Medical insecurity

I long ago stopped telling Chris’s psychiatrists what Chris and I were up to outside of Chris’s appointments, the only exception being the holistic psychiatrist, who seemed to sense what we were up to, anyway. Her muscle testing freaked me out it was so accurate. I became afraid to take any unilateral action because somehow I thought she would “know”. Do I vote Republican or Democrat? It seemed like she would “know.” If I substituted an inferior quality vitamin to what she recommended, I thought she would “know.” I grew dependent on her and that’s not a wise thing to do with a psychiatrist.

The few times I let Chris’s psychiatrists in on what I was doing, I wished I hadn’t. Invariably, they would tense up, lean forward, and want to know exactly what kind of esoteric thing I was up to now. None of the extracurricular stuff Chris did involved medications, and they already knew about the vitamins, so what was the problem? In some ways, I am a quick learner. After the whole hassle we originally went through trying to bring in a second psychiatrist to recommend vitamins, I decided that nothing I did afterwards merited confiding in them.

The point of a being a physician, I would have thought, is to empower healing in patients (family is included here), by encouraging them to think for themselves, to inform themselves, and try different things that do no harm while hopefully doing some good. A good physician is also willing to learn from patients. We have been fortunate to have been able to hand pick two of Chris’s psychiatrists, who are both quite willing to learn from us.

I recently needed a medical professional to write a prescription for Chris for the Tomatis Method so that the insurance company would cover it. Our family doctor, who I long ago decided is totally unimaginative, flatly refused to issue a prescription. “I don’t believe in the Tomatis Method,” he said. Perhaps he wonders why I haven’t sent Chris to him for regular check-ups in recent years. So, next I tried Dr. Stern, who wanted to have more information about Tomatis before she issued a prescription. Fair enough, I suppose, except that she already knew that the therapy is about music, and is not a competitive threat to her. So we did this little dance, and eventually I got the prescription.

Clozapine

I find the whole subject of drugs very boring. Ditto for vitamins. There is only such much you can say about them when it comes to treating mental illness. For the record, Chris has been on the following medications. Respirdal, Effexor, Abilify, clozapine, Solian, Serdolect. I think he has been on enough. I thought he had been on enough after sampling only two of them. I feel I have been misled from the beginning about the medications. The hospital never indicated to us that there was another way to treat psychosis, e.g. using megadose vitamins in place of medications or through targetted psychotherapy. Ian and I were new to the game and never thought that there might be alternative theories as to what schizophrenia really is and how to treat it. We trusted the doctors to get Chris well.

We were misled about the clozapine. Chris had only been on Respirdal and Effexor, then briefly Abilify, when the doctors began urging clozapine on us. I had heard it was for the “treatment resistant” (to a layperson, it means they have tried everything else with no success and after that you are considered chronic) and so we resisted putting Chris on it. Having only tried two antipsychotics, I thought it a tad premature to label him treatment resistant. What clozapine did was to add many more pounds onto the pounds that the previous drugs had already added. Chris also had to put up with getting blood tests done every two weeks.

The doctors at Chris’s program thought clozapine was marvelous for their patients – they said so often. They didn’t have to deal with Chris’s raging hunger, the fridge door always open and our food bill practically doubling. Chris was now a prisoner in his own body. Unsurprisingly, clozapine didn’t improve Chris. Faced with a patient who didn’t respond to clozapine, the doctors preferred to leave him on it anyway, over Ian’s and my objections. It was their drug of last resort.

Clozapine is a bitch to get off of, but it can be done. You can go into the hospital and reduce it rather quickly while substituting another drug, or you can do it very, very slowly over time. At first Chris’s holistic psychiatrist was reluctant to even try taking him off it because she had heard no one had ever come off it successfully. She felt that people who had been on it more than a year would not be able to withdraw. When she told me that, I was crushed. Chris had been on it two years at that point. Lucky for us she was willing to try. It took Chris one year to go from from 25 mg of Clozapine to 0.

A broken mind is not the same as a broken neck

Today at work I passed a man whose son lost the use of his limbs after a snowboarding accident a couple of years ago. These fleeting encounters always give me pause to feel saddened but relieved that Chris had merely lost the use of his mind for a period of time.

After the snowboarding accident, a co-worker organized a charity run and raised a substantial amount of money to help with the young man’s rehabilitation. His initiative in doing this is commendable. The young man has huge rehabilitation expenses.

The young snowboarder’s physical needs are obvious. Unless a miracle happens, the young man will still be in a wheelchair ten years from now. He will have on-going practical considerations about how to manage his life.

The hardest part for me in helping my son to overcome his problems has been the negativity of the medical profession, who act as if Chris’s prognosis in the same league as if he broke his neck. Now, if they don’t really feel this way, and most would probably not agree with me at all that their attitude needs readjusting, then why aren’t they saying in greater numbers that schizophrenia is a condition that most people can eventually walk away from? Taking a different attitude towards it would help a lot of people stay the course and not become discouraged. The worst part about mental illness at the beginning is the uncertainty because no one seems to be able to tell you what your life can or will be like in ten years, and they seem very sad about it, too. The feeling of being alone with your problem is overwhelming.

Vincent

I was late getting my post out today because I went to an art exhibition. There were a number of paintings by Vincent Van Gogh, which gave me a unique opportunity to look at his work again with the eyes of someone who has lingered in the territory of madness. One of my friends remarked afterwards that it was easy to tell from viewing the paintings consecutively when it was that Van Gogh really started to “lose it.” I thought, “Exactly, his art actually got better once he started to lose it as you refer to it. This period of productivity is what the world knows and loves most about his work. This is also when he is at his most interesting as an artist.”

His paintings weren’t signed, except for one where “Vincent” was painted in large red lettering in the lower left. “That’s odd,” I thought. “Most artists sign their work.” Then I thought about it, and concluded it was odd but understandable if you haven’t got a firm grip on “self”. You barely feel entitled to be in this world at all. I have seen this in Chris. I used to say that Chris apologized for breathing the air.

The exhibition described Van Gogh’s period before he shot himself as intensely “productive.” This I construe as a code word for being in a manic state. Seventy-six paintings were painted in seventy-five days and then he shot himself. Another code word described Van Gogh as intensely “religious.” Check.

I began to wonder about Dr. Gachet’s intentions. Vincent Van Gogh lands in his asylum, which must have looked like manna from heaven to the art-savvy psychiatrist. I speculated that Dr. Gachet handed him some art supplies and told him to get cracking. “Just one more painting, Vincent. You’ve only done seventy-five so far,” he might have urged him. “And, while you are here, how about coming over to my house this week-end and painting my lovely young daughter at the piano? By the way, I’d love a painting of my house, and you might want to think about signing your paintings.”

I believe I’ve just been vindicated in my opinion of Dr. Gachet. I googled him, and sure enough, according to Google (so it must be right, eh?) Van Gogh, too, became suspicious of Dr. Gachet. “Sicker than I am, I think, or shall we say just as much,” was Vincent’s assessment.

Coming to his senses: Chris’s self-assessment of the Tomatis Method

I began the Tomatis therapy in May of this year and I am just now finishing my third session, in all, thirty one days for a total of sixty-two hours. Two hours a day can really drag on, even if you enjoy painting or whatever tactile activity is offered at the Tomatis Center. Sometimes I just lie down, but this really is to be avoided as in addition to the warning of “you must keep your hands busy”, it can drain you of your energy for the rest of the day.

If you’ve ever seen “A Clockwork Orange” based on the novel by Anthony Burgess, you can perhaps better appreciate the idea behind the Tomatis Method. In the film, violent Alex loves Beethoven, but after undergoing rehabilitation, including hearing his beloved Beethoven played over a Nazi propaganda film, he is “cured” both of his love of violence and also of Beethoven. By filtering and repeating, ad nauseum, Mozart and Gregorian chants, you really question all your senses and how you derive pleasure from them. The Tomatis Method is really maddening and you get the urge to run somewhere away from the music, and you start to blame yourself a bit for the pain of the constant repetition. It gets lonely as well, with no one to compare your art with and no one to think about while you’re listening to the music.

I have always been, if not a clumsy, then a primitive visual artist, yet I’ve found an appreciation for everything that goes into painting something with meaning. In my Tomatis sessions, I mostly draw stick-figures and simple landscapes, little outdoor scenes with some children or a stormy afternoon. For an eleven-year-old, it’s not bad, especially the ones where I use crayons. I want to paint or draw, well, better, but now I notice how every little effect of color, the texture of the crayon or paintbrush, becomes so important to me, that I know I can’t draw what’s in my mind because my senses are controlling me.

It’s difficult to describe the effects of this one therapy because of other therapies and techniques which I have undergone. I don’t hear Mozart ringing in my ears as I do my food shopping, but I do become a little tired after the session is over and just want to watch TV and relax, anything to “center” me so I can feel alert to confront the rest of the day. There are overlaps with the Alexander Technique, craniosacral therapy, gem therapy and, indeed, dear old singing lessons. With singing, one of the most important things to get right is being in tune, and I have known people who cannot sing when the rest of the choir is out of tune with respect to the piano. I’ve noticed that I’ve become more exacting from my voice, that it is more difficult to sing out of tune. So everyone else is singing, and all of a sudden I stop completely. How much of this can be attributed to overconfidence I’m not sure.

I have noticed that after the therapy I feel much more communicative, and exposed. Previously, when I became angry with my brother over a television show or something similarly stupid, I was able to control my emotions and articulate my frustration. Now, with this heightened emotional sense I find that when I listen to people, they aren’t “just people” anymore, but I hear the subtext of their concerns, their emotional presence takes the place of being “a body in space.” The Gregorian chant from the sessions really makes you pay attention to the “spiritual presence”, and this is both confusing (people are less predictable) and also exciting. I get the sense that people can float in and out of rooms, and I start to lose my sense of self. Also, I become more critical of myself, noticing every change in breathing or of not being comfortable and this is very annoying. The music really clears your head, so you can’t fixate on any one idea or topic, you have to put aside any concern you presently have, because you’re in another place altogether.

Documentation of Tomatis results

A Swedish center, Tomatis Nordiska AB, has extensively documented the results of its work with clients since 1998, using a self-rating questionnaire which was developed by other Tomatis centers. These results are published at http://tomatisassociation.org/Content/Documents/Document.ashx?DocId=60422

Of the children with one or more medical diagnoses, the majority had either very serious conditions, such as autism or Aspergers syndrome, or disorders such as ADHD. In spite of these diagnoses, the results indicated that the children demonstrated substantial progress as a result of the training.

One conclusion that the Swedish center drew, is that the training appears to have beneficial effects on concentration and attention difficulties, as well as on social adaptation and behavior, in both adults and children, even in severe cases.

In my son Chris’s case, I am extremely encouraged by the subtle, but profound changes I see happening. Chris is a different person today than he was when he began the therapy in May. As an outsider looking in, it is hard to put a finger on it. Chris’s voice has changed. He just sounds more “normal” somehow. He speaks in a normal voice about normal things with his brothers. Not that he had what I ever considered an abnormal voice, but something has changed. It’s lower, for one thing. His body movements are more fluid. He seems sincere in a manner that I cannot explain. He is calm but more determined. He says his dreams are more vivid and continuous. All of the above must be when people say that someone is becoming more “grounded.” He complains of being more tired than usual, which may be an indication that his medication needs lowering.

As long as we stay the course, I feel that Chris’s difficulties over the past six years will soon be behind him. Tomorrow’s blog will give Chris’s impressions of what Tomatis has done for him. I’ve had a sneak preview. What Chris is articulating about the changes he has noticed, I can reduce to “living less in his mind and more in his senses.”

Why schizophrenia is not a disease

The mistaken and unhappy notion that a man is an enduring unity is known to you. It is also known to you that man consists of a multitude of souls, of numerous selves. The separation of the unity of the personality into these numerous pieces passes for madness. Science has invented the name schizomania for it.

I do not believe there a pathological disease called schizophrenia. If people labelled schizophrenic really have a disease, it begs the question, why aren’t neurologists overseeing their care? The state called schizophrenia often strikes the gifted, the sensitive, the creative – people struggling to express something about their world that others fail to see. I began to understand and appreciate the journey my son was going through when I turned to literature for the answers that Western science seemed unable to provide.

Well, okay, I turned to Hermann Hesse and Google for many of the answers. For Hesse, schizophrenia can be a transformative process.

Demian is about a very specific task or crisis in one’s youth, which continues beyond that stage, but mostly affects (sic) young people: the struggle to forge an identity and develop a personality of one’s own.

Not everyone is allotted the chance to become a personality; most remain types, and never experience the rigor of becoming an individual. But those who do so inevitably discover that these struggles bring them into conflict with the normal life of average people and the traditional values and bourgeois conventions that they uphold. A personality is the product of a clash between two opposing forces: the urge to create a life of one’s own and the insistence by the world around us that we conform. Nobody can develop a personality unless he undergoes revolutionary experiences. The extent of those experiences differs, of course, from person to person, as does the capacity to lead a life that is truly personal and unique.

_________________________________
1. Hesse, Hermann, Steppenwolf, Bantam Books, 1974
2. Hesse, Hermann, Soul of the Age: Selected Letters of Hermann Hesse, 1891-1962

Play the ball as it lies

This is my last post before taking the month of August off. I am at a crossroads as to the direction of my blog. I hope that my time away will provide fresh insight or else help me to realize that my blog has served its purpose and it’s time to close. Comments and suggestions are most welcome. I read and answer every e-mail.

A reader has asked me what I think the cause is of Chris’s problems. I answered “me”! I am only being partly facetious when I say this. While there are probably many reasons for why Chris is the way he is, I do think that mental illnesses (in fact other illnesses, too) grow out of the family story. As painful as it is, I feel that self-examination is important to appreciate larger truths. Another way of looking at is that “the apple doesn’t fall far from the tree”. This to me is a comforting thought. It says that Chris’s problems are not insurmountable, in fact, they are understandable in the family context.

Too many of us turn our problems over to institutions and seek medical answers when we could put more of the onus on ourselves to seek answers and to provide solutions. Nobody will ever care about your relative the way you do, or the way you should. Many readers will object to this last statement, citing personal circumstances, dual diagnoses and the impossibility of living with someone with a mental illness.

What I have noticed, is that Chris wants to be with his family. His behavior at home has, on occasion, tested our patience beyond all belief, but sending him away is only a temporary solution. While he is away is a chance for us to get our own house in order. The street is not an option for us, no matter how tempting it is in our worst moments. The loneliness of those diagnosed with a mental illness only intensifies when separated from the family. Sure, I can visit Chris every day in the hospital, but it’s not the same.

What is missing in the mental health system, no matter where you live, is empowerment, helping patients and families to help themselves get better. If the customer is always right, then why isn’t the patient, or the involved family member, by extension, always right? If, for example, a person does not want to take medications, then shouldn’t this be an indication that some other solution should be sought? When families can’t cope with the patient at home, then why aren’t there affordable, short term, drug free treatment options to allow a needed time-out? Mainstream medicine is not very consumer oriented when it comes to allowing people to choose.

We do not play the ball as it lies when it comes to treating mental illness. Many people who have been labelled mentally ill are creative. They are inclined to art and music. Yet, the solutions we impose on them are scientific. We give them meds and talk about their biochemical imbalances, as if they are laboratory animals. Could they be telling us that the solutions to their problems (our problems) lie in the realm of art and music if we would only speak their language?

Recovery: not what you were thinking

Chris and I have come full circle. He has been out of the hospital since May and doing well at home. By doing well I do not mean he is free of delusional thinking. It is there, running beneath the surface like a low grade fever. This may come as a surprise to anyone who labors under the false impression that being on meds takes care of all that. It doesn’t. Chris, for the time being, is sociable, humorous, helpful, and a regular guy in many respects. May it ever be so. He is once again considering enrolling in a university course this fall, if only to stem the loneliness. I have faith that Chris will continue to recover in surprising ways.

I am pleasantly surprised to discover that Chris has recovered rather quickly this time around. This is not what I have been led to believe. I have read countless articles that claim that it takes much longer to recover with each relapse. I don’t know where this claim comes from, but naturally my suspicion falls on the pharmaceutical companies. Even so, real people (as opposed to just pharmaceutical companies) also report that it takes longer for the medications to be effective a second or even third time around. The issue is whether you consider the medications effective in the first place, which I do not. I feel that the medications have only been helpful for Chris as a sedative, not as a symptom reliever.

Chris was a more evolved person in any case before his recent slide. I credit this to the fact that my husband and I cared enough to keep at it and to try new ways of thinking and new interventions. I consider it less a relapse on Chris’s part than a necessary breakthrough. R.D. Laing says it best: “Madness need not be all breakdown. It may also be break-through. It is potential liberation and renewal as well as enslavement and existential death.”

I hope that I have painted a realistic portrait of what recovery can look like. It is not as straight up as many would have you believe. I do believe, however, that focusing on the individual and not giving up, goes a long way towards helping your relative regain a normal life.

Where can you go just to heal?

Dr. X asked Ian and me after Chris had been under his care for three weeks, what our thinking was as to why Chris was improved. “It’s easy, we said, “he’s away from us!” It was getting absolutely awful at home. Chris is angry and the situation just kept getting worse. Now that he’s away from us, and we’re away from him, he has a chance to regain his bearings.”

The simple explanation put forward by people who know Chris best (his family) was not taken seriously enough. Dr. X was having none of it. While we all had feel good words of encouragement for each other at our meeting, Dr. X was determined to tinker with the low dose of the one med that Chris on. We had managed to keep Chris’s dose at 10 mg for almost a month, but the pressure was on to add another antipsychotic at a similar low dose. Why? I believe for no other reason than because the health care system we are under believes in two low dose antipsychotics taken concurrently. Dr. X didn’t say that, of course. He said he thought Chris could improve some more if we just found the right combination of drugs. “Yeah, right”, I thought, “and I bet he would also improve just by coming home”. Then a darker thought intruded: “What’s the particular relationship here between the drug prescribed and, say, funding a new wing, of this hospital?”

Why couldn’t they just leave well enough alone? Chris was improving anyway just by getting away from us. Families need a break from their psychotic relatives, but there is nowhere a patient can go under medical supervision where he can just get on with it without drugs. Time and distance is a great healer, too, but this goes unrecognized in today’s mental health system. To an institution, it’s all about the drugs. Dr. X went as far as to tell me that the “newest” research says that people should continue on low doses of antipsychotics for a long time, and not go off them. I think that the pharmaceutical companies are writing the script here.

The drugs are placebos at best, in my opinion. A drug, to me, is effective if you no longer have symptoms and ugly side effects, and that is not the case with antipsychotics. The newer antipsychotics produce fewer side effects, but, like the older ones are not terribly effective at alleviating symptoms. One measure of the effectiveness of a medication is how long the patient adheres to taking it. A Wall Street Journal report of a 2005 study by the National Institute of Mental Health, stated: “Nearly three-quarters of people treated stopped taking the medicine they had been given within 18 months, due to side effects or poor control of symptoms.” The Washington Post noted: “The surprising result of a federally funded study released yesterday challenges widespread assumptions among psychiatrists about the best way to treat serious mental illness and underscores the extent to which physicians, patients and policymakers can be blindsided by self-interested research by drugmakers.” In other words, the newer antipsychotics are no more effective than the old ones. The study was about the pros and cons of types of medication. It did not consider other best ways of treating mental illness, such as psychotherapy and energy psychology. Predictably, the National Institute of Mental Health is now looking at – guess what – furthering research into even newer drugs to treat mental illness. The NIMH won’t be going holistic anytime soon.

The pathetic explanation of why Chris ended up back on two antipsychotics, after having being weaned off them through the judicious use of supplements and alternative therapies boils down to I got tired of being the odd one out. When Chris started to go downhill, everybody but everybody was clamoring for us to medicate him. The only hold out other than me was the holistic psychiatrist, and unfortunately, she lives far away. Chris also didn’t help his case or mine by going psychotic.

Our relationship with the holistic psychiatrist died when we put Chris in the hospital. In her opinion, we, meaning Chris and his parents, failed to prevent Chris from going nuts. Working with her was great while it lasted because she taught us so much about healing. I am knowledgeable enough now about vitamins and supplements to continue working on my own with Chris. I am not looking forward to fighting a new war on the medication front, at least not for now.

The doctors will credit any progress Chris makes in future with his being on medications. If Chris, for whatever reason, does poorly, they will want to raise the medications rather than help him deal with his problems holistically.

______________________________________________
Federal Study Finds No Benefit of New Antipsychotic Drugs – WashPost/Wall StreetJ/NY Times, Tues 20 Sep 2005; New Antipsychotic Drugs Criticized, Federal Study Finds No Benefit Over Older, Cheaper Drug – Washington Post, Tuesday, September 20, 2005 http://www.ahrp.org/infomail/05/09/20.php