The Case of the Missing Schizophrenia

Laysha Ostrow, PhD
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Included in the National Institute of Mental Health’s (NIMH) Outreach Partnership Update on October 1, 2014 was an FOA (funding opportunity announcement) on “Self-Management for Health in Chronic Conditions.” This funding opportunity references a 2012 Institute of Medicine (IOM) report “Living Well with Chronic Illness: A Call for Public Health Action.

I remember this report well because peer support was discussed several times and I was working on my dissertation. The report identified certain chronic conditions in its recommendations:

“The committee does not recommend a specific set of illnesses on which to focus public health action. Instead, it identifies nine “exemplar” conditions that are diverse yet have various factors in common, including significant effects on the nation’s health and economy. These are arthritis, cancer survivorship, chronic pain, dementiadepression, type 2 diabetes, posttraumatic disabling conditions, schizophrenia, and vision and hearing loss.”

NIMH Backs Down From Leading NIH Research on Mental Disorders

Something wasn’t quite right about the National Institute of Health (NIH) FOA. Upon closer examination, the NIH listed these conditions as identified by the IOM in its report:

“arthritis, cancer survivorship, chronic pain, dementiadepression, diabetes, posttraumatic disabling conditions, and vision and hearing loss.”

In the IOM’s list of “exemplars,” there are nine conditions listed. In the NIH’s version, there are eight. Of the nine IOM conditions used as examples, four of the nine could be called specifically “mental health”-related (dementia, depression, posttraumatic disabling conditions, and schizophrenia). In the NIH’s version, three of eight are mental health-specific (dementia, depression, and posttraumatic disabling conditions). I was immediately on the case of “the missing schizophrenia.”

Upon even further inspection, I realized that the NIMH was not one of the institutes sponsoring the FOA on self-management–despite 4/9 (or even 3/8) of the conditions being mental health conditions. This was starting to look like some conspiracy where the NIMH doesn’t believe in self-management of anything, and the NIH can’t even think about schizophrenia as a self-manageable condition without guidance from its Institute of mental health.

Self-help and Congress

Peer support is inherently a self-help intervention; many more specific peer support interventions (e.g. Wellness Recovery Action Planning [WRAP]) are about managing one’s own life and affairs–even in a state of crisis (WRAP includes a specific “crisis planning” section, and is being used in peer support groups for suicide prevention such as the Hope Group in San Francisco).

Popular political debate right now (in the U.S. Congress and in counties in California) is around the inability of people with “serious” mental disorders such as schizophrenia to self-manage, to self-determine. What is in reality a lack of resources for voluntary community-based supports is framed as a need for forced medication against one’s own will.

I believe one of the greatest injustices a society can commit is to make certain members doubt their own reality, and then make them prisoners in their own minds.

I’ve been there. I was given a legal order for anti-psychotics, and my mind was so dulled by a combination of mood stabilizer and antipsychotics already that I thought I was stupid. Doctors told me that with an increasing number of manic episodes, my brain would deteriorate into more and worse episodes. So at the age of 17, I thought my brain broke itself and this was my fate: a memory so poor I couldn’t even remember my favorite lines from Shakespeare, an inability to write and create which was always my best talent, a sense of dullness and fog that wasn’t sadness but never lifted.

“Strategic” Planning by Politics

Later last week, after reviewing this funding opportunity that should have included a near majority of mental health problems where one was conspicuously omitted and the grants not sponsored by the National Institute of Mental Health, I received a draft of the NIMH’s Strategic Plan–the guiding document for the agency’s funding priorities.

In previous years, the share of NIMH funding and attention that goes to the Division of Services and Intervention Research (DSIR) has been smaller than others. In 2013 I wrote: “The FY 2012 budget justification shows that services and intervention research were allocated a third of the amount of money given for basic neuroscience and genetics research” [not published due to fear for my career at the time].

The new plan was even more shocking: services and intervention research seem to require a biological component (biomarkers). The context around this suggested that statistics are based on population averages and we aren’t so good at getting people the evidence-based psychosocial practices that already exist even when the statistics suggest they would work for a lot of people.

It is a terrifying kind of populism that leads to public support of these kinds of policies. You remind Americans that they don’t understand science or policy; then you tell them even the scientists and policy-makers [the “elite”] don’t know! Americans do not favor intellectual ideas they don’t understand, nor are we a people that need “stinkin’ experts” making decisions for us.

But stinkin’ “experts” making decisions is exactly what happens in situations like this.

I was quite thrilled to have participated in electing President Obama in 2008. He is very smart, and that was a nice change for me. There was something refreshing about the media saying he needed to be “careful” about not seeming too smart, but knowing he was going to get [re-]elected anyway. What a victory for the intellectuals of America!

It is very important to recognize that elected officials are not — and cannot be — experts in the content of every policy area. They need to be good at recognizing expertise and making decisions based on others’ recommendations. A democracy this size is too big to be run any other way. I did not expect Obama to be an expert in mental health or mental disorder, but I certainly did not see the BRAIN Initiative — with a runaway train trailing it — coming either, with a trail of celebrities and corporate interests driving it.

NIMH Apologies to Dying Youth

Later in the week I got the Director’s Blog called “Atonement” and a research update stating:

Notably, treatment with antipsychotic medication, even after brief exposure (participants’ average exposure was 47 days), was associated with an increased risk of metabolic syndrome, which is a major risk for future cardiovascular illness.

The average age in the study was 24 years old.

The Director’s blog post is called “Atonement” because “Mental Illness Awareness Week” this year started on Yom Kippur. For those who are not practicing or knowledgeable about Judaism, Yom Kippur comes ten days after the New Year (Rosh Hashanah). Those ten days are the “Ten Days of Awe.” During those days, you are to ask for forgiveness for your wrongdoings from the people you have wronged. You ask three times, and if the person refuses to forgive you, you are then permitted to ask for God’s forgiveness on Yom Kippur so that your fate is sealed for the coming year.

One reason I have never fulfilled this practice even though I make a list of apologies every year is because to me true atonement cannot include rationalization or explanations. As someone who thinks about things, I explain my own behavior to myself, and as a very honest and direct person, can’t help but share this “insight.” But true atonement is pure sorrow and real love with no excuses.

Science needs rationalization, explanation, justification, and replication. Good thinking is a necessary component of good science.

The blog post by the Director argued that, most of all in mental health, we need “humility” – there are things we don’t understand, and there are things we understand but don’t or can’t yet do. The lynchpin of the blog post (to me) is the statement: “Translation takes time.”

Who by various slow decay by metabolic syndrome?
Who by barbiturates and non-barbiturate antipsychotics?
Who in these realms of love that are “stronger than financial interests” –Rep. Tim Murphy (R-PA)
Who by accident including suicide? Who by his own hand?
Who in solitude and social isolation and poverty?
Who for his greed?
Who in power?
Who shall I say is calling?

(Adapted lyrics from Leonard Cohen’s “Who By Fire?”)

Who in Power Should I Say “Is Calling?”

The “Atonement” post is interesting in juxtaposition to my above interpretation of the Strategic Plan because it implies that scientists (experts) know something but are still working on letting the rest of the population in on the benefit. I have to say that I have sat next to Director Dr. Tom Insel and heard him tell people “we are not endorsing drugs in the water.”

Everyone interested in America’s attitude toward Communism recognizes this as a pointed “joke.” But no decision in a democracy is up to one person, certainly not at that level of the government.

But you look around over the past decade in particular — a time where many terrifying things have happened in American society which I believe have actually lead to public consciousness-raising as an “unintended consequence” — and wonder: “If the experts are not making decisions, who is?”

I hear a lot of anger by academics and advocates about the direction of the NIMH toward purely basic science and neuro and genetics research. I admit I tend towards optimism and naiveté just to keep hoping things will be better for everyone—or at least stay open to alternate hypotheses and evidence. Personally, I wonder if that’s a bit misguided to identify an agency like NIMH as any kind of “enemy” and start wondering who for his greed and power is calling them?

What Next?

I know that there are comrades and colleagues that see this inter-tangling of curious interests and statements and think about the broader implications for society. The root of the causes have so much power and greed behind them that most people can only bear to see the immediate—a federal agency in the Executive Branch, the “Psychiatric Industrial Complex” (i.e. American Psychiatric Association and its membership), a single Congressman, or any other pawn in the game. I don’t see fear of speaking out as about fear of one’s own career anymore; it is simply the inertia that overtakes people when they realize the enormity of the issues.

I promise you that speaking up can never be worse than having metabolic syndrome at 24 years old just because you wanted some help. 

* * * * *

See this post also on the Live & Learn website. 

16 COMMENTS

  1. Thank you Laysha for this very powerful article. Weaving your revealing analysis of the multi-layered political forces at work that are destroying almost any confidence in the NIH and NIMH, with your understated pain about what you were subjected to by the “systems,” is both very moving and is a call to renewed activism.

    Thank you too for describing yourself in your bio as having lived experience in the psychiatric, family court, special education and disability systems. It’s a needed reminder of how there is a comprehensive Kafkaesque world that closes around people both young and old to hold them in a net of control, if they deviate from arbitrary social norms. But what kind of a society is at work here, when as you say, from the president on down, we who deviate are subjected to the full weight of a monolithic rejection of who we are in our full humanity for a truncated version defined by so-called experts.

  2. The more people like you are willing to speak up, the more I dare hope that stories like yours will eventually be heard by my beautiful, 25 year old daughter. Knowledge combined with discretion and confidence in herself will hopefully restore her wellness and break the spell that her diagnosis and toxic treatment has cast on her for the last five years. She is currently in that fog caused by years of being institutionalized with older clients and forced, by court order, to take a cocktail of anti psychotics and mood stabilizers.

    Every time she experiences a crisis and is re hospitalized (and put on ever higher doses of medications and given ever more messages of doom and gloom like “you have a broken brain” or “You are genetically flawed’, etc. ) the staff claim that she is getting better, presumably because, as her spirit erodes, she becomes more compliant. This is very convenient for the small army of people who are paid to keep her ‘safe’ because she won’t run away or escape to the streets. What worries me more than the thought of her being on the streets, is the thought that she may permanently forget that she ever dreamed of a drug free life style with healthy relationships (with people who are not paid to babysit her) and a meaningful vocation besides waiting for a disability check.

    She was always a straight A student. in this cognitively impaired fog however, she is unable to read the simple of books to gain insight such as stories of people who recovered from severe trauma or books that would give her useful knowledge on how to safely experience extreme states, practice mindfulness, or legally negotiate for her rights in a coercive and abusive mental health system.

    Keep writing and organizing. Sooner or later, our children will wake up out this fog but they will need a network of safe houses and sanctuaries to go to in order to recover from the trauma that is being inflicted on them by a callous psychiatric industrial complex.

    • Thank you for sharing your story. When I was 25 my father asked me what my “vision” was (having not finished college and being on SSDI), and every time I’ve felt like giving up he has reminded me of that conversation or I have reminded myself. It’s frightening to me that Rep. Murphy frames his policy proposals as “love” when speaking to parents, because if mothers’ love was enough to fix these problems (wherever they originate), mothers and lovers would be running the world and we wouldn’t be in these predicaments. Simultaneously, the NIMH promises that in 30 years they’ll have an answer for us. You can’t wait 30 years — I assume you want help for your daughter immediately if not sooner. Twenty years ago my mother couldn’t wait 30 years and she had to do the best she could with available resources/services. Were they supposed to put me in holding pattern until I’m on Medicare (20 years ago + 30 years from now until there’s some magic that emerges from research and public policy)?

  3. Laysha, this is so haunting and rings so true to me. I took my journey of disability, healing, and transformation in San Francisco. For me, a new paradigm and perspective made the old one obsolete, at least in my own personal world.

    I had to move to a small rural town, filled with nature, space, and peace, in order to retrieve my soul once again, and find my clarity, balance, and grounding. It was absolutely impossible there. Not just for me, but for my partner, as well. Once I was done with my nightmare of an experience releasing meds and traversing the mental health system and related social services, he actually got a job in social services and worked as a case manager for a few years. Finally, he was clued into my reality and saw what had been happening with me all those years. He saw how the system was set up, the way I had experience it, that there is really, no choice in the matter if one is to survive, and even that can be dubitable. Between us both, we got the full picture, and saw that it was an impossible situation.

    So after doing all we could to create change–I did public speaking about all of this, and as well made a film from inside systemic professional ‘advocacy’–we continued to run into wall after wall and wall, and we did, indeed, feel the enormity of these issues. People kept saying, “It’s complicated,” but I wasn’t as confused as they were. I saw it purely as a lack of regard for humanity–mainly because those in power not only held on for dear life, but they also would ruthlessly stomp on the clinging fingers of anyone trying to climb on the ledge for support. I saw no consciousness, compassion, or competence at work in these social and political systems. It is truly a disaster of the highest magnitude, in every respect, and everyone is blindly backing each other up, for political reasons. The system is closed unto itself.

    That’s what I discovered after a 17-year journey in the mental health world, starting as grad student and ending as advocate. All power and greed, sucking energy for survival and justification, like an institutional vampire. It was truly overwhelming to experience and witness, and my biggest awakening.

    Transitioning out of that world was rough, due to the profound stigma that is epidemic there. That’s the weapon used. It was like de-programming from a cult, and the system was hostile to me in protest of my independent mind at work. Independent thinking is one of the powerful sign of healing, and they HATED it! They made that very clear, repeatedly.

    That’s where I woke up. Been speaking out ever since, every chance I get, to help others awaken so that they can find their path to freedom. I believe once we wake up, that path unfolds. I know it is there for everyone. It’s just that a negative frame of mind hinders our ability to see this. Wisdom, purpose, desire, and vision are found in our hearts, not in our intellect, and certainly, they cannot be dictated by anyone outside of ourselves, that’s just plain ridiculous to even consider.

    “I believe one of the greatest injustices a society can commit is to make certain members doubt their own reality, and then make them prisoners in their own minds.”

    I believe you nailed it, here. This is where we are. That’s called ‘a cult.’ Time to de-program, and meet truth, freedom, and inner peace.

  4. Laysha: Alex is right; you nailed it with “I believe one of the greatest injustices a society can commit is to make certain members doubt their own reality, and then make them prisoners in their own minds.”

    Ron Unger recently gave a workshop entitled CBC for Psychosis in Eugene, Oregon and some of my friends attended. The workshop discussed the principle of normalizing a person’s experience as an avenue to recovery.

    I think that parent’s can be a big help in normalizing their children’s experiences in the mental health system first, by refusing to engage in doctor worship and secondly, by entertaining the possibility that their children have experienced at least one, if not multiple instances, iatrogenic harm due to inappropriate use of force.

    I think that the standard of care for individuals in extreme states is for the most part, wicked. When an individual most needs our compassion and support, instead, they are more likely to receive terrifying restraints, isolation, and forced injections that cause them to drool and piss on themselves. Often the side effects of the drugs are misinterpreted as signs of a ‘disease’ that is the basis for even more harmful drugging.

    Wicked is a strong word to use when people are coming from a place of good intentions such as the majority of mental health care workers but I think we have to start using stronger moral standards when measuring the value of involuntary hospitalization and forced drugging, when evaluating the harm that results, and when estimating the variety of supports that people need to recover from psychiatric harm and abuse.

    On the other hand, doctor can be allies in individual situations. Don’t let either the anti drug hysteria of the MIA community or the NAMI reductionists cloud one’s judgement. Every situation is unique. The best way to get off harmful medications is through the selective use of medications to ease the withdrawal symptoms. The only way to obtain the right to take selective medications is through a prescriber. Period.

    Parents can help support their children by refusing to adopt this ridiculous notion of anosognosia, as if having one or more psychotic episodes permanently destroys one’s ability to make good judgements and decisions. Everyone, at one time or another suffers from ‘lack of insight’ including parents, doctors, and patients. To use anosognosia as the basis for taking away a person’s liberties and personal agency is a very grave matter, not one to be taken lightly. On the other hand, although my experiences with my daughter’s psychiatrists has been negative for the most part, I do not rule out the possibility of her finding a compassionate, smart psychiatrist who will be her ally and help her make a full recovery.

    When my daughter exercises bad judgement, I may chalk it up to impulsivity or youth but never anosognosia. Give me a break. When did we parents start giving Treatment Advocacy Center and a the junk science that conventional psychiatry is based on, a free pass to take away our children’s liberties? This brainwashing didn’t happen overnight.

    I charge NAMI with decades of brainwashing parents so that wicked practices of coercive psychiatry could be carried out with impunity. The lion’s share of this harmful brainwashing has been carried out by NAMI. NAMI has a lot to answer for in the decades to come.

    Laysha, I think you also raised a good point about the new funding from the Brain Initiative. If the moral justification for involuntary drugging is rolled into involuntary brain surgery, implants, etc. I think we will have the same problems but under different circumstances.

    We have to take a stand on the unfounded concept of anosognosia. This is arguably the biggest lie of the junk science that psychiatry is founded on. Without that lie, all the other lies begin to crumble.

    • The point I want to emphasize is that while individual experiences are important, science policy has population-level real-world effects, no matter how obscure it seems. There are always tradeoffs in any kind of policy-making, but extremist points of view are unlikely to benefit most of the population because they are…extreme. Moderate policy-making (for science and practice) should distribute benefits around the population average.

      • Seems to me as though this only repeats the pattern of marginalization, by blowing off the extremes. More and more people are discovering for themselves that they don’t fit into any median, which would seem authentic and realistic to me.

        I strongly feel that being ‘extreme’ is called for under the circumstances, since what we are calling for is radical change, not just a little shift. “The population average” to me continues to speak of ‘status quo.’ I think in the case of these issues regarding what is going on in the “mental health” world and all of its myriad tangents, the extreme position has a very good possibility of holding truth. Average is just, well, average–as in ‘mediocre.’

        • Come to think of it, to my mind, any true blue and authentic human rights movement will value the extremes as indicators of the truth. Extreme positions are born from having been grossly neglected, marginalized and stigmatized–that is, spirit-wounded. This calls for extreme change, because NO ONE should have to experience this. And if they have to, certainly not because we have decided who is extreme and who is not. That’s playing God, to my mind.

          People-pleasing–which to me is the inherent core of ‘politics’–as opposed to speaking and embodying our authentic truth, is what keeps things average and status quo, perhaps with an illusion of change here and there, but more and more we are seeing through all of this façade.

          The only way I was able to heal fully and recover all of myself was to take extreme measures, in every respect. Just my personal experience, but I value it highly.

        • Alex:

          I think you have a good point that being extreme is called for. Pragmatically, in movements for social justice, extremism (defined as no compromise on a particular issue) is a useful to shift the terms of the debate (drag the status quo to a different center). The degree of influence by big Pharma is colossal. The influence has seeped into every realm of our culture and corrupted science, and public policy. In the face of such overwhelming odds, extremism certainly seems warranted

          In reality, the compromises have already been made. We parents have been duped from the get go about the risks of medications. Many of us were not told the full story about long term harm by neuroleptics on our children. Our children’s brain chemistry has been changed and there is no compensation of justice in sight There are no AA type support systems in place for individuals who wish to safely withdraw from psychiatric drugs. The addictive nature of psychiatric drugs is not honestly debated or researched.

          Many of us with children who are stuck in the vicious cycle of coercive psychiatry are heart broken because we can’t turn back time and undo the damage. We want to organize for change and create safe sanctuaries for our children even in the absence of any funding resources from the state. The enormity of this task is at loggerheads with the task of simply surviving day to day with heartbreak.

          The personal and political are very different. Many of the contributors to the MIA community identify with having been harmed by conventional psychiatric treatment. Their willingness to be leaders and agents of change by sharing their stories gives hope to those of us parents who envision a full and meaningful life for our children who are at the beginning of a long journey home after having been diagnosed, stigmatized, and harmed by psychiatry.

          But stories from MIA contributors , while providing hope, do not offer the tools and resources that families need to simply survive the day to day horrors when a loved one is trapped in the mental health system and is a victim of psychiatric harm, abuse, or neglect.

          Just surviving day is a political statement. The MIA contributors always focus on the harm by psychiatry but my family is already aware of the harmful nature of psychiatry. Hearing constantly about harmful psychiatry doesn’t help us get through the day to day nightmare of having a loved one who is being harmed on a daily basis.

          Speaking out can make the nightmare worse. I know from experience. Sometimes the only way to get through the nightmare is to pretend to go along and wait for a chance to escape through stealth. I had a peer counselor at a state hospital state this principle very clearly: “Sometimes you have to just pretend that you identify with having a disease and pretend to be grateful for your treatment” in order for one to be declared not a danger to yourself or others.

          For mutual support, to simply get through the day MIA is not the place where a parent in distress wants to get their information because MIA is overly weighted towards the scary and harmful and devoid of practical solutions. This is why I call it hysteria. Because it incites panic and does not unite us in a common goal of of reducing harm, protecting our children, changing policy, etc.

          There is only one functioning Soteria House in the US, woefully inadequate for the number of people that would opt to live in a place where their right to live a med free lifestyle is honored.

          The MIA community can incite as much fear and anxiety as it can incite hope. For those whose brains have been deeply damaged from years of forced drugging, there needs to be a pragmatic ‘safety zone’, a moderate middle ground (not NAMI which refuses to acknowledge the existence of iatrogenic harm) where people can share and converse and trade practical trips for getting through the day.

          This is the conundrum we face as a movement: the need to organize and unite the millions of individuals who have been diagnosed with a mental health disorder or those individuals who have one or more loved ones who have been diagnosed. The need to organize for change is enormous, because clearly the US is not the country one wants to be living in if one has been diagnosed with a mental health disorder simply based on the dismal outcomes. The research shows that.

          Many have been deeply harmed and their voices need to be heard. But there is also a need for mutual support and this objective is often at loggerheads with the need to create forums for educating and uniting voices for change

          • That’s a beautifully heartfelt and eloquent statement, madmom. Thanks for your truth. A couple of things that occur to me as I read your comment:

            First, I think the fact that each of us, and also as a collective, are addressing such multiple tiers of this journey or process influences how we receive the posts. Some people need their experiences validated, that was one way MIA helped me, to read that it was just not me, as I had been wondering. Also, to share insights about WHY this crap is happening, for the purpose of making change. When we find the root of an issue, we can make healthy changes there.

            But I agree, that solutions and resolutions are things we crave, as examples of success in making radical changes. That’s why I share my story. I did what so many said was impossible. Haha, fooled ‘em all! Radical changes are, indeed, possible, but it takes a lot of flexibility to have our beliefs challenged. That’s the only way to bring in a new paradigm. Creating radical change in the world means that we have to shift radically how we perceive reality. It cannot be about the past, only the present, as a gateway to the future. Imagine how sticky that gets in the mental health world!

            There are general social issues and there are specific individual issues. There are also issues of what is considered ‘sound healing,’ and also issues of what is fair and just. Overall, we’re asking to know what would be most effective in bringing about the radical change which we seek. Just how do we do this, so suffering can begin to dissipate. That’s what I have yet to see happen, as suffering only seems to be getting worse, on a global scale. To me, that’s the first order of business.

            So I really honor your perspective as a parent. My perspective is from one who had accepted a diagnoses and drugs, and who later realized that this was a terrible mistake, that I had, indeed, compromised already, just as you say; and also, that this perspective just doesn’t work, and as we all know, only serves to make things worse. So what do we do? How do we change this?

            That leads me to the second thing. From what you say, it seems reasonable to listen to the many, many of us who went through this, and then who overcame it, systematically. That’s my story, and the story of so many others. The trouble is getting people to listen, and then to actually engage. I try, and some have heard. But there’s a lot of resistance to listening out there, we’ve all experienced that.

            I agree, we know the damage done, and we have heard thousands upon thousands of stories, and a lot of good calling out about what is really going on behind the curtain. I think we know the truth, now.

            I think the first ingredient to change is to find hope, someway, somehow. My experience, when I was deep in the dark trenches, unable to see any light at all, was that when someone told me that there was a new of seeing all what I was experiencing and that it was available for me to learn and practice, that gave me my first glimmer of hope when I felt all had been lost, because everyone around me was hopeless for me. They did not know this other perspective, and they assumed they knew everything there was to know, of course. Zero creativity in thinking. Not exactly the support I would seek intentionally, but I learned to discern.

            I also learned that this is the most damaging and harmful message we can give anyone, that there is no hope. That feeling of hope, even the slightest, when it was offered to me finally, relaxed me enough to feel the feeling of hopefulness in my body, which opened my heart a bit, and that changed my moment by moment, day by day perspective. I guess you can say ‘the clouds parted,’ at least a bit. Eventually, the sky cleared up entirely, but that took focus and practice.

            So to anyone who feels hopeless, I would say, first, find a good source which inspires hope. That will vary from person to person, but the feeling is the same, it relaxes us. Own that, feel it, and see where your process takes you next. That’s actually a whole shift in perspective, and that changes how we feel in the present. There’s a lot more to shifting perspective and paradigm, but it’s got to start with hope, or one really can’t see the forest for the trees. (Pardon all the metaphors, but it’s just what is occurring to me in the moment!). When we embody hope, we see things had not seen before. It’s like turning on a light. The rest is to be discovered as you go along. Most important thing from my perspective is to keep hope alive.

          • I realized that in my philosophizing about hope, which, indeed, you did mention, that I directly neglected the fact that you had said that on the most practical level, you are wanting tools. Sorry about that. This is a tricky area, because I think tools are so personal to our specific perspectives, which vary quite a bit. Still, I have some to offer.

            Main tool I learned while doing all of this was GROUNDING. By far the most important tool in my box. Being grounded is vital for any kind of change or coherent manifestation to occur. Otherwise, we simply create chaos.

            There are many others, in different paradigms of thought. You can email me privately if you want, I have a lot of tools at my disposal from which you can pick and choose, that are practical on a day to day basis. Always happy to share. Here’s the contact page from my website:

            http://www.embodycalm.com/Contact.html

            I guess the main point I want to get across here is that it became a matter of needing to be extremely creative, identify where the edges of all my boxes were, and then go beyond them. Takes trust, and overcoming fear of the unknown, but that’s the only way out I know.

  5. The piece that hooked me in this article was the need for Atonement. I am a spiritual practitioner (I identify as Integral Christian) and I practice the Rosh Hashanah ritual. This year that practice included the 12 biblical myths of tears. My spiritual teacher, Marc Gafni, writes: “In the vision of Rosh Hashanah, God is as concerned with the evolution of our tears as with the rightness of our actions. Indeed, the former shapes the latter. At this level of Rosh Hashanah consciousness, we seek to learn the language of our tears. Tears emerge as the major currency of evolution in the deepening and transformation sought on Rosh Hashanah. At this level of consciousness, the human being is called not only to right action derived from obedience to the Divine will but to right action that emerges from the depth of one’s newly realized Divine center. And this Divine center is realized when one becomes a Master of Tears. These two levels of understanding Rosh Hashanah are not in discord. Rather they dance and deepen into each other in an ascending melody of realization.”

    So, I wondered what any of this hook of atonement had to do with the missing schizophrenia. In the biblical myth there is this horrific story of the Binding of Isaac. Read simply it is the story of God asking Abraham to sacrifice his son Isaac on the mountain as a sign of his absolute commitment to God. There are four characters in this story: Abraham, Sarah (his wife), Isaac, and God. Abraham hears God tell him to sacrifice Isaac and so he and Isaac climb the mountain, Abraham binds Isaac with a rope and raises his knife to kill him. Abraham hears God speak, offering a ram as a substitute for Isaac. Abraham releases Isaac and kills the ram instead. No tears. No one cries. Abraham does not cry. Isaac does not cry. Sarah starts to cry but drops dead before she can complete her crying. No tears. No schizophrenia.

    At a deeper level of consciousness, the practice of Rosh Hashanah is the practice of at-one-ment. This is the level of non-duality. The great spiritual experiment of Abraham is to learn to disambiguate the voice of God. In the deeper reading, Abraham’s shadow is the first voice of God that demands the sacrifice of Isaac. And when Abraham learns to disambiguate the voice of God from the shadow, there is at-one-ment. This is the place of Eros. God in the first person. This is the place of ultimate realization. Not only is Abraham (and I am also) in conversation with the Divine, not only are we in relationship, but on a deeper plane of reality, I AM. Here, I realize my ultimate identity with the ground of all being, with the All, with God. The only true solution to your identity crisis is to realize your identity with All-is-One.

    It seems that this practice to disambiguate the voice of God is one that might be helpful for the psychiatric system to engage on a daily basis. If I am at-one-ment with the person I have bound for sacrifice to the system, I will see other options. My eyes will fill with unshed tears and my perception will clear.

  6. madmom,

    I just want to say I am so, so sorry for what is happening to your family and I agree that the biggest help for our children is any work that can be done to promote safe and healing alternatives to forced treatment- through trying to create Soteria type homes, and by speaking out against coersive treatment – Surely with the current state of controversial research about psychiatric medications, arguments could be made that for a person in an extreme state, at least the person’s family or community advocate would have to agree with the medical team before treatment could be forced. I know that wouldn’t be ideal but at least would give people more of a chance to provide safe environments without using harming medications