Voices of Recovery

Introduction: Here's to the Crazy Ones...

2008-08-12T08:52:00.001-07:00

All of the individuals whose stories are shared on this blog are people who have undergone the experience known as psychosis, schizophrenia or bipolar disorder in this culture. All of them have recovered completely or to a large degree. I share their stories because, for the individual who is facing such an experience for the first time, nothing is so encouraging as the voices of those who have successfully passed through this transition and moved on in their lives.

I expect to be adding to this blog as time permits and sincerely hope that you, the reader, enjoy hanging out in this space as your time permits.

Regards,

spiritual emergency

Music of the Hour: Here's to the Crazy Ones

A very special thank you is owed to Dr. Paul Minot, a candid psychiatrist who considers himself to be part of the critical psychiatry movement: "I see myself on the mainstream edge of the movement, not so much aghast at the type of treatment that we psychiatrists provide as I am at the kind of bullshit we spout to justify it. Contemporary treatment is propped up by a wealth of sham science, systematically generated by academic institutions that are in thrall to their corporate benefactors, most notably Big Pharma."

Under a different set of circumstances Dr. Minot might have found himself featured on one of my other blogs. Instead, I have to give him credit for helping me realize why it's essential that this kind of information is shared in an independant space.

One would hope that a psychiatrist who works with individuals deemed to be "schizophrenic" would be encouraged by these testaments to recovery and would want others to have the opportunity to hear them. That was not the case. After deleting his forum where I had initially shared these voices -- "In case you haven't guessed it already, you're the one of the major reasons I decided to ditch the forum in the first place. Consider yourself lucky that I sent you any notice of my site revision at all, because I fully considered NOT doing so." -- Dr. Minot has since threatened to ban me from commenting at his blog, along with a host of other insinuations that are not the least becoming to his profession...

"You also might want to know that SR insists that he has schizophrenia and has been cured of it, even though his psychotic symptoms were brief and thus did not satisfy the DSM-IV criterion of a minimum six-month duration. It is my opinion that SR was clearly misdiagnosed (as often occurs, unfortunately), but he's taken the misdiagnosis and is running with it, drawing upon his dubious personal experience and miraculous (not) recovery to enlighten stupid schlubs like me. Otherwise the stuff on his site is interesting and enlightening--it just has nothing to do with the DSM-IV diagnosis of schizophrenia."

I can only assume that Dr. Minot's assessment is based on having read my summary of that experience and that he came to the conclusions he did as a result of his careful and reasoned professional analysis. I can further assume that if he had actually read that summary, the good doctor would at least have the wherewithal to realize that I am not a "he".

One has to wonder, what motive is involved in assessing a personal experience as "dubious" when, clearly, one has not read it? I think it would be reasonable to assume that Dr. Minot's assessment of my blogs is rooted in a similar process.

"... your idea of "regularly participating" was to cut and paste huge swaths of content from your own site onto numerous threads--i.e. hijacking the forum for your own purposes--rather than writing original comments and posting links to your site like any courteous person would have done. The reason you're pissed off is because you lost a huge amount of free webspace.

SR, I'm leaving your post here, along with this comment, so that anybody visiting my site still is aware of your site and can visit it if they want. Which is a hell of a lot more courtesy than I will ever see from you. Otherwise watch what you post here, because if you start abusing my good will again I'll just ban you altogether."

Apparently, Dr. Minot considers it to be abuse of his good will to share information related to schizophrenia and recovery at his forum. And yet, at no point in time had he ever let me know that he was opposed to me doing so.

In spite of his now-apparent offense, those articles and posts were being widely read. The schizophrenia and psychosis forum was, in fact, the most active one at his discussion board -- it had the most posts and the most readers. One day however, the entire forum was gone without any warning whatsoever nor the recognition that others had invested a considerable effort in contributing to it and might, at minimum, have appreciated the opportunity to save or recover some of their input.

Sometimes a site host will remove a site from the public eye in order to tweak something here or there. When no information is forthcoming the best a body can do is to wait and see what the tweak is. In Dr. Minot's case, it meant complete erasure. One is left with the conclusion that schizophrenia and recovery is not a topic near and dear to Dr. Minot's own heart -- how could it be when he believes that schizophrenia is a lifelong, disabling condition?

Let me say right up front that after 25 years in psychiatry, and extensive experience with this patient population, I am utterly convinced that schizophrenia is a neurochemical disorder. ... It is usually a lifelong condition, often disabling, with a huge social cost.

According to Dr. Minot, everyone else has reason for hope and optimism, but not the schizophrenic. For them, there is no hope; there is only his prediction of chronic disability and hopelessness.

I have since used this space to recreate one of the most popular threads that had formerly been posted at Dr. Minot's forum. Meanwhile, I don't expect I'll be hanging at his blog any further. I do have three (free) blogs of my own and plenty of other places I can go where I needn't be concerned I'll be threatened, misrepresented or silenced.

Music of the Hour: Antony & The Johnsons ~ Hope There's Someone

See also:

Schizophrenia & Hope

Bias & Stigma Within the Mental Health Community?

Critical Psychiatry [PDF File]

Hugh Massengill: Madness is a Doorway We Ourselves Create

2008-08-12T08:28:00.000-07:00

People with PTSD feel as if they have lost their minds.

People with Complex PTSD feel as if they have lost themselves.

In situations of terror, people spontaneously seek their first source of comfort and protection. Wounded soldiers and raped women cry for their mothers or God. When this cry is not answered, the sense of basic trust is shattered. Traumatized people feel utterly abandoned, utterly alone, cast out of the human and divine systems of care and protection that sustain life. Thereafter, a sense of alienation, of disconnection, pervades every relationship, from the most intimate familial bonds to the most abstract affiliations of community and religion.

Trauma and Recovery - Judith Herman

I am Hugh Massengill. I identify as a psychiatric survivor, Vietnam Veteran, Child of alcoholism and suicide (mother), and a person with PTSD. I lived for (‘75-’78) years in State and VA mental hospitals diagnosed a Chronic Paranoid Schizophrenic.

Having been told I was severely mentally ill and would be for the rest of my life, I left the hospital and went to a rescue mission where I pretty much sat for five and a half years. I was, periodically, wildly suicidal. It wasn’t an odd intrusive thought, suicide, it was a way out of my unbearable pain. My early family life was remarkably dysfunctional. My finally crumpling under the unbearable emotional pain was labeled insanity, rather than the sanity it really was, PTSD being a very normal reaction to terror.

I am not about sweetness and light. My life was a struggle with pain and isolation. I lived for decades without any sense of belonging to the human race. In the mission I would often spend a week or so without a conversation that lasted longer than four or five words. When I left the Mission, I lived in a small furnished room. Unlike others of my age, I had no house, furniture, car, wife, kids, job, career, family or friends. After years of isolation, I had lost the ability to hold a conversation, or to really know what I was thinking.

If I am getting health, within my limits, it is only because I believed in myself. I woke up one day and realized that I wasn’t “mentally ill” in the traditional sense, and that I would have to do all the work myself, if I wanted to survive.

I gained at least fifty pounds in a year, living in the VA mental hospital, on powerful anti-psychotic drugs. I did no exercising. I kept my PTSD in control by isolation, overeating, and daydreaming. Both the State and VA mental hospitals did their best to convince me that I was defective, that I had a genetic mental illness, and would need drugs forever. My self-esteem was in the negative range. When I was in a crowd I would try to get to the edges, or leave, as I didn’t feel I was anything other than a social reject (schizophrenics are crazed killers, don’t you know?). My mother and I, both terribly traumatized in our respective youths, seemed to be having an unspoken contest to see who would suicide first. She age 56, took her life while I was in the VA hospital system.

And yet, here I am, age 61, alive and, most of the time, happy to be alive. I do a lot of volunteering, and am on several Boards and Commissions. I am on Eugene’s Human Rights Commission, and I am on this current task force looking at the fact that those who go through the mental health system die 25 years before their peers.

If I am getting health, within my limits, it is only because I believed in myself. I woke up one day and realized that I wasn’t “mentally ill” in the traditional sense, and that I would have to do all the work myself, if I wanted to survive. Recovery simply wasn’t built into the mental health system. It was designed by “Big Nurse” to warehouse the very lost and battered; to avoid paying the true expenses of taking care of those with PTSD, though it wasn’t called that at the time. I give the most credit to the Eugene Rescue Mission where I lived for years. It helped because it wasn’t connected to the mental health system. No one there forced me to take drugs that dulled my mind, no one there labeled me crazy or defective. I had a cot in a large dorm, simple food, and a very simple job folding newspapers for their recycling program. Let me repeat that: I was aided the most by someone giving me sanctuary from the highly degreed shrinks and their soul-shriveling labels. I lived among equals, men who were equally damaged, distant ghosts unbound by family or relationships.

I fought the VA for years until I got a fairly small pension. Using that, I joined a weight-loss club. Cost me a fortune, but that was the only way to get the 50 pounds off. Very hard to keep it off, but I joined an exercise club, which was expensive, to help me. I went into counseling, as a Vietnam Veteran I was eligible to use their Vet Center system, which was then a peer-led counseling program. I sat across from someone I grew to trust, for years, relearning how to take my inner world and expose it to the light of conversation. I got off those damn psychiatric drugs, and I stayed off them.

I counsel people today not to do what I did, as I just walked away from the drugs, and for months, had a doubling of my emotional problems. The inner emotional storms were...horrible. But I survived. And I suspect that, though those years took a lot out of me, I bought back a lot of those 25 years. And I do not give much credit to the traditional mental health system for much of my “recovery’. It fought me for years to stay on Thorazine. It refused me a pension, even though I was diagnosed schizophrenic and locked in a VA crisis ward. It did nothing to aid my self esteem. I do have a lot of respect for the Vet Center perspective that sees dysfunction as a natural result of trauma.

I don’t have degree from Yale or Harvard, but I would match the education I received in Norwich State Hospital, Northamption VA Hospital, the Eugene Mission, and years on the street, with the education of any psychiatrist. I sat in the Mission and the hospitals and, within limits, learned what terror and horror and hopelessness felt like. I watched where it came from, how impossible it is get rid of (broken hearts never heal), and above all, I learned that we are remarkably resilient, we human beings, if we get a chance to relax and relearn love. Recovery isn’t about being “cured”, as many of us never had a disease in the first place. It is about relearning to love who we really are, and to accept the daily burden of our struggle as just something we share with most other humans.

© Hugh Massengill

Source: Oregon Recovery Stories

Music of the Hour: Nana Mouskouri

See also: Madness Is A Doorway We Ourselves Create

Introduction: Here's to the Crazy Ones

2008-07-15T19:41:00.001-07:00

Schizophrenia & Hope

Bias & Stigma Within the Mental Health Community?

Critical Psychiatry [PDF File]

Jane Alexander: My Spiritual Recovery

2008-07-15T19:29:00.000-07:00

I am a 33 year old recovered survivor of 20 years of mental illness. This is what happened, and how I survived.

Like many of us with mental illness, it all started as I was growing up.

After years of child abuse and psycho emotional family histrionics I was depressed.

During the summer of 1989 at the age of 14 I tried to kill myself for the first time of eventually six major suicide attempts. Soon after I also experienced the first of several psychiatric hospitalizations. There in that place, I was diagnosed with terminal mental illness, 3 weeks after inpatient admission.

During my stay there, an experience which lasted over 70 days I was tested, examined, interviewed and therapied for weeks before a consensus diagnosis was rendered. The hereditary seeds of mental illness had sprouted early in me. I was told I had inherited an unknown chemical imbalance that in some way profoundly effected my thoughts, feelings and behaviors.

The diagnoses? Dual Axis 1 diagnosis: Manic Depression, or Bipolar Disorder 1 Schizoid Affective Disorder co morbid with Post Traumatic Stress Disorder.

After 8 years of clinical psychotherapy, 3 psychiatric hospitalizations, 4 years spent in residential treatment centers, group homes, mental health lock downs and 6 months of involuntary medications of perphenazine and lithium carbonate I remained absolutely and completely lost. Modern psychiatry had completely failed to help me heal from suicidal depression or any of my problems at all. In fact, the violation and mistreatment I experienced while in the juvenile mental health system only made me worse in every way.

Having experienced utter failure with the meds and therapy approach, I gave myself over to alternative healing. Along my path I have tried to keep an open mind in the interest of healing myself of mental illness permanently. As such, the following are just a sample of things I have undertaken in order to understand their effects on the mind body and emotions.

I have tried self medication, crystal healing, Saint John’s Wort, veganism, shamanistic purification rituals, flower essences and oils, vitamins and supplements of all kinds, toning, aura cleansing, chakra balancing, praying, chanting, music and sound therapy, touch therapy, reiki, toxin cleansings/flushings, teas, magnets, gems and precious stones, tantra, affirmations and daily quotes, positive thinking, deep tissue body work and movement therapies, ( Rolfing, Feldenkrais and Alexander ) chiropractics, in short, I tried everything.

Over the course of a 10 year journey down a path of spiritual, physical and mental healing. I personally explored, researched and experienced a wide variety of holistic remedies and alternative therapies in a desperate attempt to find my mind, myself and my body. I ran into false avenues of recovery along this path as well.

Many of those things seemed beneficial some times. Several of those therapies gave me very positive effects. Some of those therapies did absolutely nothing for me. None of them completely healed me of all my mental health problems.

The problems are called mental for a reason, they arise from the mind, and from the mind a cure must come. The cure for my mind was deep meditation. I had studied meditation off and on all my life since my teens but never with a focus on self therapy.

In my early 20s, left with nothing to lose and nothing worth losing. I gave myself over to the practice of genuine meditation. Alone, often in total isolation, over the course of thousands of hours, I went inside my being and reprogrammed my mind.

I never set out to beat bipolar disorder or any of my other mental illnesses. I set out to find inner peace. The promise of meditation was the promise of self understanding and becoming completely comfortable with life and being alive. More than anything, I needed to have my mind and heart back. I had to find a reason to go on.

In the process, I undertook a true holistic, yogic lifestyle. A true yogic lifestyle to me meant, living right, eating right, breathing right, exercising right, and taking care of myself until I was well again. I looked at myself as an experiment. The results of experimenting with my mental and emotional health would be effected by controls and variables.

In order to secure the space needed to accomplish this. I got rid of all excess detritus and negative forces and stress in my life. Bit by bit, I subjected myself to these control and variables. I gave myself to the process of healing and recovery with an open ended time commitment, knowing, that it was pointless to pursue life, until I had a reason to live. All the things people feel compelled or driven to do, college, career, family, relationships, romance, planning for the future, none of that had any meaning for me, and nor during the course of recovery, could I allow striving for any of those things to interfere with me. I was living one day at a time since my near death experience. That was all I could handle.

So as a means to an end I first put extreme physical distance between myself and everyone in my old life. I moved far away from my family, abusers and mentally ill people, and any physical location that could possibly trigger me. Then I put myself in isolation and lived alone for a long time. During this time I began my health experiments in diet and nutrition. I started practicing tai chi, yoga, chi gung and meditation full time. Gradually, the constant practice of these healing arts granted my body and mind enough inner calm and grace to begin serious, devoted and full time meditation practice. As soon as I was strong enough, I began the work of going within.

The first thing I did, was learn to relax. Twenty years of tension had ruined my nervous system and I needed to really learn to let go. Then I processed all the PTSD triggers until the flashbacks were gone, and no memory had any power over me. As I underwent this self psychotherapy, I learned cognitive behavioral therapy and applied it to myself. I combined introspective meditation and advanced chi gung techniques to permanently dissolve every trigger inside me, until they were gone as though they had never been there in the first place

Then the first year came and went without any depression whatsoever, for the first time in my memory. Then the second and third year came and went without depression as well.

During this time, I worked on anger, loss, abandonment, abuse and violation, anxiety, addictions, attachments, aversions, attractions, likes, dislikes, and all my past relationships. Another year went by without depression and now, my anxiety and neuroses were making similar remissions. This entire time, the voices in my head became quieter and quieter, less and less overwhelming. The cacophony, the chorus the storm, was, for the first time in my life, spontaneously abating.

During the summer of 2000 I went on meditation retreat for a week. Almost six months later, on the fourteenth day of a personal isolated sitting retreat, the most powerful meditation and spiritual experience of my life surprised me out of nowhere and changed my life forever.

Unasked for and unlooked for, I had a direct experience of Self. I came into contact with what lies deep inside us all. That discovery caused me to fall in love with myself. It was like being born again. It recharged my spiritual, physical and mental batteries restoring to me a passion for life and living. After literally thousands of hours of dedicated genuine and proper meditation practice, I finally had peace. In that moment of surrender and apprehension, all suffering left me and never returned. I knew who I was, what I wanted out of life, and for the first time in 25 years, I knew absolute unconditional self love.

For days I spontaneously laughed and cried, often simultaneously. I was free and I could never ever be trapped again in the same way. I knew I would never hurt myself again. I continued to practice, to keep wiping away the remaining detritus.

In the process my mind and the voices in the whirlwind inside my mind stilled and became calm. I was never manic again. I moved on. I had cured myself of my past, my present and now that I had a reason to live, I was going to have a future. I set about making more changes to my life and continued to transform and transition as a person.

At the age of 31, I had been depression and suicide attempt free for a decade. The mania was gone, the voices were gone, the triggers where gone. I had ceased self injuring for good.

All of this I accomplished on my own, largely in solitude and isolation, without psychotherapy, support or psychiatric drugs.

Finally, I had put my life, my past and my illness completely behind me. Then on my 32 birthday, I whimsically entered the word *bipolar* into Google. In seconds I found blogs, support forums, bulletin boards, chats and even personal videos on you tube, all discussing manic depression and schizophrenia. What I found was nothing less than heartbreaking and amazing.

While I was out of the mental health scene, meditating and living a yoga lifestyle in solitude year after year, Bipolar had become a mental health epidemic. Despite the lack of evidence, this mental illness is being blamed on genes and biology. The cause is unknown and cure apparently nonexistent. I was shocked and dismayed to find that nearly 20 years after my diagnoses the horribly unsuccessful treatment of psyche meds and therapy that had failed me were still the de rigueur management technique.

When I found out that people of all ages, including children were taking over a half dozen medications or under going ECT for depression and bipolar my spirit was moved.

Everywhere I look, there is supposedly no cure for any of these major Axis 1 mood disorders. Yet I have extracted the cure for severe mental illness on my own using myself as the experiment. It pains me to read blogs and support forums and watch videos and see only learned helplessness and hopelessness.

Once I was free of mental illness, and I knew who I really was under it all. I was able to finish growing up, to re-enter society, network and socialize, make friends, and finally get involved in personal and romantic relationships after a ten year break from them.

It is possible to heal yourself of bipolar and schizophrenia, permanently.

Without therapy or drugs. It is possible to shake off the disabling symptoms of these mental illnesses leaving you with your natural gifts and talents intact. It is possible to live a life free of medications and the mental health care profession, once you have learned how to therapy yourself. As a result I believe that there may be hope for everyone for a lasting permanent recovery from mental illness.

The road to permanent recovery is not easy or fast. At least for me, walking the path to permanent mental illness recovery was the single most difficult undertaking of my life. In my recovery, I have taken the road least traveled, and it has made all the difference.

© Jane Alexander

Source: Bipolar Recovery

Introduction: Here's to the Crazy Ones

2008-05-29T15:35:00.001-07:00

Schizophrenia & Hope

Bias & Stigma Within the Mental Health Community?

Critical Psychiatry [PDF File]

Spencer John Perdriau: Holistic Ethics for Psychosis

2008-05-29T15:11:00.000-07:00

Only when you have experienced the lowest of the lowest are you then humbled enough to appreciate and experience The Highest of The Highest.

Holistic Ethics for Psychosis

Hello everyone. My name is Spencer. I have recovered from schizophrenia, and for many years now, I have lived symptom and side effect free from the illness.

My speaking here tonight is a little special for me because it is also my 30th Birthday today. Being my very first public appearance I am quite nervous to say the least. I knew I’d feel very exposed up here, but I will do my best to give you an interesting and inspiring presentation. To help me through my speech tonight, I have written it out, and I will be reading from it directly, so please excuse my nerves and lack of eye contact with you.

To start with, I will give you a bit of insight into my experience with the illness, and then I would like to briefly touch upon my areas of interest, the holistic and transpersonal areas of psychosis.

My first encounter with the illness occurred when I was 20, with a good 10 months of after depression before finding my foundations again. Since then, I have encountered another 3 mild relapses, lasting no longer than 2 to 3 weeks, and for each encounter I have recovered back to normal regular health again. It has now been over 2.5 years since my last encounter, and I now feel I have the experience and insight to prevent further relapses.

However, there is no 100 percent guarantee that I will never encounter another relapse again in my life, but with everything I have gained from my 10 years of experience, I now have substantial tools and armoury to prevent such again, and will do everything in my power to continue to do so. And speaking bluntly, if someone as ordinary as myself has the capacity to conquer this devastating illness, then anyone else has just as much ability, if not more so, to overcome it.

Having been so well for so long, I decided to write a book on my experiences and to also provide practical steps to overcome psychosis. My book is also available in web format called The Freeman Foundation. I chose the name Freeman as my website conveys the knowledge and experience I have successfully used to be a “free man” from the chains of mental illness.

As mentioned, my work focuses on holistic issues regarding psychosis. Considering this perspective is greatly shunned and not given its due address resulting from the materialist methods dominating the industry, and media, I feel it is about time a credible and justified address was given by someone experienced in such, both directly and substantially. Thus, the reason for devoting my time to conveying such. I will speak more about this a little later, but for now, I would like to address more immediate issues regarding schizophrenia.

Even though I have won the horrific battle to return to my normal self again, and the illness itself is no longer part of my life at present, the most frustrating, humiliating and demoralising aspect I find is people like myself – even long after recovery – are still categorised and labelled as a “schizophrenic”, not only by society and media in general, but also being addressed as such by doctors, scientists and psychiatrists in the industry. This is extremely inaccurate, and I will explain why…

Health and harmony is the natural state to be. Illness and discord prevents us from keeping that natural state of being, and therefore any illness, no matter what it may be, is something we are not. We all strive for and want health and harmony… no one strives for illness, discord and violation. Why…

Because health and harmony is our natural and comfortable state of function.

Even when I was sick, even the very first time, it was extremely disturbing and profoundly obvious to me that something was seriously wrong, and I certainly didn’t have to rely on any qualified diagnosis to tell me that. I was very much aware of that for myself.

If we are fortunate, we may suffer from illness for a short duration and recover. If we are unfortunate, we may suffer for a long duration and may never recover, but no matter what length of time it is upon us, we are not that illness, because it is not the natural state of health.

You never hear someone who is diagnosed with cancer being called “a cancer.” They are addressed as “having cancer” or “suffering from cancer.” A person is not “a Parkinson’s Disease”, they “suffer from Parkinson’s Disease.” Keeping this in mind, there are many other illnesses that we label and categorize people as. Take diabetes. It would be far more accurate to say, “they have diabetes” or “they suffer from diabetes”, rather than to address them as “a diabetic.” A person with drinking problems is not “an alcoholic”, they simply suffer from alcohol debilitation that disables them from normal regular health.

I have met many people who do and have suffered from schizophrenia, but never in all my life have I ever come across “a schizophrenic.” This is a very sensitive and very large issue that needs to be addressed, because for those of us who have struggled with mental illness, and now lead normal lives… being categorised as a schizophrenic (as opposed to being labelled as a diabetic) can be very offensive and degrading to who we truly are. Although Russell Crowe’s excellent film, A Beautiful Mind has done a wonderful job to alleviate such, there is still so much collective social ignorance, prejudice and negative stigma out there about schizophrenia. Mental illness is still an issue that is shunned and rejected by mainstream society who are fortunate enough to have regular mental health and have no need to consider such. We of us who have encountered, and those who still do encounter schizophrenia…

first and foremost, we are a Human Being just like every one else…

We are just a human being who may well be struggling with, or may have even overcome, a particular illness that prevents us from keeping normal regular health… Either way, we are a person of equal value, just like anyone else, no matter what position or status in life…

No matter what the illness… it will never define the human identity, or our essential, true and pure being. Illness may limit our manifest expression, but our humanity and essence is still and always fully free from such, or any other violation that deprives us from that outer appearance of health…

“Any illness prevents us from being who and what we truly are. Schizophrenia is an illness, not a person. Thus, there is no such thing as a “schizophrenic”.”

You may have noticed my deliberate use of the word normal in my dialogue so far. I have done this, as it doesn’t cease to amaze me that mainstream society still asks the question…

“So what is normal anyway?”

Well, having encountered insanity and having returned to sanity, to now register reality as it actually is, I certainly understand and appreciate the very accurate definition and grammatical term of the word “normal”, far beyond the appreciation of any normal person who takes that privilege of health and stability for granted, and knows no different from having normal regular health.

* * *

Now I’d like to briefly mention the transpersonal and holistic perspectives regarding psychosis.

Generally speaking, holistic and transpersonal psychology conducts research to verify the sacred underlying unity and interconnectedness of and throughout all reality. In my book, which is called, Into The Light Again, I take great care to verify this area of reality, providing many justifiable sources of knowledge, scientific as well as the transpersonal. I also place a rather important emphasis on the fact that no matter what illness we encounter in life, whether mental, emotional or physical, it can in no way damage or corrupt our deeper subjective self, or ultimately deprive us of experiencing and realizing that greater aspect of our self, and reality in total.

Regarding psychosis and the transpersonal, a quote of mine quite simple states…

“Only when you have experienced the lowest of the lowest are you then humbled enough to appreciate and experience The Highest of The Highest.”

To realize the most important and precious part of yourself is totally free and untouched by any violation of manifest illness is an immense relief, comfort and very enduring empowerment to go on to conquer and live free from the horrors of mental illness, far beyond what any gross material means could ever hope to achieve or offer.

I am the person I am today from discovering such, and it is my greatest wish that all sufferers of illness, mental, physical or emotional, are fortunate enough to discover what I have. And it is now my primary objective to pass on that precious knowledge for the benefit of others.

This is the foundation of what my little book is about…It’s my eighth work. It makes for a very revealing and inspiring read, and I hope to find a publisher in the near future. So if anyone out there knows of anyone who may be interested, I’d very much like to hear from you.

This concludes my presentation.

I hope I have left you with something hopeful and uplifting to consider and pursue further.

Thank you very much for giving me your time here to tonight. It has indeed been a great privilege for me, and I consider it a wonderful birthday gift.

Thank you.

© Spencer Perdriau

Source: Spencer John Perdriau

Introduction: Here's To The Crazy Ones...

2008-05-07T14:17:00.001-07:00

Schizophrenia & Hope

Bias & Stigma Within the Mental Health Community?

Critical Psychiatry [PDF File]

Diana Kern: Expect Recovery!

2008-05-07T14:03:00.000-07:00

“Never doubt that a small group of thoughtful committed people can change the world: indeed it's the only thing that ever has!”

– Margaret Mead

No Such Thing as False Hope

In 1981, I encountered my first mental breakdown and spent a total of two years in hospitals in Dallas. That experience is so memorable that I even remember my admittance and discharge dates. What is most memorable is the pain and the loss of hope that plagued me every morning when I awoke in a locked unit amongst others like me. I was dependent on hospital staff to meet my every need and frightened by that loss of control over my environment. Yet nothing was more terrifying than my own loss of control over my thinking and my behavior. I was tormented by voices that shamed my every move while ordering me to be the most influential person in the world. I was given heavy doses of anti-psychotics, antidepressants and mood stabilizers but my thinking and worse, my behavior, remained bizarre and uncontrollable for several months. Eventually I began to show small signs of improvement and when I became somewhat stable on medication, I was offered the full array of therapies-psychotherapy, group therapy, music and art therapy, and relaxation and exercise classes. I credit these therapies in helping me to gain enough control of my thoughts and actions to be released to the “outside” world.

For the next fifteen years, however, I was hospitalized over 30 times due to suicide attempts or my inability to take care of myself. Most of that time was spent in a reality that no one else could understand. I often referred to myself as “Queen of the Alphabet” and surrounded myself with three people who were both allies and enemies. Sometime in 1996 however, I came to the understanding that these three people were characters of my imagination. While many would define that delusion as “nuts”, I think I needed them to make sense of my world. More importantly, I needed them in order to stay alive.

In looking back on those years, I recognize a foundation of hope that I protected so that I could eventually lead a life outside of my illness. I yearned to be like other adults who worked and supported themselves. I craved financial independence and dreamed of a home that I paid for myself, without the help of my parents and social security disability insurance. I wanted a partner to share my life with and I wanted friends with whom I could be comfortable and friends that would like me. And now I have all that! And more!

My recovery from this illness did not happen overnight, nor did it happen in a vacuum of the right medications and my own motivation. Granted, I needed (and still need) the right medications to clear my thinking and balance my wild emotions, but without people in my life that believed in me and gave me the chance to believe in myself, I would not have come this far.

I can point to one defining moment when the direction of my recovery changed. I had recently started a new medication that was working well and I asked my therapist how to live the life that I wanted. She began her answer with, “Well, I don’t want to give you any false hope.” That statement was all I needed to hear to trust my own inner knowing and my faith that God was leading me into a fulfilling and meaningful life. I do not believe that hope can ever be false. I see now that she was concentrating on my illness instead of my wholeness and my instinct to get well and stay well. I walked out of her office and removed myself from that way of thinking and have not looked back. There is no such thing as false hope.

Mental health providers have focused on relapse prevention and maintenance for so long that they bought into the notion that recovery was not possible. My mission in my volunteer and paid work with NAMI Texas and NAMI Austin is to step out of that closet of debilitating stigma and share my truth. The truth for me, and many people diagnosed with a serious mental illness, is that RECOVERY IS POSSIBLE!

My hope is that all persons with a serious mental illness will reach a level of wellness that they never imagined possible. Recovery means something different to everyone and while there is no cure for serious mental illnesses, there is support, education and advocacy available for all of us.

On September 6, 2005, I celebrated six years as a staff member of NAMI Texas. There were many days, especially in the first 2 years, when I wanted to succumb to my fear and my lack of self-confidence, but I put one foot in front of the other and have grown with each step. I have learned how to be resilient when I have a difficult day by focusing on the joys in my life…like my two dogs and three cats, my partner of 7 years, my beautiful home, my healthy 26 year old daughter, my rich spiritual life and more.

Let’s all move forward to EXPECT RECOVERY from ourselves, our family members and our mental health delivery system.

© Diana Kern

Source: Expect Recovery!

Introduction: Here's to the Crazy Ones...

2008-02-05T19:01:00.001-08:00

Schizophrenia & Hope

Bias & Stigma Within the Mental Health Community?

Critical Psychiatry [PDF File]

John Cadigan: People Say I'm Crazy...

2008-02-05T18:35:00.000-08:00

A mind is a terrible thing to lose. This is the story of my fight to get mine back.

A Filmmaker with Schizophrenia: John Cadigan Presents His Personal Experience in People Say I’m Crazy

People Say I’m Crazy is the first documentary on schizophrenia that was crafted by someone who lives with the illness. John Cadigan produced the film to gain a better understanding of how his schizoaffective disorder—a combination of schizophrenia and depression—impacts himself and his family. Although he initially created People Say I’m Crazy as an exercise in self-examination, Cadigan has furnished viewers with an extremely intimate and uniquely honest portrayal of schizophrenia unlike anything else ever recorded in film.

Cadigan asks his family questions like, “What was the worst part of my mental illness for you?” and willfully waits for the difficult response. But he also finds the positive in his illness, noticing that it gave his family a specific “problem to focus on” and “forced them to communicate with one another.” John’s parents were divorced long before his illness, making his family “really fractured,” but upon his diagnosis, the Cadigans united together to provide John with constant love and support.

John’s relationship with his sister Katie is perhaps the most moving aspect of People Say I’m Crazy. Herself a film instructor at Stanford University and also an independent documentarian, Katie Cadigan co-directed and co-produced the film to support her brother and to attain a better understanding of how his mind works. Katie hopes People Say I’m Crazy demonstrates to audiences the importance of caring for relatives with mental illness. She insists, "Our family is not special. We were very broken before the diagnosis. And I really hope families learn not to run away from loved ones. They can always provide comfort and relief."

People Say I’m Crazy treats both the mundane and the extraordinary aspects of John’s life with equal candor. John shows how difficult the seemingly simple aspects of life — such as dealing with his landlord or even planning out his afternoons — can appear an impossible hurdle under the burden of schizophrenia. But John relies on medication, therapy, friendship, family and his work to persevere.

John Cadigan is a gifted visual artist by profession,trained at Carnegie-Mellon University’s College of Fine Arts. Besides his documentary, which won First Prize for Artistic Achievement from Eli Lilly’s Moving Lives Forward Reintegration Awards, John crafts exquisite woodcuts. He selects mythological and biblical themes and believes, "God is the ultimate enigma. All my art is a search for God." Just as filmmaking helps John come to terms with his mental illness, woodcut printmaking also serves as an outlet for his emotions. John’s talent has inspired him to champion the accomplishments of people with mental illness worldwide by speaking at art exhibitions and political conferences.

John Cadigan acknowledges that although woodcuts and filmmaking are wonderful outlets, art alone cannot quell his schizophrenia. Without the appropriate medical care and family support, John was severely ill and his creative instinct halted. He accredits medical advancements for his marked improvement. He explains, "Finally a new generation of medications came on the market, and they actually began to work. My life became bearable, sometimes even enjoyable. I started to create again—drawing, carving and making woodcuts. If my family and doctor hadn't given me such intense support, I'd probably be dead by now."

People Say I’m Crazy distinguishes itself from most films dealing with schizophrenia in its refusal to romanticize mental illness and its determination to combat the social stigma commonly endorsed by the media. John Cadigan hopes People Say I’m Crazy inspires others with schizophrenia to be more open about their illness. He reminds, "Treatment is there. There’s a lot of shame now. But don’t be afraid to talk about it, because the more people talk about it, the faster the stigma is erased."

Early in the documentary, Cadigan clarifies the most common misconception regarding schizophrenia, informing his audience, "The schizo-prefix doesn’t mean personality split — it means break with reality. I don’t know what reality is. I can’t trust my own perceptions. The hardest struggle is to know what’s real and what’s not real."

John Cadigan, an artist who consistently strives to understand reality, succeeds in depicting an authentic and personal portrayal of schizophrenia. People Say I’m Crazy presents John Cadigan’s setbacks and successes with equal honesty. But most importantly, it demonstrates that with the availability of modern treatments and fulfilling relationships, schizophrenia does not preclude someone from enjoying a stable, rewarding life.

© 2003 Reintegration.com

Source: The Center for Reintegration: First Person - John Cadigan

See also: Clips from People Say I'm Crazy

Music of the Hour: Diamonds On the Soles of Her Shoes

Peter Sarrio: My Life & Music

2008-02-05T17:49:00.000-08:00

Peter's Life Story (Updated 5/24/2006)

I was living in the suberbs with the white picket fence and the dog in the yard till age 10, when my parents divorced. I then started smoking marijuana at the of 12. I graduated to Meth and coke, right before the age of 15 - it just went right up my nose. I quit meth, coke and LSD at the age of 16 1/2. I relapsed on 1 tab of LSD at the age of 18; 4 tabs total. I also became psychotic at the age of 16 1/2 the night I quite coke and meth. After that I was just on bags of Marijuana.

When I became psychotic my parents just thought I was on drugs from Pluto. Both of them pretty much booted me out of the house when I turned 18. I did walk great distances on the streets and I was arrested 10 times in a month. My favorite arrest was for air piracy. Finally the cops dropped me off at the hospital with a thorn stuck halfway up my foot from walking bare-footed so much.

Two days later they finally found out who I was; I wouldn't tell them. They found out I was still on my dad's insurance so they sent me to a better hospital. Then I was transferred to a long-term facility that stabilized me after 7 months. Then I was sent to a half-way house; a few months later I got off conservatorship and rented a room.

I thought I was all better so I quite taking my pills and started smoking marijuana again. So I got sick again but not into conservatorship, rather I was a patient at UC Irvine Psychological Hospital where I was a guinea pig on new medication. I was at the Irving Hospital a little over a month and again was stabilized. I then went back into a board and care. After that I rented rooms for a while then got section 8 housing and lived in an apartment for 7 years. That's when I learned my music and having panic attacks.

Then came the medical marijuana years. I got a prescription which did help with my depression and anxiety, but 1 year later I eventually got sick again. During this time I had not stopped taking my medications. So I ended up in another long term facility which I got out of in about 6 months, back into a half way house. I couldn't cope anymore and I was again put on conservatorship. So a year ago on Easter Sunday I took 60 advil tablets and felt sleepy. I woke up and was still alive and told my dad to take me to the hospital. The hospital gave me charcoal to drink which I really didn't mind that much. They then let me out of another acute hospital 4 days later.

But I wasn't done. One month later I walked over a bridge with railroad tracks and gravel 4 1/2 stores high and just let go in a ball form. I landed on my legs and broke in-half 2 bones in each leg, 4 total. Train workers found me and called 911. From there I went to a nursing home in Sunnyvalle, Northern California, got discharged and am now, for the last 4 months, locked up in a long term facility in San Jose, California. Before I came ill this last time I came about 2 inches from taking over Rancho Cucamonga.

The New Age music I write today is not the same. I really play bass for more jazz fusion. Even though I did write a few Rock and Roll songs.

Hi all,
I have listed below some basic information about myself so you can have a better understanding who I am and what is important to me.

33 years of age.

6 feet tall.

225 lbs.

Hazel eyes.

Graduate of Etiwanda High School in Rancho Cucamonga, CA.

Interests: Music composition, playing my bass guitar, chess, surfing, skate boarding, and my favorite football team the Pittsburgh Steelers.

My early fight with mental illness: In my teenage years I did develop a drug problem, but looking-back-on-it, I believe it was my way of self-medicating. My mental illness started to develop around the age of 16. My parents thought I was a drug addict that wouldn't get help. They practiced tough-love until I was 18. They were informed by my psychiatrist at that point that my behavior was reflective of a long term mental illness and not drug abuse.

My later successes fighting mental illness: After many hospitalizations I have found a combination of drugs that make me feel better than I have felt in years. I should add that I now lead a very clean life (I do not take drugs, or drink alcohol.), a necessary criteria if you want your antipsychotic drugs to work effectively. Also having a strong purpose/passion for living is an invaluable benefit in your struggle with mental illness. I have found my passion and purpose with my music and song writing.

My diagnosis: Schizoaffective disorder. It is a general term covering those suffering from not only Schizophrenia, but also anxiety disorder, and depression.

What to do when mental illness hits close to you: If you or a loved one is facing this illness you will be able to provide the greatest amount of support if you become well educated on the topic. A good first step is to visit and then join The National Association for the Mentally Ill. I have added some additional links that can be of help to anyone suffering from mental illness or any other health related issues.

My Goals: To become a great bass guitar player and composer! Take a few minutes to visit my Original Music Page. Here you can download many of my original songs. These new songs have been divided into two albums. My first album is titled "Life" and my second album is titled "Image or Intelligence". I have also listed my personal favorites and a poll where you can vote on the song you like the most.

I was fortunate to be a part of a feature article titled "Shattering the Stigma" by Megan Myers published in the fall 2002 edition of a professional health magazine titled "One-The Integration of Healthcare & Technology". This article deals with a number of people that have been able to live successful lives even though they have suffered from some form of severe mental illness. Click on this link to see the magazine cover. Then move on to pages 1, 2, and 3. (BTW page 3 has a picture of me holding my bass).

I really would like to hear from you, so please email me and let me know a little about yourself.

A few other facts about myself:

First, I attained the rank of Yellow Belt in Karate.

Second, I have been working to improve my singing, and I am pleased to say that it has improved significantly since I recorded these songs.

Finally, I would like to thank my father, owner of The Raymond Sarrio Company, for hosting my web page.

I would like to give credit to two of my music teachers: Pebber Brown and Irving Diaz.

I would like to thank the 15,000+ people that have accessed my site since it was put online in 2000.

© Peter Sarrio

Source: Peter Sarrio: My Life & Music

Steve Morgan: Recovery & NAMI

2008-01-09T20:41:00.000-08:00

I am writing this letter as a plea for reconciliation amongst those of us who have psychiatric diagnoses, those of us who issue them, those of us who have family members with them, and those of us who work toward related policies. As we are all aware, there are multiple tensions that exist amongst differing organizations within the mental health world, but I truly believe that if we can all begin to have a compassionate conversation, we will find a healthy common ground between our sometimes conflicting ideologies.

I specifically wish to address NAMI.

NAMI does good work throughout the country. They have power and use it to push for more awareness and treatment of psychiatric disorders. Indeed, NAMI has the constituency and funding to invoke a lot of positive change in our communities, providers, and legislators. I respect the work that they do, and see their passion as a measure of their enormous care of, frustration with, and optimism towards the mental health system in general.

So, it is with respect for their efforts that I wish to challenge some of the fundamental assumptions that they promote, specifically about what "mental illness" is, and how it is best treated. I hope that by speaking from my heart, my plea comes off as an invitation for more dialogue around these important issues that are sometimes taken for granted.

I want to start off by sharing something that I wrote the other night...

I am an individual who was diagnosed with severe and persistent mental illness, struggled for many years to emerge, and now am healed and work in the mental health world.

This is what I wrote when reflecting upon my relationship to diagnosis and the popular information floating around about "mental illness":

When I believed that a chemical imbalance drove my everyday experience, I told myself, "I am Bipolar." When I learned that the chemical imbalance was only a part of me, I told other people, "I have Bipolar." When I discovered that a chemical imbalance has nothing to do with me, I realized, "I am Human."

I share these words with you as an illustration of how insight shaped my own journey towards wholeness and healing. Being diagnosed had the residual effect of transforming how I relate to the world and my experiences.

In the beginning, I sorted through the various phases of my past and tossed them into clinical categories, and it all seemed to make sense. I also began to see my everyday emotions and thoughts as the product of a chemical imbalance in my brain. My sense of self became infused with a deep uncertainty, and because I was at a loss for why I did not seem to fit into the world, I absorbed all of the literature and psychiatric declarations that I was in fact Bipolar.

After a couple of years, I slowly graduated my thinking to: "I have Bipolar," which was a product of learning about the principles of recovery and truly embracing the notion that my "mental illness" is a part of me, not the whole me. At that point, I learned about "managing my illness," and as a result, came to believe that my chemical imbalance was in fact treatable – especially through medications – though highly volatile if left to its natural course.

Throughout this time, I was a voracious reader of mental health material, but I had never explored the actual scientific literature from which the material claimed to emanate, nor had I read many alternative perspectives on "mental illness."

Then, one day, things changed. I met a man who had been diagnosed with schizophrenia, but no longer took medications. Moreover, he worked full time in a very challenging position, and was sharp, compassionate, and full of humanity. Certainly, he did not seem to be experiencing "symptoms," and he didn't seem to be "in remission" either. He seemed healed.

As things go, I began meeting more and more people who had experienced profound suffering in their lives – been traumatized, diagnosed, hospitalized repeatedly, stigmatized, and on and on. But these people were well now. And not just "stabilized." But "well" in the sense of having emerged from a dark void with wisdom, clarity, and deep compassion; "well" in the sense of working long and hard hours altruistically. And again, they were not taking medications.

Slowly, I started to investigate some of my long-held assumptions, and slowly, I started to wake up to a different reality, one in which I started using terms like "experiences" instead of "symptoms"; "trauma" instead of "disease"; "problems" instead of "illness"; and "neuroplasticity" instead of "chemical imbalance".

In my inquiry into the scientific literature, I was shocked to find that many of the messages that I had received about "mental illness" were in fact highly presumptuous, and in some cases, driven by economics. For example, the notion of a "chemical imbalance" is suspect and misleading, and certainly not supported by reliable science. In fact, in this month's Scientific American Mind – a pop-culture psychology magazine – you can read, "The imbalance to which the SSRI ads refer is a deficit of the neurotransmitter serotonin at receptor sites in the brain. Such advertising is misleading, however, and does not reflect scientific findings. There is no clear scientific evidence that neurotransmitter deficits cause depression or that there is an optimal "balance" of neurotransmitter levels in the brain."

There may be a million people saying that mental illness is caused by a chemical imbalance in the brain, but that doesn't make it true. The truth is, in the scientific research, there has never actually been a chemical imbalance observed or measured. It is all inferred, and the inference is based upon a dangerous line of reasoning: "there is a form of circular reasoning that goes: if SSRIs are helpful in alleviating depression, and if they do change the "chemical imbalance," then depression must be caused by that imbalance. Inferring causality from the success of a treatment is frequently a flawed endeavor: aspirin is effective for headaches, but no one would seriously claim that headaches are caused by a deficiency of aspirin."

As my awareness expanded, I started rethinking the notion of "mental illness" as "chronic" and "persistent". Certainly, what is called bipolar disorder and schizophrenia can show up for many years, but if you look at the research, you will find that a majority of individuals in longitudinal studies are shown to significantly improve or recover entirely, and many without medications. How can "schizophrenia" be "chronic" and "persistent" when there are so many people out there who have emerged from it entirely? In fact, doesn't the evidence suggest just the opposite, that the chances are, you'll recover (and not just "recover" in the sense of "illness management," but in the sense of having a satisfying life without psychiatric experiences)?

The link to trauma in the development of "mental illness" is even more shocking, with some studies indicating that over 90% of people diagnosed with SPMI having had experienced trauma. If this is the case, can we really say that "mental illness" is "just like diabetes," as if it were all a physical flaw, and a permanent one at that? If trauma in fact triggers "mental illness" in the brain, wouldn't it be more appropriate to say that the illness and the disease are trauma, and that the symptoms of the disease are the plastic brain changes that we see? My point here is that popular messages about "mental illness" have stripped it of its context, thereby making it a brain error, when in fact, the brain is highly malleable, and could be thought of as reflecting experience as much as creating it.

What's most surprising in the scientific literature is that which surrounds the use of medication. Let me be clear in saying that medication can be helpful to individuals, and that some individuals attribute medication to saving their lives. But, there is plenty of evidence suggesting that medication should not be used by all people, and that with some people, it may actually hinder recovery. Thus, if we are to make any statement about medication, we should say that it is a tool that some people find useful, and that some people don't. In an ideal world, the scientific literature would inform psychiatric practice, meaning that just because someone shows up on the sofa with "symptoms" of a "severe and persistent mental illness" doesn't mean that s/he will be given medicine. But have you ever heard of a psychiatrist choosing not to administer medication to someone diagnosed with schizophrenia?

I no longer identify myself with Bipolar, though others still do, as I was recently rejected to a Meditation Retreat based upon my past psychiatric history and the "risk" that they assumed I pose. I am not in denial; nor am I in remission. Like all people, I cannot say where I will be emotionally in a year, but I do believe that I will be able to handle whatever happens, for I am now learning how to be fully human, not just the manager of my brain chemicals.

In terms of NAMI, I am concerned with some of their positions on "mental illness", which seem to be highly medical and follow a line of reasoning that medication is fundamental. As a brief example of such material, here are some statements from their handout on Bipolar Disorder that I find troubling (I have offered my counterpoint to each):

1. "The greatest risk in bipolar disorder is not getting treatment, or refusing treatment because of lack of insight into, or inability to resist, the lure of mania."

a. This is untrue for many of us. Many of us have actually been hurt by treatment, or experience great benefits from what is labeled "mania." I once made a 14-song album in a month and played every instrument on it during a period of "mania." The "lack of insight" declaration is arrogant and assumes that doctors know best, as opposed to allowing for people who actually have these experiences to define whether or not they value them. Also, many people "refuse treatment" because they find the treatment harmful, not because of "lack of insight" or the "inability to resist, the lure of mania".

2. "Bipolar disorder is a complex medical illness of the brain."

a. This statement strips "Bipolar disorder" from its context. Nothing happens in a vacuum, especially human experiences. The brain responds to the environment by literally changing shape, so that trauma actually physically alters the brain. If this is so, how can we call "Bipolar disorder" a "complex medical illness of the brain" as opposed to a reaction to trauma? Personally, I have found "Bipolar disorder" to be a "Spiritual Journey" more than anything else, and I know of many, many other individuals who share the same opinion. We would like our voices to be included in this ongoing dialogue, not to be told what we have or are, especially given the lack of scientific evidence.

3. "While no one knows the exact cause of bipolar disorder, most scientists believe that bipolar disorder is likely caused by multiple factors that interact with each other to produce a chemical imbalance affecting certain parts of the brain."

a. Again, the "chemical imbalance" theory is highly manipulative of the science we do have. Furthermore, much of the research into such theories is actually paid for and sponsored by the pharmaceutical companies, creating an obvious conflict of interest. It should be noted that an actual chemical imbalance has never been observed.

4. "Bipolar disorder is a chronic condition, much like diabetes. Because periods of remission are sometimes complete, but are often complicated by persistent symptoms, bipolar illness requires preventive maintenance treatment as well as acute treatment, ongoing medication management, and close monitoring during periods of remission."

a. "Bipolar disorder" is nothing like diabetes. For one, "Bipolar disorder" is often not chronic or "everyday", as scientific studies show again and again. Second, "Bipolar disorder" is a highly subjective experience that is culturally defined, whereas diabetes is pretty much agreed upon around the world as a disease and as unwanted. Third, "Bipolar disorder" does not require ongoing medication management, as many of us do not take medications and are clear and well.

5. "Your management plan should include attention to lifestyle, stress management, supports, and also medication options."

a. This statement says that my management plan "should" include medication options. No, it may include medication options. This statement should be followed with information about the number of people who do not respond to medications or who prefer not to take them to allow for the reader to understand that he or she does not have to take medications to be well.

6. "While medication is one key element in successful treatment of bipolar disorder, psychotherapy, support groups, and education about the illness are also essential components of the treatment process."

a. The first part of this statement, that medication is "one key element" in successful treatment, is again presumptuous and declarative that medications are essential.

7. "The most useful psychotherapies generally focus on understanding the illness, learning how to cope with it, and changing ineffective patterns of thinking or interacting."

a. This is untrue for many of us. I went through 9 months of therapy with a man who intentionally did not use the term "Bipolar," and with whom I learned to successfully re-transcribe my experiences into meaningful ones as opposed to chemical ones. In fact, I just heard a recent study presented during a SAMHSA teleconference that "Illness Insight" may actually be detrimental to recovery, in that it often leads to self-stigmatization, which was certainly the case for me.

8. "The ideal course of research is to identify medication that, used alone or in combination, effectively prevents episodes and offers maximum periods of symptom-free maintenance coverage during periods of remission."

a. Where does this information come from? I think that the "ideal course of research" should be to find treatments that work, not just medication treatments. Unfortunately, so much money is given by pharmaceutical companies to research that there is little in the way of "alternative treatments," which many of us claim have been the most helpful.

9. "People living with bipolar disorder should remember, however, that the recovery they attain usually depends in large part on the medications they are taking and their other health and wellness strategies."

a. This is a presumptuous statement and does not reflect the majority of interactions I have with "recovered" individuals. Most of us would attribute the "recovery we attain" to things like meaning, spirituality/faith, employment, human connection, peer support, personal responsibility, and so on, the same mechanisms that bring all human beings peace and joy. In our recovery, medication may or may not be helpful, but many of us would not say that our recovery has depended in large part on it. I see that the second half of this statement says "other health and wellness strategies," but again, the wording indicates that medication belongs in a class by itself, as a fundamental cornerstone to healing.

Too often the rhetoric of passionate debates skips over solutions, thus, I have listed them here in an attempt to be proactive as opposed to just long-winded. Here are some of my proposed solutions:

1. NAMI consider changing some of its language.

a. I am specifically concerned about the use of medical language. No one has a perfect solution to getting the language surrounding mental health "just right." We must all be creative in this process. I have found a great way to start challenging my own medically- induced worldview is by refusing myself to use the word "symptoms." Being a worker in the mental health world, I have to communicate with others, so I have consequently started talking about thoughts, emotions, and behaviors just as they are – thoughts, emotions, and behaviors, as opposed to a detached and bland reductionism of human experiences to "symptoms" of an "illness." I find that by doing this, I am doing myself, whomever I'm speaking to, and certainly anyone I am describing, a huge service. Indeed, by describing specifics, I am more clearly communicating. I am also re-humanizing some of the experiences that people with psychiatric diagnoses have. By saying something like, "Dave says he is feeling scared" instead of "Dave is symptomatic" or "Dave is paranoid," I am changing the way in which my colleagues and I perceive and communicate about other peoples' life experiences. Some other great solutions that I have heard: people using the term "big emotions" and "huge feelings" to describe what are traditionally thought of as "symptoms." I myself say things like "really hyper" or "full of energy" instead of "manic," and "I am with sadness" or "I am feeling vulnerable" as opposed to "I am depressed."

b. Additionally, the term "mental illness" may want to be revisited. This is, of course, tricky and new territory, but there are many alternatives that people are using to compensate for "mental illness." I say "psychiatric experiences" – I feel that term is ambiguous enough to encapsulate the people who feel harmed by psychiatry itself – and talk about "individuals with psychiatric diagnoses" as opposed to "adults with mental illness." By saying "individuals with psychiatric diagnoses," I feel that I am not claiming that the individual "accepts" or is burdened by an "illness," but simply that s/he has been given a diagnosis, whatever s/he feels about it. In that sense, I think it differentiates the individual from the diagnosis and somewhat severs the assumed relationship. Other people say "adults with psychiatric disabilities" or "people diagnosed with psychiatric disorders" and so on. As for "mental illness" itself, there are some people who refer to it as "spiritual emergency" or "spiritual emergence," or terms as clear as "mental health issues" or "mental health problems."

[i. Please consider revamping the repeated and emphatic use of "illness" to describe crises.

ii. Also, Shery Mead has written some excellent work on Worldview and Language: www.mentalhealthpeers.com]

c. On a whole, NAMI may want to emphasize less on the brain and more on environmental and existential conditions that lead to psychiatric experiences. Of course, there could certainly be more material on the impact of trauma.

d. I personally feel that the comparisons between "mental illness" and "diabetes" or other physical diseases are flawed and not supported by science.

2. NAMI add conflicting opinions to its existing literature and Provider Education program.

a. I may be going out on a limb here, but wouldn't it be wonderful to read something like this (currently in the existing NAMI literature):
"While no one knows the exact cause of bipolar disorder, most scientists believe that bipolar disorder is likely caused by multiple factors that interact with each other to produce a chemical imbalance affecting certain parts of the brain."
Followed by this (not currently in the existing NAMI literature)
"However, there are many other people, including individuals who have been diagnosed with bipolar disorder, who would claim otherwise, instead defining the cause as related to life experiences, spiritual crises, past trauma, or various cultural expectations."

In fact, my challenge to NAMI is to include as many "consumer" voices and opinions as those of scientists. That would allow for people who are reading the materials or taking the Provider Education course to be introduced to an array of models for understanding human experience, which in fact would be empowering to those many individuals who currently feel marginalized by the "brain disease" theories that they find disagreeable.

3. NAMI change their overall emphasis of medication in treatment.

a. First and foremost, NAMI could introduce statements such as "Medications do not work for everyone" and "Some people find recovery without medications" into the existing literature and dialogues. They could even back the statements up with current scientific research.

b. Also, please consider removing statements like "People living with bipolar disorder should remember, however, that the recovery they attain usually depends in large part on the medications they are taking and their other health and wellness strategies" that feel – to me – paternalistic, and that in my experience are not entirely true.

c. NAMI could consider some of the shifts of consciousness in medication use promoted by people like Pat Deegan (www.patdeegan.com). I cannot justly speak for her, but she has basically introduced the concept of "using medication" as opposed to "taking medication." In this way, a person who is prescribed medication uses it as a tool as opposed to simply taking it passively. The emphasis for medication use is that it should be the person's choice, and that the person should feel empowered with it to help in his or her recovery, not ashamed or passive.

d. NAMI may want to revisit the use of literature from pharmaceutical companies that emphasizes the necessity of medication use. While much of this literature is seemingly helpful and useful, if the literature proclaims that medicine is a necessary component to recovery, then it is promoting a one-sided belief system that many of us see as damaging.

4. NAMI mention in its literature and at its meetings the scientific studies that demonstrate that a majority of individuals diagnosed with schizophrenia significantly improve or recover entirely, many without medications.

I was very pleased with the two speakers at the recent NAMI-VT annual conference who cited Courtney Harding's work! These studies are powerful, scientific, and dramatically challenge our presumptions about the course and outcome of diagnoses such as schizophrenia. Here is a great place to start for some research and perspectives into the many faces of recovery: Repository or check out this quick review of studies: Evidence

5. NAMI consider promoting alternative treatments at conferences.

a. At the recent NAMI-VT conference, a representative for Abilify had a booth and handed out materials. I do not see the point in having a drug rep at an annual conference, but if NAMI wishes to have drug reps in the future, they would be doing a great service to the term "fair and balanced" by having reps from health clubs, alternative therapeutic communities (which, to NAMI VT's credit, there were some reps from Spring Lake Ranch, which I presume is "alternative," though I am not too familiar with them), naturopathic facilities, consumer/survivor/ex-patient organizations, local community interests, spiritual communities /organizations/facilities, and so on. It would be too idealistic to suggest having all of these types of peoples represented at every conference, but I think NAMI could at least consider having some other options available.

6. NAMI keep away from highly political and moral/ethical controversies such as involuntary treatment.

I am writing this proposed solution strictly from my heart, though I can point to some rational reasons why NAMI would benefit from staying out of advocacy on involuntary treatment. The most obvious reason is that these issues are highly emotional and dear to many people who have in fact experienced things such as involuntary treatment. Thus, when NAMI gets involved, or promotes people who advocate for one side only, NAMI isolates a lot of people, and quite frankly, a lot of anger and resentment results. NAMI has a large constituency that makes it very powerful, and I ask that it please be mindful of this power when working on legislative levels. NAMI did not begin from people with psychiatric diagnoses, and while many of us are connected nowadays to NAMI, the organization still doesn't fully represent our many voices. Thus, while advocates at NAMI may see their work on issues such as involuntary treatment as kind and compassionate, they may find that the people for whom they are advocating actually strongly disagree with their positions and stances. It is so important to many of us who have experienced some of the uglier sides of mental health treatment that our voices are heard and respected, and that we are not unfairly represented by large organizations who may be making skewed though well-meaning presumptions.

I would like to end my list by saying that I am not by any means "the voice" for those of us who may have concerns with some of NAMI's messages/practices, nor do I feel hardly able to represent the many brilliant and beautiful solutions that people are offering as alternatives. In my proposed solutions here, I am simply offering the best list that I can think of on a given night, so I want to attest to the fact that is just my opinion! The best that we can all do is continue to research, ask questions, and listen to one another. I hope that others who have differing solutions will also either speak up or be engaged to be included in any process of reform.

Thank you for your time and consideration,

© Steven Morgan

Source: A Challenge for NAMI National

See also: Vermont Recovery

John Nash: Beautiful But Not Rare, Recovery

2008-01-07T17:40:00.000-08:00

The end of "A Beautiful Mind," the Oscar-nominated movie based loosely on the life of Nobel Prize winner John Forbes Nash Jr., depicts the Princeton mathematician's emergence from the stranglehold of paranoid schizophrenia, the most feared and disabling of mental illnesses. Moviegoers who have watched the cinematic metamorphosis of actor Russell Crowe “from the disheveled genius who furiously covers his office walls with delusional scribblings to the silver-haired academic perfectly at home in the rarefied company of fellow laureates in Stockholm“ might assume that Nash's recovery from three decades of psychosis is unique.

But mental health experts say that while Nash's life is undeniably remarkable, his gradual recovery from schizophrenia is not.

That contention is likely to surprise many people, including some psychiatrists, who continue to believe the theory, promulgated a century ago by Sigmund Freud and his contemporaries, that the serious thought and mood disorder is a relentless, degenerative illness that robs victims of social and intellectual function, invariably dooming them to a miserable life in a homeless shelter, a prison cell or, at best, a group home.

Psychiatric researchers who have tracked patients after they left mental hospitals, as well as a growing number of recovered patients who have banded together to form a mental health consumer movement, contend that recovery of the kind Nash experienced is not rare.

"The stereotype everyone has of this disease is that there's no such thing as recovery," said Washington psychiatrist E. Fuller Torrey, who has written extensively about schizophrenia, an illness he has studied for decades and one that has afflicted his younger sister for nearly half a century. "The fact is that recovery is more common than people have been led to believe. . . . But I don't think any of us know for sure how many people recover."

The notion that Nash's recovery is exceptional "is very pervasive even though the facts don't support it, because that's what generations of psychiatrists have been taught," said Daniel B. Fisher, a board-certified Massachusetts psychiatrist and activist who has fully recovered from schizophrenia for which he was hospitalized three times between the ages of 25 and 30.

"Many of us who have spoken about our recovery are confronted with the statement that you couldn't have been schizophrenic, you must have been misdiagnosed," added Fisher, 58, who holds a PhD in biochemistry and went to medical school after his hospitalizations.

The belief that recovery from schizophrenia occurs only occasionally is belied by at least seven studies of patients who were followed for more than 20 years after their discharge from mental hospitals in the United States, Western Europe and Japan. In papers published between 1972 and 1995, researchers found that between 46 and 68 percent of patients had either fully recovered “they had no symptoms of mental illness, took no psychiatric medication, worked and had normal relationships“ or were, like John Nash, significantly improved but impaired in one area of functioning.

Although the patients received a variety of treatments, researchers speculate that the improvement may reflect both an ability to manage illness that accompanies age coupled with the natural decline, beginning in the mid-forties, in the levels of brain chemicals that may be linked to schizophrenia.

"One reason nobody knows about recovery is that most folks don't tell anybody because the stigma is too great," said Frederick J. Frese III, 61, who was hospitalized 10 times for paranoid schizophrenia in his twenties and thirties.

Despite his illness, Frese, who considers himself "definitely not fully recovered but in pretty good shape," earned a doctorate in psychology and was, for 15 years, director of psychology at Western Reserve Psychiatric Hospital in Ohio, the state's largest mental hospital. Frese holds faculty appointments at Case Western Reserve University and Northern Ohio Universities College of Medicine.

He has been married for 25 years and is the father of four children as well as past president of the National Mental Health Consumers Association. These achievements are hardly consistent with the prognosis Frese was given at 27, when a psychiatrist told him he had a "degenerative brain disorder" and would probably spend the rest of his life in the state mental hospital to which he had recently been committed.

© Sandra G. Boodman

Source: Beautiful But Not Rare Recovery

The movie "A Beautiful Mind" portrays the Nobel Prize winning mathematician John F. Nash, Jr., as having recovered from schizophrenia as a result of taking newer medications. This distorted take on the story of Nash's recovery has a few critics wondering whether drug company promotion now includes product placement in movies. Nash stopped taking anti- psychotic drugs a good two decades before the newer versions became available.

In fact, Nash's slow recovery over the course of many years appears to have been drug-free, according to his biographer Sylvia Nasar, whose book of the same name forms the basis of the movie. "Nash's refusal to take the anti-psychotic drugs after 1970, and indeed during most of the periods when he wasn't in the hospital during the 1960s, may have been fortuitous," she wrote. "Taken regularly, such drugs, in a high percentage of cases, produce horrible, persistent symptoms like tardive dyskinesi-- stiffening of head and neck muscles and involuntary movements, including of the tongue--and a mental fog, all of which would have made his gentle re-entry into the world of mathematics a near impossibility." (A much lower rate of these side effects is the chief advantage of the newer medications.) Nasar calls Nash's recovery "not unique" but "relatively rare," suggesting that the word remission might be more accurate.

This commonly accepted medical viewpoint was contradicted in a commentary for The New York Times, entitled "Beautiful Minds Can Be Reclaimed." Psychologist Courtenay M. Harding objected to the movie portrayal of Nash's recovery as unusual, claiming that many people with schizophrenia, perhaps more than half, do significantly improve or recover. "Many can be symptom-free without medication. They improve without fanfare and frequently without much help from the mental health system," she wrote, "Many recover because of sheer persistence at fighting to get better, combined with family or community support."

The research Harding cites to support her statements was conducted in the mid-1950s when Thorazine was the new anti-schizophrenia drug. George Brooks, clinical director of Vermont State hospital, observed that Thorazine was not enough to allow many of the patients to leave the hospital. He designed a flexible support system that began in the hospital and extended into the community so that discharged patients could continue to receive social support. Thirty years later, a follow-up study of the people who had been through this program found that 62-68% were either significantly improved or fully recovered. The most amazing finding, says Harding, was that 45% of all who participated in Dr. Brooks's program no longer had signs or symptoms of mental illness three decades later.v

© Healthfacts: Maryann Napoli

Source: Movie Misrepresents Recovery of John F. Nash Jr.

Ron Coleman: Recovery - An Alien Concept

2008-01-06T20:23:00.000-08:00

There have been many studies in the USA and other countries that point out that treatment - if practiced in a way that provides patient training leads to a normal life style - that includes jobs, education, and social skills training and relieves the guilt and loneliness associated with these conditions - then even the lowest level of schizophrenia can change and be reduced or eliminated from the lives of those who suffer this condition. The tragedy is that somehow - professionals - all over with some exceptions do not believe this is a reality.

What’s wrong with them?

Source: Why Can't They Recover?

I was brought up in a working class Roman Catholic family and like many boys my age I went through my religious phase in my eleventh year of life. I went to see our parish priest and told him that I wanted to become a priest. Our parish priest at this time was getting on in years and was one of the old school having said more masses in Latin than in English. He was also without doubt a man of God who saw himself as a shepherd and us as his flock. When one among his flock stated they wanted to become a priest, he took them seriously. He took my desire to become a priest seriously and once a week I met with him and two other boys who had also stated a desire to enter the priesthood. In these weekly meeting we would discuss further the teachings of the church, the role of the priest and whether we thought our calling to the priesthood was real. After one such discussion one of the boys stopped coming as he felt he was not being called but was trying to please his family. The two of us that remained were undeterred and continued on with our instruction, fully committed to the idea that some day we would become priests.

These were happy days for me, I was preparing to serve God and I had all the enthusiasm an eleven-year old could muster for my coming tasks. The day that changed my life started the same as any other I went to school and after school I headed for the chapel house for instruction. The housekeeper answered the door, she was near to tears as she told us our parish priest had taken seriously ill earlier in the day, although he survived he was never to return to the parish. (I often wonder what would have happened had he never became ill. Would I now be a priest?) Shortly after this happened a new parish priest arrived, (I will call him Adrian) at first everything was business as usual and I soon relaxed into my normal routine. The next three months went by without incident as far as I was concerned though I noticed that a lot of the altar boys were leaving service before they normally would age wise.

I was very quickly to find the reason why when after Mass one day Father Adrian asked me to come and see him in the vestry, I sauntered over without any thought as to why he wanted to see me after all he was a priest. When I arrived at the vestry Father Adrian asked me to sit down it was at this point that things started to change. He started by asking me if I had any sins that I needed to confess, when I said I did not he called me a liar and said that he needed to pray for me so that I would be forgiven. He knelt beside me and started praying aloud he was saying something about me leading him into sin and that I was evil. As he continued to pray he started moaning and groaning, I was aware that his hand was slowly moving up my leg this went on until he was touching my penis. As this continued I was aware of becoming a spectator in what was happening to me. I became aware of other things around me like the candles that were burning too brightly and his purple vestments were if anything even more purple than usual. I was there but not there those who have been abused will know what I mean, much later in my life I discovered that this is called dissociation and it is the most common form of self-preservation of those who are abused. At the time it did not feel much of a defence to me for inside I screamed at him to stop I also screamed at God for protection but either God was deaf or I never screamed loud enough because he never defended me. When it was over Adrian told me that no one would believe me if I told them what had happened. I left the vestry in a daze and never told anyone what happened that day or the many other days that it was to continue for.

I was trapped for a while within this cycle of abuse, after all who would believe me? Adrian was a priest he stood between people and God, he represented Christ on the earth, the forgiver of sins, the good shepherd. I was an eleven-year old boy, a dreamer and to say anything would brand me a liar. My relationship with this God that I thought I believed in was over. The abuse continued for a few months until I found from somewhere the strength to turn my back fully on the church and with it God. My spiritual and religious phase was over. Time has taught me that this is the pattern with abusers that they are often in positions of trust in the community and they use this position to ply their evil trade in misery and pain. Experience has taught me that the failure to deal with abuse means that the abuse will stay with you throughout your life and in many ways shape your life in terms of future relationships. This is especially true when it comes to trusting friends or life partners. This event more than any other was to shape my life or should I say illness.

If this was the only traumatic life event that I was to go through I believe that I would have survived it and got on and led a fairly normal life. As is often the case it was when I thought that I had turned a corner that life dealt me its foulest hand. As I grew up into adulthood I put the abuse behind me or so I thought and got on with the business of living, it was while I was getting on with life that I met Annabelle. I met her one Saturday night in the pub after I had been playing rugby, when I saw her I knew what love at first sight meant. Being psychotic has nothing on being in love, love is without question the true psychotic experience. Annabelle was an artist, sculpture was her main medium though also she painted and did sketching. In the short time that we were together she taught me many things, she taught me what love was, how to make love and most importantly how to love life. She also taught me to appreciate the arts such as classical music, opera and theatre. With her I began to discover a spiritual dimension to my life though I hasten to add that this was not a religious thing.

Our relationship developed quickly from the torrid passion of new lovers to the passion that consumes those who are indeed soul mates. We spent as much time as we could in each others company often we would sit up through the night talking and planning as couples do. We were planning our life together, this was normality at its best. But like all normality madness was lurking waiting its chance to pounce and consume us and then one day it did.

Like the day I met Annabelle the day our relationship ended was a Saturday, I had been playing rugby and went home with something for both of us to eat. When I got in I called to Annabelle asking her if she wanted tea or coffee, she didn't reply. I went into the living room and she was lying on the couch I asked her again and still got no reply I gave her a shake but she would not wake up. I rushed out of the house to a neighbour and asked them to phone an ambulance. They rushed her to hospital and put her on a life support machine she did not make it and three days later she was pronounced dead. Annabelle had taken her own life I never really found out why but I know that I blamed myself, I don't know why I blamed myself though it was to be many years before I stopped doing so.

When she died a large slice of me died also, I swore that never again would I get emotionally involved with anyone. Like many others I suppressed all of my emotions about Annabelle and her death. I continued on with a semblance of existence that others called life. Like the abuse I choose to pretend it never happened and like the abuse my feelings of grief and loss and hatred of the world festered inside growing and growing waiting for their chance to devour me.

The time came for my emotions to overcome me when I had an accident on the rugby pitch that put me out of the game forever. Barely weeks had passed since I was discharged from hospital (still on crutches) when I heard a voice for the first time. I was in my office waiting for the computer to deliver the results of some data I had inputted when a voice behind me said that I had done it wrong. I looked behind me but there was nobody there. I stopped what I was doing immediately, went to the pub and got drunk, I remember thinking that I was stressed and needed a break.

Within a short six months period the voice had been joined by other voices that spent most of the day screaming at me. I could not focus on my work and the only relief I got was when I had drunk myself into oblivion. Eventually my boss told me I had four weeks to get my act together. Four weeks later I was out of work, losing my home and on my way (though I didn't know it then) to my first encounter with the psychiatric services. In double quick time I became a pitiful sight with an unkempt beard, more often than not dirty clothes and more and more frequently drunk rather than sober.

Eventually I could not take any more and I phoned the Samaritans and after much talking went to see my GP. He ended the consultation with the words "I am going to arrange for you to see a specialist" fine I thought that will take a while, what a surprise I was in for. He took me out of his consulting room and asked me to wait in a small side room in the surgery a few minutes later he returned with a nurse who he told me was going to look after me while he arranged an appointment with the specialist. The only thing I remember about that wait with the nurse was how little she spoke it was as if she was frightened to be in the same room as me.

My short wait ended some three hours later when the GP returned with another man it turned out that this man was the specialist that the GP had contacted. The specialist introduced himself and told me that he was a psychiatrist and that he had come to see me since my GP was concerned about me. It was here that I went through my very first one-hour present state examination, after the interview the psychiatrist told me I was ill and it would be better if I came into hospital for a short time. I told him where to shove his hospital and fled the surgery, three days later I was dragged into the Royal Free hospital where I once again was subjected to the psychiatric interview with the conclusion that I was suffering from schizophrenia.

The psychiatrist there told me that if I took medication then my voices and other symptoms would be eradicated and I would get better. He told me that the medication took about two weeks to work and in no time at all I would be back to something like my old self, he was wrong. Two weeks went by and if anything I was worse not better so I stopped taking the medication and decided to leave. This was when I discovered the real power of the system I was put on a section two of the mental health act, which held me for up to twenty-eight days against my will. A section three this is a treatment order, which allowed them not only to detain me but also to medicate me forcibly if necessary, followed the section two in quick time. This became my new way of life a constant round of illness with short periods of respite (not wellness) in the community.

Over the next ten years I was to spend six of them as an in-patient almost all of them on a section three. In this time I had nearly forty sessions of ECT, tried nearly every neuroleptic on the market and was denied psychological interventions on numerous occasions. Despite the most vigorous of treatment regimes the voices I heard remained as virulent as ever, medication gave me no respite and eventually the volume of medication I was taking was so high that I became little better than a zombie who viewed life through a legalised drug induced smog.

The system did teach me things the main one being how to be a good schizophrenic, I do believe that we learn much about how to be mentally ill in the system. Ten years were to pass before I found a way out the system by then they (the system) had created a perfect schizophrenic. Now on to recovery.

The stepping stones to recovery
Any recovery journey has a beginning, and for me the beginning was my meeting with Lindsay Cooke my support worker, it was her who encouraged me to go to the hearing voices self-help group in Manchester at the start of 1991. It was her not me who believed that a self-help group would benefit me. It was her who saw beneath my madness and into my potential, it was her faith in me that kick started my recovery and it is to her that I owe an enormous debt.

There are other essentials required for a journey to be successful; one of these is the ability to be able to navigate to your desired destination. In this I was fortunate not to have one navigator but many. In this section I will mention only five of them. The first is Anne Walton a fellow voice hearer who at my very first hearing voices group asked me if I heard voices and when I replied that I did told me that they were real. It does not sound much but that one sentence has been a compass for me showing me the direction I needed to travel and underpinning my belief in the recovery process.

The second is Mike Grierson; Mike was the person who navigated me through my first contact both with my voices and with society. He encouraged me to go out and socialise with people who had nothing to do the psychiatric system. He also took me to places like the cinema and classical concerts which reawakened my love for the arts. Mike was not only my social navigator he was also one of the people who helped me to focus on my voices in a way that allowed me to explore my experience.

The third and fourth are Terry McLaughlin and Julie Downs, Terry and Julie were my navigators back to normality, they rekindled my interest in politics and took me into their family without reservation. It was with Terry that I developed much of my early thinking around training and mental health. With Julie, I developed training packages and now with my wife Karen I am continuing to develop training packages, which we use to explore the world of mental health.

My fifth person is Paul Baker another of my navigators on the road to recovery, Paul who brought the hearing voices network to the United Kingdom encouraged me to become involved in the network, then when the time was right handed over the development of voices groups to me. To all of my navigators Anne, Mike, Terry, Julie and Paul I owe my sanity.

Navigators require a map or a plan from which to navigate, and I have been fortunate for the people who were my map makers, were Patsy Hage, Marius Romme and Sandra Escher. I do not believe that these three fully understand what they have done. Little did Patsy know when she read the book by Julian Jaynes that the questions this would make her ask were going to affect so many people indeed It is because of her questions that the hearing voices network and resonance and other networks throughout the world exist today. Whether she wants it or not she has a premier place in the history of the hearing voices movement.

Sandra Escher is without doubt the person who made sure that ordinary people could understand the maps that were being made. Her ability to put across the message in language that is accessible to everyone has meant that their work has not remained in the world of academia but has been used by voice hearers from the very beginning. Sandra and Patsy have played a very important part in my recovery.

The final map maker is Marius Romme, Marius who in his own words is a traditional psychiatrist, is without doubt one of the greatest map makers who it has been my good fortune to know. When he listened to Patsy Hage and explored what she was saying it was then in my opinion he stopped being a traditional psychiatrist. When he asserted in public for the first time that hearing voices was a normal experience and that voice hearing was not to be feared he stopped being a traditional psychiatrist. When he continued his work despite being ridiculed and criticised by his peers he stopped being a traditional psychiatrist and in my opinion became a great psychiatrist.

To Patsy Sandra and Marius I only owe one thing and that is my life.

Up to this point I have mentioned nine people who have been participants in one way or another in my recovery journey and therein lies the first stepping stone to recovery; people.

If I were to name all the people who have played a part in my recovery the list would be massive. The other thing about this list would be the fact that the majority on it would not be professionals. One of my fundamental beliefs about recovery is the premise that recovery cannot and does not happen in isolation. Nor can it happen if all our relationships are based on a professional and client interaction. Recovery is by definition wholeness and no one can be whole if they are isolated from the society, in which they live and work.

For many years I had argued that there is no such thing as mental illness this has lead me into some interesting debates with people over the last few years. One of these debates was with Marius Romme, during this discussion it became clear, that Marius was not arguing a case for biological illness, what he in fact was saying was that illness could be expressed as a persons inability to function in society. This I can accept as it means that recovery is no longer a gift from doctors but the responsibility of us all.

This raises the question of whether society is prepared to take any kind of responsibility for the recovery of people with mental health problems. I am of the opinion that they will not, for in our sophisticated culture we too have bought into the notion of a biological explanation for mental health. I suppose that my expectations of society might appear to be to high, but that must be seen in the context of those societies that do accept responsibility for those amongst them who become mad.

For Example in the Aboriginal Culture when someone goes mad the whole tribe comes together to discuss what the tribe has done to cause the person to be mad. Can you imagine this happening in our cultures? I think not. When someone goes mad in our culture it is off to hospital with them. It is not a gathering of the local community that gets together to decide what is wrong with the community. It is a ward round made up of so called experts who get together often without the person concerned being present who decide both what is wrong with the client and how it will be treated. This scenario, alas all to familiar, does not hold out much chance of recovery for the client. It is an impersonal rather than a person centred way of approaching the problem. Within this scenario recovery is objective not subjective and the person is no longer a real factor in the process.

If people are the building bricks of recovery then the cornerstone must be self. I believe without reservation that the biggest hurdle we face on our journey to recovery is ourselves. Recovery requires self-confidence, self-esteem, self-awareness and self-acceptance without this recovery is not just impossible it is not worth it.

We must become confident in our own abilities to change our lives; we must give up being reliant on others doing everything for us. We need to start doing these things for ourselves. We must have the confidence to give up being ill so that we can start being recovered. We must work at raising our self esteem by becoming citizens within our own communities despite our communities if need be. We are valued members of our societies and we must recognise our value. We need to recognise our own faults the system may have created our diagnoses, but often it is ourselves who reinforce it. We need to be aware of our learned behaviour, this should be part of our old lives. We need to change those behaviours that still trap us in our roles as patients. We need to accept and be proud of who and what we are, I can honestly say my name is Ron Coleman and I am psychotic and proud. This is not a flippant statement, this is a statement of fact.

I am convinced that when we grow confident about who and what we are; we can then be confident about who and what we might become. For me these four selfs; self-confidence, self-esteem, self-awareness and self-acceptance are the second stepping stone on the road to recovery.

The third step is closely related to the second and it is rooted in our own status. I believe that we ourselves have a great deal of say in our own status. We can choose to remain victims of the system, we can choose to continue to feel sorry for ourselves, we can choose to remain the poor little ill person who requires twenty-four hour care from professionals. On the other-hand we can choose a different direction, we can choose to stop being victims and become victors, we can choose to stop feeling sorry for ourselves and start living again, we can choose to stop being the poor little ill person and start the journey of recovery. This for me is the third stepping stone choice. When we thought of ourselves as ill it was easy to let others make our choices. The recovery road however demands that we not only make our own choices but that we take responsibility for all our choices good and bad. As we make choices we will make mistakes, We must learn to see the difference between making a mistake and having a relapse. For it is the easy option to go running back to the psychiatric system when we make mistakes. Rather than face our own weaknesses we fall into the trap of blaming our biology rather than our humanity. If people are the building blocks of recovery and self is the cornerstone then choice is the mortar that holds the bricks together. There is one other stepping stone in the recovery process and that is ownership. Ownership is the key to recovery, we must learn to own our experiences whatever they are. Doctors cannot own our experiences, psychologists cannot own our experiences, nurses, social workers support workers, occupational therapists, psychotherapists, carers, and friends. Even our lovers cannot own our experiences. We must own our experiences. For it is only through owning the experience of madness can we own the recovery from madness.

The journey through madness is essentially an individual one, we can only share part of that journey with others, most of the journey is ours and ours alone. It is within ourselves that we will find the tools, strength and skills that we require to complete this journey for it is within ourselves that the journey itself takes place.

Recovery has become an alien concept, yet nothing I have talked about so far is based on rocket science, rather it is based on common sense, it is not anything new, it is merely a reiteration of a holistic view of life. We need to realise that sometimes we, all of us make things much more difficult than they need to be. It is almost as if we need life to be a rocket science that we can never understand. We seem to spend much of our time making the complexities of living even more complex through our appliance of scientific objectivity rather than exploring our lives through the simple mechanism of personal subjectivity. The time has come to have a close encounter with an alien concept it is time for recovery.

© Ron Coleman

Source: The Ron Coleman Story

See also: The Harmful Concept of Schizophrenia

Telling Your Recovery Story

2008-01-06T16:01:00.000-08:00

Recovery means different things to different people -- it must be self-defined. For most people, recovery means some equivalent of "normalcy". People who self-identify as recovered are people who are engaged in productive activity that is meaningful to themselves or others, such as work or school. They are either living on their own or contentedly with others. They have a network of personal and social relationships that are, themselves, relatively stable and healthy. They are either symptom free or whatever symptoms remain are no longer distressing.

Some recovery models state that in order to be considered fully recovered you have to be med-free. I don't agree with that stance because I've spoken with plenty of people who self-identify as recovered even if they still take medication. Being med-free is not the equivalent of being recovered. Being recovered is when you have resumed a place in larger society that brings you a sense of meaning, purpose and value.

Do you have a recovery story of your own to share? Perhaps you're not sure how to get started. Recently, I was asked to put together a list of "interview" questions to assist someone else in telling their own recovery story. What follows are the questions I came up with. For an example see here. Feel free to use these as a starting point for developing your own recovery story or feel equally free to go in your own direction. It's your recovery and your story.

If you would like to share your story with others through this blog, please submit your story to spiritual_emergency@yahoo.com. Note that you will retain all copyright privileges. Should you have a personal website, blog, or page, I'll be happy to provide a link back to you.

Thank you.

When did this begin for you?

What sort of "symptoms" were you experiencing on a physical, emotional, mental, spiritual level?

What else was going on in your life at that time?

Was there any link between the events in your life and the symptoms you were having/experience you were having?

What was it like to go through that experience?

Were you scared? sad? elated?

Were there any spiritual or numinous aspects to your experience?

What was the response of those around you to your experience?

Were you hospitalized? Medicated?

Did you find this helpful/unhelpful? Why?

What labels were applied to your experience, either by yourself or those around you?

How did you feel about those words?

What happened next? Were you able to quickly return to a state of productivity, e.g., returning to school or work?

How did you feel about your experience at this time? Confused? Ashamed? Concerned? Elated?

Was there anything of value in your experience?

Do you think anything could have prevented your experience from happening?

When did you begin to "recover"?

What factors were helpful to you at that time?

What role did hope play in your recovery?

Can you identify any breakthrough points in your recovery?

Where did your best forms of support come from -- family members? friends? peers? professionals?

What did you most need at that time? Did you get it?

What role did medication or therapy play in your recovery?

What would you recommend to other people who are reaching for recovery?

How do you feel about your experience now? Has it changed you?

What have you learned as a result of your experience?

Dr. Frederick Frese: Skepticism & Recovery

2008-01-06T15:46:00.000-08:00

There have now been three World Health Organisation studies showing that the outcome for schizophrenia in Developing countries is better than in the Industrialised world. This is extraordinary. How can places without psychiatrists, psychiatric nurses, psychiatric facilities, rehabilitation programs, medication and therapies come up with results considerably better than our sophisticated, scientific industrialised world? A country such as the USA spends 1% of its GNP on one illness, schizophrenia, and has results far worse than countries that don’t spend anything!

-- Dr. Simon Baker

Source: The Developing World Experience

Schizophrenia has long been considered a chronic, neurodegenerative disease. Yet some people do improve considerably over time, raising questions about both the definition of the disease and the meaning of the word "recovery."

The unblighted landscape of lucidity and mental health and the delusional regions of schizophrenia are believed to be separated by a chasm no one traverses.

Yet Frederick Frese, Ph.D., has by his own account crossed the terrain more than once, as if the two places were a contiguous territory with an uncertain boundary.

A psychology faculty member in the departments of psychiatry at two medical schools, a frequent speaker, a former board member and vice president of the National Alliance for the Mentally Ill, and a longtime clinician at a major psychiatric hospital, Frese would seem to have covered, and recovered, much ground since the days when he was first diagnosed with paranoid schizophrenia in 1966.

But whether Frese has "recovered" from schizophrenia—or, to put the matter another way, if what he has recovered from was schizophrenia or something else—is a matter of debate for some.

Not for Frese. He recounts with candor his years in and out of state, county, military, VA, and private hospitals and—with a degree of humor—his time as a serviceman at a Marine Corps barracks when he became convinced that he had discovered a plot by the enemy to hypnotize high-ranking military officials. Or the day he was carried off in an ambulance from a cathedral following a breakdown when he believed he had "cracked the code of the universe," uniting the wisdom of the East and the West.

"I have been diagnosed and treated for schizophrenia for 35 years," he told Psychiatric News. "In light of my history, it is difficult for me to understand how one can argue that I have been misdiagnosed. But the mental health professions have been wedded to the belief that you can’t possibly recover, and I have been told—somewhat tautologically—that if I have recovered, I must have had something else."

Throughout those 35 years, Frese has been treated with drugs, gotten better, and relapsed from time to time. To this day, he said, he continues to experience symptoms. Yet he has also compiled a record of professional and personal achievement that many would envy.

So it would seem that "recovery" from schizophrenia—or from many mental illnesses—is a tricky concept. "It is not accurate to characterize anyone who is subject to symptoms as fully recovered," Frese said. "I don’t characterize myself as recovered, but recovering."

Neurodegenerative Disease?
The prospect of recovery does, in fact, fly in the face of orthodox psychiatric belief, which has held to the definition of schizophrenia—put forward more than a century ago by the German neurologist Emil Kraepelin—as a chronic, neurodegenerative brain disease.

But some researchers today cite a body of 10 longitudinal studies of two-to-three decades in length showing that many people with schizophrenia do in fact recover to some degree and that some go on to live lives that may be indistinguishable from the healthy.

In 1987 Courtenay Harding, Ph.D., published findings from a 32-year longitudinal study of 269 back-ward patients from Vermont State Hospital. This intact cohort participated in a comprehensive rehabilitation program and was released to the community in a planned deinstitutionalization effort during the mid-1950s. At their 10-year follow-up mark, 70 percent of these patients remained out of the hospital, though social isolation and recidivism were common.

Twenty to 25 years after their index release, 262 of these subjects were blindly assessed and rediagnosed using modern criteria with structured and reliable protocols. One-half to two-thirds of them had achieved considerable improvement or recovery, corroborating findings from Europe and elsewhere.

But Harding said that her findings, and the notion that people with schizophrenia recover, is greeted generally with skepticism. "People look at me like I am from another planet," she told Psychiatric News.

Harding is director of the Institute for the Study of Human Resilience and senior director of the Center for Psychiatric Rehabilitation at Boston University.

She added that the skepticism is not difficult to understand given that few studies on the course of schizophrenia have taken a longitudinal approach. "What happens in most research strategies is that the investigators follow a cohort of convenience for a short time while they are still in treatment," Harding said.

Consequently, the literature tends to corroborate what psychiatrists see on a day-to-day basis: chronic disease and recidivism. But Harding said that impression is a classic example of the "clinician’s illusion"—a misapprehension about the nature of disease, common to any number of chronic conditions, that is an artifact of a physician’s practice: The physician tends to see only those patients who are sickest and who do not respond to treatment, while those who are less infirm and respond are—naturally enough—seen less frequently or not at all. In time, the physician cannot help but form an impression of nearly incurable chronicity.

"Any clinician worth his salt will tell you it happens," Harding said. "You get inured to what the range is because you keep seeing these [chronic] people right in front of your nose."

And the short-term clinical reality of schizophrenia is frequently dismal. "The day-to-day experience is heavily crowded caseloads and shelters where it doesn’t look like anyone is getting better," she said. "The expectation is that you do stabilization and maintenance with medication and entitlements, and that’s the best you can do."

Yet Harding said that outside the range of the "clinician’s illusion" are uncounted patients who have passed through and out of systems of care, gotten married, and are holding jobs. "Most of them are not even known in the community as having mental illness," she said. "They have gone about their lives and are embedded in society."

Influenced by Kraepelin
The concept of schizophrenia as a disease from which no one recovers is itself embedded in history. Robert Spitzer, M.D., who was editor of DSM-III, said that the criteria for schizophrenia in that edition—and succeeding editions—were heavily influenced by researchers who took as their guide the definition proposed by Kraepelin.

Moreover, Spitzer said that Harding’s statistics about recovery "seem very dubious" to many clinicians—though he acknowledges that the "clinician’s illusion" is a phenomenon to be reckoned with.

While claiming to hold no doctrinaire position himself, he added, "As a clinician, if I saw someone who had schizophrenia and who had fully recovered, I would personally be very puzzled."

Harding believes that schizophrenia is not one disease, but comprises a "group of schizophrenias," and that heterogeneity of outcome is the true hallmark of the disorder. She said that research has shown a range of prognoses, with affective disorders having the best, followed by schizoaffective disorders, paranoid schizophrenia, and then those with disorganized thinking.

"The course of schizophrenia is a much more complex and heterogeneous process than has been appreciated," she said. "The narrow medical model targets pathology, whereas a recovery model targets strengths of the individual, the family, the clinician, the social network, and systems of care upon which to build the rehabilitation process."

Long-Lasting Implications
William Carpenter, M.D., director of the Maryland Psychiatric Research Center (MPRC), agrees that schizophrenia is much more likely a cluster of syndromes than a single disease. "There may be forms of the illness that meet current criteria from which recovery does take place," he told Psychiatric News.

But Carpenter holds a somewhat more circumspect view of the prospects for recovery. "In the main, the people who meet the criteria are likely to have long-lasting adverse implications," he said. "The question of recovery then becomes entirely a matter of how you define recovery. If you define it as living and functioning as if one never had the disease, that rarely happens. If you define it as being clinically stable and making a good adaptation, that probably happens with some frequency, but it would still be a minority of patients."

He added, "You can have a favorable course without it being as though you never had the disease."

Further, the measures of "recovery" are likewise relative: a patient may be working full time but in a very diminished capacity compared with what he or she might have been capable of without the disease.

Carpenter said he was at one time distrustful of his own possibly illusory understanding of schizophrenia, derived from the patients he saw at the MPRC—they are largely very sick and have not responded to treatment. "For a long time I thought our view of the disease was heavily tainted by Kraepelin, and that we needed a more epidemiologically based understanding," he said.

In the late 1980s he participated in a study of "first episode" schizophrenia in the Suffolk County area of Long Island, N.Y. The study, published in the January 1998 American Journal of Psychiatry, looked at the course of disease in a community sample of young patients who were being treated very early.

"Arguably, we would be seeing a population that was much more representative of the illness," Carpenter recalled.

The preliminary results were sobering. "The impression was that every story is a sad story," he said. "It reawakened in me the view that even if you start with a representative community sample of people getting their first diagnosis, the illness takes a really bad toll on almost all the people almost all the time."

Carpenter agreed, however, that the orthodox view of schizophrenia as a disease that always has an inexorably downward course is simply wrong. Moreover, even in the case of the sickest patients there appears to be some natural improvement with aging. "Clinicians should assume that most patients have a chance for substantial stability and have a chance to regain much of their lost niche in society," Carpenter said. "Individuals will vary in how far they can go in accomplishing that."

Recovery in any one patient would seem also to hinge on the largely unquantifiable variable of human individuality and resilience.

Frederick Frese joined Carpenter and Harding in urging clinicians to shed illusions of a hopeless prognosis and to partner with the recovery movement and "live with ambiguity." The latter may be another way of phrasing Harding’s advice to "seek out the person behind the disease"—a person who may just possibly defy the odds.
"Increasingly, patients and clinicians need to work together," Frese said. "The voice of those of us in recovery should be given maximal dignity and respect. That will be to the clinician’s advantage."

© Mark Moran

Source: Skepticism Greets Report Of Schizophrenia Recovery

See also: Schizophrenia & Hope

Dr. David Lukoff: My Spiritual Crisis

2008-01-04T22:06:00.000-08:00

A person receiving a diagnosis of schizophrenia loses hope and enters a state of anguish caused by an experience of meaninglessness, hopelessness and helplessness. Much of this hopelessness is not due to the disease but to the mental health systems designed to treat it. Mental health systems are set up for maintenance and usually communicate that life is without hope of significant accomplishment once serious mental illness has set in. Yet, experience shows that recovery from mental illness is possible.

-- Dr. Edward Knight

Source: Recovery

My psychotic crisis occurred 18 years ago. After coming to the conclusion that, at 23 years of age, I was spending all of my time learning about other people, and did not know my own self, I dropped out of the doctoral program in social anthropology at Harvard University. I gave away all of my possessions, from bed to books, that would not fit into my backpack. I started travelling — hitchhiking across the country, up into Canada and down into Mexico, even to Hawaii. In Palo Alto, six months later, I awoke just after midnight. Although I had slept for only two hours, I felt rested — in fact, I was full of energy and eager to get back to writing in my journal. But first a quick trip to the bathroom.

While there, I stopped in front of the mirror and gazed at my reflection. Suddenly I noticed that my right hand was glowing, giving off a white light. My thumb was touching my forefinger in the ancient mudra position of the meditating Buddha. Immediately the meaning of this sign was clear to me: I had been Buddha in a previous life. Then another thought came: Buddha had been reincarnated as Jesus Christ. Therefore, I had also been Jesus Christ. Now, in this moment, the luminous image in the mirror was awakening me to my true purpose: to once again bring the human race out of its decline. My journal writing was actually the creation of a "new Bible", a Holy Book which would unite all people around the common tenants of a single belief system. Instead of unifying just one social group, as Buddha and Christ had, my mission was to write a book that would create a new worldwide society free of conflict and full of loving relationships...

© David Lukoff

Source: My Spiritual Crisis [PDF File]

See also: From Spiritual Emergency to Spiritual Problem: The Transpersonal Roots of the New DSM-IV Category

Dr. Daniel Fisher: Healing & Recovery are Real

2008-01-04T20:40:00.001-08:00

In 1999 Ronald F. Levant EdD told a group of fellow psychologists how recovery from a major disorder such as schizophrenia was not only possible, it was happening regularly. "Recovery from schizophrenia," a colleague snorted, "Have you lost your mind too?

Source: Why Can't They Recover?

We who have recovered from mental illness know from our personal experience that recovery is real. We know that recovery is more than remission with a brooding disease hidden in our hearts. We have experienced healing and we are whole where we were broken. Yet we are frequently confronted by unconvinced professionals who ask, "How can you have recovered from such a hopeless situation?" When we present them with our testimonies they say that we are exceptions. They call us pseudoconsumers. They say that our experience does not relate to that of their seriously, biologically ill, inpatients.

I recently re-experienced this negative attitude about recovery. A friend of mine, during a discussion in a psychology class, said she knew someone who had schizophrenia, recovered and became a psychiatrist. "He must have been misdiagnosed," was the professor's response. So my friend reviewed my earlier symptoms with me. I met the DSM IV criteria for schizophrenia in the interval from 1969-74. When she presented my history to her professor, he reversed his position and said that the diagnosis of schizophrenia must have been correct. He doubted I had recovered and said, "we now have a case of an impaired physician."

By having earned board certification in psychiatry, having worked as medical director of a community mental health center for 11 years and having directed the National Empowerment Center for 3 years I have proven that I am not an impaired physician. This episode reveals the depth of negative expectations which are taught to students. After all, mental illness is considered a terminal condition for which there is no cure. Therefore anyone who appears to have recovered must not have been sick. This leaves no one with first hand experience of what helps and what hurts to speak for those who currently cannot speak due to their distress.

This example illustrates the dilemma many of us face who have recovered from mental illness. It would be easier in the short-run to forget and not tell others of our experiences. But for many of us the benefits of telling outweigh the risks. For in the telling we open wider options for peer support, we continue our healing and we help reduce the stigma of others. Yet to have our story discounted after we risked our social position, jobs, and insurance by giving testimony is an affront to our integrity.

© Daniel Fisher

Source: Healing and Recovery Are Real

Judi Chamberlin: Developing a Recovery Vision

2008-01-04T20:39:00.001-08:00

Most Americans are unaware that the World Health Organization (WHO) has repeatedly found that long-term schizophrenia outcomes are much worse in the USA and other developed countries than in poor ones such as India and Nigeria, where relatively few patients are on anti-psychotic medications. In undeveloped countries, nearly two-thirds of schizophrenia patients are doing fairly well five years after initial diagnosis; about 40% have basically recovered. But in the USA and other developed countries, most patients become chronically ill. The outcome differences are so marked that WHO concluded that living in a developed country is a strong predictor that a patient will never fully recover.

Source: Mad In America

Hello, my name is Judi Chamberlin and unlike the two previous speakers, I am not a mental health professional. I was a person labeled with a serious mental health illness - I was diagnosed with schizophrenia when I was 21 years old, and I'm a person who's recovered. So I'm an example of what we're talking about today. And I think it's very important to recognize that recovery is not something that happens to a few exceptional, privileged or lucky people ... recovery is possible for everyone who's been diagnosed with a major mental illness.

Being told that you have schizophrenia is a devastating experience. Especially when I was told this, I was also told that I would always be ill, I was going to need treatment and it was terrifying. This happened in a time in my life when lots of things were going wrong and to be told that they weren't going to get better ... that things weren't going to come together for me, was taking away hope at a time when I needed, more than anything else, people believing in me. And I needed support, I needed someone to say that there are ways out of this morass you find yourself in and I wasn't hearing that. And what compounded it was that these people were the experts. They were the ones who were supposed to have the answers. So it was a terrible blow to be told by these experts that I was never going to get better.

At the same time, and I've heard this from many, many people over the years who've been through this, there was always a part of me who didn't believe it. There was one part of me that was saying, 'Well, these people are the experts, they know what they're talking about,' and another part of me was really inside me screaming, 'No, no, no! I cannot believe that my life is over at the age of twenty-one!' I had all kinds of hopes and dreams about the future, like other people, and to be told that there wasn't any point in dreaming them, just didn't make sense to me. I needed to hold onto my dreams.

I had gone into the mental health system because I believed that there were people there, with the right kinds of training and knowledge and expertise that would help me figure out what had gone wrong in my life, and that they would be helpful in getting my life back on track. Instead, I found out, in addition to all the other problems that had brought me to that point, I now had to fight the mental health system and that's really what I did.

I've written an article called Confessions of a Non-Compliant Patient and I really believe that it's those of us who were considered the most ill, the most non-compliant, the most trouble, we're the ones who have the fastest track on getting better, because there's always that part of us saying, "No, no, no. I'm not going to take your vision of what my life is going to be. I'm going to stick to my own vision of what my life is going to be."

At that point in my life, I thought maybe I was the only person who felt like that. I didn't know that there were other people -- I hoped there were, I believed there were. I used to have a dream that sustained me that somehow I'd find other people who'd been through the same kinds of experiences and that we'd join together and do something about it. But it took me five years after I got out of the hospital to find that there was, in fact, a group of former patients that had started meeting in New York City - this was the early 70's - and it was only when I became involved in the self-help and advocacy movement that I found what I had been looking for in the mental health system but never found there. That was people who were willing to listen, willing to accept my experiences, take me at face value, not start labeling my feelings and thoughts as symptoms, and that we can do this for one another, that it was a mutual activity - it was mutual support.

© Judi Chamberlin

Source: The Recovery Vision [PDF File]

Dr. Rufus May: My Experience of Psychosis

2008-01-04T20:38:00.000-08:00

In the early years of the nineteenth century, when psychiatry was just beginning, a furious argument raged between people with very different opinions about the nature and course of mental disorders. On the one hand, psychiatrists like Eugene Bleuler believed that recovery was possible and indeed likely for the vast majority of people suffering from serious mental disorders like schizophrenia (then called dementia praecox).

On the other hand, psychiatrists such as Emil Kraepelin insisted that recovery was impossible and that sufferers would never recover. Indeed he believed that their condition would get worse throughout their lives. Kraepelin won the debate and the idea of permanent illness and disability formed the basis of mental health services for almost two centuries.

Source: Understanding Recovery

From September 1986 to November 1987, I was treated for psychosis. This included several involuntary hospital admissions. Initially, I had experienced sleep deprivation and was very confused holding some grandiose and paranoid beliefs involving espionage and science fiction theories. I perceived the television and radio as having interactive messages for me. I also entertained spiritual beliefs focussing on battles between good and evil and having special powers of communication. My concentration was extremely poor. I was in a high state of vigilance, fear and tension, leading to chest pains. Perhaps due to having a family history of problems diagnosed as schizophrenia, clinicians quickly made a diagnosis of schizophrenia. My parents were informed and told I would need to take medication for the rest of my life. However, 14 months after my initial psychiatric admission I stopped taking my depot injection of medication and disengaged with psychiatric services. I have not since received or used psychiatric services.

As a patient, I did not receive any specialist psychological interventions. The main interventions I received were pharmacological, ideological (‘you must accept you have a serious mental illness’) and eventually occupational therapy. I believe that I came very close to developing a long-term sick role as a ‘schizophrenic’ because the expectation all around me was that I would not be able to rebuild my life. Rather, I was encouraged to passively adjust to a serious ‘mental illness’ with a maintenance style medication regime. The belief held by hospital staff was that I would be powerless to influence the return of psychotic symptoms that could at any moment strike again. For me to escape this prophecy it felt like wading through miles and miles of swamp. This was an incredibly lonely journey. I had no guides, no specialist support, and no stories of success. With hindsight, my own understanding of my initial psychotic reaction is that my drift into a psychotic world was the result of dissociative psychological strategies that allowed me to escape from a social reality I felt alienated from. Motivated by the poor care I received and witnessed, I decided to train as a psychologist so that I might influence change in therapeutic approaches in the mental health system.

I now work in Bradford mental health services in England as a Clinical Psychologist. My aim in this chapter is to reflect on how recovery from psychotic experience, can be best promoted given the evidence from personal accounts and clinical research. In another publication I have reflected on what was and what was not helpful to my recovery process (May, 2000). In retracing my route to recovery I highlighted enabling personal narratives (stories of success and possibility), meaningful activities, and social inclusion opportunities (housing, work and educational opportunities) as being important turning points. I would like here to reflect on four areas which are important for practitioners to address if they are to be helpful in enabling people’s recoveries. These areas are clinical language, the recovery process, medication and a whole-person approach.

© Rufus May

Source: Understanding Psychosis & Working Toward Recovery

Sean: Mania as a Spiritual Experience

2008-01-04T20:37:00.001-08:00

A fascinating video series...

Part 1: The Start of the Journey

Part 2: Where Am I?

Part 3: Handcuffed

Part 4: Exit Strategy

Is Mania Spiritual Enlightenment? [Part I]

Dr. Patricia Deegan: The Flyer of the Kite

2008-01-04T20:36:00.001-08:00

Image Source

Distress, even the distress associated with psychosis, can be hallowed ground upon which one can meet God and receive spiritual teaching. When we set aside neurobiological reductionism, then it is conceivable that during the passage that is madness, during that passage of tomb becoming womb, those of us who are diagnosed can have authentic encounters with God. These spiritual teachings can help to guide and encourage the healing process that is recovery. Let me give you an example from my own experience.

I was in a very difficult, emotionally turbulent passage, punctuated with periods of psychosis. The anguish of it seemed endless, and I had lost all sense of time. I remember pressing my body against the concrete wall in the corridor of the mental institution as wave upon wave of tormenting voices washed over me. It felt like I was in a hurricane. In the midst of it, I heard a voice that was different from the tormenting voices. This voice was deeply calm and steady. It was the voice of God, and God said, “You are the flyer of the kite.” And then the voice was gone. Time passed and I kept repeating what I had heard, “I am the flyer of the kite.” When I repeated this phrase, I had the image of a smaller me, standing deep down in the center of me. The smaller me held a ball of string attached to a kite. The kite flyer was looking up at the kite. To my surprise, the kite looked like me also. It whirled and snagged and dove and flung around in the wild winds. But all the while, the flyer of the kite held steady and still, looking up at the plunging and racing kite.

“I am the flyer of the kite”, I repeated again. And, slowly, I began to understand the lesson. “I have always thought I was just the kite. But God says I am the flyer of the kite. So, even though the kite may dive and hurl about in the winds of pain and psychosis, I remain on the ground, because I am the flyer of the kite. I remain. I will be here when the winds roar, and I will be here when the winds are calm. I am here today, and I will be here tomorrow. There is a tomorrow, because I am more than the kite. I am the flyer of the kite.”

The notes in my chart that day probably said I was floridly psychotic. However, for me, that day was an epiphany. The lesson I learned on that day was a lesson I relearned, over and over again, in my recovery. Basically, I learned there was a deeper part of me, that was centered and unmoving and steady and constant and calm. Without this deeper part of myself, the wind could easily blow me away. This deeper me learned not to over identify with the good times or the bad times.

Like the kite blasting around on a windy day, my recovery often meant having a difficult time, with lots of ups and downs, pain and suffering, setbacks and bad days. But God taught me there was more to me than these ups and downs. Deep down inside, no matter how rough things got, there was a still, quiet place within me that held steady and that survived. On some days, recovery, was just about learning to ride the tumultuous winds, while hanging tightly to the kite string, until the storm passed. At other times in my recovery, I needed my therapist or a trusted friend to hold the string, until I could reconnect with the flyer of the kite within me.

If mental health professionals are to support the spirituality of people in the recovery process, then it is important to remain open to the possibility that people receive authentic spiritual teachings during periods of what gets called psychosis or psychiatric disorder. These spiritual teachings can provide a resting place for the weary; nourishment for the hungry; meaning for those in despair and a compass for those who are trying to navigate the passage of recovery. Simply allowing a client to discuss the spiritual teaching, while listening respectfully, can be healing. If the client is willing, exploring the teaching, applying it to daily recovery, and reminding the client of the teaching when it’s been forgotten can be helpful.

It is imperative that professionals not invalidate spiritual teachings received during psychosis or severe emotional distress. It is important not to dismiss such teachings as delusions. Do not interpret them as symptoms of disordered minds and then ask for an increase in psychotropic medications. If, as a mental health professional, you feel uncomfortable listening to spiritual teachings, because you are not an expert in such matters, own this personal limitation and share it respectfully with clients. Clients are then free to find other people who are more receptive to talking about spiritual teachings received during periods of altered consciousness and extreme emotional distress.

In addition, if mental health professionals are to develop an understanding of the role of spirituality in recovery from psychiatric disorders, they must be prepared to explore the depth and breadth of their own spirituality. It is not enough to study the spirituality of people diagnosed with psychiatric disorders, as if our spirituality were somehow different from yours. This objectifying, non-reflexive perspective will not do. If professionals are to support people in recovery, they must live in hope and understand no one is beyond hope. No one is completely lost. No one is chronic. All are of value. No one is a waste of your time. In other words, professionals must be willing to look into the places where human hands can not reach and abide in faith that there, too, God dwells.

© Patricia Deegan

Source: The Flyer of the Kite

Dr. Ronald Bassman: Overcoming the Impossible

2008-01-04T20:35:00.001-08:00

I have entitled this presentation, "Long Term Outcome for Rehabiliated Psychiatric Patients: Reasons for Optimism". The plan this morning is to look at recovery and the evidence for it among people with very serious mental illness. Let us look at some things that we've learned about rehabilitation and also a little bit about resilience. I'm going to present seven of the ten world studies this morning.

Now, when we talk about subjects who are recovered, we're talking about no medications, no symptoms, being able to work, relating to other people well, living in the community, and behaving in a way that you would never know that they had had a serious psychiatric disorder. And if you have heard of that old belief that one third get better, one third get worse, and one third stay the same, we found that it was not true. In the Vermont Longtitudinal Study, we took the bottom third of this population and found that two-thirds of them also turned around. So that our old views of schizophrenia are considerably different than they have been for the last hundred years.

-- Dr. Courtenay Harding

Source: The Recovery Vision

The seclusion room was empty except for a mattress covered in black rubber on the concrete floor. They lowered me onto the mattress and turned me on my side. I fought their grip on my ankles and wrists, but they were too strong and experienced. I quit struggling and stared at the wire-encased ceiling light. I couldn't see the nurse when she came in aid, "Get him ready." They quickly pulled my pants and underwear down to my knees. I winced at the violent thrust of the needle. I tried to prepare myself to fight the onslaught of the thought-dulling, body-numbing Thorazine.

They waited for the drug to take effect before they stripped me of my clothes. I was left naked in the seclusion room, and no explanations were given. They did not tell me how long I would stay there.

Three decades have passed since I've had any kind of psychiatric treatment, yet the memories remain. Even after more than 20 years of work as a licensed psychologist, the nightmares have not disappeared. The dreams of endless wanderings through gauze-shrouded hospital corridors, the disembodied screams, and the smothering restraints and seclusion were not overcome by my successes. Those haunting memories only ended when I was finally able to use all of my experiences, when I was able to stop hiding my psychiatric history, and when I could speak publicly about my own treatment and transformation. Now I understand the importance of sharing what I learned from living and working on both sides of the locked door.

I am just one of many who have suffered psychiatric torments from an inadequate and often destructive mental health system. The journey that brought me to this place of credibility enables me to offer my experience not only to those who have the power to bring about change, but also to those who feel powerless and need inspiration. My good fortune allows me to challenge the prevailing psychiatric model. When you become a mental patient, you are no longer regarded as a whole person with an individual mix of strengths and weaknesses.

When I was discharged from the hospital I was told I had an incurable disease called schizophrenia. The doctor told my family that my chances of being rehospitalized were very high. His medical orders were directed at my parents, not me, and stated with an absolute authority that discouraged any challenge. He predicted a lifetime in the back ward of a state hospital if his orders were not followed.

"He will need to take medication for the rest of his life. For now, you need to bring him to the hospital weekly for outpatient treatment and he must not see any of his old friends."

I was devastated.

The hospital doctor put me into a coma five days a week for eight weeks by injecting me with insulin. Those 40 insulin treatments combined with electroshock blasted huge holes in my memory, parts of which have never returned. I ballooned from 140 to 170 pounds; I appeared the clown in clothes that no longer fit. My already damaged self-image had plummeted to an unrecognizable depth, and the heavy doses of Thorazine and Stelazine made me feel like I was walking in slow-motion under water.

Was the doctor joking? Not see my old friends? How was I going to face them and explain what had become of me? Did anyone really think that I was capable of making new friends? I was sure that they would have nothing to do with me. But the most disturbing of all the orders was to hear him say that I would never be free of the hospital's control.

My best friends were once locked up in mental hospitals and fought their way back. We are psychiatric survivors. Some believe that psychiatric survivors defy the odds. Or maybe we were never really mentally ill, just misdiagnosed. After all, they say schizophrenia is a lifelong disease. Such reasoning makes my peers and me look like exceptions. Among our large group of closeted ex-patients are lawyers, teachers, mechanics, doctors, carpenters, plumbers and psychologists. We are your neighbors, ministers and friends, living and working in your communities. Many thousands choose not to reveal their past.

I choose to speak and write about my experiences so that others who have been diagnosed and treated for serious mental illness will be able to see new hope and possibility. After speaking engagements, I often get calls and letters from people who are thankful that someone is speaking out. They hide their past just as I did, but go on with their lives without anyone but their friends and families knowing about their psychiatric histories. Sometimes psychology students ask for advice about whether they should disclose their past

Do we recover or are we transformed by our experiences?

Some of us think of ourselves as recovering or recovered. Others like myself see it as a process of transformation. Like other psychiatric survivors, I feel dutybound to share what helped and hurt me so that we may eliminate the ineffective treatments and abuses of the mental health system, and help make our communities more supportive and inclusive.

Yet how does one climb from the depths? Research from around the world documents high rates of complete recovery from schizophrenia. The most extensive study, known as the Vermont Longitudinal Study, followed patients for an average of 32 years. Lead researcher Courtenay Harding of the University of Colorado studied the most "hopeless" patients diagnosed with schizophrenia: the feces-smearing patients who barely dressed themselves and had forgotten how to tell time. Harding reported that 30 percent of these patients had fully recovered. These ex-patients were symptom-free, employed, had a social life and did not take medication.

During my own struggles it would have been extremely helpful to have known of this optimistic research. Yet even with such remarkable findings, the common belief remains: Recovery is rare or impossible. In forums and presentations, I've shared these research findings and found that most people are surprised by the results.

Another study conducted by the United Nations through the World Health Organization found that people diagnosed with schizophrenia in Third World countries have higher rates of recovery than those who live in First World nations. Why is this? The thinking has been that families in underdeveloped countries need each member to be productive. Therefore, there may be greater tolerance for people who look and act differently. These people are necessary to their families and community. They have value.

What makes recovery and transformation possible? Unlike the research on recovery rates, there is little quantitative research on what promotes recovery. To determine what is helpful, we are guided by qualitative research gathered from people willing to share their stories.

In the Vermont study Harding asked people, "What really made the difference in your recovery?" Many of them answered similarly. They looked down at their feet, shuffled around and said something about a person who told them that they have a chance to get better. Having someone believe in them translated into hope. Without hope, death can establish a foothold. Hope fights fear and nurtures courage. It inspires vision and the work required to realize the unattainable.

© Ronald Bassman

Source: Overcoming the Impossible

See also: A Journey Through Madness and Transformation

Dr. Edward Whitney: Mania as Spiritual Emergency

2008-01-04T20:33:00.000-08:00

The psychotherapy of schizophrenia is, in my opinion, as much in the mind of the observers as in the mind of the patient. We must change before he can change. He has long been incurable because we have been hopeless.

-- Dr. Karl Meninger

One night in May 1994 I was stopped by the police as I wandered on the beach in my underwear and T-shirt, merging with the electrons in distant galaxies and looking for God. I was not sure whether I was Hitler, Elijah the prophet, or King Lear gone mad. All I knew for certain was that I had surrendered my customary frames of reference and had chosen to trust a process over which I no longer had control.

As the police asked me who I was and where I lived, I tried to come up with a story that they might accept. I told them that I was a doctor who was deeply concerned about the Clinton health plan, that I lived four blocks away, and that I needed to go home. I was certain that they were angels sent by the Lord to prevent me from disrupting the flow of energy in the galaxies with which I was merging. If God had sent them, then all was well; I could trust them.

Their police radio said something that included the words "seven four." They were checking the seventy-fourth decimal place of their calculations; this was the precision they needed to be sure that all the electrons in the universe were still in place. They were, therefore, connected to the mind of God.

Friends and housemates were becoming alarmed by my recent behavior. I, on the other hand, had never felt more sane. The process was a healing one; all the shame I had felt for decades about being a disappointment to my father (an internist who had died when I was 15) had fallen away in recent weeks. I felt a deep transformation of the meaning of everything that had ever happened in my life. I was receiving assurances from Heaven itself that I needed to feel ashamed no longer, that I was loved for all eternity. Everything that existed was holy. Angels were everywhere, beautiful and terrifying.

I had always scoffed at those who said that we could do anything we put our minds to, and that our beliefs were what limited us. We had to let go of our doubts, they said, and visualize what we wanted. Now I stopped scoffing; it was time to believe in myself, just as they said we needed to. I knew what I wanted: years before, I had lusted after an exceptionally desirable woman named Robin. My housemates and I had a cat named Bandit, and I reasoned that a bandit is a robber and robbers engage in robbin'; therefore Bandit could be transformed into Robin for my carnal delight. I visualized the metamorphosis, lifted Bandit to my face, and rubbed noses with him. He blinked at me and meowed.

Fantastic! Cats were cats, and women were women; reality had limits, and therefore my thoughts could not destroy the universe. Therefore, I was not God. I was relieved beyond measure. As I digested this momentous discovery, my housemates and friends began to make arrangements for finding me a safe place to be; three days later I was in the hospital on a 72-hour hold. This meant that I was Jonah the prophet, and that I had been running from God my whole life, and was sent by Him to spend three nights in the belly of the whale.

Mania, in my experience of it, is a process of giving birth to hope in the soul. It is opposed from within by an equally intense nihilism and fear that the entire creation is nothing more than a cesspool of doom. Inner conflict can make a person labile. The cosmic grandiosity comes from trying to answer the question "Is the universe a friendly place or a hostile place?" This is ultimately a religious question, hence the preoccupation with spiritual and religious issues.

I told the psychiatrist about being overwhelmed by a sense of angelic presences; he said that this idea was psychotic and that he would put me on risperidone, a new antipsychotic drug. The healing intentions of hundreds of people who had developed and tested this drug were enfolded within this pill, I told myself, and it would reveal what I needed to do in order to fit into this world in which I had always felt like a stranger.

About 20 minutes after the initial dose, I had my very first psychedelic experience—brilliant rivers of intensely saturated light flowed before my eyes. Assuming that the vision of flowing light was the intended therapeutic effect of the drug, I realized that disdain for psychedelics had been my basic problem; I had placed too much trust in reason and science. Risperidone was a wonder drug! I was cured!

The next day, another doctor started me on lithium. Aha! Lithium was the lightest of the metallic elements, number three in the periodic table. It was the ideal conduit by which cosmic energies could be grounded. The stars were mostly hydrogen and helium; lithium was the vehicle through which their messages could come to earth. How wise the psychiatrists were! They really knew what I needed!

Thus the mental health care system and I were at cross purposes; what I was experiencing as a wonderful healing process was construed by my doctors as a serious disease process. Neither of us had a clue about the other's perspective. They knew nothing about my issues with my father, the spiritual and religious interests I had had since childhood, and my recent fascination with the Lubavitcher Hasidim, who were saying publicly that their elderly and ailing leader was the promised Messiah. If the Lubavitchers were right, then the healing of the whole world was at hand, and we would have no more war. Fear and hatred would rule no longer. God would no longer be a tool of oppression. With my entire being, I wanted this to be true. For their part, the doctors knew messianic obsession as a symptom of illness, a medical disorder of the brain.

Mania, in my experience of it, is a process of giving birth to hope in the soul. It is opposed from within by an equally intense nihilism and fear that the entire creation is nothing more than a cesspool of doom. Inner conflict can make a person labile. The cosmic grandiosity comes from trying to answer the question "Is the universe a friendly place or a hostile place?" This is ultimately a religious question, hence the preoccupation with spiritual and religious issues.

The struggle between hope and utter despair can frighten onlookers as well as the person on the inside of the experience. There is a difference between the expression and the intention of any problematic behavior; the expression of mania, intrusive and melodramatic, gets the attention of onlookers. The constructive intention, concealed inside a person and covered over by layers of wild behavior, must be looked for or it will be missed.

Medical education does not prepare psychiatrists to deal with spirituality in human experience. In shaping human lives, spirituality is at least as powerful (and as subject to compulsiveness) as sexuality, and just as irresistible when intensely felt. It is expected that psychiatrists will be able to take sexual histories competently, but spiritual histories seem to be another matter. It saddens me to report that physicians were the main obstacle that I had to overcome on my quest for a hope-filled view of the world.

"If you don't think of it, you will miss it," every medical student is told when learning the art of clinical diagnosis. My doctors did not think about the possibility that they were seeing a person in the midst of a spiritual emergency; the concept itself is not on their map of reality. It is not listed in the differential diagnosis of manic episode in DSM-IV. Psychiatrists do not think about it, and they miss it. The patient, unfortunately, pays the price for the doctor's impoverished frame of reference.

It is a very serious matter when a physician mistakes a healing process for a pathological one. The intention of the doctors was positive, but their expression was most destructive. The head of psychiatry at the hospital told me that I was in denial if I insisted that I had been having a spiritual crisis. No, he said, this is a medical disorder like asthma or diabetes. When I finally understood that he meant what he said, I was devastated, and I was feeling suicidal within hours. I could not argue with his self-assured, expert manner.

Where, I wanted to ask, were the mast cells, the inflammatory mediators, the glycosylated proteins of this allegedly medical condition? But I was too demoralized to speak. I felt only like dying. The whole episode meant nothing; it was just a case of bad DNA making defective protoplasm. If I had accepted the medical model of my experience, I would not have survived to tell this tale. Despair would have consumed me.

I emerged from despair because other people interpreted things differently. One of my housemates said, "This happened for a reason, Ed." A psychiatrist who understands the concept of spiritual emergency accepted the legitimacy of the nonordinary states of mind that I described to him, and he likened them to crises that many people had passed successfully through. Outside the medical profession, there were many people who easily understood what I was saying, and they helped save my life.

Medical education does not prepare psychiatrists to deal with spirituality in human experience. In shaping human lives, spirituality is at least as powerful (and as subject to compulsiveness) as sexuality, and just as irresistible when intensely felt. It is expected that psychiatrists will be able to take sexual histories competently, but spiritual histories seem to be another matter. It saddens me to report that physicians were the main obstacle that I had to overcome on my quest for a hope-filled view of the world.

When confronted with manic patients, psychiatrists ought to ask themselves, "Could this be a spiritual emergency?" When no medical illness or drug intoxication is found, this possibility should be carefully ruled out before a medical model is imposed on the situation. There are features in the territory of human experience that are deleted from the professional maps that psychiatrists use. Those maps must be revised. DSM-IV should include "religious or spiritual problem" in the differential diagnosis of manic episode. Physicians who do not think about it when appropriate may do their patients grave harm.

© Edward Whitney

Source: Mania as Spiritual Emergency

See also: Spiritual Interventions in Psychotherapy

spiritual_emergency: Trauma & Ego Collapse

2008-01-04T20:17:00.000-08:00

After any major physical "insult," as they call it, it's all too easy to see yourself as a collection of symptoms rather than as a total human being, including your spirit -- and thus to become your illness. Fear is powerful and contagious.

At first I allowed myself to catch it, worried that if I didn't do what the doctors ordered, I'd be sorry. But now I'm learning to take my healing into my own hands. Healing, after all, is not the same as curing; healing does not mean going back to the way things were before, but rather allowing "what is now".

-- Ram Dass

When did this begin for you?
Technically, before I was born but in a more practical tone, it began in the early winter of the year 2000, when my mother died. Over the course of the next ten months I would go on to lose my two closest and dearest friends, my community, my sense of purpose, and my most persistent form of self-identity. I would give myself to a cause that couldn’t be won and bear witness to a catastrophic tragedy that involved the deaths of others – people I felt a distorted sense of responsibility for, along with an accompanying sense of distorted guilt for the circumstances of their tragic and premature deaths.

The culimanation of these events would produce a collapse of my sense of self-identity; what some people refer to as the ego. Four months later, this would morph into a full blown altered state of consciousness that lasted roughly six weeks. I would finally return to work fourteen months later. All in all, we're talking about an experience that peaked and declined over, approximately, 30 months. However, it's also worth noting that even when I returned to work it was only for a few days a month. I was still in an active stage of recovery and even now, still consider myself to be recovering on some levels.

What sort of "symptoms" were you experiencing on a physical, emotional, mental, spiritual level?
In the first phase, (the ten month period) I was becoming increasingly unhappy, confused, frightened and felt this terrible sense of constriction. I also felt enormously drawn to specific pieces of literature or music and began to withdraw from my normal activities. Events in my life were being divided into good and evil. During this time I also began to feel that somehow I was living out a myth and I didn't understand what it was all about. My family noticed a personality change at this time and they didn't like it; they wanted me to be the way I had been.

At the ten month mark came an experience of ego collapse. This was experienced as the equivalent of a death and was very disorienting and painful. The next four months were spent trying to understand and come to terms with this sense that somehow I had died and yet, managed to go on living. This was followed by a six week period that I mostly spent in an altered state of consciousness. During this stage, I felt as if I had fallen into a completely different world that was entirely real to me. In that world, I could still experience the things of this world such as pain or touch, but I also had no need for some of the things of this world such as food or sleep. Gods, demons, angels, helpers, bad guys, good guys - they were all a part of that world. Meaning was everywhere. That stage was later followed by a very dark period of roughly 18 months.

What else was going on in your life at that time?
I've summed this up previously as "multiple losses as accompanied by trauma".

Was there any link between the events in your life and the symptoms you were having/experience you were having?
Absolutely. For example, each of the "characters" in my experience represented real life people or events that had played a role in my crisis. I wasn't aware of that at the time but I was after.

What was it like to go through that experience?
It's really difficult to try and explain that experience to someone who hasn't gone through a similar experience. Part of the difficulty is that it's a non-linear experience; the other difficulty is that it was multi-levelled -- I commented at one point that I was "open" on fifteen different levels and my experience was unfolding on all of them. But when I try to bring that experience down to this level where other people are, linear experience can't contain it nor explain it.

Were you scared? sad? elated?
I was Everything.

Were there any spiritual or numinous aspects to your experience?
Yes. Very much so. These aspects had tremendous healing qualities and I think they were very necessary.

Hope is essential to one's personal recovery. Before you can ever do anything, you have to be able to believe that it can be done. Far too many people don't get that. They are told that there is no cure which is the equivalent of telling them that they will never recover.

What was the response of those around you to your experience?
My immediate family was frightened, confused and angry. They didn't know what to do so they left me alone and hoped for the best.

Were you hospitalized? Medicated?
No. Not before, during, or after.

Did you find this helpful/unhelpful? Why?
I consider myself fortunate in this respect. I don't think being hospitalized or medicated would have helped me. In particular, I suspect that medication would have only suppressed the content that needed to emerge and this attempt to suppress would have resulted in continuing episodes. As it was, nothing was suppressed.

What labels were applied to your experience, either by yourself or those around you?
Two labels were given to my experience by those who witnessed it: the first was "enlightened" the second was "schizophrenic".

How did you feel about those words?
I had no idea what those words meant or how I was supposed to "be" either of them.

What happened next? Were you able to quickly return to a state of productivity, for example, returning to school or work?
There was a "honeymoon period" in the weeks immediately following my experience. This was then followed by a very difficult passage of many months that would probably be defined as "depression". For much of the next year, I just sat there. I think, actually, this was the worst phase for everyone involved.

How did you feel about your experience at this time? Confused? Ashamed? Concerned? Elated?
All of those things and then some. For me, personally, I felt the experience had a lot of positives but I was surrounded by people who could see only the negatives. To speak positively of my experience was akin to deriving pleasure from their pain. It was perceived as selfish; my entire experience seemed to be construed as a demonstration of my weakness as a human being. For my part, I didn't feel I could possibly say anything in my defense so I just shut up, but I also felt very alone and isolated. At times, I wanted to return to that "other world" where I had felt understood.

Was there anything of value in your experience?
Yes. There was tremendous value in my experience.

Do you think anything could have prevented your experience from happening?
Possibly. My experience was marked by loss and trauma. I had lost my mother and my two best friends -- these people had been confidantes in my life. I also couldn't cry over the depth of my losses. So I couldn't talk to anyone and I couldn't cry, which also meant there was no release for the intense emotions that were churning through me at the time. Instead, all that feeling that had nowhere to go just kept building and building and building inside of me. Then you add the trauma, while also pulling away the structure of established social roles...

What happened next was an implosion; complete collapse of my sense of self identity. But yes, it's possible that if I hadn't lost those confidante relationships, and if I had been able to cry, and if all those people hadn't died, and if I hadn't felt that distorted sense of responsibility for their deaths, and if I hadn't lost that role I identified myself with, and if I hadn't been traumatized and terrified, and if my family members hadn't been confused, frightened, overwhelmed and angry, perhaps then... I wouldn't have cracked up.

When did you begin to "recover"?
I always say that I began to recover when I allowed myself to enter that altered state of consciousness. That was the first thing I had to do in order to become well.

What factors were helpful to you at that time?
Kindness. Time. Space to work things out for myself. Non-coercion. As little stress as possible. In those days, even taking a shower was stressful so I stopped taking them. Doing a load of laundry was stressful, so I stopped doing it. Trying to organize myself to clean the kitchen was stressful so I stopped cleaning the kitchen.

What role did hope play in your recovery?
In the aftermath of that experience, the first statistics I came across in terms of recovery told me that only 10% ever recover. That was a very discouraging thought. As I continued to research what had happened to me and why, I came across other statistics -- 30%... 35%... 50%... 65%... 70%... 75%. I stopped looking at 85%.

Hope is essential to one's personal recovery. Before you can ever do anything, you have to be able to believe that it can be done. Far too many people don't get that. They are told that there is no cure which is the equivalent of telling them that they will never recover. We really need to watch our language in this area, all the more so because we might be speaking to a person who is already very open, very wounded -- they have no ego boundaries. As a result, our words are going to sink deep.

Can you identify any breakthrough points in your recovery?
On a more subtle level, the restabilization of sleep patterns. On a more obvious level, returning to work.

Where did your best forms of support come from -- family members? friends? peers? professionals?
Initially, from friends and professionals but I have to emphasize that any professional support did not come from face to face relationships, but rather, by reading the work of professionals such as John Weir Perry, Carl Jung, Loren Mosher, Maureen Roberts, R.D. Laing, Anne Baring, David Lukoff. Later, support came from peers.

In terms of my family, I think they have really tried to understand but I don't feel they do. They prefer to not talk about it. However, they were immensely relieved to see me moving into and through various stages of recovery. My experience was a very difficult one for them.

What did you most need at that time? Did you get it?
What I most needed was for my family to forgive me for having fallen apart but they had to work through their own responses before they could begin to understand, accept and support my experience. In the aftermath, I also had to do a lot of work to restore my relationships with them. These days, it feels pretty good between us. I think we've all moved into recovery. They still don't like to talk about it though. It still brings up some painful, confusing and difficult feelings for them.

What role did medication or therapy play in your recovery?
Medication didn't; informal therapy did. As noted, that therapy came in the form of therapeutic relationships with friends and books.

What would you recommend to other people who are reaching for recovery?
To find other people who have recovered and learn everything you can about recovery from them. Also, to educate yourself. Don't rely on other people to provide you with your answers. What works for you may not work for someone else; what works for someone else may not work for you. Nonetheless, people who have recovered are in the place you want to be. You can learn much from them but that doesn't mean you have to adopt everything they do or say. Adapt their insights to who you are and what you need.

How do you feel about your experience now? Has it changed you?
I'm grateful for that experience. I think I've been to places that remarkably few human beings have ever gone. However, there are also times when I've wished that it had never happened. I had been happy before that experience; I had trust before that experience. Reclaiming these basic human elements that bring meaning to life has been a difficult process. Having seen other forms of reality I'm not so sure that I'll ever again be able to entirely trust this one.

What have you learned as a result of your experience?
Oh, I've learned a lot. A lot about people, a lot about myself, a lot about the world, the universe, and various levels of reality. More to the point, I'm not finished learning.

© spiritual_emergency

Music of the Hour: Closer to Fine

See also:

How to Produce an Acute Schizophrenic Break

Psychosis, PTSD and Story as a Vehicle of Healing