A Tale of Two Cousins

Suzanne Beachy
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Author’s Note: On November 7, 2014, Dr. Allen Frances began a series in Psychiatric Times titled “How to Fix the Broken Mental Health System: Call for Suggestions”. My list of recommendations (along with those from a diverse group of activists and practitioners) was included in his introductory article. During the time that the introductory piece was being prepared for publication, Natalie Timoshen, managing editor of Psychiatric Times asked me, “would you be interested in writing a 1200 to 1500 word article expanding on your 10-point recommendations: I think it might be valuable to our readers (practicing psychiatrists) to get a mother’s perspective on what’s needed?”

So I wrote “A Tale of Two Cousins” to give practicing psychiatrists a mother’s perspective. Ms. Timoshen prepared it for publication and sent me a contributor agreement. But then less than a day later, she sent another message with the bad news that she had to “withdraw our acceptance to publish your essay.” She explained that although she found my story “compelling and well-written” and she “loved it,” her board members were not in favor of publication. When I asked Ms. Timoshen if my essay was too threatening to psychiatry, she replied that a “human-interest sort of story did not fit with the direction [our Editorial Board members] want to take.”

I am grateful to Mad in America for giving voice to Kimmy’s and Jake’s stories, and to Kimmy, for giving me permission to share some of her journey here.  And if there are any practicing psychiatrists reading this piece, welcome! I believe that Kimmy and Jake have an important message for you.

What would you do if you opened your inbox one morning and found this message:

Maybe writing this won’t do any good but I have to reach out somehow. My meds aren’t working like they’re supposed to. I am having crippling anxiety attacks all day every day right now. I don’t know how to function normally anymore. I spent several hours tonight crying, as it stands I can hardly see this screen through my tears. I am praying for relief and I don’t know what to do.

I feel like I’m dying inside. My life is going nowhere, I feel like the most pointless person alive. The best years of my life are being eaten up by this awful mental health bullshit. I’m through with it. One way or another I have to be free of it.

If you can think of any starting points, please tell me. I can’t do this anymore. I’m at the end of my rope.”

If you’re like me, you would immediately try to contact the sender and see if she’s still alive. I did, and she was. I had never met her, this young woman named Kimmy, but she was the first cousin of my son Jake, who had died four years previously after a struggle with his own “awful mental health bullshit.”

Kimmy had been thoroughly engaged with the mental health system in Michigan for ten years. Why, with all that help – all the “helpful” diagnoses and treatment – why did she want to be free of it? After all, if “mental illness is an illness like any other,” and if she was fully complying with her treatment, then she ought to be becoming increasingly healthy and hopeful, right? In fact, just the opposite was happening.

As a despairing teenager, Kimmy had her first encounter with the mental health system, was diagnosed with major depressive disorder and given a prescription for paroxetine. It wasn’t long until Kimmy experienced mania. Instead of exploring the mania as a negative effect of the paroxetine, she was given a new diagnosis, bipolar disorder, and prescribed more drugs. She then experienced hallucinations. Again a bad reaction to the drugs was not suggested. No, instead Kimmy was labeled with yet another mental disorder – this time schizoaffective disorder.

Kimmy had entered the mental health system as a depressed teen, and ten years later, sicker than ever from a cocktail of psychiatric drugs and dying of hopelessness, she reached out to a stranger for help.

What would you suggest for Kimmy?

I invited her to come live with my family for a while. Two of the resources she found very helpful in her temporary home with us were:

  • A copy of Robert Whitaker’s “Anatomy of an Epidemic” and
  • Being welcomed into a home church of fun-loving people her age.

 

Kimmy now had the advantage of accessing some of the recommendations I’d published on Psychiatric Times for how to fix our broken mental health system (the full list can also be seen at the bottom of this post), namely number 2 – a spark of hope for a life worth living. Also important, Robert Whitaker’s research allowed her to question the validity of her diagnoses along with her identity as a “mentally ill girl” with a “sick brain.” She realized that many of her problems, maybe even most of her problems, were iatrogenic. Her new group of friends embraced her unconditionally and appreciated her unique self. They did not pity her as someone with a diseased brain. She had a therapeutic community, and by that I mean a community of loving receptivity. She got a lot of hugs.

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Kimmy and Suzanne

 

With the help of her supportive mom and a compounding pharmacy, Kimmy began to slowly taper off her psychiatric drugs. It was excruciatingly difficult. (Mental health professionals are often shockingly ignorant about the challenges of withdrawing from psychiatric drugs, usually misinterpreting severe withdrawal symptoms as a return of mental “illness” or the addition of a new illness.) Fortunately, two and a half years after Kimmy first reached out for help, she is now free of psychiatric drugs and enjoying balance and clarity. Now, when she has a bad day, it’s a bad day, not a symptom of “mental illness.” She is living with friends. She has a job she loves. Her boyfriend enjoys inventing creative ways to prepare healthy food for them. She has hope. She has a future.

Kimmy’s cousin, my son Jake, was robbed of hope by the mental health system. In the last year of his life, he stood before a common pleas judge for committing a nuisance crime. The judge had letters of endorsement from Jake’s therapist and from the OSU School of Music professor who was helping Jake prepare for an audition with the U.S. Army Band. Tragically, maddeningly, the judge chose to view Jake solely through the lens of a consultant psychologist who pronounced him “mentally ill” based on a single conversation with him. Any of his past accomplishments or future potential became inconsequential. It did not matter that he was a college graduate, talented artist, gifted musician, or that he was creative, kind, quirky, and a bit too sensitive for his own good. Judge Bender sneeringly told Jake to “have more realistic expectations” for his life and promptly sentenced him to six weeks in the county jail.

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Jake’s high school graduation

 

Over those six weeks in jail, Jake decided to heed the judge’s advice. He gave up on any dreams and goals. When he was released, he told us that he might as well be homeless. Six months later, on April 5, 2008, he died as a homeless man.

Allen Frances bemoans that so many “mentally ill” are sentenced to jail. My son’s jail sentence was a trip to the beach compared to the other life-destroying sentence­­ meted out by Judge Bender. That sentence: incurably mentally ill – damned to a limited life due to impairment – worth less.

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Jake and his sister, Natalie, with his most prized possession, his Ernie Ball Music Man

I believe there are two things that might have saved Jake. One is hope. Hope that life can get better. The other thing that might have saved him is truth. There is no hope without truth. Can we please start telling the truth about psychiatric diagnoses? Please look at the work and research of psychiatrists who have achieved real success in empowering people diagnosed with psychotic disorders to reclaim lives worth living. Please, let’s look at the work of psychiatrists like Marius Romme, Jim van Os, Loren Mosher, Pat Bracken, William Glasser, Birgitta Alakare, G. L. Harrington, Sandra Steingard, John Weir Perry, and Doug Ziedonis.

Equally important, people who have overcome diagnoses of schizophrenia are a rich resource of life-saving information. If you have not already done so, please explore the wisdom of former schizophrenia patients like Ron Coleman, Eleanor Longden, Will Hall, Jacqui Dillon and Kevin Healey.

Psychiatrist Daniel B. Fisher has both professional credentials and lived experience as a former schizophrenia patient. He conducted schizophrenia research at the NIMH (he also has a Ph.D. in neurobiology) before going to medical school and completing his psychiatry residency at Harvard. As a young man he was involuntarily hospitalized three times for his psychosis. We can learn a lot from his experience.

Dr. Fisher has written:

When a psychiatrist tells a young adult that they have a life-long mental illness, hope crumbles. They are often told that their mental illness is like diabetes. This is not a fair comparison. Diabetes is due to a defect in a body part, the pancreas…. On the other hand, mental illness literally means that your mind is sick. It is as if your very personhood is declared sick. Your mind, unlike your pancreas, is not just a body part…. Your mind enables you to relate, set goals, dream, and have hope. If you and the people around you believe that your mind will be defective and sick for the rest of your life, you are left without hope of ever having the agency to build a life. This dire prediction can become a self-fulfilling prophecy.

Allen Frances likes to talk about numbers – big numbers like 400,000 mentally ill sentenced to jail or prison, hundreds of thousands of mentally ill living homeless, a million psychiatric beds closed. People are not numbers. One person is so complex. The stressors that can send a person spiraling into mental or emotional turbulence are so many and so varied – stressors like past trauma, betrayal, sleep deprivation, spiritual emergency, adverse childhood events, social isolation, poor job fit, bereavement, guilt, shame fear, frustration, loss of hope, drug use, or poor nutrition. How can throwing a formula at people possibly help?

I think a better starting place would be to ask – “How do I best help this one person in front of me?” And I think that help starts with asking, “What happened to you?” and “How can I help you to reclaim a life worth living?”


How to Fix the Broken Mental Health System– A Mother’s Perspective 

(originally published at Psychiatric Times

  1. Incorporate the ideas of psychiatrist Sandra Bloom and the Sanctuary Model of mental health care. Dr. Bloom says the important question in psychiatry isn’t “What’s wrong with you?” but “What happened to you?”
  2. Promote hope for a life worth sticking around for
  3. Provide trauma-informed care
  4. Help with reducing the dosage of or withdrawing from psychiatric drugs
  5. Ban direct-to-consumer advertising of psychiatric drugs
  6. Decent housing for patients, preferably within a therapeutic community
  7. Partner with non-medical models of care such as Hearing Voices Network and Open Dialogue (University of Massachusetts Psychiatry is leading the U.S. effort with Open Dialogue for the treatment of psychosis)
  8. Hugs
  9. Help in repairing frayed relationships with family and significant others
  10. Explore the patient’s “psychiatric” issues in the context of his/her life experiences

 

51 COMMENTS

  1. Too little hope VS too much hope.

    Too much apathy VS too little apathy.
    Apathy ( definition from the internet) Apathy is one of the hallmark symptoms of schizophrenia . An absence of interest in or concern about emotional, social, spiritual, philosophical and/or physical life.

    Why aren’t you following orders?
    ““Apathy and indifference is the final result of all of the most potent psychiatric treatments.” Peter R. Breggin, MD

    The golden rule.
    http://www.guerrillalaw.com/images/goldenrule.gif

  2. This is a wonderful article. It is heartwarming that Kimmy found her way, and heartbreaking and profoundly unfair and really an emotional crime, what happened to Jake.

    It’s good that Kimmy found the MIA book. If she or someone like her (who gets labeled with that meaningless word, “schizoaffective”) needs more encouragement, I also recommend the book of Paris Williams, who is one of the contributors here. Rethinking Madness is a very human and encouraging read about the recovery of people who get labeled with “schizophrenic” and “schizoaffective” conditions. Also, the 15 case studies of people labeled “schizoaffective” and “schizophrenic” in Ira Steinman’s book Treating the Untreatable are excellent. Steinman discusses how drugs can be safely, gradually titrated down as ‘psychotic” symptoms come to be understood and relieved.

    I have a related story. There was recently a call for personal stories about how people had come to better “manage BPD” (Borderline Personality Disorder), coming from a major US psychiatric organization that is funded partly by drug companies. I saw this as an opportunity to send them an article about how my recovery from BPD was founded on rejecting the entire basis of labeling people with unscientific “personality disorders”, rejecting medication, and finding human help. I wrote about how for me getting better is about living and not managing illness. For some reason, they did not like my submission… 🙂 I made this submission mostly out of genuine good will, but also partly to make these pseudo-experts aware that people they once labeled as ill now see right through them.

  3. Wonderful article, Suzanne. I am glad you were able to help heal your niece, and heartbroken due to what happened to your son.

    My story is basically exactly the same as Kimmy’s – the adverse reactions of an antidepressant misdiagnosed (according to the DSM-IV-TR) as bipolar, resulting in hallucinations caused by a neuroleptic. From drugs.com: “neuroleptics … may result in… the anticholinergic intoxication syndrome … Central symptoms may include memory loss, disorientation, incoherence, hallucinations, psychosis, delirium, hyperactivity, twitching or jerking movements, stereotypy, and seizures.”

    One has to wonder how long the mental “health” industry is going to continue claiming a class of drugs that causes the symptoms of schizophrenia / schizoaffective disorder / bipolar, is their “gold standard” cure for these scientifically invalid diseases.

    Let’s pray for an end to iatrogenic (and judicial) destruction of hope and mental illness creation. And I am so sorry that you lost your son.

  4. Great article. Thank you Suzanne.

    There is nothing worse than being told that you have a “broken brain” and there is nothing to be done but take lifelong medication. Breaking away from that sentence was a life-turner for me.

    This article clearly demonstrates what love, creativity and compassion can do.

  5. iatrogenic … now there is a word.

    Your story tugged at my heart for sure. Jake looks exactly like our son Bill. Bills spirit is recovering from psychosis, and the life after that, and he is constantly on our minds. Medication free but not always symptom free. My advice to him is to always make sure he is having fun.

    Your use of the word hope makes me want to share this Jim Carrey speech and talk.
    https://www.mum.edu/whats-happening/graduation-2014/full-jim-carrey-address-video-and-transcript/

    https://youtu.be/el0LbrdL0ks

  6. Thanks for this article.

    Meanwhile, this seemed relevant here.

    http://www.latimes.com/opinion/op-ed/la-oe-sapolsky-lubitz-germanwings-depression-20150402-story.html

    Yesterday Dr. Robert Sapolsky, who is a very successful researcher and public speaker from Stanford, told us that depression is 100% biological, and that the lives of those diagnosed as schizophrenic are “wasted lives.”

    He said untreated depression is the most lethal disease on earth! I got the statistics I needed to find out. The death rate by suicide un untreated depression is about 2.7%/year.

    His big thing is “depression is biological,” a theory he developed while worki g with baboons.

    Not exactly a humanist. The type that thinks we are robots and need new parts sometimes. These are the kind of people who convince the public to go on drugs.

    The article I linked to, about the German pilot, said nothing about the possible role of psych drugs, which is not surprising.

  7. Excellent article. And yes, I do believe a cadre of “honked off” parents out there to give an alternative “hand of hope” to families (as opposed to NAMI’s “pill of hope”) really needs to happen, the sooner the better.
    Please contact Bob Whitaker to contact me – ebl

  8. Hi Suzanne,
    You know Suzanne, we Mothers had hoped that the story of “life after treatment” might be akin to life after a near death experience…you know the ones where the person through some tragic experience passes through the darkness in some form and then experiences their true selves as a beautiful empowered, Loved Being now ready to return and ready to open up to all of Life’s gifts and offer them to the world… Instead all too often…actually most of the time (especially forced and court ordered treatment), ”
    Life after massive drug and made-up storytelling treatment” is some form of death… Psychiatric Times your denial is symbolic for what Life after treatment is for our Beloved Ones…A DENIAL…. A denial of the Gift of themselves ..and instead what was given them a mirror image of a nightmare of the worse kind…death of the Soul
    Psychiatric Times, You have earned your adds you have earned the badge to protect and promote… but please know this…
    you may deny our stories but they will live forever in our hearts and in our homes and in our communities and in time our tears and our strength will grow to deny your denial; and in some near future, Our Stories will becomes Songs of the Winds of Change…and Life’s future Children will come to know Life’s crisis as a time, not as being labeled and treated, but the precursor to an ever more beautiful opening and blossoming of their true selves..witnessed and tended by the community in waiting… with every caress of the breeze we are growing growing growing… the Winds of Change are now upon us…

  9. “human-interest sort of story did not fit with the direction [our Editorial Board members] want to take.”

    Unbelievable admission…

    Thank you for this beautiful story on how you turned the experience of unbelievable tragedy into extending a helpful hand to another person and saving a life. It’s inspiring.

  10. Thank you, Suzanne, for your heartbreaking and inspirational article. I am appalled, but not surprised, by Psychiatric Times’ refusal to run your story because it did not coincide with its agenda. The clueless deference to mainstream psychiatry by the likes of Judge Bender compounds the tragedy and travesty of what happened to your son. My heartfelt condolences on the loss of Jake and thanks for all you that do to help others avoid a similar fate.

  11. You did what “treatment” should d0 – you provided hope, confidence, and a pathway forward. You also provided unfiltered information regarding the truth. I’m totally impressed and ready to nominate you for sainthood! But while what you did is remarkable, I wish that it weren’t. None of these things are rocket science. They require courage, empathy, and the belief in the human spirit. You obviously possess all three in abundance.

    Thanks for sharing both of your experiences. It is discouraging but not surprising that the psychiatric profession is not interested in “human interest stories,” though I suspect what they really weren’t interested in was your questioning of their basic paradigm and providing an alternative viewpoint on what does and doesn’t help a person suffering from “extreme states.”

    —- Steve

  12. Suzanne

    Not only does psychiatry not have any desire to hear human interest stories, they never listen to the stories of the very people who they refer to as their “patients”. I dealt with five psychiatrists in my journey of supposedly being “mentally ill”. Two were absolutely psychologically and emotionally abusive, shouting at me with spittle coming out of their mouths, one was a nice guy but not helpful, one was paternalistic and acted as if he knew totally what I needed (and he didn’t have a clue), and one was actually helpful and was willing to work out of his own humanity in giving me the time and space that I needed to find healing and well-being. He was the ONLY ONE who listened to my story, paid attention, and valued what I shared with him as a great treasure. Consequently he was the only one who walked with my in getting my life back together again. The nice guy always got uncomfortable and began looking at his watch any time that I tried to tell him about me, the two screamers never allowed me to say anything as they yelled and screamed, the paternalistic psychiatrist looked at me when I told him about me but I could tell he didn’t care and wasn’t really listening and he went right on when I got through as if I’d never said one word. It was only the young psychiatrist who shared something of his life with me who walked with me to find what I needed to heal myself.

    THEY DON’T GIVE A DAMN ABOUT OUR STORIES BECAUSE THEY BELIEVE THAT THEY’RE THE ONLY ONES WHO KNOW WHAT WE NEED! After all, they have the letters behind their names! And of course, what we need is pills upon pills upon pills, all for our own good of course!

  13. Stephen,

    An excellent post. Psychiatrists generally don’t care about human interest stories because it threatens everything they have learned. As a result, they claim this is only anecdotal evidence and that most patients needs meds come heck or high water even though they have never presented any credible non biased studies that show they even work.

  14. Dear Suzanne,
    Thank you for sharing your heartbreaking story about Jake, and your heartwarming story about Kimmy.
    I am working up my courage to tell my whole disastrous story about being diagnosed bi-polar under my real name. I was mandated to take meds, which made me hypoglycemic. A GP who was trying to get to the bottom of this problem told me after a physical exam that I had a lump in my right breast and that I needed to have a mammogram. (There was no lump.) I was then diagnosed with ductal carcinoma in situ (DCIS) and a surgeon recommended what else, but surgery. I found out after that some cancer experts are trying to take the word “carcinoma” out of DCIS. So I had surgery for an abnormality in my milk ducts that was not cancer. All this happened because of the risperdal and/or lithium I had been mandated to take. I was too numb from the drugs and the cancer diagnosis to do the research I would have done (I have a Master’s degree) had I not been on drugged. Our medical systems in the U.S. and Canada are broken. My heart goes out to you for your courage in telling Jake’s story. I only lost a breast. I can’t imagine how horrible it must feel to lose your son to such a system that puts profits ahead of the health of people.

  15. Also, I should have mentioned I recently celebrated my 3rd anniversary meds free. Though it seems kinda silly to celebrate this, since I was only on drugs for six months and nearly all my life I’ve been meds free. I was diagnosed bi-polar at age 51. Thanks be to Robert Whitaker’s Anatomy of an Epidemic and to one of my sisters for pointing out the book and Truehope vitamins out to me.

  16. Thank you Suzanne. I am grateful for this community. Some of my family members, including my husband and children still believe in modern psychiatry. I am trying to get them to read Anatomy of an Epidemic and finally last week my husband picked it up. Thank you again for sharing your stories. They help keep my own struggles in perspective.

  17. Just wondering about the criminality in forcing drugs down throats with up to 3000 reported and known adverse side effects reflecting any mental illness known to humankind in them –ready to interfere-and the overwhelming probability of harm–is to me everything that’s wrong about the act that I call a crime– because common sense says, I can adversely be effected in 3000 different ways– why would I want that– take that type of risk– if their is a non-coercive and natural alternative–and why would anyone want to inject three thousand adverse effects into me–well ill tell you– its because they’re idiots and tyrants of the highest order– they cant waylay drug induced thinking because they don’t know what it is- have never experienced it– their straight(sheltered middle to upper class academics) and (quite plastic because of it)–( the last people to look after the attitudinal – been there done that knock about– who has knocked about a bit usually– been in the gutter for a splash ) their like aliens from another planet sitting in judgement on humanity–and poisoning those they think don’t fit the mould– but with the very conditions they’re suffering– easy to understand if you don’t know what your doing–or your plastic–sheltered- or you’ve decided like someone did a long time ago– that fighting fire with fire is the best you as an individual can do– because you cant connect with gutter people– so that’s what we end up with fools–fighting fire with fire-( a bit like hitting someone on the arm to take the focus off the leg– with a bit of funeral in it)-because they’re basically fools with no communication skills–and that’s a fact—ive met dozens and if they had a communication brain/skill between them I must have missed it–I was at home one Friday- late afternoon- when I got a call from one– hello– hello– im just ringing about so and so– oh yeah–what’s going on– yes yes, oh yeah-mind you i couldn’t hardly hear, or understand the language, and had to keep asking him to say again- i said– but what about this — silence– but what about that–silence– thirty to fourty questions, — still silence–mind you giving him at least 20 seconds between questions– In the end–1/2 an hour later later–I said listen mate –maybe ring me when you can talk–or are willing to answer me– if now’s not a good time– OK — ive got to get going now– so just an example of the communication skills– ive never met one different–not only that, they’re all from other countries and cant even speak or understand the language- or the nuances or local lingo– let alone be able to identify and relate– so alienated by an alien–alienated by a language-alienated by culture and class-alienated by the silence -alienated by a look- alienated by a poison-alienated by a finger pointing tag- and alienated in the world because of it all- anyway — that’s what im taking them to court for– the 3000 adverse side effects they’re forcing into my loved one– nothing else–simple and common sense wrong–“for some”–that they(psychiatry) admit to–and the fact, that that’s the reported complaint and crime — in a common sense value– they then must in common sense and decency– be ordered to slowly and carefully withdraw the 3000 mental illnesses in the forced adverse drugs-poisons– no where to go with that– a facts a fact–3000 of them–a probability/or potential fact is the same as the fact that comes from the reported adversity– its “is”– so its left probability and potential– to reality– the reported factual adversity– is real- because its matches all other reports of adversity– that these tyrants agree happens “to some”.. full stop–cant have it both ways– anyway how am I going to go? This is the report on the adverse effects–http://psychroachesadverseevent.blogspot.com.au/2009/03/zyprexa-adverse-reactions.html——————— you see to me if the judge and they want to make it about something else–then they’l both be dodgy together– and even if we lose in the court– we win in our hearts– so I don’t care how the court case goes– because we all know evil reigns in psychiatry and governments- as long as the people sitting on it are shown up for who they are in their decision– that might just have to do for now. Like one judge said when we took the external treating team– the CTO people- to court for calling my loved one derogatory — defamatory-names– which blew the court out, because no one had ever tried it before– anyway we both filled out statements– and then went before a judge–what the judge said was brilliant– the Judge was an older lovely lady–who listened and empathised- in the end she said –I agree with all of what you’ve both said– but- I’m sorry– ” I cant legislate decency” etc etc–anyway that was good enough–especially for my loved one–its funny though, because I asked for a copy of our statements and the judges statements–the clerk said shed post them to me–when i rang to find out where they are- they it never happened– they’ve got no record–anyway — it might have been a mock trial– or ordered to disappear by an authority- doesn’t matter– the main thing about it was DECENCY– and the fact that, in that, my loved one had some hope- belief and trust restored– by a decent human being. with authority. So a victory in the heart, where the truth resides–and a mind–where thinking resides– is still a victory.