Holistic Recovery from Schizophrenia

It was amazingly simple, a stroke of brilliance, really. No twelve step program needed. I should have known earlier how to do it, since I had used the same technique to magically eradicate Chris’s so-called schizophrenia and to lose the “baby fat” that I was still carrying around in my late twenties. I’m sure you’ve already guessed what I’m about to say. All I did was to stop feeling worried and guilty. Magic. An overnight cure! I wasn’t drinking any less, I was merely feeling not at all guilty — in fact, I was feeling quite enthusiastic —about what I was drinking. Sure, I still over-indulge on occasion, but I am no longer berating myself while pouring red wine into increasingly smaller beakers and trying to pretend that I can stretch one unit of alcohol to last all evening!  Tried that – it was a constant reminder that I thought I had a problem. Luckily I live in a culture that values the grape. School events that I attended on behalf of my children always served beer and wine, although they may have put a stop to that now. Church dinners are always B.Y.O.B. Gas stations often come equipped with bars (I swear I’m not making this up!) There seems to be no cultural guilt trip here about the merits of drinking.

Perhaps I am suffering from agnosognia, the inability to recognize that I’ve got problems – but hey – so what? I’m enjoying myself these days. I enjoy myself by refusing to read medical news. It’s all so contradictory, anyway, and I’m a bit of a hypochondriac. Take coffee for example. My boss gleefully informed me the other day that research now shows that three cups of coffee a day adds to longevity. His coffee addiction (three cups)  is obviously no longer a problem to him. Presto chango.

If the DSM-5 expansion of the criteria for addiction takes hold, there is a simple solution, the same as there is for “schizophrenia.” Don’t consider your addiction a problem, because you can waste much time and valuable creative resources not really fixing the problem, just making yourself feel the worse for it.

Have a good week-end!

Here are some random thoughts of mine on mis-diagnosis.  I haven’t got the time to refine my thinking and tweak this post in time for my self-imposed deadline. I’ll look at this tomorrow in the sober light of day and make any needed adjustments.

The APA convention and the Occupy the APA demonstration against the DSM-5 have set many groups like the ISEPP (International Society for Ethical Psychology and Psychiatry) to try to come to grips with what is meant by being diagnosed and by being mis-diagnosed. Most of us are struggling to put into words why we think the initial diagnosis is a sham, and what exactly mis-diagnosis implies.

Here’s my take on this. Bear with me. First, let’s consult our common understanding on words and their opposites.

management         mismanagement
treat                      mistreat
handle                   mishandle
place                     misplace

We know that the second word in each column is the botching of the first. If you are mistreated, this means you are not well treated, and if something is mismanaged, it is not well managed.

Many English words beginning with “mis” mean that the original root word has been negated, or mishandled, mistaken, misled, etc.

So, what does this mean for diagnosis and mis-diagnosis?

I believe that my son was correctly diagnosed by the DSM as “schizophrenic.” I also believe that he was mis-diagnosed. When I say mis-diagnosed, I don’t mean that the diagnosis was wrong (he ticked most of the boxes for whatever it is that schizophrenia is supposed to be) – but I believe that the diagnosis was mismanaged, mistreated and mishandled, and I certainly was “misled.”

Once you are diagnosed by psychiatry, then this diagnosis should properly managed, treated, and handled if it is a valid diagnosis to begin with. If you are diagnosed with herpes, for example, the patient should expect proper follow-through, meaning proper care, treatment and cure. If you truly had herpes and you were well treated, your symptoms should clear up.

What does my interpretation say about psychiatric diagnosis? If you are correctly diagnosed, and correctly treated by psychiatry, then your symptoms should disappear. But they generally don’t, do they, under the care of maintream psychiatry?

Mainstream psychiatry will rarely if not ever, admit to a misdiagnosis, because that would imply that they couldn’t manage, treat, or handle, the diagnosis.

Therefore, most of the psychiatrically diagnosed who are still struggling with the label, have been mis-diagnosed,  in the spirit of being mistreated, mishandled, mismanaged, etc.

“I’ve got a bus load of schizophrenics that I’ve driven down from New York to demonstrate against the psychiatrists,” the middle aged lady hollered across the room to the owner of the diner. No doubt she was relishing the thought that she lived to tale the tale. Ian and I ignored her while we continued to eat our breakfast of fried eggs and coffee. 

The diner owner chimed in from behind the cash register. “Yeah, do me a favor and get those occupiers outta here. I’ve had enough of those people, coming down last week ago and disrupting everything. You can take all of those mentally ill people back home with you, the sooner the better!”

“But I was surprised,” mused the driver, “how well behaved that bunch were.”

Ian and I paid our bill then went next door to the Quaker Meeting House in Philadelphia to wait for the presentations to begin. If I ever had any illusions that Occupying the APA in Philadelphia was going to resonate with the common man, woman, well, obviously there’s still lots of work to be done. One of the themes of the MindFreedom campaign in Philadelphia was to point out how destructive labels are to people. We need look no further than the bus driver and the diner guy as ample proof that labeling is alive and well, particularly when it comes to schizophrenia and schizophrenics. The common man thinks Psycho and Norman Bates and wouldn’t have it any other way. We all like a good scare. Hollywood needs the occasional schizophrenic to fatten its bottom line,  just like the American Psychiatric Association needs the myth of uncurable schizophrenia to do the same to its.

The only encouraging part of the APA approving the DSM-5 this week was Dr. Allen Frances’ call for the fox to stop running the chicken coop – meaning there should be fewer psychiatrists on the DSM revision panel and more “supposedly” (my word, not his) neutral parties like the NIMH and the World Health Organization with a greater say in its revision. Don’t expect any changes for now for the schizophrenia label – it’s too big a revenue source and a great way to scare patients and relatives into submission to psychiatry. Psychiatry doesn’t want to cure schizophrenia, it merely wants an orderly bus.

Parents, if you are searching today for help for your son or daughter, it is worth your while to read what Sky Blue Sight has to say about how to treat the mentally ill. Sky Blue speaks from the experience of someone once labelled “schizophrenic.”

How Not to Cure Schizophrenia

The title of this post applies to most of those mental illnesses that have been classified and labeled as incurable brain diseases by the Pharmaceutical dominated contemporary mental health establishment.

How not to treat the mentally ill? Don’t treat them as subhumans or objects. Stop thinking of ‘treatment’ as ‘control’. Don’t try to treat only the secondary (‘positive’) symptoms and ignore the consciousness, the personality structure and emotional functioning of human beings.

How to treat them? First allow them to be ill as much as possible (ie do not stop the human process) while at the same time facilitate them to full emotional functioning and guiding them to well being.

This is the point where the psychiatrist control freaks throw up their hands and say that leaves them with nothing. The truth is there are very few human beings that stay out of contact with reality and the environment forever due to mental illness, if any. Roll your shirt-sleeves up, find those contact points and get to work! You’ve all got a long way to go, all you in the contemporary mental health system , a lot of knowledge to catch up on, it’s time to get started on finding out what you can do by listening to those who are there, and who have been there, instead of laboring on what you think you can’t do.

Read the rest of this highly informative article here.

THE STORY…

There’s a revolution going on in mental health and it’s being led by “the patients.” Thousands of people diagnosed with mental illnesses are rejecting standard concepts of illness, treatment and recovery. THAT’S CRAZY is a documentary feature about Eric and 3 others who are on the front lines of this revolt.

Eric, a genetics major, and his father, a doctor living in Madison, Wisconsin never imagined they would challenge the mental health system. But when Eric, diagnosed as schizophrenic, decided to refuse his medications because they made him feel worse, the county issued a set of court orders that allowed police to pick him up and take him to a local hospital to be force medicated. Eric’s decision to refuse involuntary treatment with the help of his family triggers a series of personal, medical and legal battles that are captured by everybody involved as the events take place in real time. Eric’s goal – to try a talking based treatment that has the highest success rate for psychosis in the world. Leading mental health activists and allies such as David Oaks and Robert Whitaker explore the science and the ideas behind the movement that believes people like Eric have a right to a voice and a choice in their treatment. Stylized verite reveals the story – animation by Em Cooper illustrates the inner experience.
WATCH THE FULL TRAILER HERE: http://www.witnessdocfilms.com/

PRODUCER/DIRECTOR Lise Zumwalt has produced, written and edited films for NATIONAL GEOGRAPHIC TELEVISION, PBS, WNET, BBC, NBC, THE HISTORY CHANNEL and the DISCOVERY CHANNEL on series including NATURE, NOVA, WIDE ANGLE, WHO CARES ABOUT GIRLS, AMERICAN INVESTIGATIVE REPORTS & LOCKDOWN and has won 14 awards for her work. Highlights include, SEX WORKERS OR VICTIMS, an investigation into the domestic sex trade of teenage girls with reporter Lisa Ling, (Gracie Award for Outstanding Documentary ML), IN-BETWEEN, innovative segments about the economy from mainstreamers like Nouriel Roubini to outsiders like Rev. Billy Thalen and the Emmy-nominated INSIDE THE SECRET SERVICE. THAT’S CRAZY is Lise’s first feature project. http://www.lisezumwalt.com/

Haven’t posted much lately; haven’t had much to say. So much has already been said by me and others about the experience of psychosis that I wonder if there is any new ground upon which to tread. Which brings me to the front lines: How to deal with the day to day job of recovery.

Chris and I had lunch together today. I have noticed for quite a while now that he is sad and looks traumatized. He rarely smiles. He hesitates a lot, takes him a long time to verbally respond or to physically move. I know this doesn’t sound like recovery, but I think there’s a logic to what he’s going through. “Chris, you’re like an open wound these days,” said I after we had silently munched our way through our respective salads. “You look traumatized. What’s the matter?” After about ten minutes, the story began to trickle out. Not much of a plot, really.

“Everybody else knows what to do, Mom. I haven’t a clue.”

Putting aside my urge to tell him that nobody really is that confident, I congratulated him on accurately perceiving what it takes other people sometimes a lifetime to figure out — the more you know, the more you know how much you don’t know.

On his bad days, Chris walks and talks as if he is sure of nothing. This is progress. When he first embarked on this spiritual journey, he was a brash knight, full of fantasy, with an assurance that psychiatrists label “grandiosity.” This wound has been brought to the surface. This, too, is progress. Chris can articulate. He’s in pain, but it’s no longer invisible.

He’s bored with seeing Dr. Stern. Progress! He says he actually feels more intelligent, and he is aware that his younger self was very confused. Progress! He feels that he is benefiting from transcendental meditation. Hooray!

Numerologically, this is Chris’s year of hard work. He has just finished a gruelling week-end of performing in H.M.S. Pinafore. He’s been offered a small part time job involving computers.  Fingers crossed!

But where to go from here? How does one get through this present impasse? I found an intriguing story on Gianna Kali’s blog, that shows how one woman began her process of individuation. (Clearly, according to Jung, Chris is still too young to individuate. He’s going to have to settle for emotional maturity for the time being. That’s a new, no doubt traumatizing, experience for him. I mean that without irony.)

In another week or two I began to read Jung again, sifting though his abstruse pronouncements looking for practical advice on what to do next, after one had a heavy-duty confrontation with the collective unconscious. The problem was to assimilate it into one’s daylight consciousness and absorb its life-changing lessons, instead of keeping it walled off where its destructive power could break through again. Jung’s term for this process of assimilation was Individuation. Plainly it was going to be a challenge for somebody like me, because he warned that it was a task for the second half of life, something to be undertaken by stable individuals who had made a place for themselves in the world and achieved the necessary emotional maturity. Nobody under forty, he said, should even consider trying to deal with the collective unconscious. Those too young should be led back to the daylight world via Freud.

. . . I read on, looking for the specific techniques Jung used to help his suitably aged patients deal with the unconscious and its frightening contents. He said he had them express their experience somehow, by painting or drawing or writing or even dancing. When they did this, they would begin to have helpful dreams that gave valuable hints on how they should proceed. And of course, they had Jung himself to interpret their dreams and to give them advice and reassurance.

Our journey continues.

“There is a view that jazz is ‘evil’ because it comes from evil people, but actually the greatest priests on 52nd Street and on the streets of New York City were the musicians. They were doing the greatest healing work. They knew how to punch through music that would cure and make people feel good.” (Garth Hudson, member of The Band)

In memory of Jake, I would like to take up several of the excellent points that Suzanne Beachy highlighted in her guest post. Suzanne’s belief about Jake’s fate —that it, like many deaths in the so-called “schizophrenia” population, could be directly linked to the dismal diagnosis, is something that I hadn’t quite considered in that stark a way. She’s absolutely right. From my own experience, I know how the dismal diagnosis, the acceptance by the medical profession of the chronicity of schizophrenia, permeated our household. My husband and I were encouraged by the mental health system to see our son as hopeless. This led us to say the wrong things to Chris, to treat him like a child, to insist on the drugs that the doctors assured us were the only treatment, to cry over his lost opportunities, to get angry with him for constantly eating, to fight amongst ourselves.

One night, several years ago, a few months before he entered the psychiatric hospital for the third time, Chris got hit by a car. He was psychotic. Luckily, he was only grazed. I never told his psychiatrist about this because I was so against the drugs, having seen how little they had helped him, and I knew that the psychiatrist would insist that he go back on them. This was my ill-advised reaction to where the diagnosis had taken us. Chris could have been killed, but I was still in the dark about how to help him get better.

Parental divorce can also be one of the outcomes of the diagnosis. My husband and I, luckily still happily married,  weren’t the only ones, apart from Chris, affected by the diagnosis. Try convincing your friends and relatives after you’ve finally seen the light that your relative will fully recover one day, and you may find they don’t share your optimism. They, too, have been affected by the diagnosis. Everybody “knows” that schizophrenia is incurable.

Let’s begin with the diagnosis of schizophrenia, which crushes all hope. Suzanne writes: I can remember when he was a newly minted mental patient, admitted to OSU’s psych ward at age 21. I and some of Jake’s other supporters were consulting with the people in white coats about his prognosis which was, in their estimation, either grim or grimmer. They did not want to give us any hope for his recovery. In frustration and wanting to inject some hope into the discussion, my long-time friend Drew, who had known Jake since he was two and had come to the psych ward out of love and caring, said, “Couldn’t it be that Jake has simply had a good old-fashioned nervous breakdown?” The resident snapped back, “There’s no such thing.”

So, a newly minted medical student who has been over-schooled in the psychopharmacology of the brain, but hasn’t been on this earth long enough to know about nervous breakdowns or the human spirit, becomes the messenger of doom, the thought leader on how we parents react to the diagnosis and shape our children’s lives (for the worse, I may add) for the next decade.

There is no such thing as a nervous breakdown today because, I strongly suspect, drugs had not been invented nor given for such a condition in the past. Best not to call it a nervous breakdown today. Call it schizophrenia, call it bipolar, call it depression, and we’ve got a drug now or in the pipeline to treat it. The medical student is too young and naive to have figured out that the tail is wagging the dog — doctors are now doing pharma’s work. (See my post on What ever became of the nervous breakdown?)

Suzanne writes: I have also been told by a psychiatrist/former schizophrenia patient that one of the worst places you can take a psychotic young person for help is the psych ward of a teaching hospital, which unfortunately was precisely where Jake landed.

(In the same vein, if you want to avoid a caesarean birth, don’t go to a teaching hospital.)

A teaching hospital (CAMH in Toronto) is exactly where my husband and I were coerced into losing all hope about Chris’s future. CAMH was about to give him electroshock treatment (no information divulged to us about the controversy), and if I remember correctly, my husband and I were disappointed that Chris was unable to participate in a research study. (He was moving to another country.) But now I know: Medical students could learn a lot from watching Chris’s electroshock treatment. Today, I thank my lucky stars that Chris managed to avoid both of these treatments. CAMH is ideally situated a stone’s throw from the University of Toronto main campus, and can therefore conduct research on endless streams of young treatment naive male students and their parents.

Suzanne writes: But let me inject some hope back into this story. In the past few years, I have met dozens of people who have fully recovered from “psychotic disorders.” All of them had to break away from mainstream psychiatry in order to find wholeness and healing.

What I appreciate about Suzanne is how positive she remains, in the face of much personal tragedy. If psychiatry refuses to give us hope, we, parents, relatives and psychiatric survivors, can make it our personal mission to show people where hope can be found. Suzanne and I have listened to ex-patients and arrived at the same conclusion — If you want to be fully recovered, you must break away from mainstream psychiatry and mainstream thinking.

What happened to Jake?

Seven years after being hospitalized in a psych ward, my brilliant, funny, sensitive, artistic, shining star of a son died as a homeless person after being struck by an Amtrak train in Santa Barbara.

Impossible, sickening, and yet it happened.

I can remember when he was a newly minted mental patient, admitted to OSU’s psych ward at age 21. I and some of Jake’s other supporters were consulting with the people in white coats about his prognosis which was, in their estimation, either grim or grimmer. They did not want to give us any hope for his recovery. In frustration and wanting to inject some hope into the discussion, my long-time friend Drew, who had known Jake since he was two and had come to the psych ward out of love and caring, said, “Couldn’t it be that Jake has simply had a good old-fashioned nervous breakdown?” The resident snapped back, “There’s no such thing.”

Really. And why not?

What I have learned in the time since Jake’s death is that despite what mainstream psychiatry likes to purport, people recover from psychotic disorders all the time, all over the world. I have met many of these survivors personally. I have also been told by a psychiatrist/former schizophrenia patient that one of the worst places you can take a psychotic young person for help is the psych ward of a teaching hospital, which unfortunately was precisely where Jake landed.

If, when Jake had his crisis, we had lived in northern Finland, where psychosis is treated in a radically hopeful way, he would likely not only be alive today, but also thriving. Sadly, we were living in the U.S., where young people who experience psychosis are told that they have some sort of debilitating brain disease for which there is no cure. What could be more hopeless?

But let me inject some hope back into this story. In the past few years, I have met dozens of people who have fully recovered from “psychotic disorders.” All of them had to break away from mainstream psychiatry in order to find wholeness and healing.

In a 2005 interview for MedScape, former schizophrenia patient Daniel B. Fisher MD, PhD, was asked about his own journey of recovery from schizophrenia. He said,

“I was lucky — I was able to find a psychiatrist who was able to provide me with many of the principles we find have worked in recovery. He believed in me. When I told him, several months after coming out of the hospital the second time with a diagnosis of schizophrenia, that I wanted to go to medical school and become a psychiatrist, he said he would be at my medical school graduation. And about 7 years later, he was there.”

In a 2009 interview for the U.K.’s Independent, former schizophrenia patient Eleanor Longden stated,

“My original psychiatrist told me I would have been better off with cancer because it was easier to cure. She still says that to people. What happened to me was catastrophic, and I survived only because of luck. If I had lived one street to the right, I wouldn’t have been referred to [innovative psychiatrist] Pat Bracken. That can’t be how people’s lives are determined.”

And so, dear reader, have you noticed the common ingredient in these two remarkable recovery stories?

Luck.

For way too many people diagnosed with psychotic disorders, recovery depends on luck. We need to remove luck from this equation and replace it with faith and hope and the truth about the real possibility for wholeness and wellness, so that we don’t have to rely on dumb luck. In 2010 I gave a talk for TEDx Columbus about innovative psychiatrists who have successfully helped people overcome psychotic disorders. A link to that talk is provided here on Rossa’s blog. We as a society must demand a new paradigm (or rather, a return to an old one) that helps the mentally and emotionally suffering to get well and stay well.

Who’s with me?

Please listen to Suzanne Beachy’s message: TedxTalks What’s Next for the Truth?
Any diagnosis of mental illness results in a complicated and uncertain fate for those it strikes. When you lose a son as a result of such a diagnosis, it ignites a search for answers. Suzanne Beachy has gained a perspective on life as a result of her loss but is still asking, what is the truth?

Editor’s note: Yale University is a wonderful place to peddle the status quo while making money helping commercial interests fatten their bottom lines. We are all supposed to genuflect when we hear that someone teaches at or graduated from Yale! Yale and academia in general sold out long ago to the imperatives of business.

About the only thing I can agree with in the following interview with Mary D. Moller is her statement “We need to give people time to heal. We’re pushing people too fast. We have not done a good job of helping people cope with the psychological and emotional consequences of psychoses. Recovery is so much more than symptom management and obtaining meaningful work.”

Oherwise, I find the interview very disturbing. Prof. Moller has built her professional life around the biochemical model of the illness. Now, she is ensconced at Yale University, awash in research grants that promote recovery as a state of perpetual patienthood. Being a patient is stigmatizing, demoralizing, and unhealthy. But Ms Moller is a nurse first and foremost. She can’t be a nurse unless she has medicated patients.There is no incentive for her to connect the dots, and so she doesn’t.  She does not believe in full recovery. She believes in exacerbations and remissions, and of course, meds.

Though no disclosure was provided for this interview, MEDSCAP discloses that Mary D. Moller has received grants for clinical research, served as an advisor or consultant to, and received honorarium for promotional talks, from AstraZeneca Pharmaceuticals.

NAMI Talks to Mary Moller about Post-Psychotic Adjustment

By Sarah Christen, NAMI Convention Manager

Mary D. Moller D.N.P., M.S.N., A.R.N.P., is an advanced registered nurse practitioner dually certified as a clinical specialist in adult psychiatric mental health nursing and a psychiatric rehabilitation practitioner.

We are looking forward to Mary’s presentation, “From the Couch, to the Mall, to Work! Understanding the Relationship of Post-psychotic Adjustment to Recovery,” at the NAMI National Convention on Wednesday afternoon, June 27.

NAMI recently talked to Mary Moller to get some insight into her life’s work and what she will be highlighting at the convention.

Can you tell us about your history?

I have been working in psychiatry since 1978. Prior to that, I worked in neurology for seven years. I had no experience in psychiatry when I started—I just noticed a complete parallel in behaviors and symptoms in psychosis that I saw on the acute neurology unit. I started providing the same kind of nursing care for psychiatric patients I did in neuro-rehab.

In 1992 I moved to Washington state because the nurse practice act allowed for autonomous prescriptive authority and independent practice. I started the first independent nurse-managed and owned outpatient psychiatric clinic to provide wellness-focused, one-on-one services and group psychoeducation for people living with serious mental illness and their family members.

When [the medication] aripiprazole came out in 2002, I noticed several individuals living with schizophrenia had a new level of awakening that hadn’t occurred with their previous medications. I started holding focus groups to develop a new rating scale I was calling “The Impact of Psychosis Questionnaire.” I was curious as to why some people seemed stuck in their ability to move forward with their lives. I wasn’t prepared for the often long-enduring anguish over the traumatic impact of psychosis that I was reading in the narrative section of the questionnaire as well as in the focus group discussions.

I realized that the consequences of psychosis was reflecting difficulty in adjusting to life with all the changes caused by a mental illness. I called the phenomenon “post-psychotic adjustment process.”

What is the Milestones of Adjustment Post-psychosis (MAPP) Recovery Model?

In 2003, there was nothing published on this phenomenon. My career has been spent attempting to understand the lived experience of psychosis from the person and the family experience. This was a new level to learn. I went back to school and studied this phenomenon for my doctoral thesis. The result is the MAPP Recovery model—Milestones of Adjustment Post-psychosis.

My research identified a four-phase process with 50 measurable cognitive, emotional, interpersonal and physical milestones that occur over at least a two-year period. Understanding this process assists both family members and the person living with mental illness to develop skills that will assist in meeting their desired recovery goals and aspirations.

We need to give people time to heal. We’re pushing people too fast. We have not done a good job of helping people cope with the psychological and emotional consequences of psychoses. Recovery is so much more than symptom management and obtaining meaningful work. I look at where an individual is along the trajectory and, with the help of the person, create an individualized set of goals and interventions to reach a desired target. The key to success in navigating the MAPP is the need for family support and medications that assist in managing symptoms.

How has mental health care changed in the last 30 years?

Science has shown us that psychiatric illnesses are very serious neurobiological disorders. We need to approach these illnesses as we do all other chronic health problems recognizing that there are exacerbations and remissions. They are very serious medical illnesses of the brain. Left untreated, they can cause very serious and lifelong consequences.

Stigma is still our major battle. The stigma runs so deep that it affects policy development and implementation. Politicians want to speak nicely, but dollars for community-based mental health care are still sadly lacking. We still have far too many people who are homeless or now being treated in jails. Housing and long-term services for individuals with psychiatric illnesses is still sadly lacking. Many excellent programs have been developed but had to close because of loss of funding.

Mary Moller is currently an associate professor of nursing at the Yale University School of Nursing, where she is director of the psychiatric nursing master’s program. She received the Case Western Dean’s Legacy Award for her research, “The Lived Experience of the Patient with Schizophrenia in the Post-psychotic Adjustment Phase of Recovery from Psychosis.”