Person of the Year

In my life, the person of the year is Dr. Maria Stern, Chris's psychiatrist. She has done a lot, not just for Chris but for Ian and me. It's easy for me to see the flaws in psychiatrists, psychiatry and the medical community in general but then there are the exceptional psychiatrists like Dr. Stern, who manage to balance the interests of the client and the parents alongside their own belief system and training.

Dr. Stern is very supportive of our difficulties, and offers positive encouragement when occasionally I get a little down. I'm sure there are many times when Dr. Stern would love to tell Ian and me exactly what we are doing wrong and how foolish we sometimes seem in her eyes, but she doesn't. She is diplomatic and skillful. She always thanks us for our observations and usually says that she has noticed exactly the same thing. When I signal to her that there is an area where I think Chris can improve, she takes it to heart. The next thing you know he has improved in that area and there's no longer an issue. I plan to make greater use of her gifts in this way.

Thank you Dr. Stern for working wonders.

Why parents need to get and stay involved

Recently I have been mulling over why parents need to be very involved in helping their adult children overcome the crisis of schizophrenia. There are so many reasons why it is harder to help an adult than a young child but these are excuses. The most often cited reason parents give is that the person won't accept help. Depending on how you feel about it, you can either respect the choices of the person undergoing the crisis to allow him to remain in the crisis without active intervention on your part or you can believe that it is the parental duty to take over when that person is not able enough to make wise choices. Speaking as a parent, I favor the interventionist approach.

As parents, by having children we signed up to lifelong commitment of caring, which doesn't end magically at the ages of 18 or 21. We are still the adults here, to help guide our children through young adulthood, which these days seems to last well into the third decade for a lot of people and much longer for some.

Choosing to be an interferring parent is tough but it is far easier than being a helpless bystander as the years go by. It means that most likely you will have your adult relative living at home with you as the only way to exercise some degree of control over the situation and to demonstrate by actions not words that he is she is secure under your roof. Adult children living with their parents doesn't go down well in certain Anglo-Saxon cultures, paving the way for life on the street and a reduced chance to ever get well. Hands-on parenting means that sometimes you have to be in the bully pulpit, sometimes on the side of forcing meds compliance and/or sometimes forcing a vitamin regime or other interventions that you feel would be beneficial. Then there is the social responsibility of the parent to not allow their adult family member to victimize the wider public and at the same time to protect him or her from becoming a victim. Your child is no one else's responsbility but your own when it comes to protecting others. If you can avoid an unfortunate social outcome without resorting to meds, great, if not, insist that meds be used sparingly. If you are a parent who sees medication as the final answer, then you are not doing justice to your relative.

My job was made easier by becoming an informed interferring parent while still preparing for the day for Chris to assume control. This inevitably led to a clash with the medical profession over the use of the medication and the role of therapy. Just because the medical profession is stuck in an outdated paradigm when it comes to schizophrenia doesn't mean a parent has to be. And, when the doctor who is treating us has had schizophrenia him/herself, then we'll talk. Until then, parents and child are the real experts. What the doctor brings to the table can be useful, but it is also imperfect. Always keep in mind doctors' claims that people with schizophrenia who get well often aren't good patients and that they have a supportive family.

In my personal experience I spent several wasted years wallowing in the misery factor. We owe it to our relative to become relentlessly optimistic and cheerful in the face of obstacles, which are many. There is no point feeling sorry for ourselves and them. Being sad doesn't help your relative see a positive way out. It sends off all the wrong messages. You will never get out of this, for one. You are damaged, for another. "I" prefer being miserable to "your" getting better is another one.

What the medical profession hasn't done is to reveal to its clients that well-known "secret" that the crisis of schizophrenia is an understandable human condition, and that's a problem. If more people were exposed to the idea that schizophrenia is an understandable, albeit somewhat unusual reaction to life's pain, it would make the task of helping your relative through it so much easier. There are psychiatrists who have been saying this for years, but their message has been stifled by the greater number of medical professionals and researchers who are funded directly or indirectly by the pharmaceutical industry. Parents should be positively reinforced by medical authority figures when their own strength begins to wobble, not gently dissuaded of the foolhardiness of their beliefs.

As a mother I felt quite hopeless in the face of grim doctors telling me that my son has a lifelong brain disease. Nothing can be further from the truth, but I had to find that out for myself while the medical profession continued to enrich itself pursuing research grants from pharmaceutical companies rather than bringing Jung to the table and illuminating others. It has turned its back by and large on helping parents like me believe in ourselves and in our children, that we have something to offer.

Once you begin to understand what your relative is going through it is a journey, not an ending.

Jumping on the clozapine bandwagon

I am reading more and more media reports extolling the virtues of clozapine as an effective antipsychotic. Clozapine has been around for years, since the 1970s in Europe and the 1990s in North America. It is the first of the second generation of atypical antipsychotics and has been described as the treatment of last resort for people who have not shown improvement on other antipsychotics. The fact that it is off-patent is one reason why it is not more widely used, but only one reason.

Anybody thinking of taking clozapine should think twice before doing so. Begin by resisting the label of "treatment resistant" that is probably being directed at your relative. Treatment resistant simply means that medical science hasn't found out what your relative's problem is, but by golly, they are going to get a drug for whatever ails them, anyway. If your relative's problem is psychospiritual, which I suspect in most cases it is, then no drug is going to fix a mind that is "on strike." (John Nash's words, not mine.)

Antipsychotics, whether first or second generation, don't make anybody well, they simply repress the more outward signs of psychosis, and very often they even fail to do that. In my experience with Chris, clozapine was no more effective than any of the others, it is much harder to withdraw from, and then there is need for regular blood testing to avoid a potentially fatal condition called agranulocytosis, which involves the white blood cell count.

I am always heartened when I hear that people have managed to get off clozapine, even after many years.

An important blog ingredient - readers

I would like to take this opportunity to thank the people who contributed comments to my blog since it began in April of this year. Thank you, all of you, who have felt moved enough to write. I appreciate your support, even your criticism, and I trust that other readers have also benefited from the wisdom of your experience.

What a difference a year makes

Last year at this time Chris was psychotic and Christmas was hell. (See Christmas was hell (July 2009)). While it isn't an experience I want to go through again, I'll tell you why it also wasn't the end of the world. Contrary to what I had been led to believe, Chris did not suffer brain damage and he has not been irreparably marred by the experience of his subsquently spending another three months in hospital, bringing him up to a total of nine months in hospital over the past six years. Rather, we used the experience of psychosis and hospitalization to ask ourselves what we could learn and how we can avoid a repetition of these events.

I had been led to expect by the "experts" (official websites) that someone who is undergoing repeat psychosis and hospitalizations is getting further and further away from recovery. Could it be that this viewpoint is simply wrong? Could it be that this view is promulgated by pharmaceutical companies to keep people on their meds? Protecting the brain and all. It would be lovely to think that someone who suffers one psychotic breakdown is suddenly going to figure it out and do what ever needs to be done to avoid a repeat performance. It's not reality, though. Clinging to the notion that relapses are to be avoided at any cost puts an enormous and sad burden on the family: that if a relapse does occur there is the nagging fear that their relative is burning out, getting stupider, will never amount to anything, will never hold a job, etc. The misery of letting the official viewpoint guide your thinking is grinding.

While it is true that Chris has lost a year of the kind of productivity I would like to see (university, meaningful work), he has gained a lot in terms of insight and resiliency. He is back in the church choir, has done a couple of solos, has resumed his voice lessons, volunteers at the soup kitchen, and travels widely and independently. He is getting along well with his brothers, making this Christmas extra special.

Why not just tack on an antidepressant?

Something sinister is afoot with the proliferation of add-on psychiatric drugs to treat non-psychiatric conditions. This one below is particularly strange and scary as it combines an anti-depressant with an anti-convulsant. Don't want to go there.

Caveat emptor.

W W W . A L U M N I R E V I E W . Q U E E N S U . C A 17

When two drugs are better than one

People who suffer from debilitating neuropathic pain may get more relief and sleep better by combining two commonly prescribed drugs, a new Queen’s-led study shows.

When given both an anti-seizure drug (gabapentin) and an antidepressant (nortriptyline), patients experiencing neuropathic pain caused by nerve damage or disease reported less pain than when they took one or the other individually. They also slept better, reports Dr. Ian Gilron, director of Clinical Pain Research for two departments – Anesthesiology and Pharmacology & Toxicology. “That’s a very important issue for this group of patients, whose debilitating, unrelenting pain often interferes with normal sleep,” says Gilron. Since 45 per cent of Canadians being treated for neuropathic pain take two or more pain drugs, there may also be safety issues, he adds. Funded by the Canadian Institutes of Health Research, this study focuses on two specific types of neuropathic pain: diabetic neuropathy and postherpetic neuralgia. However, researchers believe the methodology could also be used to study chronic conditions such as cancer-related pain, degenerative spinal disc disease, and the pain experienced after chemotherapy and mastectomies.

Clever drug companies

How brilliantly big pharma has succeeded yet again. It has managed to convince gullible doctors and parents pre-softened by all the emphasis on autism (a condition that does emerge in early childhood), that there is also something called "childhood schizophrenia." Well done. Bravo. Parents are now on the alert for it in children as young as two. I am not doubting that children have mental health problems. Psychiatry has famously failed adults by continuing to insist that emotional problems are biochemistry. The repercussions of this meds only approach are far worse for children.

Posted by Sandra (below), on Circle of Moms: Mothers of Special Needs Children, in answer to another "mom" Jennifer whose nine year old has schizophrenia.

"if you don't mind me asking, how old was she when she was diagnosed? has she always had problems or is it a new thing? how is she handling it? sorry if i am being forward or if you just don't want to answer, it's just i have a 2 yr old girl who may have childhood schizophrenia unfortunately she is to young to get a proper diagnosis. i'm just not sure what to expect or what is going to happen with her so am looking for other mums who have been through similar"

The tragedy of schizophrenia without psychotherapy

Al Gorman was looking for help for his son, having experienced first hand how poorly conventional medicine and psychotherapy understands and treats schizophrenia. He located a paper by Bertram P. Karon titled “The Tragedy of Schizophrenia without Psychotherapy” (2001) and was awakened to the possibility that recovery from the condition was possible employing psychotherapy and without an ongoing dependence on antipsychotic medication.

He writes:

When an individual possesses a rigid delusional belief that he is overtaken by some daemonic force, although perhaps unconventional, the obvious thing to do is to aid that person in exorcising the daemonic force through a symbolic ritual of catharsis. With this interference out of the way more conventional approaches to psychotherapy can be undertaken.

Today's post is taken almost verbatim from Guiding Recovery from Schizophrenia Employing a Model of Direct Confrontation Psychotherapy, by Al Gorman and there is a further progress report on his son.

Mr. Gorman continues:

"Jack Rosberg has illustrated a Direct Confrontation model for psychotherapy with a schizophrenically diagnosed patient. He has summarized five significant steps to the systematic treatment of schizophrenia as follows:

1. Establishing relationship and trust with the patient,
2. Facilitating an experience of catharsis,
3. Employing more conventional methods aiding the patient in his or her psychosocial interferences,
4. Remobilization into society,
5. Aiding in the process of the patient discovering vocational meaning and purpose in his or her life."

"It is obviously significant enough to establish rapport and trust with a psychotic patient however as Rosberg suggests the catharsis is fundamental in resolving a meaningful path forward. Unless the therapist is willing to enter the delusional system with the patient, with sincerity and care, he or she will have little effect. The therapist cannot hope to have any success in bringing the patient into a state of normalcy unless he or she is willing to entertain entering the delusional system as a full partner with the patient. The therapist’s ability to meet the patient’s level of madness with one of his or her own making that is, in the eyes of the patient, equally or more absurdly mad than the patient’s own state is helpful in creating a meaningful background of relatedness and establishing trust that will allow for catharsis and the subsequent psychosocial healing of the patient."

While the article and the follow up progress report on his son are too lengthy for me to reprint in its entirety, I fully subscribe to the principles behind Direct Confrontation Therapy which Mr. Gorman enthusiastically endorses. When my own son was recently psychotic, I felt it was a golden opportunity to make a significant breakthrough with him. Unfortunately, I did not have the knowledge at my disposal to do so and was unaware of anyone else who could help him on this path. I have said many times that the right psychotherapy is crucial. The right psychotherapy, the one that can produce profound changes rather quickly, lies in entering into the delusional belief system, by putting yourself into the other person's shoes, or as Loren Mosher famously put it, by "acting like an LSD trip guide."

Desert matrix

Chris's report on his fifth sound therapy

Last Friday I went out for my fifth session with the sound therapist. I was feeling sleepy, yet I was eager to begin. We made small talk about travel and music. The therapist introduced me to an idea, which I have found to be one that's been recurring, via well-intentioned adults namely, who am I, what is my purpose and what am I to do with my life? He explained further that people often miss their calling in life, and spend years working in a job they hate or in regret over missed opportunities. I told him I would like to teach people, or be someone who is respected and looked up to. What I was trying to communicate was that I still look for validation from other people, and that I believe that I could be content in such a role. I was feeling ambivalent about his questions, as I would resent his persistence which at once exposed my insecurities and promised a recovery.

For the first part of the therapy, we listened to colors as usual. I was supposed to imagine each color, and I tried this time to see what each color meant to me. I remember the middle band colors, yellow and green, I imagined like earth colors, sand and grass, really vast and beautiful; blue and violet I saw as people and human activity. The colors appeared like emotions naturally and gently, as sunlight rolling down a hill. The therapist told me he had never (or rarely) seen such well defined color bands from visualisation show up on his meter.

For the second part, he told me of societies which in the past sent their youth into the wilderness to search for guidance, who were welcomed back into the tribe if they emerged but were not expected necessarily to return. Now, was I comfortable to pretend that I know myself, without having to go into the wilderness, or do I want to find out more of life than I know already? The therapist then asked me to imagine I was entering a desert from which I could not return as I came, and posited I may find someone there, bringing a message. I saw a cactus, but it was enormous, filling up my field of view, and I couldn’t get past unless I let it prick me. Then the view opened up and I could see for a mile around. There was nothing remarkable until I began to imagine myself thirsty and soon I was surrounded by cacti once again.

As I lay on the ground, my vision shifted to that of an eagle, or bird/man, and as he flew towards me lying on the ground, we became one animal, and I felt held up high by a strange force; and at last I started to fall towards the earth because my right wing was broken. At this time the sounds finished and I opened my eyes. I noticed that at the end I was ignoring the broken wing and was happy just to not fly properly. This must show how we need something extra to return home from the desert, the awareness that we are not fully healed; the feeling of being lost before finding my wings is the same as the insecurity of flying with a broken wing. Having no wings and crashing with a broken wing are the same thing, and if you can’t fix your wing you can stay on the ground, but if you want to fix it you have to give up roaming the desert.

Thrown back up through the nether world

Last week I spent three days in bed with a nasty viral infection, leaving me this week with little enthusiasm to tackle a daily blog post or even edit what I "churn" out. With Christmas fast approaching and my youngest due home from college in three days, you will be hearing less and less from me for a while. The flu that held me in his vice-like grippe for three days made me feel like I had been dragged through the seven gates of hell and back.

There is not much to report on the holistic recovery front. I was dismayed to see the article in the New York Times about the drugging of children on Medicaid. When did primary school performance (primary school no less!) become so important? Makes you wonder who the insane folks really are. The saddest part of the article for me was the mother who somehow had allowed herself seven years ago to be talked into believing that her three year old son was mentally disturbed. Now she has a ten year old son with adult health problems and still seems to feel that she has chosen the right course of action.

I remember the ease with which young parents bought into Ritalin when my own children were small. As girls gained political ascendancy in the school system boys became more and more viewed as a nuisance factor. They were expected to take on the characteristics of girls, not to be valued for their own characteristics of fearlessness, civil disobedience, curiosity, and physical strength.

Since undergoing sound therapy, I am much more aware that my dreams are a bridge to somewhere else in me. The dreams haven't changed, but something in me has changed about my relationship to them.

It is easier for me to see sound therapy's effect on Chris. After his first session he started a daily jogging routine. His body moves with more fluidity. I am noticing less and less of those awkward mechanical moves.

Ian and I had insisted at our last meeting with Dr. Stern that the Serdolect be eliminated completely. Chris's medication is finally starting to be lowered. Chris has been extraordinarily tired, which signals to me that the sound therapy is helping him get better by reducing the need for the medication. The "need" for the medication lasting beyond the initial crisis period is the view of the psychiatrists at the hospital, not mine.

Information overload

Here is an e-mail I received from the sound shaman in response to Chris's latest write-up of his experiences undergoing sound therapy.
http://holisticschizophrenia.blogspot.com/2009/11/sound-shaman-as-therapist.html

"Thank you Rossa, I am glad that we seem to be making positive progress. Chris is a wonderful and deeply sensitive young man, and in my opinion, he needs to gain a deeper understanding that the mind, with it's endless stream of chatter and unceasing kaleidoscope of imaginings, is not who he really IS.

We have a serious problem in our modern society: it is that we have forgotten what it is to be silent. Our world is trapped in an uncontrollable spiral whose velocity is in the danger zone. Young people are being subjected to an ever schizophrenic society - just watch an hour of MTV, the Saturday morning cartoons, or a typical video game - the number of messages evoked through sound and image is equivalent to what we (as parents in our generation) would have been exposed to in almost a year of media. In earlier generations, this amount of new information would have been absorbed over decades. It is no wonder that our children have difficulty concentrating, sitting still, or thinking coherently - much less understanding their emotions as they are being bombarded with largely irrelevant, incoherent, and manipulative information at an ever increasing rate. It is unlikely that this frenzied multi-media phenomenon will change in the near future, thus it is more important than ever to find ways to offload or discharge this very negative influence.

As we can demonstrate with measurements, our thoughts influence our electrical field, which in turn influences the atomic and molecular cohesion in the body. The rising incidence of disease in children in modern societies, such as allergies, psychological problems, etc., is not just a result of environmental pollution or bad diet, rather I believe, that it is very much related to the disturbance of the body's electrical field due to an oversupply of sensory and conceptual information. To heal, we need not medicate our children or give them ever more activities, rather we need to teach them to appreciate silence, stillness, and relaxation. Observing the flow of a river in the forest is far more therapeutic to our information overloaded children than any antidepressant!"

The true believers

I have noticed that the people who have recovered from schizophrenia and who believe that recovery is not only possible, but permanent, are people who have undergone certain psychotherapies and/or rituals or have simply wrested recovery away from the views of the professionals and placed the responsibility on themselves. They have either taken themselves outside the system and chosen a do-it-yourself approach (e.g. recovered by whatever means they had at their disposal) or else entrusted themselves to the views of psychiatrists and therapies who are also not part of the mainstream, e.g. transpersonal psychology (Stanislav Grof), transactional analysis (Eric Berne), shamanic journeys.

More than one therapist

"When you have more than one therapist, you build a circle of support around you."

Thanks to Adelaide Dupont who contributed this thought from yesterday's post. I hadn't thought of it quite in this way before.

Getting there sooner rather than later

Another reason why I like the book, The Alcoholism and Addiction Cure by Chris Prentiss is because he maintains that if you want to get to the bottom of your problems, the multiple therapy approach is best and it works faster. Many people can go for years seeing the same therapist and never become well or else not well enough. This may be because they are undergoing the wrong therapy or perhaps because they do not have a good rapport with the therapist.

Since the goal for everyone should be to resolve their problems as quickly as possible, people should be free to pick and choose their therapy and their therapist, and use several different therapy approaches. People should be free to choose but in reality they are not, as I have found trying to ask Chris's doctors for the use of other therapies while he was under their care. Just because psychiatry is slowly opening the door to acknowledging the value of Cognitive Behavioral Therapy for schizophrenia doesn't mean that CBT should be the only therapy employed. CBT may not work for you.

Cognitive Behavioral Therapy can be slow going, so I have introduced Chris to Family Constellation Therapy, sound therapy including the Tomatis Method, and Emotional Freedom Technique. I am of the strong opinion that schizophrenia needs to be solved at the intuitive level. You literally have to become a different emotional being inside your body in order for your sense of self to develop.

The sound shaman as therapist

Chris's notes from the fourth session

Before we began the session of sound therapy, the shaman asked me how I was doing.

I explained that I had been feverish for a day prior to our meeting. We discussed the implications of this, how this is usually a sign that a change is needed in my behavior towards my body especially. He asked after my family, especially my father and brother, both away at the moment. He said that there was something I could do for my brother, but did not say what, and that I might not want to do this thing for him. These were the things I explored during the therapy, which took on a very concrete path, more understandable and clear than previously.

The shaman had moved his practice to different premises, such that instead of an airy, mystical environment it was now in a more intimate setting, smaller cosy rooms that felt more personable. There was no staring-out-windows-pretending I was a bird. Rather than playing with my surroundings, toying with the possibilities of super-grounded experience, I was able to be practically focused, to take up a larger living space and give full vent to my inner conflicts. My therapy session was like a dialogue, with my emotions expressing themselves as thoughts, which I was able to interpret because of the sounds. I got the vague sense that time was slowed down, and I could hear myself more clearly and understand my emotions better, without the implications of meaning, i.e. feelings of confusion were the “real” me, not some quest of fulfilment.

With the first set of sounds, I felt I could live inside my body with so much space, every nerve and muscle vibrated with the sounds, so that my leg felt like a wooden bat and stretched as long as the ceiling is high. My mind, usually relegated to my head and stuffed into his tiny cubicle, opened the windows on all my body and became clearer and louder. I began to cry at fleeting feelings I had for people I no longer see and some who I still see. I was not confused by fantasies of sex or violence, which I attribute this time to the therapy working, that my body was releasing judgments on these somewhat uncomfortable matters. I had recurring feelings of pain as I thought of my father and of my little brother. I have the sentiment now of guilt about these two people: I have been unwilling to accept my part in our sometimes difficult relationship. I discovered that the pain can only mean one thing: When I am hurt in a relationship the other person is hurt also, which shows affection on their part and not indifference as I often assume. With the sound therapy I can isolate problems and look at them from an exterior point of view.

Concerning how the therapy “works,” I think the success or failure of the therapy is dependent on my state of mind, and just because I wasn't getting images of sex and violence does not mean that I am somehow “cured” or need to be “cured” of thinking of these things. I am humbled to say I feel as I have no control whatsoever of the images and thoughts that come to me as I lie down at the therapy. If there is any improvement in my well-being as a result of the therapy, well it is hard to say what part I had played in it, only that I can be more or less open in mind towards the work.

The intuitive mind

In addition to counting physical objects, numbers have a spiritual meaning that resonate with us at an unconscious level, according to sixth century Greek mathematician, Pythagoras. Pythagoras also believed that colors have a spiritual meaning and are aligned with musical notes. Though separated by centuries, Pythagoras, Dr. Masaru Emoto, Dr. Alfred Tomatis and and Chris's sound shaman are speaking the language of resonance, that physical objects, colors and symbols have a vibratory energy that imbues the universe with connected meaning. Ancient peoples were much more intuitive than modern man. They sought meaning through numbers, symbols, colors, communed regularly with the gods, and looked for signs from the heavens. It doesn't sound too terribly different than people today who are given a diagnosis of schizophrenia. In Chris's reporting of his recent experience with sound therapy, he said "As I heard the colors and shapes......" This is not crazy thinking, this is intuitive thinking.

Numerology is these days considered an esoteric pursuit, but not to Pythagoras or maybe not to anyone on the autism spectrum. Some people on (or even off) the autism spectrum see colors in musical notes or numbers. Chris has always been extremely good with math and music. To be good at advanced math and music, one would assume that meaning and connectivity are seen in numbers and musical notes. Out of interest, I looked into Chris's numerology by adding up all the numbers in his birth date (month, day and four digit number for year) and kept adding until I arrived at a number less than 10, in Chris's case, the number 3.

According to career intuitive Sue Frederick, a good career choice for Chris would be actor or singer, to name just two possibilities arising from the number three. Interestingly, I seized upon acting as a way of breaking through Chris's communication barrier when his doctor hinted that Chris was really good in the clinic's acting class. Since then we have also discovered that Chris is a good singer. Numerology strikes me as good a way as any to make your career choice. Rather than tediously wading through the popular book What Color is Your Parachute?, why not make your career choice based on what Pythagoras might have chosen for you? I am putting Sue Frederick's book I See Your Dream Job under the Christmas tree this year.

Medications and power

When Ian and I met with Dr. Stern earlier this month we urged her to take Chris off Serdolect and not to substitute another antipsychotic. For once, even Ian was on my side about the Serdolect after we realized that it can lead to sudden cardiac arrest. Somehow, Dr. X at the psychiatric hospital had "forgotten" to tell us about this particular side effect, probably because he had finally managed to get me to shut up about his adding a second medication on top of the Abilify. It was only after Chris went for an ECG that it dawned on me why he was having one in the first place. I didn't bother researching Serdolect's particular drawback because all antipsychotics have side effects (at least this one wasn't clozapine) and I am sick and tired of continually being on the offensive with the doctors and being on the opposite side of Ian.

I feel that with the subsequent interventions that Chris has undertaken since leaving the hospital in May (Tomatis Therapy and Sound Therapy) he has a better grip on reality and will be in stronger position than before to get off these stupid medications once and for all. He also has to be in a stronger position to make his own case with Dr. Stern. I really hate having a psychiatrist involved in what I consider our "family business," meaning Chris, Ian and I coming up with our own agreed strategy. If there were no prescription medications involved, we would only be needing Dr. Stern to act as a counselor. Prescription medications means a psychiatrist has to be involved. The psychiatrist then has gained enormous power over the decision making of the patient and family. I forgot to add that there is a second psychiatrist involved who I haven't met - the whom who prescribes the medications. This is an arrangement that we agreed upon with Dr. Stern so that she can meet with Chris without medications being the main topic of discussion. Where there is a psychiatrist, there is medication, however, because Dr. Stern needs to confer with the second psychiatrist about them.

If I think too much about this and actively intervene, I'll be headed for another round of sleepless nights. My new strategy is to trust Dr. Stern to do the right thing with Chris's fully informed consent. Dr. Stern has been remarkably open to listening to us in the past and has professed a desire to see Chris off the medications "at some point." The point where that "some point" is located is of course up to debate.

The plastic brain

The concept that the brain is plastic (has the ability to change and grow) was not in vogue a mere six years ago when Chris had his breakdown. The doctors informed us very solemnly that Chris absolutely had to be on antipsychotics because otherwise his brain would deteriorate. They spoke in terms of his brain becoming rigid, like solidifying, but flawed, concrete. Ian and I were scared stiff that we had already lost precious time and that Chris would soon be little more than a vegetable if we didn't put him on meds right away. (There are valid reasons why antipsychotics may be needed for the short term.)

A person experiencing a psychotic breakdown is terrifying to the uninformed observer, to whom the symptoms must surely be evidence of brain deterioration. This is where science will rush in with neuroleptic medications to "put a stop" to the problem. Pharmacy has you in a moment of crisis and it will not let go of you. The fear of a return of symptoms and therefore a further deterioration of the brain is ever present.

But today's New York Times reports on how a dancer, who has lived with cerebral palsy for over 30 years, has improved beyond recognition through unconventional "body work" training he undertook. His choreographer specifically did not want to learn much about his condition, because that would have prejudiced any outcomes she was hoping to achieve. It is also interesting that the dancer underwent twelve years of physical therapy without getting the dramatic changes in the way he walks that the body work therapy has achieved in a year.

“Everybody told me there was nothing I could do,” he said. “That’s just what you hear, from the time you’re 5 to adulthood. Tamar gave me an option.”

Everybody tells you that schizophrenia is a chemical imbalance in the brain that will require you to take medications probably for the rest of your life. Don't believe it. There are many exciting therapies that Chris has undertaken that are changing the way we view what "the experts" tell us is a lifelong illness. Most of these therapies have not been publicized for schizophrenia.

____________________________________
http://www.nytimes.com/2009/11/25/arts/dance/25palsy.html?_r=1&hpw

Getting out in the world

I had a nice chat with Chris last night. He has decided to enter the annual race next month around our city. This is just super, on many levels. Chris is a person who I have never seen run, not even as a small boy. He just didn't run, period. (He didn't even walk until he was sixteen months old.) I hope I am not reading too much into this, but my recollection is that the day after his first sound therapy, he went out for a small run. He has been out nearly every day since. He told me at the time that he no longer wanted to stay in the house all day, he just had to get out.

His wanting to exercise is also partly the issue of the weight he had put on. I told him that the weight goes with the medications and that he shouldn't beat himself up too much over this by starving himself or thinking that exercise will fix this. At least 70% of weight loss is what you are eating, not what exercise you do. Unfortunately, the medications make it impossible not to eat. Until Chris is off his medications, weight will be a problem.

We discussed how long he should continue with the sound therapy. I believe we have only started. Chris said that he had to keep adjusting to a different reality and he didn't know if this was useful or not. So we discussed the pros and cons and then he said something very interesting. He said that after undergoing the sound therapy he was no longer afraid. I'll leave it there.

Old and wise

Sunday, I skipped church and headed to my local chapter meeting of a network that functions as "a safe haven environment for the airing of novel experiences and ideas on scientific as well as transrational, spiritual, or similar topics." In short, the group is composed of mainly older people with unusual ideas and life experiences. An out-of-body experience like Chris had is nothing new to many of the members. I sat next to a recently transgendered woman in her late fifties/early sixties, who is fitting into her new skin quite nicely, although the early stages of the transition were a bit off-putting. As I came out of the washroom and she was going in, I realized with a start that she would now be forever designated to pass through the door marked "Eve".

How did I find myself hanging out with this crowd? Well, as I too, get older and more reflective, my eyes have been opened to people who have a more elastic view of what reality means. I see these people as my guides, in the same way that Chinese people respect their elders for their wisdom accumulated over a lifetime.

The need not to panic and to stay positive

Points one and two from Tuesday's blog post were about the importance of keeping calm and being positive. While this seems self-evident, it is not. The reason why it is not, I am sorry to say, is the medical profession. Until relatives begin to view them with skepticism, as we do with lawyers, real estate agents, and financial advisors, they will control the outcome, not you.

Your doctor, as I have said elswhere in my posts, does not really believe in your relative's recovery. It is not what he or she has been trained to expect. Their expectations of a happy outcome are not transferred because they lack belief. Your relative's eventual recovery is outside the scope of their limited experience because they are mainly familiar with scientific studies usually funded by drug companies.

Pharmaceutical companies have a vested interested in keeping doctors pessimistic about their patients. Here is a recent example: "The Worldwide-Schizophrenia Outpatient Health Outcomes study (W-SOHO) was a three-year observational study designed to assess costs and outcomes in outpatients using antipsychotics" says lead author Dr Jamie Karagianis from Eli Lilly Canada Inc. "On average, 19% were in paid employment, 69% were living in dependent housing and 62% had reported sexual problems in the previous month." Hmmn, this to me implies that there is a causal link between being on medications, living in dependent housing and having sexual problems. Your doctor will not see it in this light. He will only think that this scenario is a typical outcome of schizophrenia while perhaps offering to prescribe a new medication for sexual problems. The job of getting out from under this dismal scenario falls to you.

Just about everything, not just schizophrenia, is outside the scope of your doctor's experience, so for the really big medical scares of our day and age, if you are planning to survive and thrive, be prepared to reject just about everything the doctor has to say or to convey about your prospects.

_________________
Source: Wily-Blackwell news release

Niacin prevents Alzheimer's disease

I have been exchanging a flurry of e-mails with my older sister over the past few days. Since my mother developed the signs of dementia/Alzheimer's (does it really matter which?) in her late seventies, her three daughters have been understandably concerned about preventing it.

I first learned about prevention of dementia from Dr. Abram Hoffer. He experienced great success with his own mother and went on to recommend it for other members of his family, none of whom developed dementia. I immediately started on the same combination of vitamins that Dr. Hoffer recommends for schizophrenia. I felt there was a connection between my mother's dementia and Chris's schizophrenia. Both are related to the nervous system.

I saw dramatic results within three days. These results have stayed with me. I am faithful to my daily regime of 3 grams Vitamin B3, 3 grams vitamin C, 3 B complex tablets, omega 3 and zinc.

Dramatic results:

1. Sharp, focused thinking
2. Improved skin
3. Thicker hair

Dr. Hoffer advises that you reverse dementia if you catch its early signs, which he did with his mother, but that once dementia has set in, there is no turning back the symptoms. He also advises that if you begin the regime in your sixties, you need straight niacin, not niacinimide or flushless niacin.

Here's an interesting background story on niacin preventing Alzheimer's disease from the Orthomolecular Medicine News Service, dated December 9, 2008
http://www.orthomolecular.org/resources/omns/v04n25.shtml I urge you to read it.

Teach them to swim

Joseph Campbell's famous quotation that the schizophrenic drowns in the same waters in which the mystic swims with delight has been passed around for generations as profound "wisdom" and therefore not challenged. To me, this quote leaves people with the impression that the schizophrenic is a write-off as a functioning human being, while in contrast, the mystic, with whom he has much in common is, well, a great and glorious mystic.

The schizophrenic has all the ingredients of a mystic/poet/writer/musician, he just needs help getting there. Teach him to swim in the mystic waters. Support his interests, don't put them down. Encourage greatness in him. Don't insist on conformity to our very limited appreciation for who is worthy and who is not.

If I knew then what I know now . . .

Here are my top eleven ideas for helping a relative to heal. It's all about attitude.

1. Do not panic!

2. Accept only positive perspectives.

3. Be open minded to other ways of thinking.

4. Change your belief system.

5. You are an advocate for your relative, not the doctor's cheerleader.

6. Your relative is not chronic; the interventions that have been tried so far are a failure. Try something different.

7. Spread your eggs over many baskets.

8. Your relative is not brain-diseased, but is reacting this way for a reason. Be empathetic. Hold his or her hand and say "I understand you are angry/afraid/whatever and you have every right to be." You don't know why, at this point, so don't probe, just be there and be sympathetic and keep your mouth closed.

9. Indulge in self-examination.

10. This is a crisis only. There is an opportunity here for you and your relative to grow.

11. Beware declaring victory too soon.

Myths are public dreams, dreams are private myths*

Chris's notes on his second out-of-body experience induced by sound

"It's almost impossible not to see as though nothing's changed since the last sound therapy. I could pretend that I've reached Nirvana but I'm seeing everything the way I always have, no psychedelic colors or even levitation or lightness. I believed I could leave my worldly attachments behind, but the difference has been in what I don't see and especially don't hear anymore. I can hear myself and see myself, and this has made me wiser. I will try to explain. It will be difficult.

During the color therapy, I saw vivid images of various scenes with various people, and I was in them too, but with a difference. I saw scenes in which I have pictured or even wanted myself to be in; they were anything from choosing what to wear in the morning to having sex with someone I've felt attracted to, to participating in a Nazi party rally! As it was explained to me later which I only perceived at the time, my insecurity with these images, often grotesque and violent, was rooted in the fact that I was really an observer. I placed expectations on the outcomes of each of the dramas, and with the sound therapy I was transported to each of these dramas, which were rooted in some subconscious fantasy from God knows what. As I heard the colors and shapes, I could see that my “mind” had been tricking me; or rather my body which was wanting to make my mind believe that my feelings were my body, were somehow inferior to the form of a beast which I had allowed my body to become. Indeed, having sex I could see that it was not sex but rape to my mind, and at the Nazi rally I felt a tingle in my arm as I raised it in a salute! I say only this for myself and no-one else, but what my intellect knows is “true” and horrible only exists because of the corrupt nature of my own body, and my belief in human failings.

Afterwards, the sound shaman sat me down to chat about the experience, which I needed because of wanting to understand my experience and what went on. I don't remember everything he said to me, but I believe that it was said that in those “fantasies” was my true self, i.e. my physical manifestation that I've built up in the mirror is partly false and a deception. I believe that when I've chosen to follow an abstract goal, committing intellectually, emotionally and physically but without a true purpose then a split was caused in my being which is why I haven't been able to find a true calling yet."
_______________________
*Joseph Campbell

Heightened consciousness

Note from the sound shaman

"Unfortunately, modern psychotherapy continues to view the human mind as if it were simply a result of chemical processes in the brain. This viewpoint, in my opinion, could not be further from the actual truth. While our thoughts are made manifest by the "mechanical" action of our brain, our "mind" and our "emotions" are quite something else. We can measure the electrical changes in the body - the torso, the arms, the legs - when we think and emote. Thus, the action of thought and emotion affects our entire body system. Our thoughts and emotions are interpreted by our mind, and are generally reactions to some form of external stimuli such as sounds, images, scents, etc. It is our perception of these signals that forms the images, feelings and connections to short and long term memories.

Our western perspective on perception has forgotten, or simply ignores, a very important "reality" which is that there are other equally valid, if not somewhat uncommon, or misunderstood experiences and "perceptions" of the world around us. In ancient cultures, and with most indigenous peoples, the understanding of the world is augmented through "heightened consciousness" or "expanded perceptive abilities". To reach these levels of "super consciousness", cultures have applied various rituals and practices: meditation, chant, dance, sensory deprivation, the ingestion of plant and animal substances, etc. Through many years of training, practice, patience, and experience, the monks, sages, shamans, masters, are able to reach a level of awareness and perceptual experience, that under the microscope of modern psychoanalysis many experts would consider abnormally psychotic. In so doing, our modern society is losing (or has already lost), an opportunity, as well as a willingness to understand the true essence of who we, as human beings, really are."

Holistic explanation of an out-of-body experience produced by sounds

I am publishing an e-mail (below) that I received from the sound shaman about Chris's out-of-body experience while undergoing sound therapy. It is interesting how postively this is viewed by practitioners and adherents of "mysticism" (for lack of a better word) in comparison to traditional psychiatry, for which out-of-body experiences are thought to be destabilizing, particularly for someone with a mental illness diagnosis. I broached the subject last night at dinner with my dream analyst friend Val. She was very enthusiastic about Chris's OBE and felt that it was absolutely healing.

Long ago I identified the body/mind integration as essential for Chris's healing, but have been frustrated by not being able to find enough therapies that address this so directly. The assemblage point shift was important in this respect. Tomatis also is directed to integrating the person with the environment. I have been looking for something that potentially works faster than psychotherapy, which can take years. The goal is to feel emotionally integrated with the environment. In this respect, the Family Constellation Therapy that we undertook with Dr. Stern also fills the bill emotionally.

Note from the sound shaman
"Chris had a very interesting experience. I am very pleased as this is exactly the purpose and effect of the sounds - to expand our perception of the body and who we really are. The mind (thoughts) and the body (movement and emotions) produce changes in our electric field. The sounds - which have no specific reference in our mind (sounds that we have never heard before and so have no link to specific memories) - are perceived in the moment. Each sound is the actual vibration of light (i.e. specific colours). Our emotional system is not disturbed as the information contained in these sounds, and thus the processing work load required by the brain, is based on the natural vibration of light - slowed down by many octaves."

Some sing low and some sing higher

I continue to mull over the events of the last few days. Chris and I both underwent sound therapy last Thursday, but my experience wasn't nearly so dramatic. I could tell from the new way the sound was mixed, that I was being coaxed towards a deep meditative state. I almost got there, I could see how close I was to leaving my earthly baggage behind, but I got scared and refused to go any further. Maybe next time. Probably next time. I see the logic of release.

Recalling Dr. Stern's clear alarm about Chris's out-of-body experience and lucid dreaming, I have to smile. While I fumbled around to try to convince her that this was an all round good experience, I brought up the fact that Chris was also in the church choir, which so far nobody has questioned as being detrimental to his mental health. I told Dr. Stern that high church music whips people into a passion of ecstasy and abandonment to the Holy Spirit. This seems to me to be the opposite of grounding. "You know, Dr. Stern, I always say that the closer to the altar you get, the higher strung the people are. Who's closest to the altar? The priest, the rabbi or the minister and the choir. In my experience, there is a higher proportion of "not regular folk" in this population compared to the population at large. I sometimes think it would be a good idea if Chris had more opportunities to split rocks and less time to spend hanging around the choir. "

Dr. Stern looked rather stunned at my layman's view of things. But think of it. In many ways it might be a good idea if Chris didn't spend so much time hanging around the church, reading his Bible, and wearing choir robes. It mimics the psychotic behavior that we are trying to eliminate. Going to church may exacerbate mental illness!

I am not about to suggest to Chris that he drop choir, as it's the first activity that he chose to resume after he got out of hospital. Playing the ball as it lies I assume that choir must be good for Chris, despite all of the reservations I have expressed. He is who he is, and he's all about music. The church choir is a counter-intuitive activity to engage in, just as having an out-of-body experience is counter-intuitive to becoming grounded as most of us understand the concept - More African drums - less Mozart! Maybe, there is another way to look at it. Maybe we have been looking in all the wrong places, telling people to do certain things for good mental health, when we should have been telling them the opposite. I recently heard about a study on sugar's effect on children, and guess what - the study concluded that sugar does not increase hyperactivity in children. I give up. How does anyone know what to do for good health when faced with contradictory evidence?

You go with your intuition and ignore all the noise.

Man and Superman

For the many people who cling to the notion that schizophrenia is a brain disease, I wonder how come writers spend so much time on the subject of schizophrenia as an archetypal struggle for survival and growth? Cancer and diabetes don't get the same literary star treatment.

Today's thought has been brought to me by my office colleague, Bruce, who handed me an article about the book The Denial of Death, from where else? - Wikipedia. The book was written in 1973 by Ernest Becker, who died a year following its publication. Even he could only deny death for so long!

The Denial of Death postulates that civilization is engaged in an elaborate symbolic defense mechanism against our own mortality which is linked to our survival mechanism. Man has a dualistic nature, on the one hand, the physical which death releases, and on the other, the symbolic world of meaning. The tension between these two natures can be overcome by becoming "heroic" as a way of circumventing death.

"From this premise," Ernest Becker argues, "mental illness is most insightfully extrapolated as a bogging down in one's hero system(s)."

What part of the so-called diseased brain deals with a "bogging down in one's hero system(s)", I ask? Try as many scientists do to find an elusive gene or a pill that controls the impulse to be heroic and to act in one's own elaborate mythology, it hasn't happened. Yet, writers persist in linking schizophrenia and depression to this heroic survival instinct.
________________________
http://en.wikipedia.org/wiki/The_Denial_of_Death

Going where nobody else is headed has its drawbacks

Yesterday evening, Ian and I had our quarterly meeting with Dr. Stern, Chris's psychiatrist. We hadn't had a chance to meet since Chris was released from the hospital in May. We spoke about his overall good progress, how Ian and I were pleased to have him home with us and how we are content to let things unfold at the pace Chris was setting. Then Dr. Stern dropped the bombshell. She leaned forward, and in a clearly worried voice, said "what's this about Chris having an out-of-body experience? Chris's occupational therapist told me about this and she also told me about a lucid dream."

It has been my policy all along not to tell Chris's psychiatrists about what outwardly kooky looking things he is undertaking in the world of holistic healing. I have learned, as this experience shows, that it only worries them and they want to put a stop to it.

Most, if not all, psychiatrists would not want their schizophrenia patients having an OBE, because to them, it is exactly what you don't want them to have. Dr. Stern said she wanted Chris "in" his body and grounded, not out-of-his body and floating in space looking down at himself. It is exactly the sensible sort of thing a cautious psychiatrist should say, except that what has changed is that energy medicine has opened up a whole other realm of healing possibilities. I tried to handle this as best I could, knowing that Chris and I were headed to the sound shaman the next day for another go at it.

I tried to reassure Dr. Stern that actually, the meditative state that he achieved was a grounding state, not an excitatory state. I told her that an OBE for someone with a history of psychosis was actually a good thing, but it was counter-intuitive, because most people would think an out-of-body experience can lead to the person becoming destabilized and this was not in fact what was happening. Please note that this way of thinking is not only not widely shared, but not widely known. There's me, and there's the sound shaman, and beyond the two of us, who else knows about this counter-intuitive way of looking at schizophrenia? There must be a secret society somewhere, or maybe this is well-known in Eastern mysticism, but with Chris's Western diagnosis of schizophrenia I was treading on very thin ice with Dr. Stern. Come to think of it, Western medical diagnoses are not included in Eastern mysticism texts.

Do you do yoga, Dr. Stern? I enquired brightly. "Keep in mind that yoga is used in many programs for schizophrenia patients." Dr. Stern was more inclined to feel that yoga was more of a physical workout than a mental one, and that deep meditation is not something recommended for someone like Chris. Dr. Stern is a good psychiatrist and an excellent Family Constellation psychiatrist, but she is not a yoga person, nor all that familiar with energy medicine. Dr. Stern doesn't "do" energy medicine, and this is where it gets tricky with a psychiatrist. What I am doing with Chris is clearly out of most traditional psychiatrists' comfort zones. I only later thought about Chris's former holistic psychiatrist, who taught us about energy medicine and got Chris to practice visualizations. Where is the line drawn between lucid dreaming and say, visualizing you are a shining ball of light in space with giant meteorites bouncing off you?

The out-of-body experience and the lucid dreaming were all news to Ian, who thankfully didn't jump in and punch the air with "let's put a stop to all this nonsense now!" I told Dr. Stern that lucid dreaming was something Chris does and it didn't start recently. I was praying hard that the session would soon be over. I needed more information from the shaman to bolster my weak case in Dr. Stern's eyes. "I understand your concerns, Dr. Stern, and if I were you I would feel the same way. I will look into this some more and share further information with you." Inside me, I am really just hoping that all this will not be raised again.

When it was time to leave, I excused myself to make a phone call from Dr. Stern's inner office. As I entered, I noticed a large jagged quartz crystal on top of the table near the door. Now, what was that there for if she is not a proponent of energy medicine and the healing power of gemstones and vibrations? Is this just a decoration that psychiatrists put in their offices now to show solidarity with the holistic crowd in the same way all companies claim they are eco-friendly? Or, is it just a nice decoration with no other meaning? All of this I ponder.

How do you feel about this?

According to yesterday's New York Times,* Aspergers syndrome is proposed to be struck from the next edition of the DSM, due out in 2012, in favor of the term "autism spectrum disorder." I suggest that the DSM editorial board hit the delete button and do the same thing for schizophrenia, in favor of a more nuanced perspective, as appears to be the case with the jettisoning of the Aspergers' label. The DSM proposed change recognizes that there are different levels of functioning within autism, and that there are often other accompanying health problems that need to be treated.

This is a step forward, at least. Why not extend the same courtesy to schizophrenia, which seems to be on the bipolar, depression, mania, OCD spectrum? Although I am most definitely not in favor of saddling anyone with a psychiatric diagnosis, taking on the likes of the American Psychiatric Association, publisher of the DSM, will have to be chipped away at over time. What exactly is the difference between Aspergers, which can be terribly taxing on the individual and the family, especially when the child is young, and schizophrenia, which often allows a trouble free childhood and academic success, often brilliance, but provokes a major crisis in the adolescent years and early twenties? Well, for one, Aspergers is a recent addition to the DSM (1994) and it is easy to give up something you haven't become entrenched in. (I had actually never even heard of it until my son was diagnosed with schizophrenia.) Schizophrenia, in contrast, functions as both the the holy grail and cash cow of the mental health industry. Wait, no, I take that back about the holy grail part. The APA and pharmacology aren't interested in curing schizophrenia. It's too much of a cash cow. They just pretend they are interested.

“Asperger’s means a lot of different things to different people,” Dr. Catherine Lord is quoted as saying. “It’s confusing and not terribly useful.” (I say the same goes for schizophrenia.)

The New York Times article quotes the efforts of the Aspergers' lobby to widen the understanding of Aspergers to include health issues that accompany this diagnosis. The autism lobby has done an excellent job of bringing the message to the psychiatric community that there are underlying health issues that can be addressed, very often successfully. Many people say exactly the same thing about schizophrenia. I won't quibble about deleting one more meaningless diagnosis in the DSM, but while they are at it, they should treat schizophrenia in the same way.

Unfortunately, the diagnosis of schizophrenia is too big a diagnosis for the APA to relinquish. That they will hit the delete button for schizophrenia is unlikely, given that the latest APA news to be posted on its site is "Brain MRI May Pinpoint High Psychosis Risk." Nonetheless, let's keep in mind that the gay rights lobby forced it to delete homosexuality from the DSM in the early 1970s. It can be done.

It can be done, were it not for the fact that the public seems to have bought the APA's and NAMI's negative view of schizophrenia. There is no powerful lobby for schizophrenia taking the same position that the autism lobby has succeeded in doing. This means that the battle to normalize schizophrenia on the spectrum of human conditions and delete it from the 2012 DSM is lost before it has begun due to a lack of organized opposition to the prevailing viewpoint.

"All interested parties will have an opportunity to weigh in on the proposed changes. The American Psychiatric Association is expected to post the working group’s final proposal on autism diagnostic criteria on the diagnostic manual’s Web site in January and invite comment from the public."

Mark your calendar for January 2010 and let them know that Aspergers isn't the only meaningless label. Here's the APA's website address. http://www.psych.org/

_______________________________
http://www.nytimes.com/2009/11/03/health/03asperger.html?hpw

Chris's second visit to the sound shaman

"I was in a good mood that day and was happy to head out into the country. I was well rested and alert, but was slightly irritable, perhaps at the memory of our first trip out where we were delayed and nearly had to turn back. Having already undergone the therapy once before, I knew how it mattered that I be attentive but relaxed, to keep my body open, because this time around I had the tendency to become somewhat passive, which spoils the therapy as it works on the mind especially, and I think partly through the mind then the body.

The therapy lasted less than one hour, but I felt many changes. I tried to dissociate better my feelings about a color, red or green say, and allow the color to dominate my perception with as little judgment as possible. There were flies in the room, which at first I found irritating but later I found this a silly reaction to have, after I became more present in the room. The “sound/colors” themselves aren't like anything else you're likely to hear, because they're pure sounds, they're as natural as breathing. Once you hear them they take up the room. Listening to a color is much different from listening to Mozart; it's the difference that having an author makes to the sound, as you follow music in Mozart but hearing the color red for example is like a mosquito bite and not “interesting” per se.

However, I began to fall into a sort of trance, which wasn't quite sleep, or it was rather an aware sort of sleep that instead of relaxing into my body and dreaming I left my body and begun to experience the room while my body “powered down.” First I began to say to myself, this is just a sound, a basic unrefined sound but just a noise really and then my head refused to make any noise, any comment or utter any “thoughts” as I was released into the space or “aura” around me. I could see my body lying down from four feet away in any direction, and it was the best impression or image of myself that I've found in a long time, better than any mirror image can give. Those flies which I found irritating I realized were in harmony with my feelings of irritability which I had carried in with me, and I could fly around the room as if the flies were part of me. The only pain I felt was at the head level, when I could see that a big dark block at my head masked or obstructed this free flow of energy I experienced. To stand up in that state would have been impossible. Just as I was about to fall asleep the music stopped and it was time to go.

The sound technician explained that adepts at yoga, monks or shaman masters train for years to enter such a state, and that I was very lucky to enjoy it so early. That night I slept soundly and experienced a lucid dream in the morning, but this one was much clearer and longer than any I had previously experienced. The dream was pure fantasy or very close; actually it took the form of an episode of The Simpsons! I had been thinking about skiing the night before, and in this dream the Simpson family went skiing high up in the mountains, and Bart and Lisa got involved in the dangers and thrills of racing and jumping. When I felt scared at the outcome, and the dangers posed to the characters was too great, the story changed, based on my emotions. I suddenly had the power to create a dream and change it based on my emotions. The next day as I was reading on my bed in the afternoon I saw a woman wearing white enter the room and tap me on the shoulder, I could feel the touch but the woman I didn't know, it was still a dream. My head was telling me to get off the bed and do something else, and here was this woman who appeared also compelling me to get up.

However, I don't believe that this “awareness” the therapy opens within me should be relied on as a permanent change. There are many habits built into me that must be recognized first if I want to avoid becoming a “ghost” that just reacts to every little breeze or stimulus. From a personal point of view, emotion is more important or as important for a person, but mind can increase awareness and therefore enrich the emotional experience. The therapy has made me more aware of the physical manifestations of mental blocks: My head was quite unwilling to leave this form and it stayed there, while my body which has been through countless ordeals was more flexible. It's interesting to know just how much my body has priority over my head, the sounds reaching all my cells without interference from my mind. The next step would be to train my mind to listen to my body first before the noise of the outside world, and to calm the tensions existing in the body which cause the mind to have fear and to shut down."

Phonons

"Phonons are the tiniest particles of sound. Phonons are to sound as photons are to light. It takes billions of phonons to make up a sound. Phonons oscillate, echo, reverberate etc. at the sub atomic level in the quantum soup." -Pauline Oliveros*

It takes Pauline Oliveros, a musician, to explain a complex subject (phonons) in a simple, straightforward manner. I am not allowing my complete ignorance of physics and phonons to deter me from feeling that the sub-atomic level of sound is where schizophrenia can be healed. Browsing the web has turned up an article from the European Society for Pigment Cell Research, of all places, linking schizophrenia to phonon activity. http://www.espcr.org/espcr/b_iss/Dis-8a.htm

According to our shaman of sound, phonons are a relatively recent discovery and the Big Bang actually lasted, best scientific guess at the moment, 300,000 years. That's pretty darn close to a hundred thousand times pi. (Martin A. Armstrong take note!)

I don't plan to wait for the phonon-related blockbuster drug that might emerge in twenty years or so. (A new drug "Fanapt" that works on a "more relevant set of neurotransmitter receptors" as the company describes it, will be on the market in 2010.**) Chris and I are getting to work now in the relaxed offices of shamanic healers and therapists who understand that to be of "sound mind and body" means paying attention to the vibrations of sound and emotions.

______________________
*Pauline Oliveros is a musician who has developed a theory called "sonic" awareness, which is a focused musical and environmental consciousness.
**http://www.washingtonpost.com/wp-dyn/content/article/2009/11/01/AR2009110101846.html?hpid=moreheadlines
***See also http://www.answers.com/topic/phonon

Emotional Freedom Technique

The Emotional Freedom Technique newsletter always provides some interesting insights into how we can use our body's electrical system to heal our minds and bodies. In today's newsletter an EFT practitioner/therapist has written about his recent experience with a 16 year old client who was on the verge of being committed to the psych ward after breaking up with his girlfriend. The full story can be found at: http://www.emofree.com/Articles2/relationship-breakukp-desanto.htm

I have reprinted Steve DeSanto's observations about the outcome of the treatment below. First I would like to say that I wish I had known that there were other possible ways of dealing with the crisis when Chris was beginning to come unravelled while in his teens. I am not saying that Chris wouldn't have ended up in the hospital anyway, but access to another way might have saved Chris from becoming a psychiatric patient and the agony of all that goes with it.

Steve DeSanto: "I'd like to point out some important things relating to the above session. First, we have a single mom already stressed out because she’s single and raising 3 kids. Michelle’s a spunky woman and certainly no shrinking violet. But her son’s emotional condition caused her to seriously consider checking him in to the psych ward. If Nadine had not answered the phone, she probably would have done just that.

Unfortunately, far too many parents do. They trust the mental health system out of ignorance. They wrongly assume psychiatrists have the inside scoop on matters of the mind and can somehow work magic. (But they can’t ... unless they know EFT--grin)."

NAMI again

There is something about NAMI's patronizing view of the mentally ill that really irks me. For a bit of fun, I took a Q and A from its Ask the Psychiatric Pharmacist section and thought, what if this were an obese person they are talking about? Everybody knows that you can't make another person lose weight. They have to do it themselves, for their own personal reasons. It's the patronizing attitude that bothers me more than the good intentions. This approach may work with your friends, but it still presumptously assumes that the patient is incapable of making his own decisions for his own reasons. (NAMI does assume the person is incapable of making their own decisions because NAMI believes in agnosognosia, the inabilty to recognize that you are mentally ill!)

So, below is Q and A #14, to which I have copied almost verbatim, but substituted fat/obese for mental illness, diet for medications, FATSO for NAMI. I left in the special case they plead for bipolar and schizophrenia.

As yourself as you are reading this, if this approach will really work if you try it on your friend. I'd say, you've just lost a friend.

Original question: Someone I really care about has mental illness but repeatedly stops taking his medication and his symptoms come back. Sometimes my friend has to be hospitalized. How can I help him? (My thought: Why is this question being directed to a pharmacist in the first place?)

Rephrased question:
Someone I really care about is immensely obese but repeatedly stops dieting and he gains it all back. How can I help him?

PHARMACIST'S response: One answer is to let the fat person know that he can always count on your love and friendship, but his best chances of losing weight will occur when he accepts that proper diet is crucial to his recovery. Sometimes one can help persons struggling with fat (especially those with bipolar or schizophrenia) decide for themselves which is worse – the short periods of time without the donut and the side effects, followed by the inevitable re-emergence of the fat (often piling on more fat than before)..... or, the steadier, prolonged times of skinny living (or at least more manageable fat) while staying with the diet and coping with the hunger. In a recent study, a researcher and colleagues have shown that higher rates of non-compliance with diets were associated with relapse between 6 and 18 months following a previous binge.

Simply relapsing can help some of those suffering with obesity to be more compliant with their diet. To them, relapsing means “hitting rock bottom”, and they will be more motivated to change whatever they can to ensure a better recovery. Others may not be prepared, and will be more difficult to reach. For these people, consistent support and patience are important to maintain.

Another valuable action you can take is to tell your friend about FATSO. There may be a FATSO group in the community in which he lives. You could take him to a FATSO meeting. Show him how to get on the FATSO website and navigate to the different sections available ("Inform Yourself," "Find Support," and "Take Action"). Being an informed consumer will help him understand not only more about his illness but also about the important role dieting can have in controlling his symptoms (in his case, obesity).

It's very important that your friend knows you will be there to help him when his over-eating gets troublesome. Your support in helping him stay on his diet will benefit him greatly.

________________________
http://www.nami.org/Template.cfm?Section=Ask_the_Pharmacist&template=/ContentManagement/ContentDisplay.cfm&ContentID=85046

Alarming weight gain seen in kids on psych drugs

CHICAGO -- Children on widely used psychiatric drugs can quickly gain an alarming amount of weight; many pack on nearly 20 pounds and become obese within just 11 weeks, a study found.

"Sometimes this stuff just happens like an explosion. You can actually see them grow between appointments," said Dr. Christopher Varley, a psychiatrist with Seattle Children's Hospital who called the study "sobering."

You can find the article at: http://www.washingtonpost.com/wp-dyn/content/article/2009/10/27/AR2009102702316.html?hpid=sec-health

My response to this shocking relevation is - oh for heaven's sake. Like this is a big surprise? Alarming weight gain has been observed in adults for years. Is it only when we see it in children that alarm bells goes off?

Eugene, Oregon takes a giant step forward

Hot off the press! The city of Eugene, Oregon passed this resolution last night. Please circulate. Your local paper should know about this.

The original post is from Ron Unger's blog. http://recoveryfromschizophrenia.org/2009/10/city-affirms-choice-in-mental-health-treatment-including-choice-of-non-drug-alternatives-as-a-human-right/


RESOLUTION NO. __________

A RESOLUTION AFFIRMING THE CITY’S COMMITMENT TO HUMAN RIGHTS AND MENTAL HEALTH CARE.
The City Council of the City of Eugene finds that:

A. The City Council of the City of Eugene recognizes that the diversity of our population is vital to our community's character, and that we have a long tradition of protecting and expanding human rights and civil liberties protections for all of our residents, including persons with all types of disabilities.

B. U.S. Courts have affirmed a number of rights for people diagnosed with mental disabilities. At the national level, the right to choose to live in the least restrictive environment that is reasonably available has been affirmed. At the state level, a number of courts have affirmed a person's right to refuse psychotropic medications, even when the state has a "compelling interest" in providing treatment, if less intrusive, effective treatment alternatives exist. These decisions are consistent with the principle that all people have the right to lives free of unnecessary restrictions and intrusions.

C. Many people determine that psychiatric medications are quite helpful for their mental and emotional conditions, and are grateful to have the opportunity to take them. Others find medications to be harmful to their health, unhelpful and/or excessively intrusive and problematic. When people seek treatment and are offered medication as the only treatment option, they may feel coerced into choosing that option. Many of the medications currently provided are typically associated with significant medical risk, are often experienced as subjectively harmful, and their long-term effectiveness remains controversial. Furthermore, there are widely researched psychosocial alternative treatments likely to be at least as effective for many, with fewer harmful effects.

D. Many mental health problems are caused by trauma and human rights violations, such as child abuse, war, racism, lack of housing and economic opportunities, domestic violence, and others. A key element in any kind of trauma is the denial of choice. When people who have been traumatized are denied choices in recovery, an effect may be retraumatization.

E. Serious psychiatric disorder is often thought of as inevitably a permanent condition requiring a lifetime of medication, however research shows that a substantial fraction of those with even the most serious diagnoses do fully recover, eventually not requiring treatment. Treatment choices, designed to foster rehabilitation and recovery, which include working, living, and participating in the life of the community, have been shown to increase such recovery.

NOW, THEREFORE, BE IT RESOLVED BY THE CITY COUNCIL OF THE CITY OF EUGENE, a Municipal Corporation of the State of Oregon, as follows:

Section 1. All mental health service providers within the City of Eugene are encouraged to incorporate self determination and consumer choice as much as possible, with accurate information provided to consumers and to families about those choices. Special emphasis should be placed on providing diverse alternatives in treatments, including non-drug alternatives, whenever possible.

Section 2. All mental health service providers within the City of Eugene are urged to offer a full range of choices designed to assist in complete recovery. Section 3. This Resolution shall become effective immediately upon its adoption.

The foregoing Resolution adopted the ____ day of October, 2009.

____________________________________
Acting City Recorder

Martin Armstrong's cycle theory becoming less of a secret

"We seek and see patterns in things. It is the way our minds work, presumably for the purpose of survival."*

What I love about schizophrenia is how relevant it is to the life forces of our universe. There is almost nothing that I encounter on a daily basis that doesn't relate in some way to schizophrenia as I have come to understand it. The latest is an article in the New Yorker magazine about market cycle guru Martin Armstrong, whose ability to predict market cycles based on the mathematical ratio pi, earned him billions and, unfortunately, since 1999, jail time. For obvious reasons I wish I understood as much about the cycles of the market as I think I do about how energy vibrations relate to schizophrenia. On the other hand, Mr. Armstrong has been at his obsession since the 1970s and I only relatively recently started to grasp that there is a link between energy vibrations and schizophrenia.

Losing one's mind is treated by Western medicine from a biochemical perspective, but is seen by ancient and indigenous cultures in a completely different and more positive way. Ancient and indigenous peoples and religions use vibration as a pathway to the power that shapes the universe. These can range from ceremonially inducing a trance-like and/or hallucinatory state through yoga, music, or plant stimulants that shift the center of energy.

Martin Armstrong began to sense a pattern to the rise and fall of markets when he realized that on average there was a financial panic every 8.6 years between 1683 and 1907. He realized that there was a natural rhythm to the economy and world affairs that followed 8.6 year cycles. Later, he realized that the number 8.6 was 3,141 days, or 1000 times pi (3.141) Pi is an irrational number that governs the physical universe (pyramids, the swing of a pendulum, etc.) If it governs the physical universe, Armstrong reasoned, why could it not govern the financial markets and human behavior?

As technical analysts do for markets, people with schizophrenia see patterns where other people fail to see them. It looks like chaos to us, but as I have said many times, if you pay close enough attention to what is said, there is more than a thread of logic and ultimate truth tying it all together. Technical analysis of market forces say that the market fundamentals like balance sheets and price/earnings ratios are less important than emotions and the so far unexplainable forces that produce quantum changes in markets. "The idea that there may be celestial influences on the spontaneous desire to invest or not is an old one," a trader is quoted as saying in the article, "but it's too embarrassing to explore in modern economics. These topics are not fit for polite conversation in most circles." To which I can add, "or even when healing schizophrenia using energy therapies." I don't bother talking to people about this anymore. They begin to nervously back away from me, as if I, too, have caught the so-called disease of schizophrenia.

Martin Armstrong believes that cycles in life (and the markets) started with the Big Bang. Very early on I began to entertain the idea that schizophrenia is also related to the Big Bang, but I couldn't and still cannot explain it. I do think that schizophrenia is possibly related to sub-particle behavior, which is less predictable than the mass behavior Mr. Armstrong has observed that comes in waves. Perhaps people with schizophrenia are closer to the "God particle" than the rest of us. Many are obsessed with religion and see themselves as God or a God like figure, which to me is an enormous clue that science, so far, has failed to link to physics. I am being perfectly serious here, by the way.

The therapies that most correlate with the cycle theory that Chris and I have undertaken are sound therapy, which replicates the spiraling sound waves following the Big Bang, the Tomatis Method, which recognizes that our behavior is governed by what we hear, and the assemblage point shift. Cathartic psychotherapies also correlate because they are often ceremonial in nature and stimulate cellular changes through a release of emotion. What I am trying to do in having Chris undergo these therapies, is to put his emotions and actions more in sync with the natural world and to not be overwhelmed by it.

On reading the New Yorker article, I found another fellow traveler in Edward R. Dewey, the chief economic analyst at the Department of Commerce in the early 1930s. Like my experience in asking psychiatrists what causes schizophrenia, Mr. Dewey asked a number of economists about what caused the Great Depression, and he found that everybody had a different explanation, which to him meant that nobody had a clue. This has a familiar ring to me. At this point you either accept the wisdom (?) of the crowd, or you continue to look for meaning in what otherwise looks like chaos. Mr. Dewey found his answer in the view of a particular economist that business behaviors have a tendency to repeat themselves.

I am not writing this to boast that I have unlocked the key to healing schizophrenia, because clearly I haven't. To me, though, there is growing compelling evidence, such as demonstrated by Martin Armstrong, that we are all sensitive to universal forces that began with the Big Bang. Observing the phenomenon of schizophrenia gives you a ring side seat in the quantum universe. This information, even if barely understood, can still be used to heal.

_____________________________________________
*The Secret Cycle: Is the Financier Martin Armstrong a con man, a crank, or a genius?, Nick Paumgarten, The New Yorker, October 12, 2009
http://www.themartinarmstrongcase.com/wp-content/uploads/2012/09/NewYorker1012091.pdf

Consumer empowerment

Ron Unger has written a superb piece on consumer empowerment which I think is a must read.

"Recovery from many kinds of problems is affected by beliefs about the possibility of recovery. Consider a hypothetical example of a person who has received an injury which affects the person’s ability to walk, but which is not necessarily permanently disabling if strong efforts are made to recover. If the person is led by medical authorities to believe that the disability is permanent, efforts at rehabilitation will probably not be made, and the prediction may become a self fulfilling prophecy. Since the disability at that point is a result of the inaccurate prediction rather than the injury itself, the disability becomes a medical system induced condition.

You can find the rest of his article at http://recoveryfromschizophrenia.org/2009/10/the-role-of-consumer-empowerment-in-mental-health-recovery/

I know a woman whose husband died within this last year, and his doctor was completely shocked that he had died, because his condition wasn't life-threatening. Nevertheless the man in his late 70s went further and further downhill, until he ended up in a nursing home, all the time treated by the same doctor. The doctor said to the wife after the fact, "maybe I was too pessimistic when I spoke with him."

Trauma revisited

I am becoming quite uneasy with the way the word "trauma" is bandied about in the context of schizophrenia. Trauma is often likened to something immediate, like child sexual abuse or having a parent who beats you daily in an alcoholic rage. I fear that what I see as a growing insistence to link child abuse with schizophrenia is turning into a witch hunt. We are all traumatized in some way by our upbringing, even by "good" parents. Most of us don't go on to develp schizophrenia.

Trauma in schizophrenia is usually much more subtle than that. It depends on the individual and the personal family history. That's why one person's schizophrenia is never identical to someone else's. It is context specific. It can't be replicated in others because everybody's environment is different.

Think of dropping a stone into a pool of water. The pool is the pool of you, your children and your ancestors. The stone is a triggering event. It could be an untimely death, a grand deception, a stay in prison, an illigimate child. The ripples radiate out in concentric circles. Each generation is a circle. There is displacement. Most of us are not that sensitive to the ripples. But some of us are. Some of us sense that something has happened without knowing anything about its origins. That can be schizophrenia, or depression, or it could be a childhood cancer. There are all kinds of conditions that we take on in response to pain.

Let's understand that "trauma" can mean deeply held "feelings" that even the suffer is unaware as to the origin. The sufferer passes these feelings on

Trauma is human suffering not made conscious.

The need to get away

I just dropped Chris off at the airport. He is spending a long week-end with former university friends in a large city. We went through the list - passport, plane ticket, phone numbers, medications, NADH energy pill. He squeezed everything into one carry-on bag and was totally prepared. He was demonstrating that he is again the well-organized person that he used to be. In other circumstances, I wouldn't be the least bit worried. After all, Chris is twenty-five. However, he is a twenty-five year old who has not managed to do all the stuff that his friends have been taking for granted for several years now. He will be staying in a youth hostel for part of the time.

However, he needed a break from the boredom of not having not enough to do and having no friends of his own age around. One of the hardest things about this is that friends move away. A couple of friends fell away during his recent relapse. I am grateful for the ones who still keep in touch.

I am hoping that a change of scenery will give Chris fresh insight and imbue him, even just a bit, with a sense of direction. He is working, very slowly, with an occupational therapist who is helping him to discern where his talents and strengths are. There is a lot more to schizophrenia than just the absence of psychosis. You might think, great, he's not psychotic, he seems reasonably intelligent, so why isn't he back at university, or working hard a job or whatever?

The answer is, I just don't know. He is more than capable of holding down a job, if his volunteer work is any indication. When Ian and I tried pushing him back to university last year, we got relapse. Ian and I are no longer pushing. We are simply waiting.

Mental disorders treatable by your family doctor

The World Health Organization's Mental Health Gap Action Programme highlighted through World Mental Health Day recently that mental disorders are treatable and most of them can be treated in primary care, meaning in your family doctor's office or community clinic.

The report says that treatment does not always mean medication and that many mental disorders can be treated using psychosocial methods. A study carried out in China confirmed that epilepsy could be treated with an inexpensive anti-convulsant medicine by health professionals who had undergone basic training.

The catch here is that treating mental disorders in primary care settings is what WHO recommends for developing countries. Why can't the same be true for developed countries? Dr. Abram Hoffer said years ago that schizophrenia could be treated by family doctors. Three years ago I asked our family doctor to take over Chris's care in conjunction with his psychiatrist, and the answer was "no." The answer will still be "no."

If schizophrenia could be treated in primary care settings bolstered with psychosocial interventions it would go a long way to taking away the fear and stigma surrounding this label. I suspect more people would get better because it would "normalize" the situation. The WHO has already reported that the incidence of recovery from mental illness is much greater in the developing world. While it is not the premise of this latest WHO report to analyze why recovery from mental illness in the developing world is more likely than in the developed world, the report confirms why it will continue to be so.

The report can viewed at http://www.who.int/mental_health/mhgap_final_english.pdf

An inspirational approach

A better approach than what NAMI offers was put forward at a round table discussion with psychiatrists that I attended during Mental Health Week. This involved a panel of heads of mental health user networks from several countries who discussed how to empower people to take charge of their own mental health. David Crepaz-Keay from the UK was particularly compelling because he stated flatly that the problem with health care systems as most people know them is that they don't advocate any options when people don't want to take the meds. He feels strongly that individual's choices should be respected and the person helped to get better using other interventions, of which there are many.

David Crepaz-Keay ought to know. Given the medical diagnosis of schizophrenia at the age of fourteen he says he didn't get to where he is today by following medical advice. He also expressed grave concern about the culture of low expecations surrounding people with a schizophrenia diagnosis.

Here is an out-of-date bio of David Crepaz-Keay that is on the Internet. Unfortunately, I can't recall what his latest position is, but it's more senior to the one posted.

Profile - David Crepaz-Keay

Posted: 28 July 2005 | Subscribe Online

How long in the job? Four weeks.

I didn't get where I am today by: Following medical advice.

Over the course of my career, I wish I hadn't: Admitted to knowing how computers work, condemning myself to years of hard labour as unpaid IT support.

The person who influenced me most is: Pamela Jenkinson, then chair of Wokingham Mind, who I met as a hospital in-patient. She told me to do something more useful with my life.

Me and my career: The treatment of people with a psychiatric diagnosis has changed beyond recognition over the 26 years since I first received one. Although prejudice is widespread, it is demonstrably possible for people who have used psychiatric services to run mental health services.

One of the biggest blocks to developing significant roles for disadvantaged groups is other people's low expectations and the mental health world is particularly guilty of this. Part of my new role is to dismantle these barriers.

One of the most important challenges facing mental health over the next five years is to move from talking about user empowerment, to making it happen.

Curriculum Vitae
June 2005-present: Senior policy adviser at the Mental Health Foundation.
1997-2005: Consultant, deputy director and chief executive of charity Mental Health Media.
2003-present: Commissioner, Commission for Patient and Public Involvement in Health.
1990-8: Consultant on service user involvement, various health and social services departments.
1982-91: Worked at HM Treasury and in the water industry.

http://www.communitycare.co.uk/Articles/2005/07/28/50363/profile-david-crepaz-keay.html

NAMI perpetuates schizophrenia

In belated honor of World Mental Health Day, I thought I would begin with the National Alliance on Mental Illness (NAMI). As a parent, I'm supposed to like NAMI, right? It's a grassroots organization "dedicated to improving the lives of individuals and families affected by mental illness."

A stroll through the schizophrenia section of the NAMI website is a downer. NAMI is hardwired into promoting medications, while I assume that many of the people it supposedly represents and who are following NAMI's advice aren't that hot on them. The NAMI website even has an "Ask the Psychiatric Pharmacist" section. The answers found there in the FAQs freely admit that some of the drugs are addictive, they have unpleasant to life-threatening side effects, and yes, there are long term consequences to using these drugs. At the same time, the pharmacist goes on to reassure us that taking the meds somehow offers protection to the brain cells from becoming damaged due to mental illness. The "client" is treated like an idiot, who has no real clue what is in his or her own best interests.

I am dumbfounded that NAMI would dismiss the real health consequences of these drugs for those of their clients who are the front lines here, but of course, I shouldn't be. NAMI is more of a relatives' organization than a users' organization. I know of many people who are suffering the consequences of looking after their rocky relatives and NAMI gives them what they want - the ability to convince themselves and their relatives that they are better on the drugs than off them. It all makes sense until you end up with a relative who is on the meds, grossly overweight, perhaps diabetic, but still psychotic. NAMI dismisses the side effects and the psychosis by emphasizing that people just need to find the right medication. It's a vicious circle. There will always be a drug in the NAMI pipeline of advice. After all, NAMI supports the latest research, which is heavily weighted in favor of meds because that's the only research that is considered authoritative. There is no research money in people's actual experiences. To NAMI, schizophrenia is a biochemical disorder and that is all it is.

Many people say that NAMI helps them to cope better with an admittedly difficult situation. I understand and empathize because we all need to find ways to cope with a very scary, bewildering situation. My objection to NAMI is that I don't want either me or Chris just coping, I want to move beyond that to cure. But the NAMI website doesn't hold out that prospect. Coping is the best it's ever going to be in NAMI's view of things, especially when it comes to schizophrenia.

To NAMI recovery is all about coping - group living, structured programs, continuing of course with the medications, professionals (not you) taking charge of your life. The professionals can also be of service to monitor your meds. When NAMI talks about helping you to do your grocery shopping and to manage your money in pursuit of what it calls the prospect of a higher level of functioning (only the prospect of this low standard, may I point out), it makes me wonder whether the brain cells are actually being protected by the meds NAMI so strongly endorses. I see my son at the age of forty out grocery shopping in his bathrobe, drooling and disheveled, with a caring professional showing him what money looks like.

Coping is all you are going to manage to do if you take NAMI's advice on the meds. It does not recommend getting off medications for schizophrenia. The NAMI website won't even acknowledge that many people have done so and are doing just fine, thank you very much. The NAMI website is an exercise in scare tactics. It hasn't pointed out, as a grassroots organization should, that nobody wants to be on meds if they can help it. Many people don't want the meds and would actually like help getting off them and finding other strategies to deal with their problems. Doing so might put the individual outside the realm of just coping. NAMI would find this probably too radical a concept.

I don't and I won't envision that bleak future for Chris As a caring relative I can do my part to make sure he is not merely "functioning", but thriving. I have more confidence in the holistic approach than I have in what NAMI offers.