her son Toran committed suicide 15 days after being prescribed Prozac. Now imagine if the suicide data from the TADS study had been properly published.  Seventeen of the 18 suicide attempts in the study had been in youth on Prozac. Wouldn’t that have served as a warning signal to psychiatrists in New Zealand? Wouldn’t it have served as a warning signal to Maria Bradshaw? Wouldn’t it have served as a warning signal to her son, when he became agitated and aggressive?

And so we can ask: Would Toran be alive today if not for this scandal? And how many other youth have lost their lives in this way, unaware of the real suicide data in the TADS trial?

Overall the show was very good. However, for anyone who has read Kirsch’s work the idea that this is new information was a little surprising, as he first showed that there was a minimal difference between SSRIs and placebos approximately 14 years ago. The other slightly misleading part of the show was how they presented those who “disagreed” with him. At this point even within mainstream psychiatry this is virtually a non-existent debate, and it is now well acknowledged that the difference between placebo and antidepressant drug effect is minimal. If you listen closely to the scientists who 60 Minutes interviewed to get the other side even they didn’t really disagree with Kirsch’s main findings.

The current state of the SSRI debate amongst Prozac’s proponents is as follows: At one end of the spectrum, some, such as Michael Thase, a clinical trial researcher and medication proponent, say that for every ten people taking an antidepressant the drug helps one person. At the other end of the spectrum there are those who argue that it helps three people. Or put another way: Are SSRIs effective for 10% or 33% of the patients that receive them? See: http://www.psychiatrictimes.com/clinical-scales/display/article/10168/48136

Even the pharmaceutical companies acknowledge that the difference between drug and placebo is minimal. In 2001, an advertisement for Wellbutrin had a graph showing that the difference in efficacy between Wellbutrin and placebo is only 10%. This does not come from a critic, but was on wellbutrin.com in the early 2000′s.

If everyone agrees that the true drug effect is minimal then what is the disagreement about? The argument comes down to the significance of these low efficacy numbers. There are some, like Thase, who take the public health argument, which goes as follows: The medication helps one (or 2) out of every ten people which might not sound like much, but if you give the medication to ten million people then you are potentially helping a million people. This brings up the obvious point about potentially giving side-effects to the other nine million people. Or most problematically: Do patients understand their odds when they start taking these medications?

Some Background

In 1998, Kirsch compiled and analyzed data from numerous published studies that had compared anti-depressants to placebo. Kirsch’s meta-analysis found that the standard medications were only slightly better than placebo, and the difference was virtually insignificant. Not surprisingly the critics were harsh as Kirsch’s study called into question the entire rational and justification for the millions of anti-depressant prescriptions written every year. They claimed that Kirsch’s study was biased because of the studies he included in his analysis. So, in a stroke of genius, Kirsch, Scoboria, and Moore used the Freedom of Information of Act to gain access to all the studies that the drug companies had submitted to the FDA for the purpose of getting these drugs approved. They re-ran their analysis with the new data and again found that the placebo response was responsible for the majority of the effect. In the case of Prozac, the placebo response duplicated 89% of the drug response. Keep in mind that this was done with the companies own studies, so it is hard to find a more favorable database for the medications.

Where it got interesting was with the critics. The same issue of Prevention and Treatment that published Kirsch’s analysis of the pharmaceutical company data also published several commentaries-both pro and con. Kirsch’s critics did not argue with his main findings, instead they quibbled about the interpretation of the results. In their reply, Kirsch and his colleagues bluntly stated: “We are very heartened by the thoughtful responses to our article. Unlike some of the responses to a previous meta-analysis of antidepressant drug effects, there is now unanimous agreement among commentators that the mean difference between response to antidepressant drugs and response to inert placebo is very small.” One of the essays by a clinical trial researcher went on to explain that this miniscule difference between placebo and medication is commonly referred to by researchers, FDA reviewers, and a small group of critics as the “dirty little secret.”

In 2002, an interesting study in JAMA examined the effect of St. John’s Wort on depression and also seemed to confirm Kirsch’s results (2002, Vol. 287, p. 1807). The authors found that on most measures St. John’s Wort was no better than a placebo. This was blared out over the radio waves, prominently reported in the papers, and told to all Americans on the nightly news. Yet most of the early press accounts missed the more significant part of the story which was that there were three treatment groups in this study. Zoloft, one of the most common antidepressants, was also included in this study, and Zoloft was no better than placebo either.

It will be interesting to see how patients respond to these latest revelations on 60 Minutes. The facts have been around for a long time and are easily accessible on the Internet. But is this information passed along to patients when they are prescribed antidepressants?

I got to see that entirely different course of action could light up an infinately greater runway for a child and their family instead of taking a course of actions that so often endangers a child with unforeseen side-effects, perhaps the worst of which is the meta message to the child that something is drastically wrong with them in regard to their life force because neither they or their parents or teachers can handle it – we need to make their intensity go away.

If we really saw life force/ intensity as a blessing that could be transformed into greatness we would never ever dream of doing that. Life force is precious. It is common to us all and some simply have the gift of having more than others. Without it we’d be lost. Without it we might not even be able to get out of bed. Without it we wouldn’t be able to live our dreams or live or fulfill our passionate lives. We need our future generations of children to have their intensity intact so that can do the great things we need them to do. We can’t afford for future generations to be lost with their intensity suppressed.

Besides, at most medications simply give the illussion of improvement. In a way “improvement” pale in comparison to what I found to be consistently obtainable “transformation.” Before the meds kick in and after they wear off the problems are still there – nothing has changed and there has been zero healing. Isn’t healing what we want. Don’t parents and teachers deep down simply want all along to see this child use their intensity in great ways. With medications the parent is none the wiser on how to best help this child nor is the child any the wiser on how to best help themselves. There must be a better way and there is.

The reason I can say this is that by grace I stumbled upon devising a method of helping these children that I came to eventually call The Nurtured heat Approach and that is what I will write about mostly in this blog. I will do my best to tell you how the approach came to be and what kinds of impacts it is having, as well as giving you some sense of what it is and how it works. As this is my first blog I will save most of it for subsequent notes but for now I want to say that what I found through this work has given me great hope and that is what I want to inspire in you.

I don’t want to waste my time fighting the pharmaceutical companies. Other people have that talent and I applaud that. I simply want to show over and over again that with the right kind of approach these very same children of concern can easily be “transformed” to be the best children on the planet.

I’ll give you one example for now – Tolson Elementary in Tucson, Arizona – has been using this approach now for over 10 years and in since that time, as a school with well over 80% free and reduced lunch and other demograpgics that go with an at-risk population, they went from a school with the highest rates of suspensions, bullying, teacher attrition, use of diagnosis and medications in their large school district – a school designated as failing and with a high rate of special education – to a school that is designated as excelling – going from over 15% special education to less than 2%, to almost zero bullying, suspesions, teacher attrition, with zero use of diagnosis and medications and more.

They did this because they began changing drastically the way they relate to children. This is what I will describe as these blog posts unfold and evolve.

I certainly believe in symptoms. I believe there are kids loaded with symptoms that frustrate, annoy and drive parents and teachers to distraction. However I also believe that the energy that drives these very same symptoms can be rerouted to greatness. Greatness can be awakened in the most difficult children with methods that are geared to how these children respond to relationship and energy. Then we don’t have to hope that they will find a “way” to channel their energies to activities like scouting or dance, baseball or soccor or any other activity. Not that these are bad. It’s just that there’s a better solution – where the child awakens to who they really are as a great person and as that assimilates and integrate then we will have a child who acts-out in an entirely different way – they act-out in greatness and manifest that wherever they go.

So I hope I have caught your interest and I will be back with more when the time is right.

The presenter explained that historically, counseling centers viewed most of the students presenting for services as experiencing adjustment problems in transitioning to adult roles.  Assuming adult responsibilities, moving away from home, pressures to achieve high grades in a competitive atmosphere were viewed as adjustments that understandably could create some temporary angst.  In contrast to the previous perspective, now more counseling centers are run by psychiatrists trained in identifying major mental disorders.

What the presenter failed to address is whether the shift in orientation has resulted in better outcomes.  More young people are being labeled and medicated; that’s a fact.  According to the presenter, prescriptions for antidepressants exceed prescriptions for antibiotics at the presenter’s university.  Since the presenter did not even address the issue of whether the change in orientation represents a good thing, I decided to do some investigating.

Suicide prevalence seemed an obvious index that might offer a barometer for assessing whether the shift in thinking is associated with better outcomes.  The CDC report informs us that suicide rates have tripled since 1950s for all persons 15 to 24 years of age.  The American Association of Suicidology reports that suicide rates for this age group remained stably high between the late 1970s and mid-1990s, but have declined by 28.5% since 1994, while still exceeding rates in earlier periods.  In contrast to rates of suicide for young people generally, suicide rates on college campuses have declined since 1960 which is accounted for by more females (who have far lower suicide rates than males) being included in later samples (Schwartz, 2006).  Others have specifically examined how antidepressant treatment availability relates to rates of suicide.  Kessler et al. (2005) contrasted rates of suicidal behavior for all ages during 1990-1992 with 2001-2003 and rates of psychiatric treatment in the two epochs.  Kessler et al. concluded, “Despite a dramatic increase in treatment, no significant decrease occurred in suicidal thoughts, plans, gestures, or attempts in the United States during the 1990s.”   Thus, there is little evidence that the dramatic shift in orientation from a developmental perspective to a pathology orientation has improved outcomes.

During the presentation, conspicuous by its absence was the lack of discussion of the black box warning from the FDA.   The FDA advisory states “Antidepressants increased the risk compared to placebo of suicidal thinking and behavior (suicidality) in children, adolescents, and young adults in short-term studies of major depressive disorder (MDD) and other psychiatric disorders.”  The finding of more thoughts about suicide in antidepressant treated compared to placebo treated was replicated in the “Treatment of Adolescents with Depression Study”, a large multisite study examining antidepressant efficacy in youth.  During the presentation there was no discussion of whether the counseling center takes any extra precautions in monitoring the students who are placed on antidepressants.  Given, that Grand Rounds are part of the training for new psychiatrists, the topic of how to discuss these issues with patients and how to properly monitor might have been appropriate.

In some states, there are informed consent laws.  Doctors are required to discuss both the benefits and potential harm of recommended treatments.  Many people remain on antidepressants for over two years.  The problem for a young person opting to take antidepressants is getting off of them.  Possible withdrawal symptoms include mania, motor problems in the jaw, depression and anxiety, and nausea (Ceccherini-Nelli et al. ,1993; Haddad, 1997; Lejoyeux & Adés, 1997; Stoukides & Stoukides, 1991).  For young people beginning careers, opting to take an antidepressant during college means that they may need time off from work later to detox from prescription drugs.  The imperative of discontinuing antidepressants is high for women.  For young women, continuing on antidepressants during pregnancy carries severe consequences.  Antidepressants are associated with increased risk of autism in the baby (Croen, Grether, Yoshida, Odouli, & Hendrick, 2011).  Antidepressants consumed during gestation are associated with heart malformations in the baby and problems in establishing proper lung function after birth (Chambers et al., 2006; Gentile, 2011; Udechuku, Nguyen, Hill, & Szego, 2010).  During the presentation, there was no indication that a cost-benefit analysis is routinely addressed prior to providing prescriptions.

Later in the week, I attended the graduate Biology seminar at another university.  The presenter discussed the efficacy of curcumin (found in turmeric) in preventing breast cancers and other cancers.  She presented her data, which were pretty convincing.  I asked the presenter about curcumin as an antidepressant, which I knew had been shown to be effective in animal work, and she told me that curcumin is being tested in clinical trials as an antidepressant.  As I sat there, I wondered why student counseling centers are not recommending interventions with fewer side effects.  There is a literature on omega-3s preventing and ameliorating depression and anxiety.  Recently, Glaser and Kiecolt-Glaser published a study showing that omega-3s are effective in reducing anxiety in medical students during examinations.  There is a literature on the antidepressant effects of exercise.  Are psychiatrists totally ignorant of these other interventions which have been proven to impact biological causes of behavioral depression?   To their credit, counseling centers do still offer counseling along with drugs.  However, there was little indication that psychiatrists give time for the psychotherapy to work prior to providing medications.  What could be the rationale for prescribing medications with black box warnings and severe withdrawal symptoms when efficacious and less harmful treatments are available?  Of course, there was also no mention of Irving Kirsch’s work on the lack of efficacy of antidepressants, anyway.  I guess the psychiatrists will have to watch Leslie Stahl’s “60 Minutes” broadcast this Sunday to learn about this.

Chambers, C. D., Hernandez-Diaz, S., Van Marter, L.J., Werier, M. M., Louik, C., Jones, K.L., Mitchell, A. A. (2006).  Selective serotonin-reuptake inhibitors and risk of persistent pulmonary hypertension of the newborn.  New England Journal of Medicine, 354(6), 579-587.

Croen, L. A., Grether, J.K., Yoshida, C. K., Odouli, R., & Hendrick, V.  (2011).  Antidepressant use during pregnancy and childhood autism spectrum disorders.  Archives of General Psychiatry, 68 (11), 1104-1112.

Kessler, R. C., Berglund, P., Borges, G., Nock, M., Wang, P. S.  (2005).  Trends in suicide ideation, plans, gestures, and attempts in the United States, 1990-1992 to 2001-2003.  JAMA, 283, 20, 2487-2495.

Kiecolt-Glaser, J.K., Belury, M. A., Andridge, R., Malarkey, W.B., & Glaser, R.  (2011).  Omega-3 supplementation lowers inflammation and anxiety in medical students:  A randomized controlled trial.  Brain, Behavior, and Immunity, 25 (8), 1725-1734.

Schwartz, A.J.  (2006).  Four eras of study of college student suicide in the United States:  1920-2004.  Journal of the American College Health, 54 (6), 353-366.

Schwartz, A. J.  (2006).  College student suicide in the United States:  1990-1991 through 2003-2004.  Journal of the American College Health, 54 (6), 341-352.

TADS (2007).  The Treatment for Adolescents with Depression Study.  Archives of General Psychiatry, 64(10), 1132-1144.

Here are some thoughts that I wanted to share with you about how to effectively serve your clients, friends and loved ones who are having an experience of madness. These ideas may also be of help in doing self-care if you are entering or traversing a madness process yourself.

They are followed by my quite personal and un-orthodox neo-Jungian formulation of madness.

That formulation and these practical suggestions are mainly gleaned from my own un-medicated, untreated experience of madness in my early twenties, and from working daily as a primary therapist for almost 30 years with actively mad clients using a Jungian/Transpersonal, Laingian approach.

During that time I worked for over 3 years at the  24/7, alternative, 20 bed, free standing, transpersonally oriented, acute care open door program called I-ward in Martinez California where no medications or leather restraints were used or diagnoses given to consumers who were acutely mad, which I describe in my last blog- “Remembering a Medication-Free Madness Sanctuary.”

I also helped develop a similar 5 bed program in Marin County, Passages In, that was short lived. I did several months of internship at St. George’s Homes in Berkeley where a similar Jungian/Transpersonal approach was used.

After that I worked for 25 years in public sector clinics and on a mobile crisis team as well as in private practice. Even in those settings, most of the mad clients I served were not on medication.

I also am drawing on my doctoral research follow-up study done on the San Francisco based, medication free Diabasis House sanctuary for clients in acute madness, and my 20 year relationship with its founder, Jungian psychiatrist John Weir Perry.

But my early experience of serving from age 18 as a medic in the Army and Air Force Reserve for 8 years and then as a State Hospital attendant with profoundly developmentally delayed men- and for 2 years as an orderly at a nursing home with brain damaged, demented and Alzheimer’s patients, also informs my advice on how to relate with love to people in physical and emotional pain and suffering.

So, here are two basic principles for helping someone or yourself in a madness process which are distilled from my own personal and work experience and  from the study of successful Bay Area alternative programs.

1. Keep suspending your disbelief

Every time you tell yourself or believe that the mad  person you are being with, or you yourself has a tragic, lifelong, and threatening illness that has no inherent meaning or purpose- such as a neuro-biological, genetically based diseased brain, an incurable thought disorder, or chemical  brain imbalance- try to suspend your disbelief that another explanation may be possible.

Instead, hold the belief that they or you are going through a necessary, meaningful, developmental, initiatory, trans-formative, transpersonal/archetypal, symbolic and/or purposive natural process – one that is neither pathological nor indicative of a genetically inherited, neuro-biological brain disorder.

Hold the belief that, as Dr. Karl Menninger famously said, it is possible to emerge from the madness process- “Weller than well!”

2. Be Receptive

Once you are able to stay open to the possibility that this process is an important, potentially transformative natural life event, draw on all your skills of receptivity and empathy. Begin by simply listening and receiving the person or your own experience with an open, compassionate heart. Let the gentle feelings of love that you would feel for a loved one who is frightened and suffering be present within you.

As this process unfolds, gently invite and encourage the expression of both the emotional and symbolic content. People in a madness process may need to use modalities such as drawing, painting, movement and evocative music to express themselves in addition to or instead of speech. Somatic modalities of touch and bodywork can be especially welcomed and grounding and soothing.

The common and overwhelming evidence from  the Agnews project, Diabasis House, I-Ward, Soteria House and other alternative programs from all over the world, confirms the basic need for a person in such a madness process to be believed in, listened to and lovingly received and responded to in this way.

Some years ago I co-led a workshop on madness with  Loren Mosher of Soteria and Mathew Morrisey of the medication free sanctuary Burch House. We all agreed that the necessary and sufficient condition for someone to traverse a madness process into wholeness, was the presence of heart centered people around them who received the person’s emotional and symbolic process with a certain level of compassion that I would call love.. Those loving people did not need to be professionally trained.

This view was also expressed by R.D. Laing when asked- “Dr. Laing, I still don’t understand the theoretical basis of your approach to schizophrenia. Could you please explain?”

“Certainly,” said Laing- “The basis is love. I don’t see how you or I can be of any help to our clients in a visionary state unless we are capable of experiencing a feeling of love for them. Therapy, as opposed to mere treatment requires that we have a capacity for loving kindness and compassion.”

The questioner was still perplexed and asked- “But Dr. Laing, what is your clinical methodology for developing this approach?’

A recent Facebook post from a psychiatic nurse shows how the very subtle, even non-verbal communication of the energy of love can dramatically effect someone who is mad-

“I remember once bathing a schizophrenic(that was her didgnosis)woman who had not responded or spoken for 20 years. I remember feeling some affection and sadness for her as I washed her gently in the tub. All of a sudden she started to respond and called me mommy and wole up from her catatonic state. The care, the loving touch got through to her.. I will never forget that.”

It is the same very familiar feeling tone of caring love that we often feel for our children or mates as we nurse them when they are ill, that can be evoked between us and someone in a madness process if we open our hearts beyond what professional mental health training teaches.

The nurse’s story makes me remember working with a man who was almost 80 years old who was diagnosed bi-polar and who had been in the hospital many times. Even though I was almost 30 years younger, because I sat with him with my heart very open and asked for his dreams, after some time he came with a hugley healing dream.

He had been depressed his whole life and said that his mother was always vey harsh with him and had never in his childhood told him that she loved him or touched him with love or hugged him..

He reported his healing dream with tears of gratitude and joy because in it he was a young boy again, held warmly and rocked for a very long time by his mother who repeated wonderful terms of endearment and told him over and over that she loved him..

He then said-’And the strangest thing was Michael, she was bald just like you are.’

So,.in that spirit of risking to call what we may feel for ourselves or others in a madness process as being in fact love, here are observations I slowly learned for myself the past 30 years about how to more specifically make yourself available to anyone in a madness process. The list is only an attempt to begin a conversation and exploration of all the possible ways we can be of service.

• Keep a focus of energy in the hara chakra below your navel.

• With your stomach muscles relaxed, feel yourself do deep and slow belly breathing.

• Drop down your shoulders.

• Let your face become calm and relaxed–not becoming pensive or quizzical.

• Let your voice come up from your hara in lower octaves, emerging with the energy of your heart chakra as you speak..

• Let your kindly, gentle, even loving and tender feelings of empathy and compassion arise in your heart chakra for a fellow human being in distress and suffering who is sharing the room with you.

• Allow silences.

• Don’t seek direct eye contact if it seems to make the person uncomfortable.

• The person may be in a very heightened state of awareness and is processing minute inflections in your voice and body language.

• Their ability to see into you may surprise you as uncanny and psychic.

• In this state they may directly or symbolically tell you secret things about yourself that are disquieting.

• If the person is hostile increase your vigilance on your own physical and emotional markers of receptivity.

• Because you may find that you may involuntarily be holding your breath.

• You may notice your throat becomes constricted and your voice goes up in octaves.

• You may notice you are opening your eyes very widely and blinking a lot.

• You may feel the need to fold your arms across your chest or cross your legs.

• To the degree that you can be aware of these shifts in you prompted by anxiety, you can refrain from them as much as possible and remain in the open, receptive, emotional and physical posture with a potentially physically or verbally assaultive person in a madness process.

• The more you stay grounded and centered the more they will calm down, will not sense a fight or flight visceral response to them building in you.

• Being with agitated people in a madness process is kind of like practicing an internal martial art at times- a form of Aikido.

Madness is an ancient form of uncivilized wildness. It also is a sacred mystery.

Emily Dickinson said it well-

“Much madness is divinest Sense–
To a discerning eye–
Much sense–the starkest Madness–
‘Tis the Majority In this, as All prevail–
Assent–and you are sane–
demur–and you are straightaway dangerous
and handled with a chain.”

If you are given the opportunity to serve those traversing the mysterious depths and heights of madness count yourself lucky, especially if they are not emotionally anesthetized by medication.

The efficacy results from the Northern California based Agnews Project, I-Ward, Diabasis, and Soteria House all clearly demonstrate that without medication, most first time, acute madness crises will in fact be the occasion for a life changing developmental and possibly even a spiritual transformation if a 24/7 alternative, non-medical model sanctuary is provided.

My experience and research into alternative approaches for serving those in an acute madness process has led me to believe that at least 75% of the consumers who become trapped in the mental health system could have avoided that fate if acute care, 24/7 Bay Area sanctuaries like Diabasis House, Soteria and I-Ward (where I worked )were available at first contact with the system.

They never would have gone on to be labeled Schizophrenic or Bi-Polar or Schizo-Affective.

But even for those not blessed to have a sanctuary to go to during their initial excursions into madness, hope is not to be lost.

John Perry acknowledged that my utilizing Jungian dream work with consumers who had been medicated for years such as the older man I told about above, extended his work on acute episode madness into another level. He had not worked with long term consumers.

After all the sanctuaries were forced to close in the Bay Area, I got to do therapy with long term people who were mad as well as acute phase consumers in clinic settings.

Against conventional wisdom and the wishes of my clinical supervisor at work, but with the tentative encouragement of doctoral program clinical supervisors John Perry, David Lukoff and Jungian, Tanya Wilkinson, I started asking consumers to share their dreams. For many, their psyches had just been waiting to be asked!

The buried, un-experienced, un-named, un-expressed affect/emotion that was the prime causal factor in their becoming mad in the first place was re-animated as archetypal dreams of emotional power and symbolic expression came pouring forth.

It took years for some people for their psyche to do it’s work of resurrection and to allow the person to have access to the full range of human emotions without becoming mad as before, whenever too strong and intense feelings would come alive.

One of the many contibutions that John Perry made to a Jungian approach to madness, was to wonderfully re-defined the meaning of ‘archetype’ to mean- ‘affect-image.’ He meant that affect and the image are co-equals of archetypal activation and experience.

I would take that further and say that affect, emotion is the source of all imagery, every word, thought, facial expression, auditory and visual hallucination, so-called delusion.

We are first and foremost emotional beings who from conception begin to rage, weep and laugh and hide in terror and dance for joy- and seek to receive and give the emotion of love.

For me, by definition, everyone who is mad is in an archetypal, transpersonal experience, just as everyone who isn’t mad is too.

The artificial distinctions that label some mad people chronic schizophrenics and others blessed to be in a spiritual emergency don’t exist for me. The mumbling, homeless mad person is just as deserving of our seeing that they are in a spiritual wasteland where the Gods of the wasteland rule as the person who is having amazing, visionary experiences that we are inspired and maybe dazzled by,- who brings Hermes or Persephone or Kwan Yin into the room with us as often happened on I-Ward.

The New Age and sometimes Transpersonal Psychology over emphasis on defining spirituality and spiritual emergency and spiritual emergence as being only enlightening and uplifting is an unfortunate mistake. The elevator goes down as well as up.

Spiritual experience means to me the contact with spiritual energy. From my own initiatory madness some of it is dark I know. Some of it is light I know. Darkness initiates just as much as light does. It turns out that both light, love emanating energy and rightly feared dark, dangerous spiritual energies are sometimes active in bringing balance through transformative madness as well as in- ‘normal’ life.

Based on my experiences on I-Ward which I describe in my last blog, I believe that if you spend much time with people in acute madness experiences who aren’t medicated you will encounter an uncanny presence of what can be viewed as spiritual light as well as darkness.

That is another reason madness has been feared as being demonic until science/medicine said it was all in people’s heads- and came up with perverse ways to silence it that at times would make an inquisitor smile.

Jung said that: “Psychiatry has turned the Gods into diseases.”

Unfortunately Jung and most Jungians have turned the Gods(and Goddesses) into archetypes: named and minutely described denizens of the collective unconscious that we can have an ‘as if’ relationship with at weekend workshops and schoomze with once and a while in our dreams. Unless we go mad and then we know them intimately.

Traditional Jungians have identified the forms, the affect and imagery tracings of the gods from dreams and visions, but rarely ask them into the consulting room for an embodied visit.

They haven’t turned the gods into diseases, but they have not honored them through the timeless practice of ritual where the gods were fervently called forth to have their way with the initiate. The 50 minute hour with some active imagination is about as wild as it gets!

Jung greatly feared going the route of Nietzsche who died raving mad. Perry extended Jung’s work on madness because he named it as purposive if welcomed with open arms.

Jung exhorted analysts to terminate an analysis if a single dream of a patient looked like a sign of an- ‘incipient psychosis.’

Please don’t make the mistake of too greatly fearing madness or underestimating the spiritual dimension of our human birthright as you may practice your own shamanic vocation or seek to understand the mysteries of others or your own madness.

One of my favorite Jung quotes points to that mystery-

“These inner motives spring from a deep source that is not made by consciousness and is not under it’s control. In the mythology of earlier times these forces were called mana, or spirits, demons or gods. They are as active today as they ever were…the one thing we refuse to admit is that we are dependent on ‘powers’ that are beyond our control.”

In my experience, behind every image, thought and word, there is an emotion first. Behind every emotion there is a universal so-called archetypal power and emotional energy that must come forth as imagery that expresses that deep emotion. Behind every archetype is a totally autonomous living force of deity that has no historical bounds, no time bound archetypal form.

These ancient and emerging deities, that use our lives and bodies as their playgrounds and every second hold us in sway as they incarnate themselves in us, ever emerging anew, arise out of a greater unifying mystery of benevolent silence.

Weep for the prophets and so-called psychotic visionaries who are robbed of their life giving gifts from the Gods by our culture of fear and human arrogance. And weep for us that we still treat the mad ones among us as lepers when they are, and always have been a divine source of the mana we need to survive on earth.

As a first ever, initial madness process begins, the psyche is faced with such overpowering unbridled emotion that the inner emotional charge grows to become profoundly existential in nature and magnitude.

As the person faces the initiatory challenge of young adulthood in such an all pervasive liminal depth, the ego, the frail manager of consensual reality, simply is engulfed.

The ego is swamped in the soul depth liminality of an emotional power that triggers all forms of desperate, seemingly delusional attempts to give some fragmented sense of meaning to the inner experience.

It is a visceral, first chakra existential experience that seizes the individual.  It is the emotional response to being lost. It may be experienced mainly as one feeling exalted and indestructible at first or feeling totally terrified, doomed and bewildered.

The experience may also fluctuate between being plunged into the underworld and being drawn up into heavenly realms with amazing rapidity.

In these dramatic ways the process mirrors shamanic initiatory ordeals described in every cultural lineage.

In any event, if not made numb by medication, the psyche creates a mythic story along predictable lines. The drama is played out on the stage of the central archetype, the Self, where every kind of polarity may be experienced and transmuted: good/evil, dark/light, male/female, life/death, terror/serenity, grief/joy, desolation/birth.

All  the emotion generated and image fueled polarities may be contained in the mandala crucible of the relationship that you, the loving caregiver, creates with the person who is mad. In that container with you, all the polarities can be balanced into a cohesive unity.

That loving feeling toned relationship with you is crucial, it is a prerequisite for transformation and healing to occur.. Without a loving ‘other’ to make the mandala crucible which gets forged by the connection of their two hearts and psyches, the mad person spins on out of control.

Acute madness is the ultimate identity crisis and is for some, a potentially shamanic initiation. Our feeble, arrogant egos usually assume we are master of knowing “Who am I?”

As the pre-madness/visionary ego floats in this ignorant vulnerability over an abyss of the unfathomable depth of the collective unconscious and spirit world of gods, demons and ghosts, the ego is always just a few nights without sleep away from psychosis, or a drop of LSD away from psychosis, or from a psychosis triggered by a kundalini eruption, or a loved ones sudden death.

The unprepared ego of an especially vulnerable young adult facing autonomous functioning separate from their family is at risk from drowning in the depth of the affect and images of the collective unconscious.

It is remarkable that the childhood tasks of such a vulnerable ego do not overwhelm it. However, in the late teens and young adulthood comes the awareness of mortality and the knowing that physical survival and social acceptance and success depend on functioning separately from parents.

The broad range of every possible human emotion I mentioned above that is our human birthright and imperative to experience and claim, makes up the magma of the madness eruption that is too strong for the young adult.

These emotions come boiling up to the surface because the young person has hit the developmental hurdle of young adulthood.. In their families, full emotional experience and expression was not allowed and made possible for them to sufficiently master.

Now the psyche will try and rectify that through transformative madness.

Because of the power of our toxic and soulless culture to create enormous deficits in our family systems, most notably an epidemic of the lack of a strong infant-parental love bond, when faced with the often cruelly threatening social Darwinism cultural gauntlet one must traverse into young adulthood, the pre-madness ego for some is simply not prepared to traverse the hero’s journey and initiation across so much underlying liminality.

We can’t underestimate the corrosive and pervasive effects on vulnerable children and young adults that our largely loveless and spiritually barren patriarchal culture inflicts through degradation ceremonies of endless winner-loser competitions where shame and guilt and fear of punishment break the spirits and hearts of so many.

For such vulnerable young persons, an affect of an unnamed existential terror, the dreadful sense of an abyss of yawning ontological insecurity seizes them. This overpowering challenge may then trigger an attempted visionary alternative restructuring of the ego through a radical immersion in a mythical inner struggle for adult independence.

This inner heroic struggle for ones future life is carried out at the archetypal center of the Self, if the young person’s process is not aborted, if they are given sanctuary and not medication.

I have seen them come out the other side with a new, heroic ego strength that grew out of their trial by fire.

As the great R.D. Laing said after witnessing and attending many on such a journey at the Kingsley Hall sanctuary he provided:

‘From the alienated starting point of our pseudo-sanity, everything is equivocal. Our sanity is not true ‘sanity.’ Their madness is not true ‘madness.’ The madness that we encounter in ‘patients’ is a gross travesty, a mockery, a grotesque caricature of what the natural healing of that estranged integration we call sanity might be. True sanity entails in one way or another the dissolution of the normal ego, that false self competently adjusted to our alienated social reality; the emergence of the ‘inner’ archetypal mediators of divine power, and through this death and rebirth, and the eventual re-establishment of a new kind of ego functioning, the ego now being the servant of the divine, no longer it’s betrayer.’

PART II – ISSUES TO BE ADDRESSED, STRATEGIES TO ADDRESS THEM

Treatment/medication compliance is the “quality of care” measure that along with “clinical outcomes” and “experience of care” will be employed to determine whether the homes’ Goal 3, “Improve Outcomes for Persons with Mental Illness and/or Substance Abuse Disorders,” has been achieved. It represents for me, and would apparently for Giannakali (1), the most dubious and yet the most instructive aspect of the mental health homes’ objectives, since it exposes the homes’ unspoken social control agenda and a potentially coercive methodology. Medication compliance will be tracked via DOH’s computerized records of prescriptions written and filled. If a specified period of time elapses – whether several weeks or months, depending on the medications in question – without a prescription for a customarily prescribed medication being written or filled, the responsible provider will be notified – it’s unclear to me whether by a State or network monitor – will be expected to provide and/or query the enrollee for an explanation and will be required to present a plan of action to continue the required treatment (2).

CARE MONITORING: SOCIAL CONTROL, VIOLENCE AND TREATMENT COMPLIANCE

This procedure has its roots in the State’s “Care Monitoring” initiative, piloted in Brooklyn in 2008 and then implemented throughout the State after an angry and apparently deluded mental patient killed a Manhattan psychotherapist (3). To quell the public outcry that ensued, a high level commission of State and City officials was formed and recommended a plan whose focus was treatment compliance, particularly as regarded medication, by persons diagnosed with serious mental illnesses. Its underlying operative assumption, publicly voiced by Commissioner Hogan at a Brooklyn meeting I attended just prior to care monitoring’s initiation, was that mentally ill persons who did not take anti-psychotic medications had a greater potential for violence than their medication compliant peers. In short, treatment/ medication compliance, care monitoring’s objective, would serve to control violent acting out behavior.

In the case management programs I was directing at the time, we experienced care monitoring as intrusive, wasteful and often unnecessary. For example, many of our clients presumed to be medication non-compliant because they had not filled a prescription at their neighborhood pharmacies in two or more months turned out to be receiving depot medications at their neighborhood mental health clinics. Further, my program supervisors spent so much time tracking down the information requested by the care monitors, who were employed by the private agency contracted to oversee the initiative’s implementation, that we did a time/motion study to document the program-time devoted to that endeavor. We reported our results to the provider advisory committee attached to the initiative, but we received only meant-to-be-mollifying assurances that everyone involved was aware of the problem. Finally, we never bought the “mental patients are dangerous” proposition. We knew after sixteen years of working with a few thousand individuals that, as per the literature, our clients were more likely to be victims than perpetrators of violence. In fact, only a handful of them over the years had committed acts of violence against others, and these were simple assaults or disputes with friends and family members that had gotten out of hand. It should be noted that a literature review undertaken by Choe, at al, in 2008 (4), showed rates of violence by persons diagnosed with serious mental lllnesses against others as ranging from 2-15%, while violence perpetrated against that same cohort as rates ranging from 20-34%. Further, acts of violence appeared correlated primarily with abuse of alcohol and drugs, not medication non-compliance, and to have taken place largely within six months of an acute hospitalization. Of true significance for me was that none of our case managers was ever assaulted by a program client.

As the literature predicted and I often reminded my staff, as many as 50% of our clients at any one time were probably not taking their prescribed medications. A literature review on medication adherence conducted by former U.S. Surgeon General, C. Everett Koop, in 2006 (5) showed rates of compliance of 50-60% for persons diagnosed with schizophrenia, as compared to rates varying from 40-90% for persons with physical ailments.
Our clients’ pacific behavior – and we worked with many individuals who had been incarcerated and had histories of violence – was very likely due to the connections, the relationships, they had formed, with friends, family members, treatment providers and their case managers. Again, as per Choe, et al, reductions in violent acts seem associated primarily with the passage of time spent by individuals in the community as well as with familial and associational links forged by them. I had also learned, after directing an out-patient Forensic DBT program for impulsively aggressive persons that those who engaged in violent and anti-social behaviors rarely if ever sought out treatment (6,7). They would never appear in a Medicaid database.

Finally, we saw care monitoring, as we did AOT, as a violation of our clients’ civil rights. After all, why couldn’t our clients refuse or walk away from treatment and prescribed medications? Two of the State- and City-approved discharge criteria we had employed over the years were “missing” – when our clients didn’t want to be found, no matter how diligently we searched, they weren’t – and “refusing [case management] services”. Were we now expected to pursue clients post-discharge? In fact, we were, but we refused to do so.

From Brooklyn, care monitoring rapidly expanded statewide. Now it’s to be incorporated into the health homes as one of its principal quality assurance measures. Medication adherence will be central to monitoring treatment effectiveness and will expanded to include all medications, including those prescribed to treat physical ailments. Again to refer to Koop, electronic health records, together with a closed pharmacy system, have proved effective in tracking medication compliance and, conversely, non-compliance. The key question is what will be done with that information, particularly that which uncovers medication non-compliance. As per Koop, the studies he reviewed cited the following as key barriers to patient medication adherence: the prescription of “complex [medication] regimens; [failure] to explain the benefits of a medication adequately … and having poor therapeutic relationships with their patients…” The studies’ collective conclusion was that “… enhancing communication between the physician and the patient is a key and effective strategy in boosting the patient’s ability to follow a medication regimen.” To paraphrase James Carville, Clinton’s old political strategist, “it’s the relationship, stupid!”

CONJOINT TRAINING: STAFF & ENROLLEES

Throughout the official documents I reviewed, those to and from CMS and the State DOH (8,9), enrollees appear to be regarded as passive recipients of services rendered, as patients in a clearly subordinate role. It’s not clear at all to me how much input enrollees will be allowed in their treatment nor, more importantly, how that input will be solicited and integrated. To be sure, the State’s plan outlines a standard assessment and planning procedure, but I also know that such procedures are observed more in the breach than in actual practice without training and ongoing supervision. I assume that the case management training program at the Hunter College School of Social Work, for which I wrote the original curricula, will continue training entering case – or care – managers, and that their supervisors will provide supervision ranging in quality from rudimentary to quite effective. I have no idea how mental health clinic psychotherapists, whose clients collectively comprise 70% of the State’s out-patient population, will elicit pertinent information and encourage active client collaboration in their treatment. Anecdotally and as per my own experience, clinic psychotherapists are notoriously ill-prepared to address somatic/medical issues. Further, both case managers and clinical therapists, emblematic of the classic mind/body split in healthcare, simply do not know how to negotiate the “body” half, the medical side of that dichotomy. More training, as well as effective supervision, is needed.

And I have my biases. My twenty-plus-years experience training peers, case management clients and case managers and other mental health professionals conjointly has persuaded me that conjoint training, with information shared equally with between the helpers and those presumably being helped promotes collaboration between the two and serves to equalize the power equation in their relationship. In the Integrative Collaborative Care Management (ICCM) training program at the core of our health care advocacy study (10), our client participants seized the opportunity – one of them christened the project “Ask Questions … Get Answers” — and presented as intelligent, reflective individuals genuinely eager to learn as much as they could to live healthy lives; and our case managers were there to witness that; which served to motivate the CMs as well as underscore their mission to help and their accountability to their clients. Most importantly, both cohorts received candid assessments of the health risks they were running and straightforward strategies for mitigating those risks. So far as I know, there are only two studies that document the conjoint training of clients/peers and case managers and its outcomes: ours, completed in 2010 and referenced below; and the first that I know of, conducted in the early 1990’s, with Dr. Peter Stastny, a community psychiatrist recently retired from the NYSOMH, as director, where a small number of peers were trained alongside prospective case managers to work collaboratively with Intensive Case Managers in the Bronx. I served as the lead trainer in that project.

The State’s plan does leave ample room for conjoint training. Its “Care Coordination and Health Promotion” section advises CMS that “The health home provider promotes evidence based wellness and prevention by linking health home enrollees with resources…” I would assume that among those resources in the West Brooklyn home will be the “Wellness Training” programs offered by several of the community-based providers in that network. While the curricula generally used are informative, I experience their tone as well-meaning yet patronizing. Hard facts, things tough to say and hear, systems issues, are not mentioned. Little is said of the barriers to accessing health care that folks known to have mental illness diagnoses are sure to encounter: condescension, outright discrimination, with somatic complaints described in idiosyncratic fashion ascribed to an individual’s presumed mental illness. Most importantly, nothing is said of the link between the atypical anti-psychotics most of them are taking and the metabolic signs and illnesses they have or run the risk of having: their expanding waistlines and increasing weight, their elevated triglycerides, blood sugar and blood pressure and their declining HDL. It’s as if the curricula and their designers subscribe to T.S. Elliot’s nostrum, “… human kind cannot bear very much reality …” (11)

METABOLIC SYNDROME & THE ATYPICALS

The NYS Office of Mental Health (NYSOMH) recently issued a concise and direct brochure, “Cardiometabolic Risk” What Is It and What Can I Do About It?” (12), which details the issues, specifies the causal links and suggests possible remedies. Will it be distributed and discussed with every health home enrollee prescribed atypicals? Will its unequivocal message be incorporated into the various wellness curricula in use? Will enrollees be given the choice to refuse to take atypicals or any other medications recommended by their treating prescribers? Will the professionals, the folks who will actually do the work that CMS and the State’s plan demand, viz., to carry out their integration/coordination functions and treat, no less view, home enrollees holistically, receive training in overcoming systems barriers, in wellness, in the metabolic risk factors? It should not be assumed that the line professionals will know these things. How ironic – yet how telling – that the two stakeholders on the ground, the enrollees and the line staff, will have such inadequate preparation to address life-threatening issues that could well be considered iatrogenic, i.e., caused by the public mental health system itself. They have been afforded very little say in what will continue to be a very complicated and bureaucratic system and will not easily gain a voice.

I like our training approach, which has a Jungian cast to it: “Where danger is, there awakens deliverance (13).” The first module, which I generally teach, lays out the essential data of the NASMHPD study, beginning with the summary statement concerning the 25 year loss of life expectancy and completes the dots linking the atypicals with onset of metabolic symptoms and consequent diseases. That module concludes with the message that all the causative factors identified in the study are modifiable, which is the focus of the seven training modules that follow. Our trainers, experts in their respective fields, proceed to teach client and case manager participants about the atypicals, their links to metabolic illnesses, principally diabetes and cardiovascular disease, and then about the prevention and management/ mitigation of those diseases, should they occur (10) .

In the middle of all that, I lead two modules entitled “How to Talk To Your M.D. (14),” which has proved to be quite popular, largely because of the immediate use to which its contents can be put to use. I have employed it on several occasions now in a peer specialist training program and am invariably informed by the peer participants how practical it proves to be in their field work when helping other peers as well as in their own personal lives. I’d be happy to make it available to practitioners in the field, whether peers or professionals, and particularly to health home providers and their component programs. It’s one of the guerilla or sub rosa tactics I’d advise providers to use whose staff members and clients/patients need and could benefit from what I term health care advocacy training. While it might not conform to the letter of ACA legislation or to New York State’s health homes plan, I would hope it does to their spirit and intent.

Ultimately, it is more than disappointing – iatrogenic? — that the State plan does not make explicit the link between the atypicals, the metabolic syndrome and the consequent metabolic illnesses, principally diabetes and heart disease, and the loss of twenty-five years of life expectancy. It does highlight smoking as a causative factor; and, indeed, the American Heart Association implicated smoking in 37% of the over 400,000 deaths in the U.S. caused by heart disease in 2007 (15). Interestingly, the NASMHPD study (16) also focuses on smoking as one of the modifiable causes of the increased mortality of persons diagnosed with serious mental illnesses, without acknowledging the role played by the atypicals ; as does New York State’s “Statewide Comprehensive Plan, 2011-2015” (17), which provides the context for its health homes submission to the CMS. It’s as if the policy elite in public mental health can say nothing that might be construed as an attack on the biomedical model. One might conclude that, despite what they know to be the facts, they hold to a steadfast belief in the ultimate efficacy of neuroleptics, particularly the atypicals. Yet, while they won’t connect the dots to the loss of life expectancy, both the State’s plan and the NASMHPD do acknowledge the link to metabolic illnesses. In fact, in the final section of its study report, the NASMHPD makes the following pertinent recommendations to provider agencies:
• That there [be] consistent monitoring of individuals receiving psychotropic medications … [and that]
• Whenever possible, avoid use of medications that are more strongly associated with … obesity, diabetes and hyperlipidemia…”

METABOLIC SYNDROME & PSYCKES

In the “Goal Based Quality Measures” section of the State’s health home plan, there is reference to the former but none to the latter. The rationale for the State’s response to both is probably to be found in a recently completed demonstration project conducted by SOMH with 18 New York City private voluntary hospitals during CY 2011, “Reducing Use of Antipsychotics with High-Moderate Risk of Metabolic Side Effects in Individuals with Cardiometabolic Conditions” (18) Data from the project was collected via SOMH’s PSYCKES system – Psychiatric Services & Clinical Knowledge Enhancement System for Medicaid (State bureaucrats have a thing for tongue-twisting titles and acronyms) — which, as per its website, is a “web-based portfolio of tools designed to support quality improvement and clinical decision-making in the New York State Medicaid population” (19). One can assume that medication monitoring data will continue to be compiled by PSYCKES. To me, that’s a remote and bureaucratic procedure, and I would be prefer that all prescribers be obliged to make use of the Metabolic Syndrome Monitoring Protocol, which I described at length in a blog posted on another site in March of last year and reference below (20), and which was developed by the American Diabetes Association in 2002 (21). But, as the results of the PSYCKES Demo clearly indicate, maybe you can’t oblige M.D.s to do much of anything.

In short, medication prescribers at 18 hospital-based mental health clinics were asked to “convert” at least 30% of all patients receiving atypicals and who were exhibiting metabolic signs and symptoms to other, presumably less problematic neuroleptics over the course of CY 2011. It is important to note that most if not all of these hospitals and their clinics will form part of the several health homes that will serve New York City. At year’s end, the average rate of conversion approximated 25%, but that appeared to be largely attributable to the conversion rates achieved by the 7 hospitals that scored at the 25% rate or higher. Two hospitals converted none; 3 converted less than 10% of their patients; and only 6 attained the 30% targeted rate, with 2 scoring better than 60% (18). So there we have it … the facts are known but the response is, at best, mixed and certainly inadequate. Accordingly, the State is not about to jeopardize its standing – and its Medicaid funding – with CMS by posing for itself a QA standard it could not meet within the next several years, if ever. Which confirms for me a contention I have been making since I started blogging a year ago, that the issues at hand require not clinical but political resolution and call for the development of a peer/survivor civil rights movement. More immediately, it validates my tactical suggestion that health home enrollees, together with their practitioner counterparts, be trained as health care advocates. Comments welcomed.

GUERILLA TACTICS & CONCLUSION

Finally, those guerilla tactics. Nothing illegal but just not officially sanctioned.
The first involves training. The NASMHPD recommends that each State establish and maintain the capacity to train the mental health staff charged with operating these integrated health care programs (16). New York State has fulfilled that obligation with its care management staff, particularly those who work in New York City, since the inception of case management in the State over twenty years ago. I assume the State will continue to fund the training program for new care managers housed at Hunter College. However, it has not done the same for the professionals who staff mental health clinics, most of which are under the auspices of non-profit agencies. Now it will have to ensure training opportunities for them as well as for those staffers from the medical side of the health home provider networks, many of whom will have had little experience working with enrollees presumed to be mentally ill. It’s not clear from its CMS proposal what the State’s training plan will be or what resources it will employ to ensure that staff get the training they’ll need to work effectively. In the event the State has no plan or that it proves inadequate, I’ve detailed above the conjoint training I believe would be useful for staff and enrollees in an integrated health care system. Providers should feel free to use all or part of it and adapt it in whole or part to meet their needs.

Secondly, training should be in line with specific programmatic objectives, which should include the following:
• Ensure staff and enrollee orientation to the health home and to the member agencies that comprise its provider network; the latter will be complex and bureaucratic and will require study and a map to differentiate its members and the services each offers;
• Closely monitor enrollees’ access to primary and chronic health care to ensure they get the care they need;
• Closely monitor the results of enrollees’ metabolic screenings, particularly those that reveal onset in enrollees of metabolic signs and symptoms;
• Promote the development of collaborative relationships between staff and enrollees to ensure they work as a team to achieve the preceding objectives. Specific attention must be focused on securing reductions in the dosages of prescribed neuroleptic medications or changes in the medications themselves should enrollees be suffering from metabolic ailments, particularly diabetes or cardiovascular illnesses, or in the event metabolic signs and symptoms arise.
• Promote enrollees’ recovery, whether recovery is defined as liberation from the mental health system and/or re-integration into the community and into a community-sanctioned role; towards which end, identify peer/survivor-led organizations, develop working alliances with them and help enrollees integrate these organizations into their social support work network (22).

Lots of work, with perhaps little support from official State and health home network entities. Just remember, “Don’t mourn, organize!”

REFERENCES:

1.- Gianakali, “Medical Compliance? Adherence? Screw That. My MDs Are My Partners,” January 30, 2012, http://beyondmeds.com

2.- NYSDOH, “The Quality Measures for Health Homes,” January 30, 2012, http://health.ny.gov/health_care

3.- NYS Office of Mental Health (NYSOMH), “Statewide Comprehensive Plan 2011-2015, Chapter 2, The Imperative for Health Care Reform,” October 1, 2010, http://www.omh.state.ny.us/

4.- Choe, J.Y., et al, “Perpetration of Violence, Violent Victimization and Severe Mental Illness: Balancing Public Health Concerns,” Psychiatric Services, February, 2008, Vol. 59, #2, pp. 153-64

5.- Koop, C.E., “Adherence to Medication,” New England Journal of Medicine, August 4, 2005, pp. 487-497

6.- Carney, J., Frankel, A., Laporte, H., Brathwaite, D., Ring, N., “Utilizing Dialectical Behavior Therapy to Treat Impulsive Aggression in Forensic Clients with Serious Mental Illnesses in an Out-Patient Clinic,” 1999

7.- Carney, J., “Outpatient DBT Treatment for Forensic Clients,” Currents, NASW, NYC Chapter, Vol. 48, #5, February/March, 2004

8.- NYSDOH, “NYS Health Home SPA for Individuals with Chronic Behavioral and Medical Health Conditions – SPA # 11-56,” September 28, 2011, http://www.health.ny.gov

9.- Social Security Administration, “State Option to Provide Coordinated Care Through a Health Home for Individuals with Chronic Conditions,” http://www.ssa.gov/OP_Home/ssact/title19/1945.htm#ftn490

10.- Carney, J., “Ask Questions … Get Answers, II – Training Behavioral Health Consumers and Case Managers as Co-Equal Primary Health Care Advocates: Summary of a Comparative Study, September, 2008 – March, 2010,” October 6, 2010 & February 2, 2011, www.behavioral.net

11.- Elliot, T.S., “Burnt Norton,” Quartet No. 1, from Four Quartets, Harcourt Brace, New York, 1943, 1st ed., and www.tristan.icom43.net/quartets

12.- NYSOMH, “Cardiometabolic Risk: What Is It and What Can I Do About It,” brochure, 2012

13.- Jung, C.K., Modern Man In Search of a Soul, (1933), Routledge Classics, London & New York, 1955, English translation

14.- Carney, J., “Communicating With Your Doctor: A Self-Advocacy Primer,” powerpoint presentation, 2008, 2011, and “Communicating With Your Doctor: A Training Guide to Self-Advocacy,” July, 2011

15.- American Heart Association, “Heart Disease and Stroke Statistics – 2011 Update,” December 15, 2010, http://circ.ahajournals.org/

16.- National Association of State Mental Health Program Directors (NASMHPD), “Morbidity and Mortality in People with Serious Mental Illness,” October, 2006, www.nasmhpd.org

17.- NYS Office of Mental Health (NYSOMH), “Statewide Comprehensive Plan 2011-2015, Chapter 4, Public Mental Health System Highlights,” October 1, 2010, http://www.omh.state.ny.us/

18. NYSOMH, “GNYHA-PSYCKES Quality Collaborative: Reducing Use of Antipsychotics with High-Moderate Risk Of Metabolic Side Effects in Individuals with Cardiometabolic Conditions,” powerpoint presentation, January, 2012

19.- NYSOMH, “About PSYCKES,” http://www.omh.state.ny.us/omhweb/psyckes

20.- Carney, J., “Helping Consumers Add Years to Their Lives, II: The Metabolic Syndrome Monitoring Protocol and Other Tools,” March 4, 2011, www.behavioral.net

21.- Newcomer, J.W., Haupt, D.W., “Metabolic Screening & Monitoring Form,” 2006, Compact Clinicals, Kansas City, Mo.
Also c.f. Appendix, NASMHPD study, 2006.

22.- Carney, J., “Answers vs. Questions: Do We Even Need a Mental Health System?”, October 6, 2011, www.behavioral.net

So why has Open Dialogue gained an almost viral appeal, especially among peers? One reason is the extraordinary outcomes reported in Western Lapland, Finland, by the group of practitioners.  During a 20-year period utilizing this approach, the frequency of schizophrenia in that region went from one of the highest in the world to one of the lowest (Seikkula, et al, 2006). These results were achieved by using a community-based, social network approach for young persons experiencing their first psychotic episode. I think, however, more than the treatment aspects, it is the philosophy underlying Open Dialogue, which is most appealing to persons with lived experience.  In fact, Dr. Jaakko Seikkula, one of the developers of Open Dialogue, has emphasized that it is a philosophy, not a program.

This distinction between a program and a philosophy may seem esoteric to we Americans who seem to focus on reproducible, manualized protocols. In contrast to most professions, we with lived experience have had a deep mistrust of programs such as PACT (Program in Assertive Community Treatment), which insist on fidelity to a single model. In fact, a long-term approach called PACE (Personal Assistance for Community Existence) (see Fisher and Ahern, 2001 for a comparison of PACT and PACE) and an acute approach called emotional CPR (www.emotional-CPR) have been more appealing to peers because they are based on the principles of recovery of a life. I think that an approach based on principles rather than programs is more appealing to those of us going through recovery because it allows us to exercise agency and experience empowerment. It is my conclusion that empowerment as reflected in having a voice in the decisions affecting one’s life is the most important element of recovery. Programs and protocols, on the other hand, intrinsically prevent the recipients from developing agency and empowerment.

Dialogue has slowly been gaining presence in the US in other ways. At the very time that professionals in Finland were developing Open Dialogue, peers started using a dialogical approach in the US to improve communication between groups having difficulty understanding each other’s world-views. I personally was engaged in a series of such dialogues sponsored by the New York Office of Mental Health (Blanch, et al, 1993) between professionals with lived experience and psychiatrists. SAMHSA has also carried out a series of such dialogues (www.samhsa.gov). David Bohm an eminent physicist, conducted a series of dialogues in the 80s to help all concerned gain a deeper understanding of the implicit levels of reality (Bohm,1996).

So what is the philosophy at the heart of Open Dialogue? The principles of dialogue date back to Plato, Martin Buber, and Paolo Friere. I believe the essence of dialogue is the creation of a space between people for free, mutual, and creative generation of new thoughts. According to the Finnish psychologists, psychosis is the result of a person retreating into monologue, or their own world. I can relate.

When I was experiencing retraumatization from an unsuccessful love relationship and deadening research, I retreated into complete monologue. I was so disappointed by the world of our war on Vietnam and mechanistic descriptions of behavior, that I stopped speaking altogether. I was hospitalized in Bethesda Naval Hospital and was mute for over a month. Medications did not touch my refusal to speak. In fact they caused me to retreat even deeper.  I only felt safe to emerge from my monologue when a corpsman, the lowest ranking member of the team, and I developed a nonverbal language of our own.  We created a dialogical space between us, which has been described by Dr. Peter Rober (Rober, 2005; Rober lecture, 2012) as “a space into which life can come.” This is the space that I believe our peer movement has been creating on a national scale through advocacy for recovery. Our collective lived experience has taught us that the essence of recovery is being able to live a free and fulfilling life in the community – a life in which we are the authors not the subjects of our destiny.  I would call this approach creating dialogical recovery space, which enables our life to come more fully into our lives.

These liberating life forces of dialogical recovery, however, face heavy resistance from the dominant, narrowly applied medical model. The medical approach as practiced by my father and his generation of doctors was more respectful of the patient’s participation in their healing. Without the high-powered medical technology, these humble doctors would say that doctors dressed the wound, but the person’s own powers healed the wound. I am not opposed to modern technology and medications used sparingly. In fact, penicillin, partly through my father’s research, saved my life when I was a year old. But present day health care professionals have the arrogance to think that they cure illnesses. Whether in mental health or physical health, medications can help relieve distress, but the healing ultimately must be through the coordinated agency of the person’s whole mind/body self. In mental health, this arrogant attitude leads to the imposition of a single story of so-called “chemical causation” of emotional distress on the whole society and the conviction that only a medication program is needed to correct this imbalance. I believe this model of so-called reality is perpetuating monologue, and thereby is keeping many persons in distress in their own world. I call this dominant explanation of emotional distress the “monological medical model.”

The following table shows the similarities in the principles of the recovery (Ahern and Fisher, 2001; www.SAMHSA.gov) and the principles of Open Dialogue philosophy. The table also shows how much the monological medical model contrasts with these other sets of principles:

See table:

In conclusion, I would suggest that the shift to a recovery-based community healthcare system could be greatly facilitated by the adoption of a dialogical recovery philosophy. This would mean an infusion of dialogical principles into all facets of daily living. This might be best carried out through the engagement of all the members of society in various sized dialogues, covering a variety of topics of great concern. In the healthcare field, for instance, we need much more dialogue between persons who have lived experience with mental health, substance use, and physical health issues, psychiatrists, and medical doctors.  This much sought after integration of these separate fields is best done by the person suffering gaining a sense of their own agency. Once the person gains a voice in their life, they can carry forth genuine person centered, whole health planning.

* I use the term Open Dialogue broadly in this article to encompass both the specific practice in Tornio, Finland and adaptations of Open Dialogue in other areas of the world, which technically speaking are dialogical practices. I have used Open Dialogue to include both practices because the US audience is much more familiar with Open Dialogue than dialogical practices. Also it is beyond the scope of this paper to explain the details of the Open Dialogue practice. Therefore, I have focused on the principles of Open Dialogue, which are similar to those of dialogical practice.

References:

Ahern, L., and D. Fisher. Recovery at your own PACE. Journal of Psychosocial Nursing 39:22–32.(2001).

Blanch, A., D.B. Fisher, D. Walsh, and J. Chassman. Consumers/survivors share insights about recovery and coping. Disabilities Studies Quarterly. Spring issue.(1993).

Bohm, D. On Dialogue. New York: Routledge. (1996).

Fisher, D., and L. Ahern. Personal assistance in community existence (PACE): An alternative to PACT. Ethical Human Service and Sciences2(2): 87–92 (2006).

Mackler, D. Open Dialogue. Video on DVD, can be obtained through the National Empowerment Center, www.power2u.org.

Rober, P. Family therapy as a dialogue of living persons. J. of Marital and Family Therapy. 31:385-97. (2005).

Seikkula, J., Aaltonen, J., Alakare, B., Haarakangas, K., Keranen,P., and Lehtinen, K. Five-year experience of first-episode psychosis in open-dialogue approach. Psychotherapy Research. 16:214-228 (2006).

Whitaker, R. Anatomy of an Epidemic. Crown Publisher, NY. (2010).

PART I – WHAT MENTAL HEALTH HOMES ARE AND WHAT THEY’RE NOT

On the ground reality is about to trump rhetoric. Whether you subscribe to my definition of recovery as liberation from the mental health system or SAMHSA’s as the capacity to live a self-directed life, New York’s mental health homes are not intended to promote either. The homes are health care delivery systems whose priority is the same as that for all publicly-funded health and welfare programs throughout the country– state and local governments’ financial survival. At the same time, they offer the promise of effective, integrated and coordinated health care for persons who are poor and designated as disabled. Will they deliver?

INTRODUCTION: THE DOORS OPEN

The State’s first wave of mental health homes, which will comprise the bedrock of its reformed public mental health system, has just received retroactive authorization from the Center for Medicare and Medicaid Services (CMS) to begin operating in New York State effective January 1. The State’s own official start date, its “Phase I” commencement, is February 1 (1). That’s when the first thirteen of these “homes”, actually “integrated care” provider networks linked by common cyber-information systems (Health Information Technology (HIT) networks, in bureaucratese), will begin providing treatment and related services to the residents of ten New York counties who meet the eligibility criteria for serious and persistent mental illness or drug addiction. Hence the designation of the homes as “mental health homes”. Many of these eligible individuals – at least 50% by State estimate — will also be suffering from one or more chronic medical ailments (2,3). “Phase I” will be followed by “Phase II”, affecting sixteen counties, on or about April 1, and then “Phase III”, affecting New York’s remaining thirty-six counties on or about July 1. Sometime thereafter, the two other “disability populations” specified in the Affordable Care Act, popularly referred to as Obamacare, as persons with long-term somatic ailments and those with developmental disabilities, will also receive their care via these health homes or provider networks (4).

In accordance with Obamacare and with the State’s revised Medicaid plan (5), developed to address the State’s budget-busting Medicaid expenditures at the behest of Governor Cuomo, all the homes and their provider networks will be partnered with managed care plans, which will have the responsibility to determine county residents’ eligibility for services and decide whether to reimburse providers for services rendered. Phase I’s thirteen homes/ networks are partnered with nine managed care companies which will compete with one another for enrollees. In the near future, all Medicaid-funded health care in New York, as well as in most States, will be “managed”, with all Medicaid recipients obliged to join a managed care plan of their choosing.

Finally, whatever the future of the Affordable Care Act – whether it’s implemented as is or found to be unconstitutional in whole or in part or is eventually repealed or amended by Congress — health homes are now firmly embedded in Medicaid regulations (6), in synch with the incremental nationwide implementation of health care reform, which does not become fully operative until 2014. As per the Act, states have the option to establish health homes as of January 1, 2011. So far as I know, New York is the third state, behind Missouri and Minnesota, to do so(7,8).More, if not all states can be expected to follow. Comprehensive descriptions of health homes and their attendant regulations are contained in the several documents I reference at the end of this blog(9).

I’m devoting time and space to all this because health homes will be the face of the public health care system in this country for years to come, assuming Obamacare is not overturned. They will also constitute the public mental health system in New York State so long as the Medicaid regulations that authorize them remain in effect. In sum, the homes are likely to impact everyone who reads this blog in one way or another. Their stated intent is to ensure access to integrated care – i.e., one-stop-shopping, or access to both behavioral health and primary health care – for those individuals who historically have been faced with systems barriers to requisite health care; and care that is coordinated – i.e., where all providers involved in a person’s care will know what one another is doing. Perhaps most importantly, at least politically, is that the integration and coordination features of health homes are designed to be cost effective – to save money for local, State and the Federal governments(5,6,9). As you’ll see when I talk about the “Goal Based Quality Measures” for the mental health homes in New York, no mention is made of recovery. Allusions are made by CMS and SAHMSA and in the State’s plan to “… linkage to … supports that promote recovery and resiliency …”, but such linkages are not included in CMS’s or the State’s targeted outcomes, designated in officialese as “goal-based quality measures”(6,10,11). After all, New York State’s constitution obliges State government to provide care for persons considered seriously mentally ill, with no stipulation as to the kind of care to be provided. That interpretation has been left to each succeeding generation of policy makers and politicians to decide. And while Cuomo has endorsed the concept of “integrated care” for persons with presumed disabilities – c.f. my last blog on this site and Cuomo’s support for the development of community-based services that conform to the Olmstead decision – his most pressing concern as well as responsibility is to ensure the solvency of State government (12).

Recovery and services that promote the rehabilitation of persons considered seriously mentally will remain under the purview of the New York State Office of Mental Health. As per its 2009 “Patient Characteristics Survey”, approximately 10% of the nearly 90,000 persons enrolled in its out-patient programs participated in recovery and rehab-oriented programs (13,14). Again, the health homes are a new medical care delivery system, firmly embedded in the biomedical model. They are under the fiscal jurisdiction of the State’s Department of Health, which oversees State Medicaid expenditures and is the governmental entity that negotiates with the Center for Medicare and Medicaid Services (CMS), the Federal regulatory agency, for the approval of new State Medicaid initiatives. In order to comply with CMS’s rules governing health homes, New York State’s health homes plan must pursue three primary goals: improving health care recipients’ “experience of care”; improving their health; and reducing per capita health care costs. It must also endorse several key practice principles that will underpin the plan: an holistic orientation of care; coordinated and integrated care; enhanced access to care; quality assurance and participants’ safety; and payment commensurate with services rendered. Finally, persons eligible for enrollment in a health home must have at least one chronic medical ailment, including a serious mental illness or a substance abuse disorder. As the financial carrot to induce the states to undertake the foregoing, CMS will authorize a Medicaid reimbursement rate (FMAP) to participating states of 90% — up from the usual 50% — for the first two years of program operation (3,6). (Ironically, 26 states have brought suit against the ACA, with the Supreme Court expected to hear arguments pro and con in May, declaring the Medicaid expansion crucial to ACA unconstitutional and this financial incentive “coercive”. Everything appears to be on the line[15].)

ORIGINS: HISTORY AND IDEOLOGY

Just to provide a bit of history about the homes, courtesy of the National Council for Community Behavioral Healthcare, health homes have their antecedent in “medical homes”, first developed over twenty years ago to address the complex medical issues presented by chronically ill children. Over time, the medical home evolved to signify a team or interdisciplinary approach to the provision of primary care for all persons with chronic medical conditions, and many states currently operate them. “Health home” is the appellation eventually utilized in the Affordable Care Act (16). Major impetus to integrate behavioral health and primary health care came with the 2006 publication of the landmark, sixteen-state study undertaken by the National Association of State Mental Health Program Directors (NASMHPD), “Morbidity and Mortality in People with Serious Mental Illness,” which raised the alarm at the study’s chief finding, that “Persons with serious mental illness die, on average, 25 years earlier than the general population (17).” The study’s Executive Summary went on to state that “… 60% of premature deaths are due to medical conditions such as cardiovascular, pulmonary and infectious diseases. People with serious mental illness also suffer from a high prevalence of modifiable risk factors, in particular obesity and tobacco use …” As for possible causes, the Summary underscored, among several, “Lack of access to appropriate health care and lack of coordination between mental health and general health care providers.

Closer to home, in articles published in 2009 and 2010, Mike Hogan, New York’s Commissioner of Mental Health, and Lloyd Sederer, his Medical Director, argued for the inclusion of behavioral health in the health homes that were to be a key component of the Affordable Care Act (18,19). They pointed out that as many as 60% of adults receive treatment for mental illness – essentially prescriptions for SSRIs – from primary care physicians, who often feel ill-equipped to do so. Further, persons diagnosed with serious mental illness have high rates of co-morbid medical problems. New York’s most recent “Patient Characteristic Survey” (2009) posted on its State Office of Mental Health (SOMH) website revealed that 50% of all persons who received State or Medicaid-funded services had at least one chronic medical ailment, with half of that number suffering from cardiac disease (20). In health care surveys I conducted from 2006-8 in the case management programs I directed in New York City, half of our 700 clients, all diagnosed with serious mental illnesses, also had chronic medical ailments, with, again, half of that number suffering from metabolic illnesses, principally diabetes and heart disease. More dramatically, our clients’ death rate from cardiac illness – 1.9 per 100 persons – during 2007-9 almost matched that uncovered by the NASMHPD survey – 2.3 per 100 persons – in 2006 and nearly quadrupled the U.S. incidence — .525 per 100 – in 2004 (17,21).

The rationale for mental health homes seems readily apparent to me. In an eighteen-month long three-study we conducted from 2008-10, largely inspired by the NASMHPD study and by our clients’ increasing death rate, we tracked for one year the health care experiences of 100 clients we had trained, conjointly with 50 case manager counterparts, as health care advocates. (C.F. “Ask Questions … Get Answers II — Training Behavioral Health Consumers and Case Managers as Co-Equal Primary Health Care Advocates: Summary of A Comparative Study, September, 2008 – March, 2010”, referenced below [22].) We had several objectives: first and principally, to have clients and case managers work collaboratively, with the clients taking the lead, to improve clients’ access to primary health care; then, to have these informed clients press both their primary care physicians and psychiatrists to monitor their metabolic signs for abnormalities; in which event, to press their providers to take appropriate action, including the lowering of prescribed dosages of atypical anti-psychotics, which had been implicated in the NASMHPD study as one of the factors causing its subjects’ increase in mortality; and finally, to persuade their primary care physicians and psychiatrists to communicate readily with one another and so coordinate their care. The outcomes, based on client self-report and case manager observations, were uniformly positive, with clients, corroborated by their case managers, reporting improved access to health care, improved personal health and satisfaction with their health care providers. With equal uniformity, however, they also reported an inability to get primary care physicians and psychiatrists to communicate with one another. The latter, anecdotally, were less amenable to contact their primary care counterparts, and it fell to the clients and/or their case managers to carry pertinent medical information between the two. We concluded, I believe correctly, that this was a systems issue and beyond the capacity of a single case management program to affect.

Health homes offer the promise of bridging this barrier to effective and coordinated care. Those targeted for enrollment in New York are the almost 1 million current Medicaid enrollees identified in the State plan submitted to CMS “ … as high cost/high need enrollees with two or more chronic conditions and/or a Serious Persistent Mental Illness…”(3). The “chronic conditions” prioritized in the State plan, after serious mental illness and substance abuse disorders, are asthma, diabetes, heart disease and obesity, the latter three the metabolic disorders linked to the decrease in life expectancy for persons diagnosed with serious mental illness. Given my nearly twenty years experience grappling with the fundamental case management issue of care coordination or securing the cooperation of other providers, I am skeptical about the homes’ ultimate effectiveness unless they address the several caveats I’ll posit in this blog. Before I enter that discussion, I’ll describe the composition of the provider network that will comprise the health home that will serve the western half of Brooklyn, an area that fronts New York harbor and has about one million residents, and where I’ve lived and worked for the past 40 years. I’ll also outline the contradictions that I believe the home’s providers will have to confront; hypothesize probable outcomes; and suggest the steps – guerilla tactics I’ll call them – that I would and they could take to address my hypothesized issues.

WEST BROOKLYN MENTAL HEALTH HOME (1)

I know the providers firsthand, since the first steps to establish the provider network – a common electronic health record and information system — were being discussed by the prospective providers when I retired and left the case management program I had directed for seventeen years. The lead provider is a large private voluntary hospital, where I began my career in public mental health forty years ago and where I worked for almost twenty years. It has as an important partner a second large private voluntary hospital that houses the largest Federally-funded family health care center in New York state. Both hospitals also operate psychiatric in-patient units that accept emergency admissions, known in New York as 9.39 hospitals. The seven remaining providers are large mental health/multi-service community-based agencies that operate between them three large case or care management programs, one of which is the program I directed; three large mental health housing programs; and several outpatient treatment programs. Since the geographic area this home will serve contains a large population of potentially eligible enrollees, its provider network will be among the largest in the State.

The fundamental problem affecting this home as well as all the others is its top-down, authoritarian organization and the likely infringement on enrollees’ treatment choices. I’m referring to enrollees’ choice of treatment vs. no treatment, particularly as regards psychiatric care. Of course, the lead provider, as with six of the other Phase I homes, is a hospital, so what else would you expect but a feudal organizational culture. (It should be noted that the remaining six homes also have at least one hospital in their provider networks. It can be assumed that all future health homes will have similar network configurations.) But I really have in mind the total institution, the old State hospital, that the homes are actually replacing, which is why I called the homes “hospitals without walls” when I first wrote about them this past September (23). Their three primary goals are to reduce acute inpatient hospitalizations and emergency room utilization and to secure treatment compliance, particularly as regards medication (3). That last goal immediately calls to mind a blog posted by Giannakali on her Beyond Meds website a week or so ago: “Medical compliance? Adherence? Screw that. My MDs are my PARTNERS” (caps hers) (24). That says it all for me.

The State – all states – has been attempting to reduce in-patient stays in psychiatric units since it began emptying out its large institutions. When the State’s Intensive Case Management program was launched 1988, that was its stated goal and its targeted clients were the those persons considered the “heavy users” of psych hospital and ER services, i.e., those 10% who were responsible for 90% of the State’s psych Medicaid outlay. Those are precisely the same persons – or at least the same identifiers – being targeted today. In truth, the State has achieved some success: 66,000 persons were hospitalized in State or general psych hospitals in 2001, with 60% or 39,000 re-hospitalized within 6 months, reduced to 28,000 persons hospitalized in 2009, with 15,000 or 55% re-admission within 6 months (20,25). Now, of course, it’s taking on a larger goal, the reduction of all in-patient stays, including those due to physical illnesses or injuries. A laudable goal, since the stated intent is to reduce hospitalizations that effective out-patient care will make “avoidable”. The question – and problem – is how that goal is to be achieved.

END OF PART I. IN THE SECOND PART OF THIS POST, I WILL LOOK AT THE ISSUES THAT NEED TO BE ADDRESSED, AND STRATEGIES FOR DOING SO.

References:

1.- NYS Department of Health (DOH), “Overall Rollout Plan,” January 27, 2012, http://www.health.ny.gov/health_care/medicaid/program/medicaid_health_ homes/nys_implementation.htm

2.- NYSDOH, “Chartbook on Disability in New York State, 2006,” Disability and Health Program, http://www.health.ny.gov

3.- NYSDOH, “NYS Health Home SPA for Individuals with Chronic Behavioral and Medical Health Conditions – SPA # 11-56,” September 28, 2011, http://www.health.ny.gov

4.- Social Security Administration, “State Option to Provide Coordinated Care Through a Health Home for Individuals with Chronic Conditions,” http://www.ssa.gov/OP_Home/ssact/title19/1945.htm#ftn490

5.- NYS Office of Mental Health (NYSOMH), “Statewide Comprehensive Plan 2011-2015, Chapter 3, Redesigning Medicaid Health Care in New York State,” October 1, 2010, http://www.omh.state.ny.us/

6.- U.S. Department of Health & Human Services, Centers for Medicare & Medicaid Services (CMS), “Health Homes for Enrollees with Chronic Conditions,” November 16, 2010

7.- Minnesota Department of Health, “Health Reform Minnesota: HCH I Health Care Homes,” January 30, 2012, http://www.health.state.mn.us

8.- Open Minds, “Missouri Health Homes Launched January 1, 2012,” January 9, 2012, www.openminds.com

9.- Henry J. Kaiser Family Foundation, “Medicaid’s New ‘Health Home’ Oprtion, January, 2011, www.kff.org

10.- Substance Abuse and Mental Health Services Administration (SAMHSA), SAMHSA Blog, “What is a Health Home,” January 30, 2012, http://blog.samhsa.gov

11.- NYSDOH, “The Quality Measures for Health Homes,” January 30, 2012, http://health.ny.gov/health_care

12.- Carney, J., “More on Recovery & Liberation …”, January 26, 2012, www.madinamerica.com

13.- NYSOMH, “Patient Characteristics Survey, 2007,” http://www.omh.state.ny.us/

14.- NYSOMH, “Personalized Recovery Oriented Services (PROS), http://www.omh.state.ny.us/

15.- Bazelon Center for Mental Health Law, “Amicus Brief in U.S. Supreme Court Defending the Affordable Care Act’s Medicaid Expansion,” February 2, 2012, www.bazelon.org

16.- National Council for Community Behavioral Healthcare, “Partnering with Health Homes and Accountable Care Organizations: Considerations for Mental Health and Substance Use Providers,” January, 2011, http://www.uclaisap.org/Affordable-Care-Act/

17.- National Association of State Mental Health Program Directors (NASMHPD), “Morbidity and Mortality in People with Serious Mental Illness,” October, 2006, www.nasmhpd.org

18.- Smith, T.E., Sederer, L.I., “A New Kind of Homelessness for Individuals with Serious Mental Illness? The Need for a ‘Mental Health Home’,” Psychiatric Services, April, 2009, Vol. 60, #4, pp. 528-33

19.- Hogan, M., Sederer, L.I., Smith, T.E., Nossel, I.R., “Making Room for Mental Health in the Medical Home,” Preventing Chronic Disease, November, 2010

20.- NYSOMH, “Patient Characteristics Survey, 2009,” http://www.omh.state.ny.us/

21.- Carney, J., “Ask Questions … Get Answers: Final Outcomes …”, Powerpoint Presentation, September 22, 2010

22.- Carney, J., “Ask Questions … Get Answers, II – Training Behavioral Health Consumers and Case Managers as Co-Equal Primary Health Care Advocates: Summary of a Comparative Study, September, 2008 – March, 2010,” October 6, 2010 & February 2, 2011, www.behavioral.net

23.- Carney, J., “Mental Health Homes as Hospitals Without Walls: New York State’s Mental Health System Reform,” September 1, 2011, www.behavioral.net

24.- Gianakali, “Medical Compliance? Adherence? Screw That. My MDs Are My Partners,” January 30, 2012, http://beyondmeds.com

25.- NYS Office of Mental Health (NYSOMH), “Statewide Comprehensive Plan 2004, Chapter 4, Utilization of Inpatient Beds,” http://www.omh.state.ny.us/

–Aurora Levins Morales

My heart beat fast as I wrote many of these words. I did the research for this article to try and make sense of this story I carry around with me about being someone who is seen as mad, who struggles with what this society considers a serious “brain disorder.” My hope is that by the time you finish reading my words you will have more tools to analyze this hyper-complicated world around you, tools to find points of connection between people you might never have thought you had much in common, tools to tear apart the psychic walls that keep us from understanding ourselves and one another. Part of building a movement, in this case what we might as well call the mad movement, is the conscious telling of our stories and history. This isn’t my personal story, but one that ties together the larger story of psychiatry and economics in all of our lifetimes. The important part to keep in mind is that it is very much a story in progress and that we all are characters in it. My hope is that we can use this knowledge to raise our collective consciousness and to write the next chapter together with brilliant colors and the visionary fire of our growing mad community. — Sascha Altman DuBrul

The biomedical model of psychiatry, or “biopsychiatry,” rests on the belief that mental health issues are the result of chemical imbalances in the brain. This is actually a very new idea, but in a short period of time it has come to be regarded as common sense by a whole lot of people all over the world. More and more, the belief that our dissatisfaction and disease is a result of our individual “brain chemistry” has been desensitizing many of us to the idea that our feelings and experiences often have their roots in social and political issues. We find ourselves with all this medicalized language in our mouths about neurotransmitters and serotonin that doesn’t actually get to the heart of so many of the problems we see around us. How this came about is important to understand if we are going to change it. In this article I will explain how there were very powerful political and economic forces, here referred to as neoliberalism, which began in the 1980′s, and played a huge role in the drastic paradigm shift in mental health care towards what today is known as biopsychiatry. I will paint a rough potrait for you of the situation, using the example of Depression, in the hopes that it inspires you to explore the story further, and I’ll conclude with some ideas about the emerging radical mental health movement you probably want to get involved in, or at least know about so you can point others our direction.

1980 Was the Year

1980 is a useful date for understanding the recent transitions in our conceptions of mental health and illness. In 1980, the American Psychiatric Association published the third edition of its Diagnostic and Statistical Manual (DSM-III). The DSM, although it was intentionally written in a style that makes it sound scientifically objective, was a creation of one particular school of psychiatrists at a particular point in history with a particular world-view slanted towards the biomedical model.[i] The 1970s were a socially volatile time: the discipline of psychiatry was under attack on all sides for both being oppressive and “unscientific.” Its makers packaged the DSM as scientific and neutral, reframing the concept of diagnosis from a loose and vague set of descriptions based on Freudian psychoanalysis to a detailed symptom checklist. Today, with the massive support of the pharmaceutical industry, it is accepted as the “Bible” of psychiatry and used as a diagnostic tool all over the world.[ii]

1980 was also the year that Ronald Reagan was elected to office in the USA, ushering in what is known as the “neoliberal revolution.” The older “liberalism” has its roots in the 19th century philosophy that emphasized minimal state intervention and free trade. The horrors of the Depression, the specter of Fascism in Europe, and a strong labor movement made the idea of unrestrained free market capitalism less attractive in the 1930’s. The period in history from the 1930s to the 1970s saw the rise of welfare states the US and UK, a philosophy that prioritized social security, public education, and welfare. The 1980s saw the liberalization of trade, business, and industry, massive transfer of wealth from public to private, enormous growth in power of multinational corporations, and the triumph of consumer culture.[iii]

Obviously these are huge topics that require much time and space to truly unravel. Right now I’m just going to focus on one example of the way biopsychiatry and neoliberalism united to affect our lives: the shifting understanding of “depression.” As I intend to show, Western cultures and increasingly the rest of the world, are coming to relate human sadness and distress to an individual’s brain chemistry. While there is absolutely no scientific proof that this is the case[iv], the biopsychiatric world view helps enable big business to maintain power and fuels the needs of the market based economy.
The Birth of the DSM: How Sadness Became a “Brain Disease”

Modern psychiatry has its roots at the beginning of the industrial revolution and it can be useful to see it as response to the massive reorganization of an entire society along market principles which undermined traditional ways of caring for the sick and older support networks and healing modalities[v], but to tell this part of the story we are actually going to begin in the 1940s. At the end of World War II psychoanalysis completely dominated the field of mental health, providing the leading explanations of mental illness and their treatments.[vi] The 1960s were a time of great social and political upheaval that reshaped the landscape of ideas of the self and what health and wellness looked like in society.[vii] By the 1970s, psychoanalytic theoretical schools, and different clinicians, had many different ideas about the fundamental nature, causes, and treatment of mental disorders. There was a growing anti-psychiatry movement that accused psychiatry of using medical treatment mainly in the interests of social control.[viii] There were highly publicized experiments showing the complete lack of reliability of diagnosis made in mental hospitals.[ix] Psychiatry’s legitimacy as a medical field was seen to be in jeopardy. It was at this point in history that the DSM-III was developed.

The DSM-III was an attempt to create a universal guidebook for psychiatric diagnosis. It was written by a school of psychiatrists who saw their mission to rid psychiatry of prejudice and superstition, by turning it into an “objective science.”[x] Their intention was to be scientifically rigorous and “theory neutral,” meaning that it claimed not to presuppose a particular theory or cause of why a patient was mentally ill. The idea was to define disorders on the basis of symptoms and not causes. “It shifted psychiatric diagnosis from vaguely defined and loosely based psychoanalytic descriptions to detailed symptom checklists—each with precise inclusion and exclusion criteria.”[xi] But in its attempt to be scientifically neutral, the DSM-III left no room for any ideas of mental distress that were not viewed as “illness” and “disease.” Furthermore, the idea of “scientific objectivity” put the power for determining well being and sanity in the hands of the psychiatrists, using a vocabulary that while sounding “objective,” was in fact culturally based in Western scientific practice. The new “objective” diagnostic criteria worked better if there were defined treatments for the “disorders.” As it turned out, this was very beneficial for the bottom lines of the pharmaceutical companies, as well as opening the door for a drastic shift in the psychiatric paradigm.[xii]

Let us now turn to the case of “Depression.” The way that the DSM diagnostic criteria for Major Depression was written fails to distinguish adequately between two types of depression: “normal sadness” and “melancholia.” These diagnoses share similar symptoms including “sadness, insomnia, social withdrawal, loss of appetite, lack of interest in usual activities.”[xiii] But the DSM fails to distinguish between normal sadness that has an outside cause, and a depressive disorder that does not. The unwitting result of this effort was a massive pathologization of normal sadness.
The Prozac Revolution

In the 1980’s the development of Prozac and the ensuing explosion in popularity of Prozac-like (SSRI) antidepressant drugs dramatically changed the landscape of treatment for depression. Almost one in four people in the United States were started on an SSRI between 1988 and 2002.[xiv] The drugs were marketed and prescribed for depression, but the shifting definition of “depression” left room for many emotional states that once were considered normal suddenly to be put into the category of pathology. The diagnosis of Major Depression, which used common symptoms such as sadness, lack of energy, or sleeplessness as indicators was well suited for the massive expansion of the market for antidepressant drugs, because it encompassed huge portions of the general population!

Meanwhile, for many people the drugs themselves, at least at first, appeared to have positive benefits. This created a situation where the seeming effectiveness of the drugs ended proving the existence of the “disease” of depression, and generally blurred the lines between happiness, and wellness and functioning in society. Suddenly it became easier and more natural to talk about brain chemicals, rather than social conditions or family issues. And this ability to “treat” sadness with a pill was a defining feature of the period. Anti-depressants seemed to quickly work their way into the lives of many people. Whether they chose to try it or not, taking an anti-depressant became a question hanging in the air, a potential option for them to choose.

In 1997 the FDA approved the use of direct-to-consumer drug advertisements, and suddenly daytime and evening television was flooded with “ask your doctor” drug ads.[xv] “Prozac was one of the first of the new psychopharmaceuticals to sit uncomfortably between a treatment and an enhancement, between a medication and a mental cosmetic.”(Brad Lewis)

The pharmaceutical industry became immensely powerful during this period, and not just financially. It became a force in determining how we think about ourselves and our happiness. The example of depression is an important one. The influence of the pharmaceutical industry extends deep into patient and family advocacy groups, such as the National Alliance on Mental Illness (NAMI), groups that promote the view that depression is a chemical deficiency that requires the use of their drugs. There are now widespread educational campaigns such as National Depression Awareness Day that offer free screenings for depression in universities and hospitals.[xvi] The pharmaceutical industry sponsors much of the clinical research on depression. Industry-academic collaborations are becoming an increasing source of funding for universities, academic medical centers, and hospitals. Never before has this “biopsychiatric” culture, which defines our health and happiness in terms of brain chemistry, been so heavily promoted through the mass media, become embedded in central institutions, and embraced by policy makers.[xvii]
Rise of the Neoliberals

During this same period, an equally complicated paradigm shift was happening in the world of economics and politics. The 1980s saw the rise of neo-liberal economic ideology: the privatization of public enterprises, the reduction of wages by de-unionizing workers and eliminating workers’ rights that had been won over many years of struggle, the elimination of many health and environmental regulations, and the dismantling of social services such as health and education and welfare.[xviii] The consequence of these policies: massive unemployment, underfunded schools, overcrowded prisons and the shrinkage of our social and economic safety nets. Along with all of these political and economic changes, has been the transformation of poverty from a social problem to an individual failure.[xix]

Similar to the ideology of biopsychiatry, neoliberalism uses scientific sounding language that talks about “free trade” and “self-regulation of markets” that on the surface appears to be neutral, but masks an ideology which benefits the powerful and already wealthy; and the two systems work seamlessly together. The notion of a chemical imbalance in our brains easily plants the seeds of doubt in our minds about our own happiness and wellbeing. One of the driving forces of the market economy is dissatisfaction – the market place would not function without a consumer culture that operates on feelings of inadequacy and lack of personal fulfillment. But what if it is actually the society itself, and the toxic world-views we have inherited, that are driving us mad and making us depressed?

“A society that is increasingly socially fragmented and divided, where the gulf between success and failure seems so large, where the only option open to many is highly demanding and low paid work, where the only cheap and simple route to carelessness is through drugs, is likely to make people particularly vulnerable to mental disintegration in its many forms. It has long been known that urban life and social deprivation are associated with high levels of mental disorder. Neoliberal economic policies are likely to further increase their pathogenic effects. By medicalizing these effects, psychiatry helps to obscure their political origin…The social catastrophe produced by neoliberal policies has been washed away and forgotten in the language of individual distress.”[xx]. (Joanna Moncrieff 251-3)

Meanwhile, both the biopsychiatric model and neoliberal economics are global. There is a lot of evidence that, with the help of the DSM and the pharmaceutical industry, the biopsychiatric paradigm is rapidly spreading throughout the world. From Hong Kong to Tanzania to Sri Lanka, Western ideas of mental illnesses — depression, schizophrenia, anorexia, and PTSD are growing, with the resulting, loss of traditional forms of knowledge and understanding of health and wellness.[xxi]

A Growing Movement at the Intersection of Social Justice and Mental Health

So the question becomes: what can we do to change this situation? One of the reasons it is so difficult to discuss is that the situation itself lies at the intersection of all these different fields: from biology to neuroscience, cultural studies, economics, history, and politics. It is very challenging to untangle the social, political, and economic hijacking of what is considered mental health and illness, when these are states we tangibly live with and have to navigate on a daily basis. What is inside us and what is outside in society? How does the language and diagnostic categories that we use to talk about each other affect our understanding of ourselves? It is a multi-layered knot of enormous proportions.

If we are going to do anything to change the mental health system we need to begin by simply acknowledging how fundamentally flawed the current model is – how little room it leaves for alternate views of health and wellness, how it privileges the knowledge of scientists and experts, and belittles the resources of local communities, families and alternative health care practitioners. We need to draw a clearer distinction between the usefulness of some modern psychiatric medications, and the reductionist biopsychiatric paradigm that reduces our emotions and behavior to chemicals and neurotransmitters. We need to talk publicly about the relationship between unhealthy economic policies, the pharmaceutical industry, and our mental health. We need to start redefining what it actually means to be mentally healthy, and not just on an individual level, but on a collective level, community and even worldwide. We need to move away from the ideology of disease and its treatment, to that of public health and disease prevention. We need to look more closely and critically at the root causes of our mental distress, because it is likely that many of the causes come from the same ideology that offers the current biopsychiatric solutions.

When I think about solutions to this mess, I envision a vibrant social and political movement made up of a coalitions of locally based community groups and professionals in the field – people who understand the importance of economic justice and global solidarity and the critical need for accepting mental diversity and not falling into the trap of trying to fit into a society that is obviously very sick. I envision a movement that has the wisdom and reverence for the human spirit and understands the intertwined complexity of these things we call mental health and wellness. I envision a movement that understands the importance of language and telling stories and knowing our history. Because the issues are so confusing and intertwined, I would love to see focus groups of scholars and activists who can help to make relevant theories and histories easier to penetrate for larger numbers of people. I see creative organizing on high school and college campuses to counteract the effects of a popular culture steeped in consumerism and intolerance of difference. I see popular education about depression and the economy: if this article were a theatrical performance of puppets, what would it look like?

Fundamentally, if we are going to shift the current mental health paradigm we are going to need a movement that both has the political savvy to understand how to fight the system, and the tools to be able to take care of each other as the world gets even crazier. I think some of the answers are going to come from revisiting the useful aspects of counter cultural movements that were questioning the mainstream models of mental health in the 1960s and 70s. From humanistic and Jungian psychology to encounter groups and gestalt therapy, from the Feminist consciousness-raising groups, to the more radical aspects of the “human potential movement,” there were many powerful ideas that came from the intersection of Eastern spiritual philosophies and Western psychotherapies and that were informed by the political charged atmosphere of the times and in the 21st century seem to have been virtually eliminated from the dominant dialog in psychiatry and psychology.[xxii] While clearly there were flaws in those young movements that seemingly got crushed in their tracks or channeled into a watered down capitalist friendly New Age market, I think it would be quite a worthwhile project to identify which of their aspects and tools would be useful to embrace in a contemporary radical mental health movement.

I find a lot of inspiration looking at the emergence of the growing community around the Icarus Project. Icarus began as a website in 2002 as an attempt to create an alternate space where people struggling with seriously mental health issues could talk about their struggles and organize local community. It has its roots in the anarchist networks of North America and although it has branched far and wide, the project has maintained it’s radical analysis and is still geared towards those of us engaged in social justice struggles. For those of us who see the critical importance of a radical analysis in understanding mental health, Icarus is an oasis of mad sanity and community. These days Icarus is run by an organizing collective and has many thousands of members all over the world. If you are looking for others to talk about these issues with, organize with, build community with, I suggest starting here: http://theicarusproject.net

Mad Love, Sascha scatter@theicarusproject.net

[i] Lewis

[ii] Watters

[iii] Giroux

[iv] Fabrega

[v] Foucault

[vi] Curtis2

[vii] Curtis3

[viii] Howwitz 101

[ix] Horwitz 98

[x] Lewis 5

[xi] Lewis 97

[xii] Thomas 23

[xiii] Horwitz 210

[xiv] Lewis 122

[xv] Horwitz 185

[xvi] Horwitz 215

[xvii] Horwitz 187

[xviii] Martinez

[xix] Brown

[xx] Moncrieff 251-3

[xxi] Watters

[xxii] Kripal 85

Bibliography

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Theory & Event. Volume 7, Issue 1, 2003. Web.

http://muse.jhu.edu/login?uri=/journals/theory_and_event/v007/7.1brown.html

Carey, Benedict “Revising Book on Disorders of the Mind” Nytimes. 10 February 2010. Web. 6 March 2010.

http://www.nytimes.com/2010/02/10/health/10psych.html

Fabrega, Horacio Jr. “On the Postmodern Critique and Reformation of Psychiatry” Rev. of Moving Beyond Prozac, DSM, and the New Psychiatry. Psychiatry 71(2) Summer 2008: 183-196. Print

Foucault, Michel. Madness and Civilization Harper Collins, 1967. Print.

Giroux, Henry A. “Beyond the Biopolitics of Disposability: Rethinking Neoliberalism in the New Gilded Age”

Social Identites Vol. 14, No. 5 (2008) 587-620

Horwitz, Allan V. and Wakefield, Jerome C. The Loss of Sadness: How Psychiatry Transformed Normal Sorrow Into Depressive Disorder Oxford University Press, 2007. Print.

Kripal, Jeffrey Esalen: America and the Religion of No Religion. University of Chicago, 2007. Print.

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Ann Arbor: University of Michigan Press, 2006. Print.

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Moncrieff, Joanna “Neoliberalism and biopsychiatry: a marriage of convenience” Liberatory Psychiatry: Philosophy, Politics, and Mental Health. Ed Carl I. Cohen Cambridge University Press, 2008 235-55. Print

Shah, Anup “A Primer on Neoliberalism” Global Issues.org 1 June, 2009. Web 1 April, 2010.

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“The Engineering of Consent” The Century of the Self By Adam Curtis. BBC 2002 Television.

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Thomas, Philip and Bracken, Patrick. “Challenging the Globalization of Biomedical Psychiatry.” Journal of Public Mental Health. Vol 4 Issue 3 (2005) 23-32. Print.

Watters, Ethan. Crazy Like Us: The Globalization of the American Psyche. New York: Free Press, 2010. Print

Michael Maes and colleagues have published extensively on the impact of antidepressant medications on brain inflammation. Mice exposed to antidepressants for about 6 weeks do display less brain inflammation when stressed or provoked with a pathogen. There is a parallel literature in humans who have been exposed to antidepressants for 8 weeks. Humans, taking antidepressants for 8 weeks, do show lower levels of systemic inflammation as measured by markers in blood.

The problem is that the data making the case that antidepressants decrease inflammation is based on short term exposure in people and in mice. In the last decade reports have come out on the inflammatory status of persons who have taken antidepressants for over a year. Elevations in CRP, a measure of inflammation, are noted in those taking antidepressants for over two years. Those taking antidepressants over the long term are at elevated risk for Type II diabetes, widely acknowledged to be an inflammatory disease. They are more likely to be obese and exhibit metabolic syndrome, two conditions widely viewed as promoting systemic inflammation. They display lower levels of heart rate variability, another inflammatory marker. Moreover, among those individuals with cardiovascular disease, even after equating on prior levels of depression, those taking antidepressants display greater hardening of the blood vessels, which is the result of systemic inflammation.

While short term exposure to antidepressants decreases systemic inflammation, when taken over years, the opposite occurs. The literature on depression being an inflammatory state offers proof that activation of the immune system in the periphery will result in brain inflammation. Thus, drugs that are associated with strong peripheral inflammation are predicted to induce chronic depression. In fact, the prediction is verified by the facts. The phenomenon of more relapses to depression among those taking antidepressants compared to the unmedicated has been the theme of several publications. This phenomenon was discussed in Anatomy of an Epidemic. It was the subject of publications by Giovanni Fava (1994), Fava & Offindani (2011), and Andrews, Kornstein, Halberstadt, Gardner, & Neale (2011).

The CDC reports that 14% of the 11% of Americans taking antidepressants have been taking them for a decade or longer, while 60% have taken them for two years or more. For these individuals, the prevalence of inflammatory diseases such as Type II diabetes, cardiovascular disease, cancer, and chronic depression are likely to increase. Ironically, the very condition for which they are taking the antidepressants, depression, will also be exacerbated.

Fortunately, more consistent ways of decreasing systemic inflammation are available. In coming weeks, I will be blogging on these other more salubrious alternatives.

Andersohn, F., Schade, R., Suissa, S., & Garbe, E. (2009). Long-term use of antidepressants for depressive disorders and the risk of diabetes mellitus. American Journal of Psychiatry, 166(5), 591-598.
Fava, M. (2000). Weight gain and antidepressants. Journal of Clinical Psychiatry, 61 (Suppl. 11), 37-41.
Hamer, M., Batty, G. D., Marmot, M. G., Singh-Manoux, A., & Kivimaki, M. (2011). Anti-depressant medication use and C-reactive protein: results from two population-based studies. Brain, Behavior, and Immunity, 25(1), 168-173.
Kivimaki, M., Hamer, M., Batty, G. D., Geddes, J. R., Tabak, A. G., Pentti, J., et al. (2010). Antidepressant medication use, weight gain, and risk of type 2 diabetes: a population-based study. Diabetes Care, 33(12), 2611-2616.
Licht, C. M., de Geus, E. J., Zitman, F. G., Hoogendijk, W. J., van Dyck, R., & Penninx, B. W. (2008). Association between major depressive disorder and heart rate variability in the Netherlands Study of Depression and Anxiety (NESDA). Archives of General Psychiatry, 65(12), 1358-1367.
Raeder, M. B., Bjelland, I., Emil Vollset, S., & Steen, V. M. (2006). Obesity, dyslipidemia, and diabetes with selective serotonin reuptake inhibitors: the Hordaland Health Study. Journal of Clinical Psychiatry, 67(12), 1974-1982.
Shah, A. (2011). Antidepressant use linked to thicker arteries. Emory University. Atlanta, GA. Retrieved 12/12/11 from http:shared.web.emory.edu/whsc/news/release/2011/04/antidepressants-linked-to-thicker-arteries.html.

As you read now about my time there, I would again like to ask you to keep in mind the question I posed in my first two blog entries- “If Madness isn’t what Psychiatry says it is, then what is it?”  Because on I-Ward, madness was not believed to be anything like what psychiatry imagined it to be.

At the end of this post, you will find a list of references that support an alternative understanding of madness and how best to respond to someone in that madness process. For scientific data on this approach, please see the Agnews study, the Soteria research, and other medication-free results. John Bola has written several articles summarizing this literature, and one of his articles a few years ago set off a firestorm of debate in the academic psychiatric community and in the pages of the New York Times because it challenged the practice of prescribing antipsychotics as a matter of course during first- and early-episode psychosis.

Also, the recent Open-dialogue research in northern Finland, which involves minimizing use of neuropletics, and a process that involves defining madness as a process that should be responded to as a meaningful life crisis,  shows similarly remarkable first-episode results. Schizophrenia diagnosis rates have plummeted in northern Finland as a result of the Open-Dialogue program, as cited in Robert Whitaker’s Anatomy of an Epidemic.

The program leaders in Finland describe madness almost exactly as R.D. Laing described madness and the psychosis-inducing family almost 50 years ago in a partially NIMH- funded study of 25 families with a mad member in Great Britain! The Open-dialogue leaders say: “Psychosis does not live in the head. It lives in the in-between of family members, and the in-between of people. It is in the relationship, and the one who is psychotic makes the bad condition visible. He or she ‘wears the symptoms’ and has the burden to carry them.”

Here is the story of I-Ward, a 20 Bed, Medication and Diagnosis Free, First Episode Madness Sanctuary.

In 1975, Contra Costa County Hospital I-Ward founder Dr. Stanley Mayerson was emboldened by the California state hospital Agnews project. This was a gold-standard, NIMH funded double-blind study, where the longer-term outcomes for the unmedicated patients (first and earlyi-episode madness) that they were seen by someas seriously challenging the validity of the schizophrenia diagnostic category itself. The much, much lower follow-up re-hospitalization rate of the randomly assigned placebo group vs. those who got Thorazine pointed to the efficacy of non-medication treatment of first and early- episode psychosis.

Mayerson designed I-Ward based mainly on a vanguard definition of madness that was formulated at the Esalen Institute and demonstrated on the Agnews project where he had worked.

I-Ward founder Mayerson, who also focused greatly on the role of the ‘identified patient’ in the family therapy we did there, had actively been part of an Esalen Institute initiative on ‘Alternative Approaches to Psychosis,’ which was led by Esalen Co-founder Richard Price.

Price had been through his own madness ordeals, forced hospitalizations and shock treatments and wanted Esalen to be a refuge and force for developing an alternative vision and response to madness. That Esalen activity grew and became responsible for the design and implementation of the Agnews Project.

The Esalen initiative on madness was a remarkable, decades long series of gatherings- some for up to 2 months in length! Last month I co-led an Esalen workshop called- “An Integrative Approach To Psychosis,” in an attempt to revive that venerable tradition that had gone dormant for some years.

Attending those earlier invited, closed symposia were more than a few veritable giants in the field of western psychology, philosophy and anthropology. These historic multidisciplinary explorations about madness held at Esalen drew Gregory Bateson and Erik Erikson, Fritz Perls, Joseph Campbell, John Weir Perry, Abraham Maslow, Alan Watts; Michael Harner, Stan Grof, Claudio Naranjo, Allen Ginsburg, Jullian Silverman, R.D. Laing and more.

The syncretistic, alternative vision of the very nature of madness and how best and humanely to respond to those in a madness process that partially evolved out of that brain trust at Esalen, sees madness as a very complex and multi-dimensional subjective, somatic, familial, archetypal, trauma influenced and social/cultural bound experience that is not a form of bio-medical pathology.

Early onset madness came to be seen as a purposive, necessary healing crisis that is often a rite of passage into young adult hood. Madness occurring later in life was seen as an attempt to integrate earlier wounds or a response to overwhelming adult trauma and loss. Both passages of madness were seen as needing a heart centered, non-pathologizing  response by care givers,

Every form of modern madness was also held to be an experience of the ancient archetypal mystery that has been marveled at and feared throughout human history, as described in Plato’s Phaedrus, in the Bible and by C.G. Jung, Anton Boisen, John Weir Perry, and also by the writings on shamanic initiation by M. Eliade.

Madness in our lifetime was also viewed through the historical lens of seminal writers such as Michele Foucault, Gregory Bateson and R.D. Laing- who believed our post modern culture was itself a fragmented, often heartless wasteland which was the inescapable, toxic Petrie dish in which record numbers of young adults were required to become mad in order to move into an authentic and fuller life.

Their young, ‘leaving home’ madness was seen by the Esalen thinkers as an effort to free themselves from the injuries inflicted by the dog eat dog social Darwinism and soul killing materialism that permeates our  largely loveless social environment, that has caused the socially embedded nuclear family to become the wounding crucible of our culture.

Our culture itself was seen as being self-destructively mad and actively endangering human survival on earth.. In this view, the modern family itself is the primary but unwitting vehicle for inflicting the madness inducing wounds of the broader culture’s traumatic impact on childhood development.

Feminism was another important influence in the evolving, alternative vision of madness that was discussed at  Esalen. The feminist critique of culture dialed the historical microscope further back to look at the over-arching myth our culture lives by and through. From the perspective of the effects of the patriarchal mono myth that reifies guilt, shame and fear of punishment as core values we are effected by every moment, madness was also seen as a rebellious outburst of polytheistic pagan energy, a Dionysian and Aphrodite led revolt against the oppression of the sacred feminine and sexuality.

Madness itself was seen as a vehicle for revolutionary cultural change because it supplied needed visionary content that pushed the edges of understanding and contained numinous elements from beyond consensual consciousness. For John Perry and Joesph Campbell especially, madness was seen as an ancient source of inspiration and a contributor to the evolving, emerging myth form that was challenging patriarchy.

Through the visionary, shamanic and prophetic content of madness that often involved themes of world renewal and a messianic vision of a healed and peaceful earth, the mad among us were seen as possible harbingers of change at the level of the development of a new myth form itself. Campbell and Perry pointed to the emerging myth motif that appears repeatedly in modern people’s madness as being centered on a compelling concern for the earth, our sacred home that has been likened to Gaia, a living organism that births all life.

The recent publication of Jung’s ‘Red Book’ shows how his visionary madness did bring enriching content for the culture in addition to being the emotional and symbolic record of his own transformative madness. He said it contained the prima materia for his lifetime’s work.

The work of my friend David Lukoff and the Esalen based work of Stan Grof also support the claims of the field of Transpersonal Psychology that madness can be a rich personal transformation, even an initiatory spirtual emergency at one level that also brings valuable, numinous material into the broader culture.

I was already a true believer in this Esalen style, comprehensive version/vision of madness cited above before I got  to I-Ward, so it was like finally finding my tribe when I got there in 1980.

But there is always a risk involved in feeling one is part of a vanguard movement. In the 60′s and 70′s many of us felt that we were part of a naturally occurring cycle of revolution that would overthrow the capitalist, war making patriarchal system. We made many mistakes, the largest to my mind was demonizing those who we opposed. Those who aspire to hold the purist vanguard truths often find themselves inflated and acting from arrogance and without compassion.

So, the feet of clay of some of the pioneers in the alternative madness revolution were starting to show as I walked through the wide open, never locked double doors onto the I-Ward madness sanctuary for the first time.

The building was a single story, free standing old TB ward that was on the edge of the hospital grounds, with a miles of open hillside behind it and it had a wonderful redwood grove overshadowing the building.

As I entered that amazing zone, the hair on the back of my neck stood on end because there was a palpable energy filling the air I had never felt before.

It mainly was being generated by the several young men and women I saw moving about who were fully ramping up in their first ever madness experience. The strangely almost electric buzz in the air was buoyed up also by the several young men and women who were into their second or third week of madness as I would soon learn.

They also were of wild and shiny eyes and, like the newcomers, were expressing unbridled emotion and displaying bodily movements and using metaphorical speech that was out of the ordinary, but not as intensely as those that had just arrived that in the past few days.

The last group of young men and women residing there that made up the contingent of 20 souls were still mad, but were a lot less mad. They could easily be mistaken for staff. Everyone wore their own casual clothes of mostly Levis and short sleeved shirts.

The program director came out and met me, and when we sat together, he seemed nervous as he asked me a very surprising job interview question. He started by saying that the staff had just recently had a training by one of R.D. Laing’s close associates from Kingsley Hall in London who had exhorted the I-Ward staff to be willing to have sex with the residents if necessary, in order to prove that all the trappings of the colonial oppressors of our corrupt culture had been cast aside.

So the director asked me if I agreed with Laing’s co-worker that we should have sex with the mad young people there. I could see it was a serious question for him that he felt he had to ask me. Although it felt quite surreal, I found myself answering,- ”No, I don’t believe it ever is right to have sex with people we are serving.”

He seemed relieved and after a few more questions I was offered the job.

How far, I then realized, was I from the world of the high end private psychiatric hospital where I still worked. The bearded, wild haired I-Ward director sported several hoop earrings of various sizes and wore a leather pouch across his chest. His fellow psychiatrists at the private hospital usually wore camel hair coats and Armani suits and even I had managed a tweed sport jacket and affected a briar pipe in a self conscious and now laughable attempt to fit in as a young intern still in graduate school.

But I immediately felt at home on I-Ward. Madness was palpably in the air and so was a loving, receptive acceptance of it that felt viscerally right to me.

In many ways I-Ward was more radical than both Mosher’s Soteria and Perry’s Diabasis, the other SF Bay Area med-free sanctuaries that were seen by us as competition for who provided the best model of responding to madness.

We served everyone who came to psychiatric emergency who was mad for the first and sometimes second time. There was a larger locked ward on the hospital grounds where medication and restraints were used for people who had been in the system for a longer time. We wanted to divert and prevent any new mad people from being in the system.

Within minutes of someone’s first contact with the system, one of us would walk down the hill and after a brief intake, bring them up to the sanctuary. Unklike Soteria and Diabasis, we took all comers- no matter how violent, wild, suicidal or out of comtrol. Our resident population was very ethnically diverse as were the staff.

Although I-Ward was open for 8 years and served vastly more young mad people than any other alternative program that has ever existed in the United States- easily more than many times the amount of Soteria and Diabasis combined, it is almost unknown about today because there was no research component built into the program design as at Soteria.

On I-Ward we did not believe in a mental illness paradigm of human emotional suffering and madness and the diagnostic labeling that supports the medical model. So we were opposed to testing anyone to see what their symptoms and functioning were when they arrived using the standard tests that we felt were de-humanizing and that objectified people.

From our revolutionary perspective, I-Ward was a pirate ship or a Trojan Horse, or perhaps the leaven that would transform the whole system around us, but we didn’t want to prove it’s value by putting the mad people we sheltered there through the seeming degradation ceremony of measuring their subjective madness with qualitative, medical model designed testing.

As part of a county mental health system we were required to have a diagnosis for every person to receive public insurance payment, but since we didn’t believe in mental illness, diagnosis or schizophrenia, and because we knew that if people were given sanctuary when first mad- they didn’t have to earn the 6 month schizophrenia label, we just diagnosed everyone with brief reactive psychosis.

But we  described madness to residents, family and loved ones as a process of growth and individuation-  a necessary developmental crisis of dramatic separation from the family. Again, this seems quite similar to the current Open-dialogue approach.

Two weeks after my memorable job interview I took a leap of faith and left my job at the high end private psychiatric hospital and reported for work at I-Ward. But they wouldn’t let me work! They instead just required me to be there with no responsibilities for over a  week. That was their way of seeing how the mad residents related to me and how I related to them. It was unnerving. I was afraid I wouldn’t be kept on, and would be dismissed, without a job to return to at the private hospital.

Until finally one day I was met by a somber senior staff person as I arrived at work. He pronounced- “We have decided that you are able to be entrusted to… do the work!”

The work. That is what they called this way of being with mad people.

He told me that the first person I was to work with who had just arrived from our psychiatric emergency unit down the hill was alone in the back dayroom. I asked who it was and he just said- “Go find out.”

I walked back to the dayroom and standing on a table about three feet off the ground was a totally nude beautiful young woman in an ecstatic transport! Her arms were were outstretched to the heavens and her face was a mask of radiant ecstasy as she chanted over and over in a quavering, almost sobbing voice- “Glorious, Glorious, Glorius!”

I was so stunned I didn’t know what to do. In my 2 weeks of job probation until that day, I had never seen anyone on I-Ward this completely gripped or possessed by madness.

I remember now introducing myself which felt pretty stupid, like someone interrupting Saint Theresa who I remembered seeing paintings of, that looked very similar when she was in mystical transport.

The young woman finally looked down at me kindly with such sweet kindness, that I again was at a loss to account for her nudity and saint-like demeanor.

I ushered her to her nearby room where she wrapped herself in a blanket and sat and continued to more softly now repeat- “Glorius, Glorius, Glorius.”

Writing this now, 32 years later, I still am moved and humbled by the incredible power and at times terrible beauty of madness I was fortunate to have witnessed that day in the young mother that I came to know so well over the next many weeks.

But her divine light filled consciousness was soon to shift to the other pole. Within a day I remember meeting with her as she explained that the glorius spirit of god resided in the right side of her body and directed her right hand, but that satan was in and controlled her left hand and half of her body.

She extended her left hand to me and as she did her face was transformed into a mask of almost snarling malevolence and her voice became guttural as she rasped- “In this hand is the evil of satan..”

She then tried without prompting from me to shift back to her light and love filled right side and easily was able to do it.

She was not frightened by this back and forth shift of darkness and light. I must say that I was. It was so uncanny to witness this and to feel  responsible for her life and her healing. There had been a suicide of a heavily medicated young woman at the private hospital while I worked there and just before I started on I-Ward there had been a suicide by a young un-medicated man on I-Ward.

But the young mother in my care was meant to survive her dramatic journey through madness.

We were always expected to convene a large meeting of family members and close friends of every young mad person on I-Ward within 24 hours of their arriving there- much like the current Open-dialogue practice.

The young mother’s husband and parents and siblings attended my first ever family meeting. I must say that what I witnessed there has sadly been my experience to varying degrees in every family where a young adult has gone mad in 30 years of specializing in serving people in madness processes.

On I-Ward I soon came up with my own litmus test that every family where a young adult becomes mad has sadly not passed- the apple of my eye test. Does at least one parent look at and express the feelings I have for my own daughter- that she is the apple of their eye?  Do they insist that they will move mountains to get help for their precious son or daughter out of a strong passion that has juice, energy and won’t stand for less than the best.

Freud said that nothing is more important for the healthy development of a child than the loving, protective presence of their father. At least one parent needs to be there and hold the child in their heart as the apple of their eye. Even then the lack of the other parent’s love can be a big enough wound that the developmental hurdle of young adulthood requires madness to occur.

There was a measurable lack of emotional warmth in the nuclear family of the young mother.

There was a palpable sense of subjective isolation existing between them all as we sat togrether.

No one but her overwhelmed young husband leaned forward in their chairs to offer concern and emotional caring. I realized that I was witnessing the emotional wasteland Laing had described in the families he researched.

There was a subtle mystification of experience in the communication between family members that Laing said resulted in the identified patient not being able to trust their own mistrust.

In other words, people were not communicating directly, but through confusing half-truths, through statements that both blamed and praised her at the same time, contradictory signals of incongruous facial expressions such as smiling when being hostile were happening.

This madness inducing situation Gregory Bateson described as a double bind, which leaves the recipient not knowing which of the mixed messages they are getting they should respond to. It is a contributing factor to the sense of being isolated and unable to connect with family members authentically.

I believed that my work in meeting with the family of the young mother was to help untangle these family communications so that she could start to know where she stood with her parents especially. I don’t know that I ever really succeeded in my freshman family therapist efforts.

Looking back now I believe it was the caring connection with me and other staff she connected with that made for a space or crucible for her psyche to do it’s own re-organization, using the rocket fuel of un-medicated madness to surge up emotion and the imagery that gave form to the emotion.

I believe that procees of being held emotionally, in warm human hearted connection ultimately allowed her to resolve the dark/light polarities- the good mother/bad mother judgements she was tormenting her self with before she got mad.

Emotion is the core of madness and medication stills it and stops the needed power of emotion to carry the psyche’s mission forward. She would rage for over an hour at times in our padded, unlocked room where we would hold people lovingly when they were out of control.

We used no restraints and every time after long periods of wild raging people would wind down and end up cuddling into the sometimes 2 or 3 staff needed to hold them. They would then softly start to cry and sometimes sob in a deep regrression of safely being held by strong and loving parental figures.

The young mother left I-Ward after about 2 months and I wondered for several years what ever became of her. Then one day I received a phone call from her at the clinic where I then worked asking me for a referral for a family member who had a problem. I came up with some phone numbers for her and then asked her how she had been since I had last seen her.

She answered matter of factly as if I should have known- “Oh Michael, didn’t you know, I got all of mine out on I-Ward!”

It was my priviledge to serve many other people on I-Ward in the next 3 years. It made a believer out of me in people getting what they need when they need it.

One more I-Ward story must be told here though, because it is what I remember most from those years on the sanctuary.

I was working the pm shift and was sitting outside a young person’s room in a chair in a vigil as we did when someone was feeling suicidal. The lights were dim in the long hallway stretching down towrds the entrance. I saw a young woman come out of her room looking to be frightened, as nightime often stirs fears that day would hold at bay as I knew well from my own season of madness.

She was approached at once by one of the very kind women staff who put her arm lovingly around the frightened young woman’s shoulder. The older woman leaned her head over and smiled warmly at the young woman, speaking words of comfort that I could not hear at the distance.

Suddenly a golden light surrounded them both. I shook my head as if to rouse myself from a dream I was slipping into. But I wasn’t slipping into a dream. Some would say I was hallucinating. but I don’t beleive I was, because the light somehow held an emotion in it that hung there in the air around them. It was a light of love that seemed ancient, old, very rare. It vibrated and my heart was shaking with a feeling that took my bretah away. It was the light of the sanctuary, the ancient healing light that hovers over and in sanctuaries where the mysteries of madness and healing occur and have occured ever since we became human.

Research references and reading suggestions-

Bateson, G. 1956- Towards a theory of schizophrenia
Bateson, G. 1972- Steps to an ecology of mind
Boisen, A. 1936- The exploration of the inner world
Bola, J. 1998- Evaluation of treatment in early episode acute psychosis
Bola, J and Mosher, L. 2003- Treatment of acute psychosis without neuroleptics
Bower, B. 2001- Back from the brink: psychological treatments for schizophrenia
Breggin, P. 1994- Should the use of neuroleptics be severely limited
Burton, A. 1961- Psychotherapy of the psychoses
Campbell, J. 1984- The way of the animal powers
Ciompi, L. 1995- Alternatives to the hospital for acute psychiatric treatment
Dabrowski, J. 1964- Positive disintegration
Dallet, J. 1988- When the spirits come back
Duerr, M. 1996- Hearing voices
Eliade, M. 1954- The myth of the eternal return
Eliade, M. 1974- Shamanism
Fisher, D. B. 1994- Health care reform based on an empowerment model of recovery
Fortuna, J. 1995- The Windhorse program for recovery
Foucault, M. 1965- Madness and civilization
Fromm-Reichman, F. 1948- Notes on the development of treatment of schizophrenics by psychoanalyitic psychotherapy
Goffman, E. 1961- Asylums
Greely, A. 1974- Ecstasy: a way of knowing
Grof, S. 1989- Spiritual emergency
Gunderson, J and Mosher, L.- 1975- Psychotherapy of schizophrenia
Haley, J. 1997- Leaving home: the therapy of disturbed young people
Harding, C. The Vermont longitudinal study
Harner, M. 1980- The way of the shaman

Henderson J. 1997- The spiritual foundations of madness- an interview with John Weir Perry
Jung, C.G. 1953- Forward in J.W. Perry – the self in psychotic process
Jung, C.G. 1965- Memories, dreams, reflections
Jung, C.G. 2010- The red book
Karon, B. 1981- The psychotherapy of schizophrenia: the treatment of choice
Kuhn, T. 1962- The structure of scientific revolutions
Laing, R.D. 1959- The divided self
Laing, R.D. 1964- Sanity, madness and the family
Lukoff, D. 1985- The diagnosis of mystical experience with psychotic features
Menninger, K. 1959- Towards a unitary concept of mental illness
Mindell, A. 1988- City shadows: psychological interventions in psychiatry
Morrisey, M. 1988- Exploring burch house
Mosher, L. 2004- Soteria
Pao, P. Therapeutic empathy and the treatment of schizophrenics
Perry, J. 1953- The self in psychotic process
Perry, J. 1962- The reconstittutive process in the psychopathology of the self
Perry, J. 1974- The far side of madness
Perry, J. 1976- Roots of renewal in myth and madness
Perry, J. 1986- Spiritual emergence and renewal
Perry, J. 1999- Trials of the visionary mind
Rappaport, M. 1978- Are there schizophrenics for whom drugs may be unnecessary or contraindicated- the agnews project reasearch
Scheff, T. 1975- Labelling madness
Seikkula, J. 2003- Open dialogue approach
Szasz, T. 1974- The myth of mental illness
Sullivan, H.S.- Schizophrenia as a human process
Whitaker, R. 2002- Mad in america
Whitaker, R. 2010- Anatomy of an epidemic

However, there is more to this story.  To summarize the findings of a large meta-analysis (Gilbert, P, et al. Arch Gen Psych. 1995;52:173-188):

16% of individuals relapsed despite being on medications.

47% of people who are not taking medications do not relapse.

Therefore, maintenance medications reduced relapse rate in less than 40% of  people.

In an accompanying commentary, Ross Baldessarini suggested that in some people relapse was due to the abrupt discontinuation of medications and more people would have done well if the dose reduction had been gradual (Arch Gen Psych. 1995; 52:189 – 191). If this is true, the percentage of people who are deriving benefit from remaining on medications is probably even lower.  It is difficult, however, to determine who these individuals are.

As I re-consider this problem, I have a clearer recognition of how expectations influence  clinical decision making.  The bias for those who have confidence in the overall efficacy of medications is to believe that when someone does well it is the result of the medication and when someone does not do well it is the result of the underlying illness.  A patient of mine is extremely distressed by her voices which she hears continuously.    Periodically, she gets so annoyed by them that she shouts out loud in response to their taunting.  I reduced the dose of medications to try to minimize side effects.  The next time she had a bad day of shouting at her voices both she and the people who live with her were convinced that it was the dose reduction that had caused this episode.  It was the belief that medications are helpful that led this patient and her support system to conclude that it was the dose reduction that had caused the shouting episode even though she had these episodes at regular intervals before the change was made.

Many years ago, I conducted a small study of people who were admitted to a hospital because they had experienced an increase in psychotic symptoms. The people in the study had all been taking neuroleptics prior to the hospital admission. The common practice was to increase the dose of these medications. Most people improved and would be discharged on a higher dose of medication. The assumption was that they got better because of the medication change.  In this double-blind study, some people received an increased dose of medications and others remained on the same dose they had been taking prior to admission. We found that at 10 days, most people  felt better regardless of whether or not their dose was increased (Steingard S, et al. Journal of Clinical Psychiatry  1994; 55 :90  470-472.). This small study suggested that the common practice of increasing the dose of medication was not necessary. It also demonstrates how one’s bias can lead one to form an incorrect conclusion.

At the same time, however, I would posit that those who do not believe that medications are of benefit have their biases as well.  When they encounter someone who is taking medications and is not doing well, this is assumed to be the result of the medications.  When they meet someone who is on medications and doing well, I suspect they tend to believe they are doing well despite their use of medications. My point is that in any given individual it is hard to be sure what the impact of the medication is and we tend to provide explanations that fit our frame of reference.

Although for many years I have practiced with the knowledge that it is important to minimize exposure to neuroleptic medications,  I still do not know who among my patients will be most successful in tapering medications.  My current plan is to systematically track and record my experiences.  I am hoping that by doing this, I will be less likely to be influenced by the dramatic events that might tend to have a disproportionate impact on my thinking (the person who comes off medications completely and does well or the person who gets much more distressed after having done well for many years).  I hope that I can collect enough data to be able to make a contribution to our understanding of neuroleptic taper.

A few years ago, I participated in a workgroup wresting with scenarios focusing on shared decision making and resolving disagreements between psychiatrists and their patients. I’ll never forget how our small group noted that the solution to each scenario’s conflict was to “Bring in the peer!” as if the peer had some magical ability to resolve conflict by moving the patient to agreement. By day’s end, we were sarcastically singing “Bring in the peer to save the day!”, creating a new super hero theme song.

That memory reminds me to closely examine what we do as peer providers, administrators of peer run agencies, and trainers of peer specialists so that we do not veer from the core principles of self-help and our ‘peer-ness’ within this field of mental health.

Does ‘membership’ equal recovery?

Around the country, consumers of the public mental health system speak of ‘empowerment’, ‘recovery’ and ‘independence’ while being disempowered, and made reliant on a system that uses the word ‘recovery’ as only a buzzword. Mental health programs refer to the people they serve (clients) as ‘members’ – life long members in a club that given the choice, most would not choose to join. Yet our peers demand that their wellness, recovery and socialization groups stay in the mental health centers or drop-in (really drop-out) centers. Further, our peer-run organizations are primarily funded by local or state mental health departments and certified peer specialist are paid via billing their state Medicaid.

As a director of a peer run organization funded primarily by our county department of mental health, I have to wonder if we are walking our own talk or are just mirroring what we learned from being a part of the public mental health and SSI entitlement system in which many folks are/were literally system lifers.

When our peer groups meet in the mental health centers, I contend the ‘illness’ becomes the center of our lives. We are missing the opportunity to lead full rich lives; explored and celebrated in places that thrive naturally within our community. Wellness Centers offering programs such as yoga and art are a step in the right direction, however, they are akin to ‘drop-in’ centers that drop people out of the same activities occurring in their neighborhood churches, community centers, and YMCAs. Once again, the ‘illness’ is the commonality bringing people together all day, every day for what appears to be forever.

Hanging onto the safety net

As we educate and support the people we serve about independence, self-reliance, interdependence and taking advantage of what’s in our natural community, we meet a great deal of resistance. People receiving services in the public mental health system are justifiably fearful of leaving a world that has cared for them, kept them safe, and provided for their needs in the midst of a very fragmented health-care system. The system has ‘welcomed’ them as members when their natural community would not. This has created what we all so desperately want and need – a sense of belonging and community but also reliance and centered-ness in their lives. It is not easy to help people see that they have been duped. This is happening both nationally and internationally.

Moving toward independence

As peers and peer-run organizations, we look to the system for our very sustenance, proclaiming that this relationship and the receipt of funding legitimizes and professionalizes our work as peers. I advocate for our programs to move towards true self reliance, independence and empowerment. I’m not in agreement that all of our peer services should be reimbursed by state Medicaid. This would be a bastardization of the meaning of our work as peers. We must work together to determine which peer services fit with the requirements of Medicaid billing and work toward diversifying our funding to maintain our independence.

‘Bring in the Peer’ must be more to the mental health system than window-dressing that communicates “recovery spoken here” to its constituents and the community. ‘Bring in the Peer’ creates the opportunity to support people in moving through the system with the ultimate goal of leading independent, healthy lives. As we rethink psychiatry, ‘Bring in the Peer’ also means collaboration between peer leaders, providers, and mental health organizations to promulgate the practice of true recovery both inside and outside of our mental health systems.

Moving forward: Collaboration in Los Angeles County

One good example of such collaboration is the ICSC pilot project sponsored by the California Institute of Mental Health (CiMH) in Los Angeles County. Using the Institute for Healthcare Improvement’s Breakthrough Series, the collaborative brought together peer leaders, people currently receiving services, program directors, providers and peer advocates with the aim of assessing how our services keep people ‘stuck’ and improving services that increase ‘client flow’ through the system.  This ICSC project yielded improvements in our LA County provider organizations’ capacity to serve new clients, by increasing the rate of flow to higher levels of recovery (lower levels of care), as well as transitions out of the mental health system into the community.

The true magic of peer support

The efficacy of peer support is well documented and peer programs such as Wellness Recovery Action Plan are considered evidence-based practices. Thus it is imperative that the use of peer provided services be included within our mental health system. This must be done in a way that does not restrict what we do as peers based on ‘medical necessity’. To be truly effective, the focus must be on the person and not the diagnosis. While our professional colleagues are constrained by ‘billing’, as peers we need the freedom to provide support by doing with rather than doing for.

By ‘Bringing in the Peer’ together, we can help to bring out the whole person.

I was very deeply touched interviewing Grainne Humphry about her former partner John Hunt’s ongoing incarceration in the Irish psychiatric system, and about her own struggles with extreme states. Grainne was herself swept up in madness after working as a successful punk rock musician led to a downward spiral of recreational drugs and sleep deprivation. In her psychotic state she could have suffered even worse were it not for the loving acceptance of her family. They guided her back to health with ongoing faith in her capacity to learn and grow from the experience —  in sharp contrast to what happened to her partner John, who did not have a supportive family and comes from a less privileged background. Grainne was courageous to do this interview: I was struck by her strong love for John and her very deep sensitivity to the violence she has witnessed him undergo in the name of treatment. She is a shining spirit and an example of a caring family member. Let us all lend our hearts and passion to the international campaign to free John Hunt and to ensure that no one ever has to suffer the abuses he has suffered. 

You can listen to the whole interview on the latest episode of Madness Radio:

http://www.madnessradio.net/madness-radio-chemical-crucifixion-grainne-humphry

Chemical Crucifixion: Grainne Humphry

Could a young man’s overwhelming visions of Christ and apocalypse be a creative response to life trauma, rather than signs of paranoid schizophrenia? Does madness unfold differently depending on whether it is supported – or feared? Irish activist and punk musician Grainne Humphrys, herself a survivor of an extreme state, discusses the campaign for the release of former partner John Hunt. John has been incarcerated and drugged against his will since 2005, sparking international outcry.

http://freejohn-loverevolutionary.blogspot.com/
www.youtube.com/watch?v=FQUKdaRaJNw
www.mindfreedomireland.com/
www.youtube.com/watch?v=YVjgRUI-IM0

Relocation is one of the most profound experiences. I noticed and said many times that “people are the same no matter where you go”. And just as in therapeutic work, you will find yourself and your issues in your case load/in your community. It happens without fail.

I was in tears moving back to Seattle. I listened to these lyrics over and over, “It’s a dream, only a dream and it’s fading now. A dream, only a dream. Just a memory without any way to stay.” (Neil Young)

I think it is very important that we mourn. Not to the exclusion of organizing. But to enhance it. The trick is steering clear of sorrow’s quicksand. I was washing away the current of life losses and the circumstances found in today’s societal woes. Barely seeing through the windshield of my own dreams I dragged myself forward one foot in the past, the other in the perplexing unknown.

Following the signposts on the ragged trail has always been one of my strong suits. One week before leaving Provo, Utah I received a call from a dear old friend of mine who asked me for a referral for a friend of his. One of the first things I did upon arrival in Seattle was to return that call. I placed myself in a period of exile, not telling more than two or three souls of my changed location. A self-imposed deep sabbatical lasting for a few months was initiated. I highly recommend this to anyone with the luxury.

We agreed to meet to watch the Super Bowl (as men may do) and discuss the matter at hand. The sports bar was dark, boisterous and smoke free. Pouring rain in the early weeks of February 2010 I couldn’t help but feel apprehensive. I wasn’t quite certain why. I took a deep breath regaining my composure. The game was a blur in the background. At half-time the band performed the number ‘Won’t Get Fooled Again’. A fitting theme could not have been more imagined.

As the third quarter got underway my friend proceeded to describe the problems of his old friend. Many years lay between their communications. He told me this woman had just been released from the hospital. She had spent a week on the psychiatric unit after becoming extremely distraught and following an effort to take her life. She recently went through a contentious divorce, was having financial troubles and strains in parenting. She was facing the prospect of a regimen of electric shock therapy should all else fail.

By chance this woman contacted my friend and reached out for help. Social internet provided the venue. She had been on many varieties of psychiatric drugs for dozens of years and had been through numerous psychotherapies for depression. At one time she was a vibrant, curious and self-assured younger person. My friend asked her if she would consider a completely different approach to her problems. She said she had come to the end of lifes rope and was open to trying anything. He told her that he knew a therapist who might be willing to help. I responded with a hint of sly irony, “I guess that would be me,” as the 3rd quarter drew to a close.

The crowd was getting louder while our conversation wound down. The medical professional, a fan of the men’s movement and folks like Michael Meade, was clear he felt a natural path was the next step for his long-time depressed companion. I listened and smiled without comment. I was thinking the same thing though I knew that I would have to speak with the woman before any course could be determined.

These words came next, “I moved two years ago to Utah in order to take a break from the action but within a week there I found myself facilitating an intervention for a case involving substance abuse. Then within another year I became involved with inpatient rehab. Now, having returned to Seattle, I am being asked to help someone presumably debilitated by years of treatment in the mental health system (among other things) back onto a more natural healing path. Is someone trying to tell me something?”

When I departed the high desert of Utah, I thought that I was coming home to the glorious Puget Sound. Little did I know, with everything that came before serving as preparation, I was returning to myself.

I’ve had a couple of remarkable conversations, not with my own patients, but with friends and acquaintances asking me for advice.  Each example depicts so much that is wrong with the biomedical model of mental health care.

First, a woman contacted me through a mutual friend.  She was placed on Celexa five years ago for reasons she’s not even sure about.  She was depressed after a divorce and not sleeping well, went to see her doctor, was placed on Celexa, was never again asked to stop it, or even reassess if she still needed it.

She gained over fifty pounds on the Celexa and eventually decided that she wanted to come off of it.  Her family doctor strongly advised her against this, but she did it anyway.  Without guidance, she went off cold turkey and had some terrible withdrawal reactions, but she started to lose weight and began feeling better overall after a few weeks, though more emotional. To her, the increased emotionality was not so bad.  In fact, she realized only after being off the Celexa how numb she had felt while on it.

She went back to see her doctor for a different problem.  She was nervous to tell him that she went off the Celexa, because he had been so adamant that she remain on it.  To her embarrassment, the second he walked into the exam room, she began bawling.  He said to her, on the spot, without further questions, “The nurse told me you stopped your antidepressant.  See, you clearly need to be on something.”  She told him through tears that she didn’t feel depressed, but he wasn’t buying it.  “This is not normal,” he told her as she he continued to cry.  He convinced her to try a brand new medication, Viibryd, that he said works great for depression and wouldn’t cause weight gain.  (I’m guessing he’d just been visited by a drug rep recently.)  He gave her three months of free samples.

She started the medication and immediately began having stomach issues.  Her doctor did not tell her that digestive problems are the most common side effects of Viibryd.   (I bet he didn’t even know.)  Instead, he told her she had GERD (esophageal reflux), and started her on a prescription antacid.  When she continued to get worse, he doubled her dose of it.  In spite of the stomach problems, she started gaining weight again, ten pounds in three months.  At this point, she was convinced the problem was with the Viibryd, but she was scared to talk about it with her doctor.  So she talked about it with her friend, who put her in touch with me.

I have not consulted with this woman personally, but from what I gather, it seems absurd to think that she has a pathological emotional problem requiring drug treatment.  It’s clear that she has been harmed physically and mentally by the various drugs she’s been placed on for her non-disease.  And yet, short of a chance connection with me, she never found within the vast health care system a provider who told her it was okay to be emotional, that she didn’t need a pill to make her “normal,” that the physical and emotional ailments she was experiencing were likely because of the drugs.  Also, I find the paternalism that her doctor displayed very disturbing.

Second, I received a phone call from a friend in the midwest.  A year ago, his wife gave birth to their fourth and final child.  She became very depressed during the time she was weaning her infant from breastfeeding.  She called her obstetrician, and over the phone she was told she had post-partum depression and was prescribed an antidepressant, Paxil.  This seemed to help her feel better, dramatically so.  Her husband–my friend who was so worried about his wife’s mental health–didn’t know what to think, but was glad to see her feeling better.  He asked her, “How long will you need to stay on it?”  She didn’t know.  Her obstetrician never told her how long to stay on it, what the side effects were, had never recommended any non-medical treatments like diet or exercise or counseling.  She thought she might need to be on it for life.

This didn’t seem right to my friend.  Why would she need to be on a pill for life just to feel well?  Through social networking, he was aware of my involvement in mental health reform and he asked me a few questions and started doing his own research.  He purchased “Anatomy of an Epidemic” to try an educate himself on these matters.  He became concerned about the long-term consequences of the medications for his wife, especially when, after about six months on the Paxil, he noticed a worsening of her anxiety and depression, as well as some personality changes.  Her doctor, instead of questioning her need for the medication in the first place, instead increased her to the maximum dose of it, again over the phone.

Paternalism.  Reflexive prescribing.  Willful ignorance to side effects.  A paucity of alternatives offered.  I feel so ashamed of my profession at times like these.  I feel like screaming, “Don’t go see your doctor if you’re feeling sad or anxious!  The only thing he or she can do is put you on a pill you don’t need, that may hurt you, that may make your sadness and anxiety worse over time!”

Of course that’s not true.  There are many conscientious, insightful doctors who only use drugs judiciously and as a last resort.  But there are so many that just accept–and promote– the biomedical model, hook, line and sinker.

Who are patients going to see in their hour of distress?  Who else will step up to help them navigate the waters of emotional pain, just when they are most vulnerable?  The system–meaning the drug marketing, the insurance companies, government programs, media coverage, cultural norms–these all funnel wounded patients towards their primary care doctors, whose drug closets are bursting at the seams with samples of the latest and greatest wonder drugs.  It is primary care doctors who prescribe 75% of psychotropic drugs in this country.

And another problem is that a lot of patients just want that pill anyway.  It’s so easy to take a pill, so hard to do things like exercise and eat properly.  Doctors perceive that patients expect pills.  They don’t know what else to offer.  It’s so hard to motivate someone to change their lifestyle.  There’s no real incentive for doctors to investigate or recommend alternatives.  And thus the negative feedback loop accelerates.

This is system failure.  It’s devastating to see patients and friends who only want to feel well, and wind up getting ground up in the gears of the machine.

Mark

Editor’s note: These letters are selected from an exchange that Dr. Foster and Robert Whitaker have had since he read Anatomy of an Epidemic. They describe his interactions with his patients, and his changing thoughts about the prescribing of psychiatric medications. In all of these letters, the specific patient situations he describes are real, but all identifying characteristics have been altered or obscured, or permission has been sought, in order to protect patient privacy.

Each time I share my story, it gets a little easier. I feel a little lighter, a little more hopeful. And I realize how far our family has come, how much we have learned and healed.

Stories are powerful. And so is the process of telling them.

Here is what I have observed over my last 10 years of storytelling:

Sharing our pain makes it easier to bear. Being able to share my story in a safe nonjudgmental space has been deeply healing. So has hearing that other families have experienced similar challenges, fears and concerns. I know now I am not alone. Not by a longshot.

Stories inspire hope. When families come together, we not only share our pain but also our joy. We help remind each other that our family members are whole and complete human beings with unique talents and strengths. Our recovery stories offer hope to families that have forgotten or didn’t know hope was possible after a diagnosis.

Stories help us view our lives in new ways. Hearing other families’ stories helps us see patterns that might not be apparent when we are knee deep in our own. We see that recovery is a process with ups and downs. Sometimes there are leaps forward, sometimes steps backward. But over time, with good support, recovery moves in a positive direction. We also learn that there are many ways to heal.

We aren’t always the main character. For many of us, it takes a little time to realize that our family members are ultimately responsible for their own recovery. In fact, taking personal responsibility is the key to recovery. By sharing stories, families help each other learn how to let go, how to trust, how not to enable (or disable) and, yes, how to let our family members stumble sometimes. We are not the stars of these recovery stories, but we can play supportive roles.

We are the main character in our own recovery story. When a family member struggles with extreme emotional states, all family members struggle. Families need support and encouragement to work on their own recovery process to heal and find joy again. When families regain balance through self-care, they become more supportive and available to their family member as well.

Stories aren’t always pretty, or funny or happy. Stories aren’t always ugly, or serious or sad. They are all of these things and more. Just like life. When we share our stories, we cry together, we laugh together and we heal together. Stories help us access what is true about ourselves so we can create meaningful and supportive relationships.

Sometimes it is easier to tell our stories to strangers. Unfortunately, mental illness is still misunderstood in our culture. We don’t always feel comfortable or safe sharing our families’ emotional struggles for fear of being judged or blamed. Initially, it was easier for me to share my story with complete strangers. I knew I’d never see them again and, so I wasn’t as worried about being judged. Often, I felt that my story had really touched them. I also sensed by their reactions that they might have a similar story hidden inside them but had been afraid to tell it.

In my last blog, I shared my own family’s recovery story. This experience was initially wrought with sorrow and grief but it ultimately became the greatest gift. Without it, CooperRiis Healing Community would never have been created, and I would not have had the privilege of meeting and lending support and hope to hundreds of wonderful families.

I would like to invite each of you to consider sharing your story. Whether here in response to this blog or with a friend, a neighbor or a stranger—whatever feels most safe to you. What you will find is that you are not alone, that there are many stories out there, and that there is reason for hope.

Together, we can bring hope home. Where it belongs.

But weak science and exaggerated reports of discovery aren’t the special province of biological psychiatrists.  We don’t really understand much about the suffering that brings people into care. None of the science underlying mental health care could withstand the sort of scrutiny biological psychiatry is beginning to endure.

As one example, consider “attachment theory”—the idea that mental health depends on infants “becoming attached” to reliable caretakers. Countless therapists believe, and teach their patients, attachment theory. They devise innumerable interventions on the assumption that they can improve attachment. A huge research industry studies attachment, and claims a variety of important discoveries.

But outside the realm of its own believers, that science generally isn’t all that highly respected. The Harvard psychologist Jerome Kagan showed long ago that some research methods of attachment theorists simply don’t prove what they claim.   Behavioral geneticists have shown fairly well that many correlations attachment theorists attribute to attachment actually have mainly to do with genes, not parent/child interactions. No one denies that kids need good care, and neglected kids suffer for it. But it’s far from clear that “attachment” is the issue.

We don’t hear an incensed outcry against attachment theorists, though. Criticisms of attachment theory—Steven Pinker had some unflattering things to say about it in The Blank Slate—don’t get any traction.

As another example, consider the fact that few cognitive neuroscientists would agree with CBT’s account of how minds work. A consensus in the field holds, in effect, that the “distortions” that CBT theorists claim cause pathology are basic to how normal minds work. Nobel Prize-winner Daniel Kahnemann’s new book, Thinking, Fast and Slow, offers an exhaustive account of the research that led to such alarming accounts of how minds normally work.

That we’re not seeing an outcry against CBT is especially odd, since this work on fundamental irrationality has gotten an enormous amount of attention in the last twenty years—think of the bestselling books Predictably Irrational, Nudge, Sway, How Doctors Think, and the seemingly interminable outpouring of similar works.

One more example. We all hear, all the time, that CBT is “scientifically validated.” I’ll be looking at that claim over time—there’s much less to it than meets the eye. For now consider this: CBT research almost never looks at the side effects of treatment. We do not even know what kind of effects, beyond manipulation of moods, CBT has on how people live.  Completely ignoring the unintended consequences of one’s work would be considered bad science in any other realm of health care.

We get up in arms about the side effects of medications, but we don’t seem to care that CBT doesn’t study its side effects at all.

What’s my point? That we should stop criticizing biological psychiatry, since the rest of us do no better scientifically? That we should all go out of business because our scientific basis is much weaker than we claim?

Neither. My point is that we need to study the beliefs that we like as critically we study the ones we don’t. We don’t have to pipe down about the sins and shortcomings of biological psychiatrists—so long as we’re willing to be equally relentless in self-examination.

In truth, we don’t understand much about the suffering that brings people into care. We lack an adequate science of suffering. But when people need help, they need it, and we have to do what we can.

We need to cast our nets wide for any form of reliable knowledge. That may come from sciences outside the clinical realm—sociology or social psychology, for instance. It may come from at least some of the humanities disciplines—philosophy or history, certainly. Some astute observers of the human condition have cast their wisdom into literature.  Even a few journalists have noticed important things about how life works.

We learn, and use, rigorous methods of logical and evidentiary analysis and use them when we listen to our clients and parse what they’re saying. We need to know the difference between what we’re hearing and what we’re making of it. We need to know when what we’re hearing really doesn’t hang together. Many of those methods are better learned in the disciplines of communications, rhetoric, and logic than in psychiatry or psychology.

We can think through the severe limitations the conditions of care impose on what we can know about particular patients or clients, so that we’re less likely to offer things no one knows, or could possibly know, in the clinical setting. Philosophers are probably better than anyone else at analyzing what can and can’t be known under various conditions.

We can do all this from a position of humility, not authority. We can be honest with patients and clients rather than passing on our interpretations, instructions, and advice as if they were deliverances of Truth.

Recognizing the weak knowledge base of mental health care doesn’t have to be the occasion for despair. We can distinguish better from worse thinking even where we lack strong conclusions. We can distinguish the more likely from the improbable, the rash from the judicious, even when we’re not sure how a line of inquiry will play out.

As this blog goes forward, I will invite you to share with me the effort to do just that. I invite you to join me in the effort to think about care with care—to think carefully.

To see an example of what Dr. Greenberg is talking about, you do not need to go far. Several years ago Dr. Ronald Pies had an article in The New York Times titled, “Redefining Depression as Mere Sadness.”  The main thesis was that having an organic disease is not a prerequisite for psychiatric treatment, and that even people who are experiencing the ups and downs of normal life experience can benefit from seeing a psychiatrist.

The article starts off with the following case example:  “Let’s say a patient walks into my office and says he been feeling down for the past three weeks. A month ago, his fiancée left him for another man, and he feels there’s no point in going on.  He has not been sleeping well, his appetite is poor and he has lost interest in nearly all of his usual activities.”  Most people would call this normal sadness, or as Greenberg would say, “a category of suffering.” Most people would not call this a disease. In fact, we think most people have been in a similar situation at some point in their life- and have gotten through the situation without psychiatric help.

However, Dr. Pies sees him as clinically depressed and would provide him with whatever psychiatric treatments “he needed”.  In his words, “Until solid research persuades me otherwise, I will most likely see people like my jilted patient as clinically depressed, not just “normally sad” — and I will provide him with whatever psychiatric treatment he needs to feel better.”

In this day and age, psychiatric treatment from a psychiatrist almost always means medication- and for sadness, antidepressant medication. Dr. Pies seems to be suggesting that while the debates rage on about whether normal sadness should be treated like clinical depression, or whether patients have a serotonin imbalance or not, in the meantime, psychiatrists should not hesitate to treat individuals who do not meet traditional diagnostic criteria for mental illness, or who are reacting understandably to tragic circumstances- and to prescribe antidepressants.

To prescribe an antidepressant for someone three weeks post break-up seems to be a perfect example of medicalization, where medicine has turned a normal response to life-stressors into pathology.  We don’t think anyone reading this patient scenario could believe that the patient’s psychological state was caused by a serotonin shortage resulting from a genetic defect. In the absence of a disease, the purpose of the medications for this patient would seem to be to help him get over a difficult time period in his life – a bump in the road some might say.  Prior to the advent of the chemical imbalance theory the marketing programs for the older medications usually talked about depression in these terms.  For instance, an early advertisement for valium stated, “the daytime sedative for everyday situational stress.”  With the rise of the chemical imbalance theory all this changed, and instead the medications came to be seen as necessary to treat a fundamental problem with a person’s biology.

It now appears that we have gone back a bit in time to the idea that a chemical imbalance is not necessary for a diagnosis of depression. Now, a short-lived reaction to unpleasant life events is used to justify the prescription of antidepressants. We use Dr. Pies’ vignette as an example not to single him out, but because he has publicly presented it – and we certainly think his point of view is common in psychiatry.

It is easy to find objections to this strategy, though, from the perspective of science:

Where is the rigorous research showing that antidepressants are effective in bereavement or loss?

In particular, where is the research comparing antidepressants to psychotherapy, peer-support, exercise, etc., clearly showing that antidepressants are the better intervention in situations of bereavement or loss?

Is there a scientific evidence for prescribing antidepressants early when someone suffers bereavement or loss, rather than trying everything else first and leaving SSRIs as the treatment of last resort? If this method isn’t followed, why not?

The scientists on NPR discuss the fact that we now know that depression is much more complex than a simple serotonin imbalance. One guest describes the serotonin story as “late 20^th century thinking.” Listening to the show, you get the impression that the serotonin theory was a viable contender just a few years ago; as of 1999, for instance, a psychiatrist telling her patients that they suffered from a serotonin imbalance would have simply reflected the current psychiatric thinking; and only recently have we learned that it’s much more complicated than this…

But what if this isn’t true? What if research has indicated for decades that the serotonin theory is false, yet psychiatrists told their patients the serotonin story anyway? What would this mean?

Here are a collection of selected material from books and articles covering the evolution of the serotonin theory. Pay attention to the year:

“By 1970…[George] Ashcroft had concluded that, whatever was wrong in depression, it was not lowered serotonin.” [D. Healy, Let Them Eat Prozac]

“…the biogenic amine theory [serotonin, norepinepehrine, dopamine] now more closely resembles a venerable flag than a tool we can work with…” [Bernard Carroll, 1982, cited in Before Prozac by E. Shorter].

“The simplistic idea of ‘the 5-HT [serotonin]’ neurone does not bear any relation to reality.” John Evenden, Astra pharmaceutical company research scientist, 1990 [See Before Prozac by E. Shorter].

1991: The antidepressant drug tianeptine lowers serotonin but is found to be an effective antidepressant [See Chamba et al., 1991]

Psychiatric historian David Healy argues that the serotonin story is a marketing ploy, 1997 [See D. Healy, The Antidepressant Era]

“Although it is often stated with great confidence that depressed people have a serotonin or norepinephrine deficiency, the evidence actually contradicts these claims.” [Neuroscientist Elliot Valenstein, 1998, in Blaming the Brain]

“In truth, the  ”chemical imbalance” notion was always a kind of urban legend- never a theory seriously propounded by well-informed psychiatrists.” Ronald Pies, M.D., Editor of Psychiatric Times, in 2011

By the late 1990s and early 2000s, the scientific data on the serotonin theory was not only available to psychiatrists, but there were a series of popular-press books pointing out the problems with the theory, largely driven by experimental data from studies performed from the 1970s to 1990s. It seems reasonable to assume that practicing psychiatrists were just as informed about serotonin as members of the general public who read a book like Blaming the Brain or The Undiscovered Mind. Our current discussions take place 14 years after the publication of Blaming the Brain, and at least 20 years after scientific data showed clear problems with the serotonin theory.

By 2006, Wayne Goodman, M.D., the chair of the FDA Psychopharmacological Advisory committee, had publicly conceded that the serotonin theory was but a “useful metaphor” - and one he never used in his own interactions with patients.

Yet, here in early 2012, the fact that the serotonin theory has been falsified is newsworthy and, in our experience, often surprises people.

What does this say about the state of psychiatric science and practice?

Is this simply the slow march of scientific progress, or is something else going on here?

I watched listlessly as runners ran and couples walked dogs along the Charles River, thinking that I’d most likely never go for a run again and that I’d surely never be one half of a couple.  I focused intently on the route the ambulance driver was taking in an attempt to control the situation and feel like maybe I could have some agency over myself.  Yup, looks like he’s taking the Eliot Bridge, not the JFK Bridge.  He probably saved himself some time there; that intersection with Memorial Drive and JFK is a brutal one for traffic.  Focusing on this also helped distract me from the snoring EMT sitting strapped in a seat next to me who produced sounds I’d imagine might come from a dying cow.  I figured that maybe he’d worked long hours the day before, the poor guy, and he was just exhausted.  I couldn’t help but wonder if it was really more that I wasn’t worth his time to stay awake for.

I took in the familiar landmarks as they passed one by one and the miles between the ambulance and our final destination slowly decreased.  Out the back window, I saw the cemetery on my right float past and disappear into the distance, left eternally in its historic place.  The supermarket on my left, the furrier on the corner, and, some miles later, the Starbucks, the bakery, the fire station, Dunkin Donuts, the bus stop, another supermarket, and finally, the gas station.  I knew what patiently awaited me after this.  As I lay there on my stretcher, covered by blankets and strapped in tight, listening to the snoring pulse of the bus, I gazed at the familiar steep hill now shooting up out of the earth on my left, silent and ominous.

The hospital’s old abandoned brick gatehouse, protected by rusty wrought iron gates, sat at the base of the hill.  I remembered walking through those gates countless times during my early college years with a now-foreign sense of energized hope for my future, thick woods bordering the steep, windy road that wound me up the hill from the back of the gatehouse and towards the yellow-orange stone Administration Building sitting atop the rolling, well-groomed fields beyond.  Solitary in its welcome to hospital newcomers when I first arrived in early 2002, the gatehouse was now neighbored by espresso-brown and rust-red colored private condominiums— who would ever want to live on the outskirts of a psychiatric hospital? I found myself wondering— and as we coasted along the bottom of the hill, around the corner, and up its side to the main entrance of the hospital, I felt an eerie sense that I was coming home.

The ambulance chugged its way up the main road and towards the brick building at the center of campus, where it slowed to a halt and the EMT next to me snorted himself awake, quickly unstrapped his seatbelt, and opened the back doors of the ambulance without saying a word.  I couldn’t help but wonder if he was pretending I wasn’t there because he was disgusted by me and by what I’d done to bring myself here.  Fresh air and light streamed in on me as I lay still, imprisoned in my body and in my life, spiritless and numb to my surroundings.  If I could have moved, I wouldn’t have even cared to.  My stretcher was unlocked from the side of the bus and pulled out, the click of its legs locking into place reminding me that indeed, yes, I was about to be wheeled inside to my fate.  This was not a nightmare.  This was not some afterlife.  This was my living, breathing reality, and there was absolutely nothing I could do about it.

With one EMT at the front of my stretcher and another at the back, I was wheeled over cobblestones to the glass doors of the Evaluation Center.  I don’t remember clearly what belongings I had with me, where my parents were, or what happened next.  All I know is that I ended up that evening on the locked acute psychiatric unit upstairs.  I remember struggling to walk to the room they’d assigned me at the end of one of the halls, my hands frantically reaching for the walls, and soon thereafter being put in a wheelchair because I couldn’t stand upright or take a step without falling over due to a case of the spins that left me with no internal equilibrium.  My head ached, I was numb from my elbows to my fingertips and from my knees to my toes, and the rest of my body pulsated with dull pain.  I couldn’t think straight or talk clearly, words sputtering forcefully when I opened my mouth, and my thoughts were going a mile a minute.  My heart pounded, I was sweating profusely, and Pam, the petite but fiery nurse helping me, determined with a furrowed brow that the Boston hospital, my insurance plan, or whoever it was who had been in charge of making my medical decisions should not have discharged me from the medical unit, as I was still in acute withdrawal.

“Well, you’re here now, and the least we can do is move you closer to the nurses’ station and to a room with a hospital bed,” she told me, and I was wheeled back down the hall and to a new room, my bed freshly made with thin, starchy sheets, a stack of dry, scratchy towels resting on top.  A walker was put next to my bed in case I needed the bathroom, a cup of ginger ale and some saltines put on my bedside table, and I was told to get some rest.

My foolproof plan to end my life with 90mg of klonopin, 900mg of Lexapro, and 6,000mg of Lamictal was now wreaking havoc on my stubbornly living body, and all I could do was lie there and let it happen.  I was still in the early stages of cold-turkey withdrawal from not just the overdose but also seven years’ worth of daily psychiatric medications— other than a minimal dosage of lorazepam during my time at the hospital, I’d been abruptly taken off of everything else due to the internal organ damage it was said I’d sustained.

Given just a milligram of Ativan at bedtime that first evening, I knew I was in for an utterly sleepless night.  Although I didn’t believe in Hell, I was convinced I’d found the living version of it.  I lay on the bed, not sure if I needed five blankets or none at all, and adjusted the control until the backrest was up and my knees were bent high enough for the spins to subside ever so slightly.  The thought of a sip of water, let alone a cup of ginger ale and a few saltines, made my stomach heave.  All I could do next was batten down my hatches for what I knew would be a night of horrible internal storms.

Why the dramatic increase? Well, in 1994 with the publication of the DSM-IV, Bipolar II was added to the list of Bipolar Spectrum diagnoses. If you read the official rationale for the new diagnosis (see Dunner who headed the committee), the report will tell you that those meeting criteria for Bipolar II were midway between those with Major Depression and those with Bipolar I diagnoses on having relatives with the Bipolar I diagnoses. So even though others (Kupfer et al.) argued that those with Bipolar II were probably just depressed, the new Bipolar II diagnosis became legitimized.

While I have read no official explanation as to why a new diagnosis (Bipolar II) needed to be formulated, I can offer some speculation regarding what had changed in psychiatry that might have been the impetus for the new diagnosis. During the 1980s, prescriptions for antidepressants had taken off. The emergence of mania in people being treated with antidepressants was widely noted. There was speculation that only in those who were predisposed toward mania would antidepressants trigger mania. Perhaps, the new diagnosis was an attempt to identify persons meeting criteria for depression who should not be treated with antidepressants. The timing for the addition of Bipolar II to the 1994 publication of DSM-IV coincided with reports of mania emerging with antidepressant medications. Thus, the new diagnosis may have emerged not because there was a population that was problematic and suffering, but rather because established treatments caused disturbances.

So, how does one satisfy criteria for being Bipolar II? First, at some point in one’s life, one has to meet criteria for Major Depression. No problem, since community studies find that 24% of the population, at some point in their lives, have met criteria for Major Depression and studies conducted in Australia find that the percentage of persons experiencing a bout of depression may be as high as 40%. For Bipolar II, one must meet criteria for “hypomania”. For meeting criteria for an episode of hypomania, there must be a four day period during which the person was irritable or upbeat, talked rapidly, had rapid thoughts, had trouble sleeping, exhibited high self-esteem, was distractible, and engaged in pleasurable but risky behavior. Of course, if one experienced “significant” problems at home or at work during this four day period, then the episode is labeled as mania, and not hypomania. Not surprisingly, studies find that high percentages of the general population have met criteria for hypomania (Udachina & Mansell, 2007).

With the addition of Bipolar II to the manual, Akiskal, an expert on Bipolar, predicted the rise in the diagnosis. He suggested that half of those who are had been diagnosed as meeting criteria for depression would be relabeled as bipolar. His predictions appear to be correct. The diagnosis is now epidemic.

The problem with the term Bipolar II is that it implies that Bipolar II and Bipolar I share a common etiology. In fact, Coryell and colleagues tracked persons meeting criteria for Bipolar II. Those with Bipolar II were no more likely to experience mania than anyone else. Experts on Bipolar (Vieta & Suppes, 2008; Judd et al. 2003) acknowledge that the research on genes suggests that Bipolar II and Bipolar I don’t not share common predisposing genes variants. Finally, Judd and colleagues’ research suggests that tracked over time, the trajectories for Bipolar I and Bipolar II appear to vary. Thus, in terms of underlying causation, Bipolar I and Bipolar II have little in common. So, the common label is misleading.

The other puzzling finding, which seems to have caught the attention of the Mood Disorder Committee for the DSM-V, is that Bipolar previously was assumed to be manifested in bouts or episodes. In considering revisions for the DSM-V, the Mood Disorders Committee is suggesting that more emphasis will be placed on ensuring that the behavior manifested in an episode of hypomania is a marked contrast from the individual’s usual behavior. (I’m happy that the DSM-V is considering restricting the criteria for the diagnosis.) Presently, this caveat on episodic nature of mood events seems not to have been a big factor in rendering the diagnosis. Alloy and Abramson , researchers with government grants to study Bipolar II, find that those college students who meet criteria Bipolar II score high on the Behavioral Activation Scale. The Behavioral Activation System Scale, developed by Charles Carver, measures upbeat behavior. (Indeed, Richard Davidson, who developed the concept of the Behavioral Activation System, documents that persons scoring high on Behavioral Activation display resilience in the face of depressing events.) The Behavior Activation System scale is a trait measure. It asks about usual behavior. Thus, there is reason to believe that those currently being diagnosed as Bipolar II, exhibit hypomania most of the time. If the DSM-V suggestions are enacted, one wonders whether all the Bipolar IIs who exhibit hypomania most of the time, will be told that the diagnosis was wrong. So, quit taking lithium and atypical antipsychotics. The literature offers scant guidelines on how to detox individuals from psychotropic medications.

Of course, the consequences of being wrong in diagnosing a person as Bipolar are steep. The drugs for Bipolar have serious side effects. Lithium has been estimated to destroy kidneys in about 12% over a 20 year period (Presne et al., 2003). Atypical antipsychotics will shrink the cortex taken over a two year period (Ho et al., 2011). Anticonvulsants can cause damage to the liver and pancreas and induce depression (PDR). Then there is the issue of potential withdrawal symptoms when you discontinue the medications. These dangers are not trivial. The practice of diagnosing Bipolar is now epidemic. The label will probably shorten the lives of many people who would otherwise be resilient in the face of adversity.

So it would appear that “Olmstead” has joined “recovery” as the day’s shibboleths or watchwords. And while it’s evident that the provisions of the ADA have not been enforced, the only explanation that readily presents itself is that government compliance agencies don’t have the stomach for it. I had blogged about this back in late June of last year, when Senator Tom Harkin, the foremost champion of the ADA and Chairman of the Senate’s Committee on Health, Education, Labor and Pensions was reduced to cajoling private industry to hire persons with disabilities, whose unemployment rate stood then and stands today at 80%. To paraphrase the late Barry Goldwater, not one of my heroes, “you can’t legislate morality;” and when you try, as with the Voting Rights Act of 1965, the legislation Goldwater was alluding to, you’re left with a bunch of folks who spend the rest of their lives trying to overturn it. As for the ADA, who’s hated and feared more these days – on a lengthening list that now includes African-Americans, gays, immigrants and Muslims – than persons believed to be seriously mentally ill?

Bazelon also spelled out what it believes to be the principal barriers to community integration of the disabled: out-dated notions of effective services and service delivery by state and local governments; stakeholder – read “provider” – resistance to change; and lack of awareness of their civil rights by persons with disabilities and their families. Yet, why should State and local governments and individual and agency providers treat persons presumed to be seriously mentally ill any differently, i.e., as persons with legally mandated civil rights, when they’ve been incarcerating them with impunity for over one hundred and fifty years? And, why, for the very same reason, should these same persons and their families believe they have any civil rights? In Bazelon’s final analysis, the issue boils down to denial of the civil rights of persons with disabilities; but, if the Federal government has failed to protect those rights for the past twenty years, why should it begin to do so now?

The answer is political and is to be found in the powerlessness of the affected individuals. While a legal remedy might be pursued by advocates such as the Bazelon Center, a political solution, a reordering of the power relationships of the stakeholders in the public mental health system, must be sought by the inmates or survivors or peers, the stakeholders that have been disempowered or oppressed. In my last blog on this site, I defined oppression as theft of a person’s self-identity; I contended, further, that the recovery of one’s sense of self is an act of political empowerment and equivalent to an individual’s personal liberation. The liberation of all inmates/survivors/peers will, as per my logic, require the formation of a civil rights movement analagous to the civil rights movement of African-Americans subsequent to World War II, the paradigm followed thereafter by women and gay Americans with much success. As I also wrote in that last blog, the various peer organizations operating across the country appear to lack a unity of purpose at this point in time to form such a movement. They also appear to lack the militancy that a political movement invariably requires.

One of the largest and most effective peer-run organizations, the National Empowerment Center (NEC), seems intent on following a strategy proposed by Judi Chamberlin, demonstrating the competence of peers in helping one another rather than banging heads with the mental health system. Shortly after I mentioned the peer respite center run by Voices of the Heart in upstate New York, NEC advertised a webinar about respite centers that I logged onto yesterday. Several presenters spoke about the respite centers with which they were involved – in Santa Cruz county in California and Lincoln, Nebraska, to name just two – re-traced the steps each had taken to establish the particular center and encouraged interested webinar participants to consider established respite centers in their locales. All part of a concerted effort endorsed by SAMHSA and various state and local governments. Up to this point, thirteen peer-run respites centers have been established in eight states, with several more in the planning stages. The Lincoln program sounded particularly ambitious: up and running for three years; accredited by the Center for the Accreditation of Rehabilitation Programs (CARF); overseeing a supported employment program in addition to its respite house; in line to expand with county funding, as the county seeks to reduce the size of its community mental health center. Additional information about crisis alternatives and resources can be found on NEC’s website, http://www.power2u.org.

There are pitfalls to this approach, particularly co-optation by government and by public funding; but it certainly would be instructive to see how effective these peer-run programs are over the course of several years. New helping models might well evolve out of these efforts. This approach might also serve to buy time for peer-led organizations to mature to the point where the issue of oppression in the public mental health system could be confronted head-on. It’s a dicey issue, one which raises hackles in government and private agency and professional providers, most of which view their efforts to help their clients and patients as beneficial if not benign. To inform them that their interventions, no matter how well intentioned, can still be experienced as oppressive is to invite denial and provoke sharp disagreement. Inmates/ survivors/peers can more readily acknowledge the harm the system has done them and they can discuss this with one another, but to whom else in the system can they talk about it? Not very readily to the government officials and professionals who control it.

Back in May of last year, I wrote a blog wherein I proposed dumping the biomedical model and replacing it with one rooted in trauma. My own seventeen-year long experience as director of a case management program serving all of New York City put me in contact with hundreds of persons who had suffered sexual or physical abuse from childhood on. I regarded sexual and physical assault as acts of oppression, invariably replicated in the public mental health system, and spent a good part of the blog discussing oppression. Given the controversy that the word provokes, I’d like to reproduce what I wrote over six months ago immediately below. It’ll provide you with some idea of why I give it such importance. That discussion concludes with one that concerns “resilience,” which I offer to explain how inmates/survivors/peers manage to survive “a public mental health system that cannot help or protect them and is often a prime party to their oppression.”

To begin.

“I was re-introduced to the notion of oppression when I read, about ten years ago, Franz Fanon and the Psychology of the Oppression, published in 1985 by Dr. Hussein Bulhan, a Sudanese psychologist teaching at Boston University. This was at a time when we were working with parolees who had received diagnoses of serious mental illness, and I was seeking to understand why mental health practitioners and community-based programs were so reluctant to help them. Was it something about the parolees or was it the mental health system itself that presented the greatest barriers?

“I had originally read Fanon’s The Wretched of the Earth thirty years earlier. Fanon was a Martinican psychiatrist who wound up in Algeria treating the torture victims of the French secret service as well as their torturers during the Algerian revolution of the 1950’s. He was witness to men and women so brutalized that they had surrendered their very identities, their social and personal sense of self, to those who had brutalized them; and he came to believe that the brutalized could only regain their sense of self, their lives, by taking the lives of their oppressors. One might remember that the Black Panthers analogized Fanon’s formulations when they spoke of racism in this country as domestic colonialism.

“Accordingly, “oppression” is a very loaded term. Bulhan defines it much more broadly than Fanon, viz., as an interactive social phenomenon involving more and less powerful persons, wherein the former, via acts or threats of physical or psychic violence, projects his/her more loathsome aspects of self onto the less powerful and the latter introjects them as her/his own. In short, the more powerful gains a sense of self at the expense of the latter who loses it, a process also outlined by Goffman in Asylums. These acts of oppression and violence can be structural or societal and institutional, as well as inter- and intra-personal. In Bulhan’s inclusive taxonomy, structural or societal violence can take the form of poverty, racism, patriarchism, homophobia, unemployment, the death penalty; institutional violence can be seen in police violence against persons of color, the incarceration of persons of color and poor persons for serious mental illnesses, the tracking of children of color and poor children into special education classes; and personal violence can consist of violence against others and against self, including suicide, self-mutilation, anorexia and bulimia. The principal consequence for those being oppressed is a sense of general alienation – from self, others, including the oppressor, from their own culture, and from creative and meaningful social practice or social roles.

“In sum, oppression and its violence impede the development of an individual’s self-identity and must be regarded as risk factors that increase an individual’s vulnerability to [psychosis].

“What can offset the adverse impact of oppression is an individual’s resilience and the extent to which the environment in which the individual resides is facilitative or supportive or not. Werner and Smith define resilience as a person’s constitutional or characterological resources that assure that an individual’s personal development will not be blocked even under adverse environmental circumstances. They emphasize that a person’s resilience is not a universal constant but waxes and wanes and is dependent on a series of variables … the person’s life cycle stage; gender; cultural context; the severity of the stressor the person is experiencing; and the accumulation of stressors over time. The key factor in enhancing a person’s resilience and in reversing the downward trajectory of a person’s life, no matter the person’s age, is what they term a “facilitative environment”, viz., one that provides nurturance, support and validation, as well as learning and vocational opportunities. They cite as examples, in a number of studies published largely in the 1980’s, effective nurturing, particularly by the person’s biological or surrogate mother; the father’s esteem and respect for the mother; an accessible support system, including supportive teachers and religious figures; and military or volunteer service that served to remove the person from a toxic or unsupportive environment.

“I concluded then, as I do now, that persons presumed to be seriously mentally ill possess a great deal of resilience. How else could they have survived what all have gone through? Indeed, in the powerpoint presentation I developed ten years ago to persuade mental health practitioners of our clients’ innate potential for recovery, I posed “oppression” and “resilience” as poles of a dialectic that could only be resolved by our “clients” themselves. Specifically, I believed, and still do, that persons presumed to have serious mental illnesses need to organize themselves as a civil rights movement whose objective would be the reclamation of what I termed their community citizenship, viz., meaningful social roles and participation.

“I had been struck in the description of the resiliency studies by the absence of psychotherapists and other “professional” helpers as members of the facilitative environments that promoted the study subjects’ resilience and successful outcomes. It appeared to me that the helpers – as opposed to the “professionals” — in those studies were able to negotiate two difficult dialectical dilemmas: social control versus social change, or to whom were they really accountable? and nature versus nurture, or could the individuals they were trying to help really change? In my estimation, they did so by remaining true to their mission, viz., to help those whom they were helping free themselves of the limitations that their family and community and larger societal environments might have ordinarily imposed on them.

“I believe, in accordance with Bulhan, that mental health practitioners have a third to address, one which Bulhan terms the “pathology of the self” – [presumed] mental illness; loss of personal functioning; assumption of the powerless patient role — versus “pathology of liberty” – loss of ability to self-actualize via meaningful social praxis or functioning; loss of a valid social role. My many years of practice experience have persuaded me that most mental health practitioners have little appreciation of the latter, i.e., pathology of liberty, and have no training appropriate to the task [of effectively addressing it]. In other words, it has never been posed to them as their mission. Rather have we all been trained, particularly over the course of the past thirty years, to tell the persons with serious mental illnesses we presume to help that they are sick, will be sick, probably for the rest of their lives, and will be better off to accept their roles as patients. Now that’s oppression!

“That’s why I prefer the trauma paradigm. How much more effective and rewarding to tell a person undergoing a psychotic episode, when she/he is able to ask, that she/he is the victim of probably lifelong abuse; that she/he can learn skills and strategies that will prevent or mitigate future episodes, should they occur; that, over time, she/he will be free to make life choices regarding roles and relationships, much as we all do. That’s known as self-determination!”

That’s it! Hope you found it helpful. Our collective task is to fight our way through the slogans and the rhetoric and get to the core of what our mission really is and means. As always, don’t mourn, organize!

References:

Bazelon Center for Mental Health Law, “The Bazelon Center’s Vision of Community Integration,” January 23, 2012, http://www.bazelon.org

Bulhan, H.A., Franz Fanon and the Psychology of Oppression, Plenum Press, New York, 1985

Carney, J., “Sexual Abuse of Men & Women Caught Up in the Public Mental Health System: Assessment & Treatment,” powerpoint presentation, January, 2007 & January, 2012, revised

Carney, J., “Oppression & Resilience: A Dialectic with Crucial Implications for Persons Caught Up in the Public Mental Health System, “ powerpoint presentation, September, 2001 & January, 2012, revised

Carney, J., “Helping Consumers Add Years to Their Lives, VI & VIII …”, May 28 & June 27, 2011, www.behavioral.net

Carney, J., “Recovery & Liberation: One and the Same?”, January 17, 2012, www.madinamerica.com

Fanon, F., The Wretched of the Earth, Grove Press, New York 1968

Goffman, E., Asylums: Essays on the Social Situation of Mental Patients and Other Inmates, Knopf Doubleday Publishing Group, New York 1961

National Empowerment Center, “Building the Foundation for a Successful Peer-Run Respite: Creating Connections with the Local Community,” January 25, 2012, second in series of three webinars, http://www.power2u.org

New York Times, “Cuomo Commits to NYS Olmstead Plan,” January 4, 2012, http://www.nytimes.com

I share the criticism of those who argue that psychiatry has had an overly cozy relationship with the pharmaceutical companies.  I also agree that the efficacy of a wide variety of agents has been overstated.  However, there is a component of the current round of criticism  with which I disagree: specifically, the assumption that if there is no evidence of neurotransmitter abnormalities then conditions such as schizophrenia do not involve alterations of brain function. This idea is often linked to a related assumption that, therefore, medications could  not be effective treatments.

Are the symptoms of schizophrenia a reflection of brain function?

I approach this argument from the philosophical perspective of a monist. That is, I take as a given that cognition, emotion, and perception are brain functions.  If someone reading this is a dualist (i.e., believes that there is something other than the material world from which these experience airs) then we have deeper disagreements that I will not address here.

When someone hears a voice, parts of the brain have been activated to create the experience of that voice.  That is true regardless of whether or not that experience was a response to a set of sounds produced by another person’s vocal chords.  Similarly, people who have lost limbs often experience pain and other sensations in them, despite the fact that they have been amputated.  The experience of the limb is as it would be if the extremity were still present.

The experience of hearing a voice that no one around you can hear is reflective of a set of brain processes. It may not be due to “excess dopamine” but it nevertheless is due to the way the brain is working.  Something has happened in that brain to create the experience of that voice despite the fact that there is no  external stimulus that caused it.  It is  a reasonable, interesting, and valid question for research to understand what happens in such a  person’s brain when that voice is heard.

Can medications, in theory, be effective for problems of thought, mood or cognition?

Even if there is no dopamine excess in the brain, that does not mean that medications that alter dopamine function in the brain cannot a priori be effective.  The effective treatment of a condition is not necessarily linked to its cause.  If a condition is thought to be due to a genetic or structural abnormality then it is commonly thought to be “biological” and therefore more amenable to treatment with a “biological” treatment such as a medication.  If something is due to environmental effects such as trauma, then it is thought to be more responsive to “environmental” treatments such as psychotherapy.   But these are false distinctions.  ALL treatments are biological.  Psychotherapy is as “biological” a treatment as medications. If someone, for instance, learns meditation and is able to feel less anxious, that change is mediated by changes in the brain.

If someone participates in Open Dialogue because he is hearing voices and over time the voices go away or the person is less bothered by them, then some change has occurred in his brain to which that change is attributable. If someone takes a medication that blocks dopamine receptors and he no longer hears voices, a change has occurred in his brain. Maybe it is the same change. Maybe it is different. Maybe the changes effected by Open Dialogue are safer or more long-lasting. Maybe the efficacy of our currently available medications have been exaggerated.  The point is that there is nothing inherent to the symptom or its the hypothesized etiology  that in itself allows one to know what sort of treatment will  be most effective. That is always an empiric question and all potentially effective treatments deserve the same critical scrutiny.

“This has been a year of exciting discoveries and scientific progress . . . Here are 10 breakthroughs and events of 2011 that are changing the landscape of mental health research.”

His words fit neatly into a larger narrative in psychiatry, which is that of science on the march. For the past 30 years (or even longer), leaders in the field have regularly told of “great advances,” and of how “extraordinary” new research is leading to “tremendous advances” in care, and Insel’s list is the latest addition to that narrative. And yet—and this is the puzzling part of this modern tale of scientific progress—the burden of mental illness in our society keeps going up and up, and clinical outcomes have, in anything, worsened in the past 30 years (at least for affective disorders.)

So, in the hope of gaining some insight into this mystery, let’s take a closer look at Insel’s list of “exciting discoveries” and “breakthroughs” from the past year. Here are the titles for the top five:

Complexity: Discovering New Sources of Genetic Variance.
Transcriptome: Developing Brains Have Unique Molecular Signatures.
Induced Pluripotent Stem Cells: Disease in a Dish.
De Novo Genetic Variants.
Epigenomics: How Experience Alters Behavior.

If your initial response is like mine, you may be tempted to say: what a bunch of molecular gobbledygook. But then I took a deep breath and sought to identify, in a more clear-headed way, why this list is so disappointing.

The first reason is a practical one. Researchers have spent the last 30 years trying to identify molecular and genetic explanations for psychiatric disorders, but this effort has not led to any therapeutic advance. In fact, it is proving so barren that many drug companies are shutting down their efforts to develop new psychiatric drugs, precisely because such research has failed to identify promising new molecular targets. So why keep on pursuing this tack? Might it be time to put our federal dollars into research more likely to produce a therapeutic benefit?

But the second reason for disappointment is the more important one. Insel’s list tells of a research enterprise devoted to identifying what is genetically wrong with the “mentally ill.” As the history of eugenics reminds us, that is a pursuit, unless it is handled with great care, that can engender bad social policy and a great deal of harm.

In 1869, Sir Francis Galton, cousin to Charles Darwin, gave birth to eugenics when he published a book titled Hereditary Genius. In it, he concluded that it was nature, rather than nurture, that made the superior man. Thus, he argued, humans were decidedly unequal. Democratic ideals that men were of “equal value,” he wrote, were simply “undeniably wrong and cannot last.”

This was a sentiment that rang true to one group in American society: the ruling elite with a White Anglo Saxon Protestant heritage. Many believed that a large influx of non-WASP immigrants was weakening the country. Soon, American eugenicists were busily ranking ethnic groups along a “more fit and less fit” spectrum, and the “insane” were put at the bottom of the list. Eugenicists then argued that in order to keep America strong, it was necessary to encourage those with “good germ plasm” to have lots of children, and to prevent those with “bad germ plasm” from breeding.

In 1896, Connecticut became the first state to prohibit the “insane” from marrying. Other states followed suit, and by 1933, there were no states left where the insane could legally tie the knot. However, the problem with such laws, eugenicists lamented, was that few people seeking a marriage license declared themselves insane. The insane, one eugenicist noted, are “biased” in their own favor.

Thus, since that social policy didn’t do the trick, eugenicists began arguing that the insane needed to be segregated from society in mental hospitals. They needed to be locked up and kept there until their breeding years passed. This belief—that the “insane” needed to be removed from society—led to a rapid buildup in the number of hospitalized mentally ill, which increased from 31,973 in 1880 to 272,527 in 1929.

At that time, a Journal of Hereditary editorial concluded that “segregation of the insane is fairly complete.” But eugenicists had also been advocating for a more permanent solution to the “breeding” problem, and now they got their wish. In 1907, Indiana had become  the first state to authorize forced sterilization of people with “hereditary defects,” and in 1927, the U.S. Supreme Court declared such state laws constitutional. By the end of 1945, more than 45,127 Americans had been sterilized under such laws, 21,311 of whom were patients in state mental hospitals.

As such social policies took hold, a number of scientists at top colleges promoted eugenics as a science. By 1914, 44 colleges in America had introduced eugenics into their curriculums, and such courses were particularly popular at such elite schools as Harvard, Columbia, Cornell and Brown. By 1924, more than 9,000 research papers on eugenics had been published, and the Eugenics Research Association could boast that a third of its 383 members were fellows of the American Association for the Advancement of Science, the national’s most prestigious scientific group.

The physician who took the lead in proving that insanity was an inherited disease was Aaron Rosanoff, a physician at Kings Park State. He charted the family histories of 72 insane patients, but initially he did not find the results he expected. Among the 1,097 relatives of the 72 patients, only 43 had ever been hospitalized for a mental illness, a number far too low to show a causal genetic link. But Rosanoff was determined to prove there was one, and so he decided that he had defined mental illness too narrowly. If he expanded the definition of what could be considered abnormal behavior, and thus could include people who were “high strung, excitable, dictatorial, or abnormally selfish” as mentally ill, he determined that the 72 patients had 351 relatives who were mentally unwell. This was very close to the precise number he needed to conclude that insanity was a single gene recessive disorder, transmitted much like blue eyes. If a child inherited a copy of the normalcy gene from one parent and the insanity gene from another, he or she would grow up to be normal but would be a “carrier” of insanity. A child who got the insanity gene from both parents was doomed to be insane as an adult, he wrote.

This “finding,” and other such findings said to prove that mental illness was a genetic illness, naturally led the public to fear the hospitalized mentally ill. Their genes were a threat to society’s collective gene pool. Meanwhile, in their writings, eugenicists described the mentally ill  as “social wastage” and as “unfit” human beings, and talked about the need to remove this “social cancer” from American society. With such declarations influencing the American mind, 66% of the public said in 1937 that they favored sterilizing the “defectives” in society.

This disparagement of the mentally ill naturally led to a drop in public funding for state mental hospitals, and many fell into total disrepair. In addition, it set the stage for psychiatry, in the 1930s and 1940s, to embrace a quartet of medical therapies that were understood to “work” by damaging the brain. The therapeutic reasoning was easy to understand: If the mentally ill had little value, and were generally “unfit” human beings, then therapies that quieted them and made them easier to manage—even if they seemed to knock the patients down to a lower level of being—could be embraced as helpful. The first three such therapies were insulin coma therapy, metrazole convulsive therapy, and repetitious electroshock therapy. The fourth was frontal lobotomy, which at the time was hailed as a miracle brain surgery.

Today, as a society, we would never conclude that we hold “eugenic” ideas about the “mentally ill.” Eugenics became a discredited science at the end of World War II, when it became evident that Hitler had risen to power on a eugenics agenda, and that this grading of humans—into the fit and unfit—had led to the Holocaust. Yet, it is easy to see today that our modern research agenda has encouraged eugenic conceptions of the mentally ill and encouraged the adoption of policies that rob people so diagnosed of their basic rights.

In 1980, when American psychiatry published its third edition of its Diagnostic and Statistical Manual, it informed the public that mental disorders were now to be thought of as “diseases of the brain,” much like diabetes or some other physical illness. The mentally ill were said to have “broken brains,” characterized by faulty “brain chemistry.” Trauma, environmental stressors, difficult family relationships, and other problems were no longer to be seen as primary causes of psychiatric distress. The root cause was an internal biological flaw with the person. With this conception in mind, NIMH-funded researchers renewed a quest, first born in the eugenics era, to identify a genetic basis for psychiatric disorders.

There is, of course, an understandable therapeutic rationale for such research. If a biological pathology, arising from a genetic defect, can be identified, then it would provide a target for drug development. But—and this is important to recognize—this research has not proceeded in an ideologically neutral manner. In 1980, with the publication of DSM-III, the field became ideologically committed to telling a certain story, which is that mental disorders are brain diseases. As such, the field became committed to proving that this was so, and we can see this ideological impulse in many of the published findings. You find it in particular in the MRI studies, in which researchers may announce that some abnormality or another has been found in a group of patients, without making an effort to distinguish whether the abnormality is medication induced. When that happens, ideology is trumping honest inquiry and science, and it is impossible, as such moments, to not be reminded of Aaron Rosanoff, and his desire to report that insanity was a single gene recessive disorder.

In terms of shaping public opinion about mental illness, what has this modern genetics research wrought?  When we hear of how people diagnosed with schizophrenia or bipolar disorder have “broken brains,” or that these disorders have a genetic basis and run in families, we are being encouraged, as a society, to think of people so diagnosed as not quite “right,” or that they are “unfit.” As such, we shouldn’t be surprised that recent studies have found that as the public comes to understand that mental disorders are “biological” in kind, stigma toward the “mentally ill” increases.

In short, thirty years of NIMH-funded research into the possible genetic causes of mental disorders has proven to be both a therapeutically barren enterprise and one that has encouraged eugenic conceptions of the mentally ill. Those eugenic conceptions are now showing up in our social polices, and this can be clearly seen in our society’s embrace of “outpatient commitment” orders. The public has been encouraged to “fear” the mentally ill, and to conceive of them as driven in their behaviors by their faulty brain chemistry and genes, which they can’t control, and thus society embraces the idea that “they”—i.e. the other in our midst—need to be kept under state control.

A century ago, such societal beliefs led to the segregation of the mentally ill in hospitals. Today, people may get released from hospitals, but if they are under an outpatient commitment order, they certainly are not “free” and enjoying the rights of full citizenship. They may be forced to take medications that they do not want to take, and if they complain that the drugs make them feel like “zombies” and rob them of their capacity to feel the world, such complaints are dismissed. They don’t know what is good for them, we say.

This state control of the “mentally ill” extends beyond those under an outpatient order to many who receive government services. Such people may not be under a legal order, but still feel coerced. They may have to take medications they don’t like in order to continue to receive services, and such coercion surely is an impingement on their self-autonomy.

This, of course, is true regardless of the merits of the medications. If a person living in society is being forced to take a medication he or she does not want to take,  that is impinging on his or her usual rights as a citizen. Their right to liberty has been compromised.

Now, let’s return to Insel’s list for a second look. Only this time, instead of focusing on what is named on the list, let’s look at what is missing. See if you can find even one item that tells of research designed to help living, breathing human beings get well and stay well. See if you can find anything  that tells of research designed to identify the strengths that can be found in people struggling with their minds, and all the ways that, in fact, such struggles can be an ordinary part of human experience.

Once again, history can tell us why it is tragic that such research is missing from the NIMH list.

In the last years of the 18^th century, Quakers in York, England, acting in rebellion against the harsh ministrations of English mad doctors, developed a form of care known as “moral therapy.” The medical wisdom at the time was that the mad, by virtue of having lost their reason, had descended to the level of “brutes, but the Quakers in York thought differently: They declared that the “mad” were “brethren” and should be treated as such.  The Quakers in York built a small retreat in the countryside, where the mad were given shelter and food, and treated with gentleness and kindness. In this manner, the Quakers hoped to “assist nature” in helping the mad get well. They believed that their mad brethren had a God-given inner capacity for regaining self-control and reason, and thus their therapeutic challenge was to provide a gentle environment that could best promote such healing.

In fairly short order, the Quakers in York reported that this care was proving to be quite successful, and in the first decades of the 19^th century, Quakers in the United States built a number of such small retreats, in the countryside outside Boston, Philadelphia, Hartford and other cities. The patients were encouraged to garden, exercise, take long walks, and engage in social activities. And this therapy worked. Modern historians who have reviewed the records of these retreats have determined that more than half of the newly insane would be discharged within three years.  Moreover, a long-term study of 984 patients discharged from Worcester Asylum in this period found that 58% remained well throughout their lives.

Today, we often hear of how our society is discovering that some people can “recover” from mental illness, as if this is an extraordinary finding. If the Quakers from the early 19^th century could hear such pronouncements, they would undoubtedly furrow their brows and wonder, this is considered new?

Imagine if the NIMH revisited this history and funded studies mindful of the lessons to be gleaned from it. NIMH-funded investigators, rather than seeing people with a psychiatric diagnosis as having an innate defect, would see them instead as “brethren,” and thus as human beings having an inner resilience and an inner capacity for getting better.  The investigators could then focus their efforts on developing therapeutic approaches that help nurture such inner strengths. The Quakers found that diet, exercise, meaningful work and social engagement were a recipe that could help many disturbed people get better, and I imagine that if the NIMH invested in this idea today, researchers would discover anew their benefits.

Yet—and I know this well—that is a wish-list thought. The NIMH has published a list of its “Top Ten Research Advances of 2011,” and pronounced them to be “exciting discoveries” and “breakthroughs,” and so undoubtedly we will see much more of this type of research, which unfortunately encourages us, as a society, to think of people who may struggle with their minds not as “brethren,” but as fundamentally “unfit.”  Even well-meaning research can have unintended consequences, and I think, if we look at our ongoing genetics research within a historical light, we can see why that is so.

The combination of the chemical injuries and the addiction effects, in so many cases, are powerful enough to make a marathon runner collapse at  the 21st mile— sometimes referred to as ‘the wall.’  To throw in the towel before the finish line.

But David should not be deterred by the Goliath in his presence. One soul, in rehab work, can be saved at a time. If you let clients be the guide and respond with a strong, secure, flexible, kind and open voice waters do part.

Reason tells us that psychiatry, general practitioners and big pharma have joined together to prescribe drugs to the population for profit. Marketing has us mesmerized. Before the drugs came in, grief work was understood as the foundation of healing. Today grief and its stages have become a cliche. That is the result of any addiction. Pain is masked.

In prescription drug withdrawal, when it is difficult and protracted, the flood gates are opened in spades. One could view this as a kind of bad juju for the harm created by the grand experiment of prescription drug use. It is the beast clients so often refer to. To be a witness to the level of pain that hard withdrawals bring is humbling and will open the heart deep and wide of any empathic clinician/person.

The task of the clinician navigating the uncharted seas of detox is to hold all of the frozen grief as the damn breaks. Steady as she goes. Plug up the damn. Take out a finger. Repeat the cycle.

At a mile marker for the revolutionary shift away from the model of bio-psychiatry it is easy to see that a monumental task lay before us. So much flood water to hold. An ocean of emotion to thaw. One in five Americans have been identified as having a mental illness. (SAMHSA) One American dies every nineteen minutes from prescription drug use. (CDC)  Collectively we can unring these bells.

This is an extraordinarily well researched clinical discussion of professional medication practice that draws a lot from the Harm Reduction Guide To Coming Off Psychiatric Drugs that I wrote with The Icarus Project and Freedom Center. A very useful resource for giving to professionals and clinicians facing these issues.

You can download the article here:

http://bit.ly/wbUA6A

And here are the summary and abstract:

Summary

Many people decide not to take prescribed antipsychotics once they are discharged from the hospital.

Stopping antipsychotics suddenly without support may result in harmful reactions and possible re-admission to the hospital.

The ‘Non-Adherence Harm Reduction’ approach aims to reduce the harm of stopping antipsychotics, by informing and supporting those who make this personal decision.

This approach values personal autonomy and may reduce the likelihood of harm and re-admission in those who choose not to adhere to prescribed antipsychotics.

Abstract

This paper discusses the evidence base for interventions addressing non-adherence to prescribed antipsychotics. A case study approach is used, and the extent to which adherence improvement interventions might be used in collaboration with a specific patient is considered. The principles and application of harm-reduction philosophy in mental health are presented in a planned non-adherence harm-reduction intervention. This intervention aims to acknowledge the patient’s ability to choose and learn from experience and to reduce the potential harm of antipsychotic withdrawal. The intervention evaluation method is outlined.

Several of you have asked about what FEMHC is up to.

While the Foundation for Excellence in Mental Health Care (FEMHC) builds its infrastructure and funding capacity we are fortunate to have projects underway right now thanks to the generosity of several donors.  As a community foundation we have funds opened under our 501c3 umbrella by individuals to support various projects they designate that align with the Foundation’s mission.  FEMHC also has projects under our general fund that the Board sets the priorities for when dollars come in to our Foundation to support our general mission – to improve mental health outcomes. 

I thought I would share some of them with you:

Bill Anthony Fund for Research and Symposia

We held two symposia in 2011 – the first one in February in Portland, Oregon entitled Medication Optimization in the Service of Recovery focused on bringing people together to work on four discussion papers posted on our website, www.femhc.org; Public Policy and Administration, Medication Optimization, Guideline for the Treatment of Schizophrenia and Effective Strategies for Positive Long-Term Outcomes in Depression.

The second symposia was held in Chapel Hill, North Carolina in September and was focused on early psychosis presentations ( on our website) and moving research to practice which quickly expanded to discussions about the research that was needed, family support components, and the need for continued networking.

Our next symposia in 2012 will be joint ventures with other professional organizations and like-minded professionals in September (Syracuse) and November (Philadelphia).  Stay tuned for details.

We had several wonderful proposals for early psychosis projects; all of which we are holding in our portfolio as we look for appropriate funding.  We are in the process of funding the research component on an early psychosis project in Framingham, Massachusetts called Collaborative Pathway.

We are in discussion with several researchers regarding papers to be written on appropriate medication tapering, guidelines for children’s treatment, and other issue papers people generally feel are missing from the research literature.

Another grant was awarded to MindFreedom to conduct an “I Got Better” campaign showcasing people’s stories of what steps they took to recover from mental illness and what tools they use now to keep in recovery.

The Dorothea Dix Society Fund for decriminalizing mental illness

Established by Dr. Dean Brooks, long time, progressive Oregon State Hospital Superintendent,  this fund is dedicated to decriminalizing mental illness and is in process of creating guidelines and writing new case law to get people appropriate treatment in appropriate settings. 

The Anatomy of an Epidemic Fund

Established by a philanthropist to distribute Robert Whitaker’s book, Anatomy of an Epidemic, to prescribers and encourage meaningful, dynamic discussion of the research he showcases and develop principles of where we go from here.

The Mother Bears Community Action Network (MBCAN)

A fund established by Don and Lisbeth Cooper to support family members of loved ones with mental health challenges.  Read more about MBCAN on Lisbeth Riis Cooper’s blog at this site.

Since we are a Community Foundation we are in the process right now of establishing many more funds focused on a wide variety of issues to improve mental health outcomes.  I will highlight them from time to time on this blog.

In the meantime I encourage everyone reading blogs on this site to share the good news.  There is an army of people and organizations networking to create ways to end the stigma of mental illness and to help people recover.

Several years ago in PLoS Medicine we wrote a long piece about the serotonin theory and the disconnect between what research psychiatrists say in professional journals and textbooks and what the advertisements say. While the advertisements presented the theory as scientific fact, the scientific sources clearly did not. Given the enormous marketing programs that pushed this theory combined with the media’s lack of skepticism, we were sympathetic to the general public who could hardly be faulted for thinking that theory had some foundation in fact. Following the publication of our piece a reporter contacted us and suggested that we were attacking a well accepted theory. We pointed out to the reporter that we weren’t attacking a sacred cow but that instead we were pointing out the mainstream psychiatry didn’t even accept this theory. We urged the reporter to contact the FDA, NIMH, APA, etc and ask them about the science behind the advertisements. He did, and as expected, an expert from the FDA explained that the theory was really just a metaphor. The problem is that patients who heard their physician explain the serotonin theory thought they were hearing real science. They weren’t told it was a metaphor and hence thought it was a fact. When a doctor talks about high cholesterol, diabetes, or hypothyroidism, they are talking about scientific measurement, not a metaphor. How is a patient with high cholesterol and depression who listens to their doctor’s explanation of their conditions supposed to know when the doctor has moved from science to metaphor?

Several months ago Ronald Pies published an interesting article in Psychiatric Times entitled, “Psychiatry’s New Brain-Mind and the Legend of the Chemical Imbalance.” Pies, just like the experts on NPR, acknowledges that the Chemical Imbalance theory is not true. However, according to Pies, it was the pharmaceutical companies who espoused the theory, and not well-informed, practicing clinicians, because the psychiatry community has known all along that the theory is not true.

But if the Psychiatry Community knew all along that the theory was not true, then why did they not clarify this issue for the general public? Shouldn’t they have pointed out to the general public and patients that what the pharmaceutical companies were saying about psychological stress was not true? Why did the professional societies not publicly set the record straight?

There are many angry comments on the NPR website. These comments are interesting, because apparently many patients who were told that depression is caused by a chemical imbalance never understood that were hearing a metaphor and not science. Since the chemical imbalance theory is often presented as a rationale for taking SSRIs, such patients now understandably feel lied to by their clinicians.

Perhaps the most interesting part about the NPR piece is that the reporter seems to not understand that the idea of telling a falsehood to patients because you think it is good for them is a serious violation of informed consent. Shouldn’t the reporter have asked the obvious questions, such as:

1) Do you feel it is acceptable to present a scientific theory as fact even though you know it is false?
2) Is it okay for psychiatrists to tell patients stories about their conditions that psychiatrists know are false?
3) Is there not an ethical issue when a psychiatrist informs their patient that they have a serotonin imbalance, when the medical textbooks on the shelf clearly say this is a falsified theory?

In general, we are fans of NPR, but hopefully the next news outlet that covers this topic will be more investigative in their approach.

Update: Is it true that neuroscientists discarded the serotonin theory long ago? See Part 2 of this blog post for more information…

In psychiatry, the pattern is always the same. An initial treatment is found either to be ineffective or associated with serious side effects. Then a new drug is introduced which is supposed to be more effective or avoid the problems of the earlier treatment. Presently, the new class of drug for anxiety, sleep disorders, Major Depression, and Bipolar Disorder appears to be atypical antipsychotics (documented by Comer, Mojtabai, and Olfson, 2011, Crystal, Olfson, Huang, Pincus, Gerhard, 2009, and Fullerton et al.,2011). Atypicals are even being given to children for a wide range of problems. DosReis et al. (2011) examined the use of atypical antipsychotics in foster children. Among the children receiving antipsychotic medications, 53% had a diagnosis of ADHD, 34% had a diagnosis of depression, 21% had a diagnosis of bipolar, while only 5% had a diagnosis of schizophrenia. Apparently, psychiatrists are using atypical antipsychotics as general panaceas.

In moving from the older drug to a newer drug, psychiatrists are well intentioned. Everyone knows that antidepressants don’t work very well and some (see Irving Kirsch) argue that they don’t work period. Antidepressants can induce mania, so they are contraindicated for anyone with Bipolar Disorder. Lithium, a medication for Bipolar, destroys kidneys. Anti-epileptics are also used for Bipolar, but they have a warning from the government for inducing suicidal ideation. Thus, one can see why psychiatrists were searching for a better option for treating major depression or Bipolar Disorder. With regard to anxiety and insomnia, drugs of the valium class, prescribed for sleep and anxiety, are fairly rapidly addicting. If people discontinue use of valium-type-drugs abruptly, they risk life threatening seizures. Thus, the older drugs for Major Depression, Bipolar Disorder, Anxiety Disorder, and insomnia are bad news. The motivation for something better is understandable. But, the new panacea, the atypicals, is effectively jumping from one bad remedy to an even worse one.

In February 2011, Ho, Andreasen, Ziebell, Pierson, and Magnotta documented the brain volume reduction among their patients taking drugs that block dopamine, which includes the older antipsychotics and the newer atypicals. To prove causation, subjects have to be randomly assigned to a particular treatment or a control group. Fulfilling that requirement can be difficult with human subjects. So for proof of the causal connection, Ho et al., cited animal studies which observed the necessary random assignment. Researchers randomly assigned monkeys, none of whom were suffering from psychosis, to receive or not receive anti-dopamine drugs for two years. The animal researchers found that the antipsychotics do result in brain volume shrinkage. These results are consistent with what is known about brain health generally. Dopamine is a trigger for the release of growth factors in brain. If you block the dopamine message with a drug that sits on the receptor, there will be less release of growth factors, and poorer brain health.

Of course, brain volume reduction is only the latest, most awesome problem with the atypical antipsychotic drugs. From the outset, it has been known that the atypicals are associated with significant weight gain, diabetes, and high levels of fat in the blood. Moreover, atypicals are associated with QT wave prolongation (capable of inducing a heart attack). So if you take seroquel for sleep, you might be sleeping for longer than intended.

When drugs are approved by the FDA, they are evaluated for damage to major organ systems. Unfortunately, the drugs given to change mood and behavior are not evaluated for damage to structures in the brain. Perhaps tests of changes in cognitive capacity should be added to the check-list for evaluating pharmaceuticals. If a drug, taken over years, is shown to impair ability to learn in an animal, then the psychiatrists won’t be able to blame cognitive deterioration, widely acknowledged in the journals regarding patients with schizophrenia and bipolar, on the underlying condition of the patient. If impairments in ability to reason and process information are clearly acknowledged as side effects, then patients can evaluate whether the small possibility to escaping distress by taking the drug is worth the risk of long term brain damage.

In graduate school, I took a lot of Social Psychology courses. From this area of study, I learned to appreciate that people can only accomplish what they believe themselves to be capable of. How one defines oneself matters. The process of labeling with DSM disorders can have very negative consequences. The “self-perception principle” matters for how people respond to trauma and stress as well.

After attaining my Ph.D. in Clinical Psychology, I worked as a psychologist in the Alcohol and Drug Dependency Department at CIGNA Health Plan. In the 1980 and early 1990s, very few alcoholics were diagnosed with a mental illness other than substance abuse. People quit drinking, went to AA meetings, and watched their lives becoming dramatically better. They achieved all of this without the assistance of drugs. Now, of course, few people attending treatment programs are left untouched by psych-meds.

During the time at CIGNA, I completed a two volume work on alcoholism. This endeavor further acquainted me with the neuroscience literature and the burgeoning literature on how stress influences the immune system and mood. Having been intrigued by the connections between mind and body, I pursued a Masters in Biology (Molecular Genetics and Biochemistry) while on faculty at Georgia State. Much of my class work and laboratory experience was focused on Immunology. I have published various papers on the links between behavior, disease, and immune system function as well as on the efficacy of antidepressants.

Because of my background in neuroscience and psychoneuroimmunology, I accept the premise that all human behavior, both normal and atypical, emanates from brain function, which, in turn, is influenced by immune system function, and hormones. However, because of my training, I appreciate that drugs are dangerous. Pharmaceuticals, at least all the ones that are currently available, result in a host of unintended consequences. Current psychotropic medications are unfocused attempts to mask symptoms. An alarming number of noxious and debilitating side effects accompany all of the current pharmacological interventions. Interventions to bolster natural resilience through talk therapy, proper diet, exercise, and support from your friends will probably offer the best strategies. In fact, the mechanisms through which these more benign interventions impact physiology have been illuminated. In examining impact on mood, particular foods and exercise prove just as effective as pharmaceuticals.

I intend to blog on updates on medications, diagnoses, ways to support resilience, and various trends in the mental health field. I can be reached at Littrell@gsu.edu.

]]> http://www.madinamerica.com/2012/01/get-off-prescription-drugs-arriving-at-the-work/feed/ 2 http://www.madinamerica.com/2012/01/the-importance-of-being-useful/?utm_source=rss&utm_medium=rss&utm_campaign=the-importance-of-being-useful http://www.madinamerica.com/2012/01/the-importance-of-being-useful/#comments Fri, 20 Jan 2012 18:50:00 +0000 Carolyn Crowder, Ph.D. http://www.madinamerica.com/?p=3777 Full Article →]]> All people need to feel useful in this life.  The sense of belonging with others and being important to them is the primary need that we have as human beings.  Beginning with the preschool years, children need to be channeled and encouraged to participate with the family in the maintenance of the household and in thinking of the needs of others. Parents are effective with children when they adopt an attitude that conveys that they believe their children are capable of contributing and, in fact, want to.

Anyone who has raised a toddler knows that they are all about learning and participating.  Whether it is vacuuming, dusting, watering plants, or turning on the washing machine, they are eager.  The mistake people make with little kids is that they thwart this natural prediliction and take over the child’s efforts.  Adults are, of course, more able to complete a task correctly and quickly….but this is not the issue.  The issue is that parents and others must stand back, give small amounts of guidance and let the child do it.  Building on their natural desire and having the patience to stand back and let them” try to do”  is a gift to children. 

Trouble is we are all so busy and would rather not bother with letting the child do the dishes or whatever.  Our standards are high and we are tired.  But when a child is not allowed to find a place through contribution, he or she will find it somewhere – and it will most likely be through attention getting, power, and revenge.  It is my opinion that these negative or “antisocial” ways of belonging can blossom into all kinds of problems as the child grows.  Rather than realizing that something can be done about the child’s behaviors, current mental health practice labels and medicates the child.  Training parents to more effectively react to negative behaviors and encourage beneficial ways of belonging is the purpose of this blog and I hope it will be helpful.

I teach the Adlerian model of discipline.  I will try to include an easy- to- remember maxim each time. :  Maxim #1.  Never do for a child what she can do for herself.

I met a new patient today, an African American gentleman in his late 40′s, a successful entrepreneur and innovator (invented and marketed his own garage organizer), who is having devastating health problems related to his heart and weight, problems attributable, at least in part, to side effects of psychotropic medications.  He was tearful today, questioning if he was going to die soon.  His father died of a heart attack when he was his age.

In taking his history, I found out that this patient’s health problems began about twenty four months ago.  He had lived a fairly unhealthy life up to this point, lots of drinking and travel and poor eating, but he had always been active, played in a basketball league, and had never had a major medical crisis.

Eighteen months ago, he began having trouble sleeping.  This was a lifelong problem, really, but it worsened, became debilitating during a time when his business was fending off a major law suit.  He went to see his trusted family doctor, who started him on Ambien, which only helped a little.  Then, for reasons that are unclear, his doctor started him on lithium, perhaps thinking he was hypomanic or bipolar.  The patient does not have insight into why he was started on lithium, but he trusted his doctor.  When the insomnia persisted, he was started on Seroquel, and finally he was able to sleep.  Satisfied that these “brain pills” had calmed him down and fixed his insomnia, he continued this cocktail for a year, and in that year he gained over 120 pounds.  His doctor, seeing him monthly during this time for refills, never raised this issue of weight gain or of stopping the medicine.  Instead, the doctor seemed pleased that the insomnia problem had been solved, and encouraged him to diet and exercise more.

Then the story becomes tragic.  The patient had chest pain one night and wound up in the ER, where it was discovered that at some time previously he had a minor heart attack, and was now going into heart failure.  Over the next few weeks, he developed massive lymphedema, leading to severe, disfiguring swelling of his lower body, including legs and genitalia.  This problem is often called elephantiasis, because it leaves the person’s legs looking absurdly swollen, the skin ridged and discolored.  He developed palm-sized, weeping ulcers on both ankles, wounds that have not closed now in over four months.  He cannot drive or even walk to the mailbox.  He works mostly from home, and pays one of his employees to come change his bandages, because he can’t bend over to change them himself.  His pain and discomfort are chronic and severe.  He is living in misery, becoming hopeless.

About six months ago, his cardiologist stopped the Seroquel and the Ambien, and unfortunately he is now unable to sleep again.  He continues taking the lithium, because this seems to help his pain.  He’s now on six other medications for his various health complications.  He came to see me because he feels like he needs a fresh start with a new primary care doctor.  I found his current health status alarming, though I’m hopeful that we can dramatically reduce his symptoms and suffering with some changes in medication and some new attention to his swelling and wounds.  But no matter what we do, his health status is poor and likely to deteriorate.  I’m also concerned he is developing diabetes, and I’m checking some more labs.

This is a multifactorial problem.  But there can be no doubt that his decline was accelerated, perhaps even provoked, by being placed on potent psychotropics that caused massive weight gain and cardiac problems.  The whole story is a smoking gun.  An otherwise unexplained 120 pound weight gain in the year after starting lithium and Seroquel?  The weight gain led to strain on his heart, which was already at risk due to cardiac effects of these medications.  A heart attack led to heart failure, which led to the swelling and pain and disability.  Tragic.  These medications appeared initially to fix a distressing problem–insomnia–but left so much carnage it their wake.

In retrospect, the patient wishes the medications had never been started.  I can only agree.  How would his life be different?  Reflecting now, he thinks the insomnia wasn’t nearly as bad as he thought at the time.  He would so much rather have sleeping problems and retain his health and longevity.  I’m dismayed that, once the weight gain started, the need for the medications was never again questioned.

The medication on-ramp:  so easy, so enticing for doctor’s and patients alike.  The exit?   So often invisible.

We’ll hope the best for this poor gentleman, whose life is so much worse after the medications than before.

Mark

As 2011 was winding down, SAMHSA issued what it termed its “… working definition of ‘recovery’ from mental disorders and substance abuse disorders …” Specifically, recovery is to be understood as “a process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.”

Nice, innocuous and inoffensive, something nobody could object to; which I suppose was the idea, in the interest of forging a speedy consensus among stakeholders. To judge from the SAMHSA blog, very few people did, with the possible exception of Ron Unger, a social worker and blogger, who was critical of SAMHSA for defining recovery as an indefinite process with no apparent endpoint: “In doing this, [SAMSHA is] lining up with a defective mental health system that has long been criticized for lacking exits…”

To operationalize its definition, SAMHSA also listed ten “guiding principles of recovery,” ranging from the importance of “hope” to the need for “respect” for those striving to recover. Still another of the ten principles was “addressing trauma”; and, once again, Unger observed that SAMHSA “fails to address the possibility that trauma may have played a causal role in creating the “disorder” that the person experienced … Apparently SAMHSA is still bowing to those who want to see mental disorders as strictly biological …”

I wholeheartedly agree with Mr. Unger and told him so in a recent e-mail; frankly, I have trouble with the notion of recovery and how its meaning has evolved over the years.

I was first introduced to the idea of recovery in 1989 when I was hired to write the curricula for New York State’s new Intensive Case Management Program. It was then that I met folks like Anita Pernell-Arnold, who was steeped in what was termed “psychosocial rehabilitation” after stints with Jerry Dincin at Thresholds in Chicago and Horizon House in Philadelphia, and Richard Surles, who had been commissioner of mental health in Vermont and then Philadelphia before being tapped by Cuomo the elder to occupy the same position in New York. Recovery, the endpoint of psychosocial rehab, was considered to be a repudiation of the DSM II & III conceptualization of schizophrenia as a psychic death sentence, a disease which offered no hope of improvement for those diagnosed with it. Psychosocial rehabilitation, which was to promote clients’ recovery, paid little attention to the biomedical model and never regarded psychoactive meds as the sine qua non of effective treatment. Rather, psych rehab rested on the “collaborative relationship” between case manager or coordinator and client, a relationship between presumed co-equals, and it saw their joint efforts in pursuit of the client’s rehabilitative goals as “client-driven.” As Judi Chamberlin and her successors would contend, and as time would prove, more rhetoric than reality, but I believed it when I wrote it.

By the mid-90’s, Pernell-Arnold and Surles were gone; within a couple more years, I was pushed out by the State as Director of Curriculum Development of the ICM training program. Before the decade was out, in 1999, the State legislature passed Kendra’s Law and established New York’s Assisted Outpatient Treatment program, and recovery as we meant it to be – integration into the larger community – had indeed become mere words. After Kendra Webdale was pushed in front of an oncoming subway train by a deranged mental patient, all mental patients were feautured on the front page of the Daily News as violent and dangerous. Social control trumped freedom. Little more than two years later, in October, 2001, our “fear of the other” became Federal law with the passage of the Patriot Act. Social control had trumped freedom nationwide.

Not surprisingly, and this is something Unger underscores, SAMHSA’s definition never specifies when one has “recovered.” Actually, we never did either, although I referred to recovery’s end point as a client’s “reclamation of community citizenship”, by which I meant her/his reclamation of civil rights and the aforementioned community integration. But I never equated recovery with liberation from the mental health system or freedom from dependency on it, as Chamberlin, et al, did and do. SAMHSA also conflates recovery from mental illness with that from addiction, leading me to conclude that SAMHSA sees recovery as an unending process not only for those individuals diagnosed with serious mental illnesses who need or choose to remain involved with the mental health system but for all persons with such diagnoses. Once you’re in, you’re in for good. Which flies in the face of reality, since most folks who want to get out of the mental health system eventually find ways to do that.

In any event, recovery from mental illness is not recovery from addiction. There are, of course, points of congruence. By SAMSHA’s own count – its 2005 nationwide co-morbidity survey – over fifty percent of persons reporting “serious psychological distress” use or abuse illicit substances; further, approximately half of that number are addicted to or dependent on intoxicants of all kinds. Lots of crossover between two presumably discrete groups. In addition, the individuals who comprise both groups are among the most feared and despised in this society. The social consequences, the stigma and marginalization for both groups, are enormous and destructive.

Nonetheless, once an addicted person’s neurotransmitters get attuned to an addictive substance, the craving for that substance never ceases; nor does that person’s recovery. Unceasing for the foreseeable future. On the other hand, persons who have psychotic experiences do not crave repeat episodes. Again, the consequences, for them as individuals and for the persons who care for and about them, are too severe. If anything, they usually do their damndest to avoid repetitions and to mitigate the consequences. That they often fail is testament not to the power of their presumed illness or to their failure to comply with their treatment regimens but rather to a mental health system that misconstrues their suffering and blocks them from discovering their sense of self and acquiring confidence in their ability to weather severe emotional storms.

Bluntly, it’s disingenuous to assert that those you purport to help can learn how to live a “self-directed life” in a system whose principal objective is to suppress their self-identity and replace it with that of “patient” or, more dishonestly, “consumer”, i.e., one who does not produce or initiate but quietly accepts what the system offers and acquiesces to a subordinate position in the system. We’ve learned from reading the personal accounts of Soteria residents and of Judi Chamberlain in On Our Own that recovery or reclamation of who you are occurs only after you’ve had the freedom to experience the terrors of psychosis and come out the other side alive and intact, with the conviction that you can lead your own life. In short, recovery appears to be co-terminus with that first breath of liberation, with the realization that you can live the remainder of your life free of the mental health system, free of dangerous medications, of the fear of losing your freedom whenever you have a weird or potentially subversive thought or feeling. So when we talk about recovery, we’re talking about recovering the identity that was taken from psychiatric survivors or that they never had the opportunity to develop, and not about recuperation from putative mental illnesses that, as Bentall and others have pointed out, have no factual basis. Ultimately, then, we’re talking about recovery as a political act, of liberation from oppression, that necessarily involves a rejection of a public mental health system that has been the instrument of oppression for those caught up in it.

Folks have done this. Here in the U.S., Courtenay Harding’s Vermont Longitudinal Study documents over the course of over 30 years the successful efforts of nearly 200 Vermont state hospital back wards inmates discharged into the community in the 1950’s to live their lives with no or minimal involvement with the mental health system. But the real question is where does one go for help now? Unfortunately, Chamberlin’s and the Soteria residents’ therapeutic experiences are as rare today as they were then. Chamberlin’s and her successors’ dream was and continues to be treatment alternatives developed and directed by survivors, some of which have been and continue to be implemented. Soteria replications are underway in Alaska and California; and a small number of peer-run respite programs, such as Voices of the Heart’s respite house in upstate New York, are being established. But the problem then and now continues to be money … how to raise enough to get these programs up and running, and enough of them to constitute a systemic alternative. The answer is not to be found in inserting peer specialists into programs in the existing public mental health system, since, at least here in New York state, they’re regarded as system “trustees”, as I’ve written in a previous blog, misused, underpaid and exploited. Accepting funding from government is also problematic, because government-funded programs and their outcomes then become subject to government scrutiny, revision and termination. Chamberlin and others hoped that the survivor community would collectively rise to the task; but that level of unity of purpose seems beyond its capacity, at least at present.

With any luck, that last comment might provoke some responses and get some ideas on the table. Topic for a future blog. And remember … Don’t mourn, organize!

References:

Bentall, R., Madness Explained: Psychosis and Human Nature, Penguin Books, London, 2004

Bentall, R., “Abandoning the concept of Schizophrenia: the cognitive psychology of hallucinations and delusions,” in Read, J., Mosher, L.R., Bentall, R., eds., Models of Madness: Psychological, Social and Biological Approaches to Schizophrenia, Routledge, London & New York, 2004

Carney, Jack, “Helping Consumers Add Years to Their Lives, VIII: Jobs vs. Mental Health Careerism in an Ongoing Recession,” Behavioral Healthcare, June, 2011, @ www.behavioral.net

Carney, Jack, “Resistance in an Oppressive Mental Health System: One Step at a Time,” Behavioral Healthcare, December, 2011, @ www.behavioral.net

Chamberlin, Judi, On Our Own, Mind publications, England, 1988 (U.S. publication 1977)

Harding, C., et al, “The Vermont Longitudinal Study of Persons with Severe Mental Illness, I & II …”, American Journal of Psychiatry, Vol. 144, June, 1987, pp. 718-735

Mosher, L., et al, Soteria: Through Madness to Deliverance, Xlibris publications, 2004

Substance Abuse and Mental Health Services Administration, Results from the 2004 National Survey on Drug Use and Health: Summary of National Findings, Rockville, MD, 2005.

Substance Abuse and Mental Health Services Administration, “SAMHSA’s Definition and Guiding Principles of Recovery,” December, 2011, @ www.samhsa.gov/recovery/ & http://blog.samhsa.gov/2011/12/22

Treatment Advocacy Center, “Assisted Outpatient Treatment: Myth vs. Reality,” @ http://www.treatmentadvocacycenter.org/resources/

Unger, Ron, “Questions and Answers about Recovery, “ @ http://recoveryfromschizophrenia.org & http://blog.samhsa.gov/2011/12/22

Voices of the Heart, @ www.voicesoftheheart.net

On November 30, 2011, the biological basis of ADHD was discovered, at least according to the declarations from many news outlets and blog writers. The headlines boldly announced, “Brain imaging shows Abnormal Areas in ADHD kids”, or “Pediatric ADHD: Neuroimaging Can Target, Diagnose Inattention“ or “Functional Brain Pathways Disrupted in Children with ADHD” or this slightly ominous one, “Brain Injury detected in children with ADHD.” The headlines certainly gave the impression that doctors can now take a picture and “see” ADHD, just like oncologists can see tumors. The media buzz was due to a press release put out by the Radiological Society of North America, about an ADHD neuroimaging study from researchers at the Albert Einstein College of Medicine.1 The lead author of the paper was Xiaobo Li.

The press release and subsequent news accounts reported that the authors used functional magnetic resonance imaging and, “identified abnormalities in the brains of children with ADHD that may serve as a biomarker for the disorder.” According to the researchers, the children with ADHD showed abnormal functional activity in regions of the brain involved in the processing of visual attention information. They also reported that communications within the visual attention-processing pathways were disrupted in ADHD children.

However this study was not published in a peer-review journal, but was just a short abstract presented at a meeting. This was very much a “preliminary study” and even taking the data at face value one wonders if the brevity of the study really justified all the media attention and bold headlines. Moreover, what if the reporters had put on their skeptical glasses, not taken it at face value, and instead taken a closer look at the data?

The abstract reported that the researchers compared 18 ADHD children to 18 healthy children. However, as anyone familiar with the psychiatric neuroimaging literature knows, a major confounding variable in many of these studies is that the patients often have been taking at least one medication for an extended period of time. This is not just the case for ADHD investigations but is a problem with investigations into other psychiatric disorders as well. For instance, review articles have suggested that the decreased brain volume observed in the brains of schizophrenics, which was typically attributed to the disease, could be due to the medications2 and a recent study in The Archives of General Psychiatry reported that the most commonly used medications to treat patients diagnosed with schizophrenia appear to lead to brain atrophy. 3

So, when researchers find a difference between medicated ADHD and normal children, it is hard to know if this difference is really an organic pathology or is simply a medication effect. In this current ADHD study there is no mention of the medication history of the ADHD children, nor did the authors mention it in their comments to the press. I emailed the authors and asked them about the medication status of the ADHD children and they kindly reported that 8 of the 18 ADHD children had a prior history of medication use. They also mentioned that these children went off their medication for 48 hours prior to the scan.

But this study is not alone. In the same month it was published, a similar study was presented by a research group from Wayne State University at the Annual Society of Neuroscience Meeting.4 The lead author was Tudor Puiu. The authors reported that in children with a diagnosis of ADHD the dorsal anterior cingulate cortex had to work harder than controls during a memory task. In their abstract and commentaries, the authors did not report the medication history of the 19 ADHD children. Several media outlets picked up on the story and ran with fairly strong statements such as : “The new findings add to growing biomedical evidence that those diagnosed with ADHD have unusual patterns of brain function…” I emailed the authors of the study and asked them about the medication history and they reported that all of the ADHD children had a history of medication use, but that they went off their medication for 24 hours.

The medication history of the ADHD children is an essential piece of information for anyone wanting to draw conclusions about the significance of these studies. One wonders how such an obvious confounding variable could get left off the abstracts, or not be of interest to those attending the presentations. Did anyone in attendance ask about the most essential, albeit unwritten, piece of information? And the medication effect is not the only confounding problem. When children who have been taking medication for a significant time period simply stop taking their medication for 24 or 48 hours prior to their scan this does not mean that researchers can discount the long-term medication effect, it just means that the study has introduced another confounding variable – the withdrawal effect. Were the changes in the ADHD children due to an organic pathology, the medication effect, the withdrawal effect, or some combination of all three?

Imagine scientists who conducted a study comparing the brains of methamphetamine addicts to controls. And, in fact, it was this type of experiment that gave rise to one of the most famous advertising campaigns of all time: “This is your brain. This is your brain on drugs.” The analogy of the egg sizzling away in the frying pan to a brain on drugs was easy to comprehend. If the scientists conducting this type of study ignored the drug history of the addicts and instead attributed the deficits to an organic pathology then certainly readers would point out the holes in their reasoning. However this is exactly the logic that ADHD imaging researchers use when they look at the brains of children on stimulant medications.

To disentangle these variables, there are two interesting comparisons in these studies that the authors could have done with the data they collected (and it is not too late to still do these comparisons). The first comparison could have been between the non-medicated ADHD children and the medicated ADHD children to determine if there is a medication effect. The second comparison could have been between the non-medicated ADHD children and the controls to avoid the confounding variable of the medicated children. Since these were only preliminary studies any insight into the medication effect from these comparisons could have been presented in the abstracts.

The full publication of the data from these studies in peer reviewed journals will be interesting, but in the meantime it seems that the mainstream media, at the very least, should be more cautious in how they report recent findings from ADHD imaging studies.

-Jonathan Leo

References
1) Xia, S., Kimball, A., Branch, C. and Li, Xiaobo, Disturbed Brain Activity and Functional Connectivity during Visual Attention Working Memory Task in Attention Deficit/Hyperactivity Disorder . RSNA 97th Scientific Assemble and Annual Meeting. 2011.
2) Moncrieff, J. and Leo, J. A Systematic Review of the Effects of Antipsychotic Drugs on Brain Volume. Psychological Medicine, 2010. Jan 20 1-14.
3) Ho, B.-C., Andreasen, N. C., Ziebell, S., Pierson, R. & Magnotta, V. Arch. Gen. Psychiatry. 2011. 68, 128-137 (2011).
4) Puiu, T., Diwadkar, V., Stanley, J. & White, R. Disordered Control by the Dorsal Anterior Cingulate Cortex During Working Memory in ADHD. 2011 Soc. Neuroscience Meeting. Abstract 93.13/VV38.

That question is- ’If madness isn’t what psychiatry says it is, then what is it?’

It is a question that does live in me everyday since I became mad over forty five years ago.

It seems reasonable that I would still have that question, given that I didn’t then, and haven’t ever since believed that what psychiatry says madness ‘is’, was ever able to explain my own madness, or the madness of the hundreds of other people who were mad that I have now known.

I started to ask myself this question about the nature and subjective experience of madness in earnest as my season of madness lifted. It lifted due to my opportunity to go through madness without psychiatric intervention in the loving sanctuary of my aged grandmother’s house.

Blessed by her gentle and receptive love, and an infusion of unbidden spiritual light and love that broke though the darkness and raving madness that had been enveloping me for almost a year, I began to try and understand what had just happened to me.

These days I’m also wondering- if madness isn’t what psychiatry says it is- isn’t a form of sickness, a brain damaging disease process, then is recovery from madness itself something that has happened to me, and has recovery happened to some of the other mad people I have known?

What if madness is instead a potentially purposive, developmental and archetypal initiation process that can cause one to come out the other side- ‘Weller than well,’ as Karl Menninger famously said? If that is true, then is such a necessary initiation something that one needs to ‘recover’ from or can instead, actually benefit from?

Is madness in fact a potentially growth and renewal process that one becomes stronger from having undergone, even possibly gifted from the ordeal with hard won natural abilities for intimately knowing about the nature of sanity and madness, and with a capacity for additional compassion for fellow mad people with which one so easily identifies?

Doesn’t the ancient ritual of madness allow a person to be changed for the better- to be better off than one was before the initiation? Isn’t that the same process and purpose of all the initiations and rites of passage we go through in life- for one to pass through a liminal threshold into a new zone of personhood?

If every beginning experience or subsequent  ’episode’ of madness is, as I believe, an auspicious crisis of potential initiation and re-birth into a fuller life of enhanced possibility, then psychiatry thwarts the initiatory process by not realizing that that is what is really happening, is really possible, if the mad person is only received with loving acceptance as I fortunately was.

So, as I began my search for any shred of meaning about my own and other’s madness over 45 years ago, I was greatly relieved when by chance, I ran across books by Carl Jung.

Reading them, I knew at once that I was not alone in having been through such an initiation.

What an enormous relief it was to see that I was not the only alien being who had un-wittingly dropped into an alternative universe. That was what my madness had made me imagine in my painful isolation from others like myself.

I love Sasacha Dubrul and the Icarus Project folks who carry the perfect message- ‘You Are Not Alone’- as their motto to all who are mad in isolation. That sense of being so alone and alien is so painful that many kill themselves under it’s weight.

I can only describe it by saying that it feels like being in one of those apocalyptic films where a lone wanderer searches for other humans in a bleak and devastated landscape of deserted city streets and desolate highways.

How comforting then it was to read about Jung’s own- ‘Confrontation with the unconscious,’ itself triggered in 1913 by his traumatic break with Sigmund Freud who had prepared Jung as his heir-apparent.

Jung describes his visionary crisis-

“It was December 12, to be exact. I was sitting at my desk thinking over my fears. Then I let myself drop. Suddenly it was as though the ground literally gave way beneath my feet, and I plunged down into the dark depths. I could not fend off a feeling of panic. I landed on my feet in a soft sticky mass.. I was apparently in complete darkness.. before me was the entrance to a dark cave, in which stood  a dwarf with leathery skin, as if he were mummified.. a corpse floated by..and then a red newborn sun rising up out of the depths of the water..a fluid welled out. It was blood… a thick jet of it leaped out and I felt nauseated..the blood seemed to squirt for an unendurabley long time. At last it ceased and the vision came to an end.”

Jung also wrote about his experience in ways that seemed to describe the same subjective terrain I had recently been in-

“I stood helpless before an alien world, everything in it seemed difficult and incomprehensible. I felt as if gigantic blocks of stone were tumbling down upon me…In my darkness I could have wished for nothing better than a real, live guru, someone possessing superior knowledge and ability, who could have disentangled for me, the involuntary creations of my imagination.”

Even though I had no one to talk to about my madness, or an Icarus or Mad In America website to cling to for support, I felt armed with this strong sense of comradeship that came from reading Jung and then R.D. Laing.

I started to plan and imagine myself as a psychotherapist like Jung. A soul doctor who had been down below the earth in hellish realms and now could see the light of day and had compassion, even an aching wound that itself needed healing by giving to others in similar pain as I had been through.

So I decided to be a pastoral counselor and Chaplain as an Episcopal Priest who specialized in serving mad people in hospital settings. I re-entered college and became an official Aspirant to the Priesthood in my diocese.

But my wise friend and spiritual director told me after a year or so that I was too rebellious even for the very liberal Episcopal Church! He told me about a school in the SF bay area that had just started a dual masters’s degree program in clinical and transpersonal psychology.

My supportive wife agreed to move with our young daughter. I began classes and got a job as an intern in a high end traditional psychiatric hospital. Being consistent with my rebellious truth telling, I told the director in my job interview that I wouldn’t assist in any way in people getting shock treatments which they gave there. She begrudgingly gave me the job.

It was so depressing working there. Every chart had adamant instructions- ‘Avoid conflictual material.’ The whole purpose was to stabilize mad people on medication. I remember one group I was co-leading where the theme proposed by my co-therapist was- ‘What is your favorite Italian food?’

However, in the year working there I connected strongly with many people who were mad and I believe contributed to their lives.

Then another fateful turning point happened. I learned of a place called I-Ward in nearby Martinez California. It was 1980.

I-Ward was founded by a wild man named Dr. Stanley Meyerson. It was an experimental 20 bed, free standing, open door sanctuary that refused to diagnose or test the mad people who went there. It had been open for about 5 years. It used no medications. No restraints were used.

Like the Soteria House operating in San Jose and the Jungian, Diabasis House operating in San Francisco, I-Ward was made possible by Meyerson, like Loren Mosher of Soteria and John Perry of Diabasis all pointing to the amazing, mental health system, cost saving efficacy results of the still largest ever, NIMH gold standard double blind study on first episode madness, the Agnews Project.

That federally funded and state operated research project showed that the almost 100 young mad men who got placebo had a 75% lower re-hospitalization rate at follow-up than the group of almost 100 young mad men who got Thorazine..

Mosher, Perry and Meyerson made the case to San Francisco bay area county government policy makers that hundreds of young people could be diverted from spending the rest of their lives in the system on medication if they were allowed to go through madness without medication. It was the most humane thing to do and it would save the local and state governments huge sums by not providing long term care indefinitely.

But how many of you reading this right now have ever heard of the NIMH Agnews Project research- or of I-Ward or Diabasis House?

Soteria is somewhat well known because of it’s research component which I-ward and Diabasis avoided, but the reason the others such as the huge Agnews Project are not, will be part of the story of my next blog post. But mainly I will share about what it was like to daily witness and serve those who were mad on I-ward without medication or the trappings of the medical model for over three years.

I’ll close now with another quote by Jung which speaks to me now in my 66th year- myself a young madman who became an old therapist, a pilgrim whose progress has often been in question.

“The years when I was pursuing my inner images were the most important of my life- in them everything else essential was decided. It all began then; the later details are only supplements and clarifications of the material that burst forth from the un-conscious, and at first swamped me. It was the prima matetria for a lifetime’s work.”

Last year, I was a presenter at USC Law School’s Saks Institute for Mental Health Law, Policy and Ethics focusing on the use of Mechanical Restraints in Mental Health Care. During that presentation, I showed pictures of police dogs gnashing at their prey and fire hoses exploding with force on its intended targets. The prey and targets were Black Americans marching for their civil and human rights during non-violent protests. Just as those images flashed before the auditorium audience, they flashed before me when as a citizen, I was aggressively approached by police for involuntary commitment and when  hospital staff, “the 4 big men in the white uniforms” and/or the police forcibly restrained me because I was noncompliant with treatment. The experience of restraint is traumatic on its own, yet it was compounded by my memories of violence, hate and lack of power imposed on Black Americans. But now it was happening to me as part of my “care” as a psychiatric patient.

On September 1st 1968, Dr. Martin Luther King gave a keynote address at the American Psychological Association’s annual meeting. In that speech, he called on psychologists, who invented of the term “maladjusted”, to recognize that maladjustment is a normal and “adjusted” response to injustice:

“There are certain technical words in every academic discipline which soon become stereotypes and even clichés. Every academic discipline has its technical nomenclature. You who are in the field of psychology have given us a great word. It is the word maladjusted. This word is probably used more than any other word in psychology. It is a good word; certainly it is good that in dealing with what the word implies you are declaring that destructive maladjustment should be destroyed. You are saying that all must seek the well-adjusted life in order to avoid neurotic and schizophrenic personalities.
But on the other hand, I am sure that we will recognize that there are some things in our society, some things in  our world, to which we should never be adjusted. There are some things concerning which we must always be maladjusted if we are to be people of good will. We must never adjust ourselves to racial discrimination and racial segregation. We must never adjust ourselves to religious bigotry. We must never adjust ourselves to economic conditions that take necessities from the many to give luxuries to the few. We must never adjust ourselves to the madness of militarism, and the self-defeating effects of physical violence.”

I will add that we must never adjust ourselves to inhumane mental health care that discounts the very essence of who we are as humans. And today I am honored to add my voice and opinion to the Mad In America site through this blog, to take this day of remembrance and celebration of the life and work of Dr. Martin Luther King, Jr. to highlight Dr. King’s call for “creative maladjustment” as synonymous to our work here of rethinking psychiatry. Together as consumers, providers, family members, policy makers, advocates, journalists and doctors, we refuse to accept the status quo by standing up against injustices in mental health care. Through “creative maladjustment”, MadinAmerica.com provides a venue for all who share a vision of justice in mental health care to engage in dialogue and action that will ensure that our  care is compassionate, person centered, driven by client choice, and ultimately results in people leading independent and full lives. How are you engaging in acts of creative maladjustment to ensure justice in mental health care?

“Injustice anywhere is a threat to justice everywhere.” MLK

In defending such involuntary commitment and forced drugging cases, PsychRights has not challenged the diagnosis per se, or the invalidity of the diagnosing process as a whole, because the person seems clearly crazy and I have felt that challenging a diagnosis of “mental illness” in such circumstances would only serve to destroy my credibility in arguing that the person should not be locked up and forced to take the drug(s) against their will.

This tactical decision does not mean I don’t recognize that diagnosing, itself, can be very harmful.  One obvious harm is the stigma that attaches once one is diagnosed, especially, a diagnosis of serious mental illness, such as schizophrenia.  People with such labels can immediately lose their jobs and essentially become unemployable.  They often become social outcasts, that has been described as “social death.”

In fact, the legal system often recognizes that having such a psychiatric diagnosis can be harmful.  For example, in Alaska, where I practice, psychiatric respondents (those on the wrong side of the locked door and at the the sharp end of the needle) have the right to have commitment hearings closed from the public in order to protect their reputations.  As an aside, they also have a right to have them open to the public, a right which is ignored except in the cases I take because I ask my clients their preference after discussing the pros and cons.

There are other harms from diagnosing.  Just consider a diagnosis of “personality disorder.”  To me, any profession that tells people they have a personality disorder has mainly served to expose itself as not a healing profession.

I do know that some people find getting a diagnosis comforting to have a name put on the trouble they are having, but I would suggest this is a false comfort.  Accepting that one has a brain disease, must give up any hope of a full life, and must take debilitating drugs for the rest of their lives that will only allow one, at best, to spend one’s time in a day treatment room watching television and smoking cigarettes is not truly helpful.  One thing that it does is remove responsibility for gaining control of one’s life, which is harmful in itself.

Of course, the extreme harm caused by the drugs for many is the obvious result and, indeed, I would say is ultimately the purpose of most diagnoses.  That and to allow the diagnoser to get paid for their effort.

Let’s take a particular look at diagnosing mental disorders in foster children and youth.  These children are in foster care because they have been found to be the subject of abuse or neglect.  While many times these removals are not really warranted and it would be far better in any event to give the parent(s) help in being better parents, assuming the child or youth has been the subject of abuse or neglect, it is natural for the child or youth to “act out” in ways that disturbs the adults in their lives.  Then, no matter how bad the home situation might be, for most, removing them from their home is upsetting, which is also a reason for acting out.  The foster placements can be pretty horrific, which is another reason for a child or youth to be upset and act out.  Finally, many foster children and youth experience multiple rejections with many different foster placements.  It is not unusual for a youth who has been in foster care for many years to have been placed in 20 different foster homes without being adopted, which is the holy grail for most foster children.  The rejection and lack of permanency is also inherently upsetting.

Instead of giving them diagnoses and drugs, we should be giving them help in dealing with the natural emotions they are experiencing and most importantly, we should be giving them help to become successful.  At the end of a meeting I once had with the Alaska Commissioner of Health and Social Services when we were suing the State of Alaska over drugging children and youth in PsychRights v. Alaska, he said, “so what you are telling me is we should do a better job of diagnosing.”  After I pulled out my hair I said, “No, we should do a better job of not diagnosing.”

Whether it is adults or children, or seniors, for that matter, is it moral to give people dubious, harmful psychiatric diagnoses in order to get paid?

With respect to the dubious nature of psychiatric diagnoses, there are two books I heartily recommend.  The first, Schizophrenia: A Scientific Delusion, by Mary Boyle, Ph.D, analyzes the definition of schizophrenia and demonstrates that it is invalid as a classification, just considering that it does not distinguish schizophrenia from not schizophrenia.  They Say You’re Crazy: How the World’s Most Powerful Psychiatrists Decide Who’s Normal, by Paula Caplan, PhD, is an insider’s account of the unscientific process in promulgating DSM IV.  Now the American Psychiatric Association is preparing to adopt its Fifth Edition of the Diagnostic and Statistics Manual of Mental Disorders, commonly called “DSM5.”

Dr. Caplan is a leader of what is called the PLAN T Alliance (PLAN T stands for Psychiatric Labeling Action Network for Truth), which recently launched a petition against the DSM5.  As the PLAN T petition states:

It is increasingly clear that the editors of the major psychiatric manual, which reaps huge profits for the American Psychiatric Association that publishes it, are ignoring the massive evidence of harm done by the labels of previous editions of the manual and of likely harm from what they plan to put in the edition they are now preparing. Previous editors ignored the need for both reform of their work and concern for those it harmed, despite letters and petitions representing more than six million people. . . . The pledge we request here is one of the major kinds of action we recommend. It is a boycott. If you, like us, are deeply concerned about the lack of science behind the Diagnostic and Statistical Manual of Mental Disorders, the absence of evidence that it helps in identifying effective treatments, the absence of evidence that helps with outcome, and the abundance of evidence of people being seriously harmed by receiving a psychiatric label, as well as because the editors of the previous, current, and in-preparation editions of the DSM have been largely unresponsive to concerns expressed about these problems, please sign this petition as a statement that you take the pledge here below [to boycott the DSM].

In addition, a petition by the Humanistic Division of the American Psychological Association (Div. 32) protesting various aspects of the proposed DSM5 has garnered quite a few signatures.

Both petitions are worthy of support in my opinion.

Unrecognizable voices murmur in the background, gradually becoming louder and crisper, as though I’d just been on the other side of a closed door that has slowly started to swing open.  My ears feel like they are turning themselves back on after being off, and I’m not sure why I have this sensation.

“Laura?  Can you hear me?  Laura?”

I hear these words, and recognize a voice associated with memories, although it takes a moment to place it as my father’s.  I hear another voice, unfamiliar, say, “She’s coming back.”  I think to myself what an odd dream I’ve found myself in.

“Laura? You’re alive.  We’re so happy you’re alive.  You’re going to be all right.  We love you so much.”  My father’s voice, still slightly distant, fills my ears again.

A sense of dread starts to trickle into my consciousness as I realize, my eyes still closed to what’s around me, that this feels different than a dream— too clear, too visceral.  Opening my eyes once again and trying with all my might to keep them that way by lifting my eyebrows as high as they’ll go, I will my eyes to focus on the scene around me.   In a matter of seconds, I realize that the white light above comes not from the hot August sun; it is the sterile light of a fluorescent lamp that is positioned directly over my prostrate body.  I am not lying on the beach, but on a cold, hard table of some type.  There are indistinguishable bodies moving around me, many of them.

I discover that I’m not speaking, that I can’t speak.  I sense something blocking my throat, something foreign and uncomfortable.  As though someone has just read my mind, I see a pair of hands over my face, and close my eyes in panic as I feel the horrible sensation of a contraption being pulled from deep out of my chest, up and out of my body, scratching along the inside of my throat as it comes out, but feel relief when I suck in fresh air a second later.  I see a long breathing tube in those foreign hands, and wonder how it could be that this whole thing was just inside of me.  All of a sudden, the pieces of this puzzling situation snap into place.  I am alive.  I am not lying in a dream, but rather in a hospital, surrounded by doctors and family.  I am covered with wires and tubes, and my neck is held firm in a brace of some sort.  Machines are beeping all around me.

I go back to those first three words that seared themselves into my consciousness just a moment ago— I am alive.  Immediately, I am filled with a fury that lights my very being on fire. I feel my entire body clench in rage.  I begin to speak, my voice hoarse, my throat surprisingly sore.  I feel like a teakettle about to explode, shaking and spewing on the stovetop.

“WHY?  WHY am I HERE?  Why didn’t you just let me DIE?”

I am angrier than I’ve ever been in my life and I feel my body begin to move uncontrollably.  I am suddenly shaking and convulsing, and I hear an unfamiliar voice announce that I’m seizing.   Someone moves near the head of my bed, and a sensation simultaneously warm and dull begins to flow through me, as though my body, my thoughts, my entire perception of reality is all of a sudden in slow-motion, and I fade into a state of blackness.

____

From the remaining time I spent on this unit, I don’t remember much—a male nurse with a foreign accent and dark hair; my parents’ constant presence; an increasingly deep, intense ache throughout my body as I continued to emerge further from the coma I’d been in; a horrible pain in my throat, and a scratchy voice that left me only able to whisper.

____

Upon being moved sometime later from what I’d come to learn was the Intensive Care Unit at a hospital in Boston to its General Medicine floor, I remained in a state of almost complete disorientation.  I had no sense of how I’d gotten there, no sense of what day it was or how long I’d been there for, and no sense of how quickly or slowly the hours were passing.  I was stuck in a sorrowful state of complete awareness that I had utterly failed at the one sacred thing I’d held onto for so many years as the only reliable escape from my life.  Now what was I to do?  I felt more imprisoned in my skin that I’d ever been.  Unable to move my limbs more than a few centimeters without experiencing tremendous pain, I was trapped in my body and my mind, with myself and with this reality, as I moved in and out of the drugged state of sleep I was in.

What I learned in the coming days from my father was that I had been found hours later on that Saturday evening by him, after he’d started to worry when dusk came and I still hadn’t returned home.  How he’d chosen the right path and found me, in the darkness and with the roaring sound of the ocean, nearly a half-mile away from the house, when he could have walked in a countless number of directions, I couldn’t understand.  I was baffled, as I was sure I’d had a foolproof plan, and felt a wave of anger towards myself that I hadn’t done a more thorough job.  How could I have messed this up?

The local hospital in the town next to ours had told my parents that they didn’t have the proper facilities to treat me in the condition I was in and that I’d need to be sent by helicopter to either Portland or Boston if there was any chance of my survival.  The doctors, I learned, had recommended that my parents sign a ‘Do Not Resuscitate’, for if I survived, which they said would be a miracle, they believed I’d be in a permanent vegetative state.  How was I still here?  Why didn’t it work?

As I lay in my bed on the Gen Med floor, supervised by a 24-hour hospital-appointed chaperone, I tried to wrap my mind around the strangeness of hearing what had happened to me, around me, because of me in this period of time, the length of which I was still unsure, without a single speck of my own memory connected to it.  My physical body was present throughout it all, undoubtedly picked up and carried and prodded and strapped to machines, undoubtedly surrounded by fear and sadness and confusion and anger and desperation and crying and yelling and screaming and deafening silence and an overall sense of complete dread, but my conscious self wasn’t there for any of it.  And here I was, thrown back into that consciousness against my wishes, a section of my life’s movie-reel cut out and dropped to the editor’s floor to be discarded forever, the details forever a fantasy in my mind, never to be remembered as they really happened.  How was I to make sense of this?

For now, the depth of my understanding was merely a glimmer of awareness, as a thick mental fog had me insulated from the cold, hard reality of everything that had unfolded in that period of time.  I only had one thought with any clarity in my mind, and it had set itself on replay— Because I failed, I am now stuck here in consciousness, and who knows how long it will be before I’ll have another chance to turn this failure into a success.

Lying in bed with a catheter strapped to my leg, I watched life go on around me during my time on Gen Med.  The “one-to-one” chaperone sat upright in her chair along the wall, glancing up at me every thirty seconds or so before turning a page of her magazine to make sure I hadn’t managed to complete the botched job that had brought me in here in the first place.  Countless nurses and doctors circulated through my room on a regular basis, examining me and my body, and I was sure I could see a subtle look of disgust in their eyes as they undoubtedly wondered how I could have been so selfish as to choose to take my life and leave behind a loving family.  As I was poked and prodded over and over like meat on a slab, I told myself that if they only knew what my life had become, they’d understand.

My sisters took turns sitting by my side, the look of shock and despair in their eyes screaming loud despite the calm quiet of their voices, as one would read aloud to me— from what book, I can’t remember— and the other would hold my hand until I slipped into sleep.  I knew I should be feeling guilt for everything I was putting them through, but I was unable to feel anything other than my own selfish despair.

Days passed, how many I’m not sure, and I eventually gained some physical strength.  I was too weak to use the toilet on my own, the catheter still strapped to me, but I was able to shuffle in my rubber-grip hospital socks to the bathroom a few feet away to brush my teeth and put water on my face, a nurse’s arm around my waist and my hand clenched tightly around the pole of my IV drip.

When my eyes met the mirror, I was faced with an unfamiliar likeness.  I remembered what my dad had told me at one point— that he’d found me at the bottom of a small cliff that my body must have rolled off of after I’d lost consciousness— as I looked at the black and green bruises around my eye and on the side of my ashen face.  The eyes that looked back at me were cold, hardened, and empty, and I didn’t recognize myself, although this experience of dissociation was nothing new.  I was a body with a heartbeat, devoid of a conscience and a soul.  I held onto the hope that I’d find escape from this body in just a matter of time, when the chaos of this hospital mess was resolved and I was back in the real world.  I held onto this thought, and it kept me going.  I knew I needed to stabilize and get well in there if I was going to get discharged, find freedom, and finish the job once and for all.

Eventually, it was determined by my insurance provider that it was time for me to move on to the next phase of my recovery.  I was to be sent to a locked psych ward just a few towns away by ambulance, to the very same hospital on the hill that had initiated me into the world of psychiatry back when I was eighteen years old, when I was filled me with a naïve hope that my life would get back on track and that I’d be fixed.  Here I was, returning once again, seven years from the January day in 2002 when I cruised down the hill after my first appointment with my new doctor— an MD and PhD!! — to the bus that would take me back to Harvard Square, my head held high, sure that everything would work out OK now that I’d accepted my bipolar disorder and the treatment I was told I needed.  That hope now felt so foreign to me, and I thought about how stupidly ignorant I was back then to have thought I’d ever be well.

Life moves in a vicious circle, doesn’t it?  I thought as I was straight-jacketed in blankets, my body freezing cold, moved from my bed, and strapped tight to a stretcher.  Two EMTs waited in the hall to take me to the elevator, along the winding corridors, lights flickering in the ceiling and silence broken only by the squeak of their shoes on the linoleum floor, as we weaved our way down to the basement and the rear of the hospital where an ambulance sat waiting.  Secured in the back of the ambulance, one EMT by my side and the other in the front behind the wheel, I looked out the back windows, the world going on as it always had, just beyond my grasp.

We pulled out onto Storrow Drive and immediately found ourselves in traffic.  I watched the car behind us, a Volvo occupied by parents in the front and children in the back, and I wondered what they’d think if they knew how mentally ill and insane the person was who lay strapped in the stretcher in the ambulance just in front of them.  I wondered if they could see me, although I did nothing to get myself out of plain sight.  I thought about how I was once a kid, myself, sitting in the backseat of my parents’ car, en route to hockey practice or a play-date or dinner at our favorite Chinese restaurant, blissfully ignorant of the future that awaited me.  And here I was, on my way to another psych ward, my life in shambles and my fuel tank of hope totally empty.  As I wallowed in self-pity, the EMT sitting to my left began to breathe heavily.  The reek of cigarettes that hung about his body had me wondering if his smoker’s lungs might be working on overdrive for oxygen.  I soon realized, however, that he had slipped into sleep, his heavy breathing now morphed into a deep, loud snore that ripped at my eardrums.

Storrow Drive was leading me to my fate at a snail’s pace of ten miles an hour with the soundtrack of my life a stranger’s snore, and I wondered how much more pathetic my life could become.  I thought about the hospital on the hill sitting in its nearly two hundred years of psychiatric wisdom, just ten or so miles away.  It had known all along that I’d be back, strapped to a stretcher in this state.  It had been waiting silently and patiently for me all these years.