Holistic Recovery from Schizophrenia

How not to be a patient

For several years I was a member of on on-line schizophrenia community. Many of my opinions about schizophrenia were formed from what I learned there. After a while, I began to notice that most of the people there were what I would call professional schizophrenics, because they accepted the label and all that is involved with being a patient. They knew everything about medications, but not much about other ways of looking at the problem. In many cases, the meds didn’t work, yet they persisted in trying more. Many of them were taking staggeringly large doses of a number of antipsychotics. To this they added antidepressants and other drugs. Their lives were desperate and generally chaotic. They had abandoned hope.

For many of the members of the group, a lot of the chaos was due to inadequate health insurance or no insurance. This only adds insult to injury by compounding the problems of the mentally ill while bearing no relationship to achieving mental health. Bad health insurance or no health insurance distracts people. They end up fighting with their insurers rather than concentrating on the real issues. They are worn out from the fight. At the same time, they fervently believe that they have a brain disease, so they think there is nothing they can do. They often considered themselves a “special case,” much harder to cure than other people with schizophrenia.

None of these particular problems are insurmountable, though, depending on your attitude. It also helps to have someone who trusts in you and believes in your recovery.

I noticed that the people in the group who were actually doing well were the ones who didn’t consider themselves patients, who had little time for the meds and had found their sanity through either going the vitamin route or the therapeutic route or a combination of both. They were well versed in the principles of Buddhism, Eastern mysticism and shamanic traditions. One man highly recommended reading Don Miguel Ruiz’s The Four Agreements, because he said it helped him come to terms with himself. They liked the group of people termed the “antipsychiatrists,” because the antipsychiatrists “got” the idea that there is a largely psychospiritual element to schizophrenia. Yes, it helps to have a psychiatrist, but I noticed the people who seemed to be in charge of their lives were the same people who were also critical of the role of the psychiatrist in their lives.

These people didn’t generally last long in the group, because not enough people were receptive to their message. A lot of them were blunt in their opinions, therefore not particularly likeable. Yet, these were the people who had recovered and wanted to show other people that they could do it, too. Few seemed to listen.
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A new kind of stigma: Not sane enough to be weird

I don’t know how often I’ve attended talks where the researchers are looking into esoteric topics, like flying saucers, past life experiences, etc., and here is how they present their findings: “All the people I interviewed who had reported seeing flying saucers were mentally stable and had no trace of mental illness, otherwise I would have excluded them from the study.” Or, re a study predicting the incidence of psychic abilities in the general population. “Of course, I excluded the mentally ill,” the researcher said.

So supposedly “sane” people who report the admittedly rather odd phenomena of flying saucers or past lives are somehow “more reliable” than the mentally ill? And, there is something “tainted” about the psychic abilities of the mentally ill?

A lot of researchers rely on the presence of another witness to the event to bolster the claim that a flying saucer isn’t just a projection of one person’s fantasies. I’m not sure this is a reliable methodology. There is something called “hysteria,” which can be contagious. When it is contagious it is called “mass hysteria.”

When Chris reported his first alien sighting at the ripe old age of eleven (see: A parallel universe, even in the suburbs – June 2, 2009), he was supposedly sane, too.

If I wanted to learn about the phenomenon of flying saucers, I would study the so-called mentally ill. And if I wanted to learn about psychic phenomena, I would ask them, too. Daniel Paul Schreber has written a classic memoir of mental illness* in which he unveils his detailed understanding of how the universe works. Writing in 1902 he had a precocious appreciation of quantum physics.

Conversely, if I wanted to study these kinds of phenomena, I might want to explore it from the point of view of a sudden energy imbalance. What had happened to the research subjects in the weeks and months leading up to the experience? Was there a death in the family or a physical trauma that could have thrown the assemblage point into the high right position which leads to hallucinations?
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Daniel Paul Schreber, Memoirs of My Nervous Illness

Recovery newspeak

I am not even that thrilled about the use of the word “recovery” as it is understood in the context of mental illness. I use the word recovery prominently in my blog because Chris is still recovering, but I expect he eventually will be functioning completely normally, supporting himself, off medications and doing whatever he likes, and then I will use the word “cure” in his case. I feel he will be entitled to use that word, just like the actor Margot Kidder does. After not having bipolar signs or symptoms for many years she says she’s entitled to use the word “cured.” (I wonder if anybody has pointed out to her that she can’t possibly be cured because “once bipolar always bipolar?”)

Ron Unger, in a recent post, writes that recovery has now been expanded to allow for the possibility of still being mentally ill. It is becoming newspeak for putting the best polish on a less than optimal situation. “Oh, sure, he/she is ‘recovering’,” people will think, “we all know what that means.”

I applaud the recovery movement, I really do, but I also feel that there is a goal post at the end of recovery that should be called “cure.” If we don’t aim to be completely well and functioning, we won’t go far on the field of victory. We will fall short of what we deserve.

Talking dirty – let’s discuss cure

Why is “cure” such a dirty word in mental health circles? A cure simply means that someone with an illness has become healthy again or it can be the solution to a problem. To believe in “cure” in the context of schizophrenia is to embarrass oneself publically. I hereby stand embarrassed.

Yes, it is true there is no “medical cure” for schizophrenia, meaning that no drug has been invented that will take away your symptoms, but somehow the concept of cure has been corrupted to mean only that. We have all read that “schizophrenia is the most serious and devastating of the mental illnesses, there is no cure for it but there are effective treatments (blah, blah, blah)” People who dutifully take statements like that at face value become patients for life. Personally, I wouldn’t want the state of my mental health to hinge on taking lifelong drugs for something where supposedly there is no cure and while many people manage without them.

Dean Radin, in his blog Entangled Minds, has this to say about an article criticizing the small amounts of funding that the National Institutes of Health (NIH) has directed to alternative treatments.

“In the meantime, are there alternative methods that might also be useful, and that often have little to no side effects, and that are usually quite inexpensive? Yes, and fortunately the NIH is providing piddling grants to study them (compared to conventional medicine CAM studies are receiving chump change). But this article seems to want us to drop all such studies: “Taxpayers are bankrolling studies of whether pressing various spots on your head can help with weight loss, whether brain waves emitted from a special “master” can help break cocaine addiction, and whether wearing magnets can help the painful wrist problem, carpal tunnel syndrome.”

“Are such things actually impossible? What if they actually do work? Isn’t that worth finding out? The alternative is that we don’t find out and useless treatments continue to be provided, or that expensive drug and surgical methods continue to be provided, many of which don’t work either!”

“Personally I’d much rather spend my tax dollars looking for simple, effective, cheap methods that work, regardless of what existing theories are comfortable with. Go back just 20 years and large swatches of what used to be taken for granted in science and medicine have radically changed. So how can anyone today possibly believe that now we finally understand everything?” http://deanradin.blogspot.com/2009/06/25-billion-spent-no-alternative-cures.html

What always astounds me is how willing many people are to believe that everything is known, and they are prepared put their life or the life of their relative on hold until “science” comes up with another stab at getting it wrong. Recently, a blogger took me to task for using the word “cure” in the context of schizophrenia. According to this blogger, everybody knows there’s no cure, there is only management for this “chronic illness.” She has bought the official line, and more’s the pity. I can deal with that way of thinking, although I don’t agree with it. She, obviously cannot deal with my way of thinking because she refused to print my comment about “cure.” She doesn’t agree with it so she doesn’t print it. She is saving her readers from what, exactly?

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http://deanradin.blogspot.com/2009_06_01_archive.html

More Br. J. Med. Psychol.

The 1971 edition of the British Journal of Medical Psychology (BJMP) was also interesting. A quick review by me turned up still no mention of medications to treat schizophrenia. True, it a psychology journal, but, as psychiatrists contribute many of the articles, the lack of reference to medication is noted in passing. There are fewer articles about schizophrenia than in the 1961 edition and there is an article about cigarette smoking as a dependence disorder. Shades of the proliferation of medical diagnoses for human habits are beginning to creep in.

What the 1971 BJMP continues to do is to look at the environmental underpinnings of schizophrenia, including the pre-birth environment. This is commendable, and seems to have become a lost art, if my experience with psychiatrists and institutions is any indicator. When Chris was first diagnosed, I expressed my concerns to the doctors about Chris’s gestation period, his not being responsive to touch as an infant, and other things that I thought were possibly relevant to his present state. The doctors discounted my questions as irrelevant. It is a brain disease and has to be treated with medications, was the response.

Not so with the BJMP. In an article entitled “Aspects of the object relationship and developing skills of a ‘mechanical boy’ the authors relate the story of a mentally ill young boy and follow him through several years of therapy to emerge at 19 as a social success. The boy’s pre-birth environment was considered, his confusion at having multiple mothers (grandmother, aunt and mother) until the age of ten, and his seeing himself as a machine. His movements were robot-like and he was fascinated by machinery, even drawing complex machines that uncannily ressembled the functioning of the human brain. The authors see his problems not in terms of genetics or brain dysfunctions, but as a human coping mechanism, a child trying to make sense of his environment: “Apparently, at age 19 he is a sociable young man . . . far different from the mechanistic boring youth he had been before.” No longer clumsy and uncoordinated, he had both a job and a girlfriend.*

The 1992 BJMP is less focused on case studies of schizophrenia than the 1961 and 1971 journal. A small reference to medication appears in an article entitled “Mysticism: The fate of Ben Zoma.” The authors note that hallucinations persisted after receiving low doses of neuroleptic medication, and they wonder “if increased medication would make the hallucinations disappear.”

The March 2003 edition presents research on past-life experiences of young children. Children reporting past life experiences tend to have both high intelligence quotients and verbal skills. It notes that the behavior problems (agression, traumatizing fears and hallucinations, etc.) seen in some of the research subjects increased if the past-life experience centered around a violent death. It also puzzled over how birthmarks are sometimes seen to be in the exact place where an ancestor or person associated with the past-life had suffered a trauma.

Interesting that the results of this kind of research find their way into respected journals of psychology but seem to have no place in today’s hospital setting.

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* Br. J. Med. Psychology, 44-45, 1972-72

The mother, as seen by the Br. J. Med. Psychol.

In the interests of scholarly research for my book, I paid a visit Friday evening to the local university psychology library to track down the 1961 edition of the British Journal of Medical Psychology (BJMP). It was well worth the trip. Almost the entire journal that year was devoted to the subject of schizophrenia, reminding me once again that schizophrenia used to be the exciting and perplexing main focus of psychiatric research. Coincidentally, 1961 was also the year that Carl Jung died, and there was a nice tribute to him in the Journal that singled out his interest in schizophrenia

In one study, mothers of schizophrenics were subjected to a battery of Rorschach tests, word association tests and were interviewed by a psychiatrist. He reports: “The speech of most of the group was so rapid and spontaneous as to be irrelevant and incomprehensible. In these cases the subjects moved from one topic to another with bewildering rapidity, their replies invariably being irrelevant to the questions asked.”

Elsewhere in the article she is described as controlling, manipulative, sexually frigid, and unable to remember exactly when her child began and ended toilet training.

Flipping through the 1961 edition, the peculiarities of the mother are a running theme. The descriptions of her are stereotypical of women at that time and the British woman in particular. These days with reality television and Essex girls, one has the distinct impression that all British women are sexually available and flaunting it. Not so back then. Post-war Britain was a fairly grim, repressed place. The BJMP bequeaths such nuggets as the mothers confiding to the interviewer that they couldn’t stand their husbands “pawing and slobbering” over them for sex. Several mothers tried to ingratiate themselves with the interviewer by asking him personal questions and bringing him restorative “tonics” over the course of several meetings. One mother confided that her husband was such a non-entity that she almost dusted him, too, when she hoovered and cleaned the house.

The BJMP is a telling snapshot of the prevailing attitudes to women at the time perpetuated by a male psychiatrist, a British psychiatrist at that. It is also possible that the findings tell us more about the psychiatrist than the mothers. What background did he come from? Was he a product of the British public school system, removed from his mother and sent to an all male boarding school at the age of six or eight, thereafter forever frightened of women? Were his own parents talkative or was the only sound heard at dinner the clanking of eating utensils on the plate?

The study findings can also be viewed as a commendable attempt to understand the problems of schizophrenia by interviewing someone (the mother) who is a major influence on the child’s early development. Nowhere in the 1961 Journal did I read anything about medication. The efforts were to link the family situation to the deep personal problems of the patients. There was an interesting anecdote of a woman who had been confined for years to a mental institution. It was only when she had to change institutions and came under the influence of the lively, warm woman who ran the nursing home where she found herself, that three months later she just up and left, beginning a active new life of volunteer work and complete recovery.

The prevailing negative attitude towards the mother (and fathers, too) lasted until the first generation of antipsychotics allowed patients to leave the institutions in greater numbers in the 1960s and 1970s. As this occurred, it became no longer acceptable to link the parents to the problems of the child. There are several reasons for this. One reason is that psychiatrists no longer had easy access to a pool of research subjects. Two, as a parent, I might prefer to believe that my child’s problems were biochemical in origin, as the drug companies maintained, rather than worry that I had ruined my child through improper toilet training or being sexually frigid or being myself a diluted schizophrenic. Third, the woman’s movement challenged just about everything that had been written and said about women.

I am not so sure that psychiatrist’s attitudes changed about the parents, and the mother in particular. Scratch beneath the surface of psychiatrists’ beliefs, and I think this is where you will find that the attitude to the mother hasn’t changed. After all, once they come into regular contact with the relatives of their patients, they are going to judge them. Like most mothers of mentally ill children, I no doubt come across to a doctor as protective, worried and manipulative. I am not there to win a popularity contest with them, and they will judge me accordingly. Institutional psychiatrists may be less judgmental as they are preoccupied with titrating the medications and barely have time for the patients, let alone studying their families. The research money is in studying the medications, so the spotlight has shifted away from the family environment as an indicator of schizophrenia.

For comparison with the 1961 BJMP, I will look into the more recent editions to see where its scholarly research is now focused. I am sure it will not make for such entertaining reading.
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Andrew McGhie, A comparative study of the mother-child relationship in schizophrenia I. The interview, pp 201 Br. J. Med. Psychol. (1961), 34, 195

Dr. Leon Eisenberg and ADD

Dr. Leon Eisenberg’s obituary appeared yesterday in the New York Times. A pioneer in the study of autism and ADD, according to the obituary Dr. Eisenberg’s concern in later life was that the ADD diagnosis “has morphed from a relative uncommon condition 40 years ago to one whose current prevalence is 8 percent. . . Correspondingly, the prescription of stimulant drugs has gone up enormously. The reasons are not self-evident.”*

Many years ago when Taylor, my youngest son, was in fourth grade, he almost ended up on Ritalin, were it not for the fact that Ian and I couldn’t believe that Taylor was in any way ADD. Taylor was a fifth grade slacker, who was not interested in much at school except for art. He otherwise zoned out. One day the teacher called us in for a meeting with the school psychologist, who strongly suggested Ritalin. The school psychologist hadn’t even observed Taylor in the classroom. “Taylor – ADD?” I gasped with amazement. “Why, he’s our bright light!” The kid seemed very bright and he focused on stuff he found interesting, which didn’t happen to be most fourth grade subjects apparently.

None-the-less, I felt it incumbent on me to do a little research. I ordered a book from Amazon on ADD. Nothing I could find in the check-list applied to Taylor. So, Ian and I said to the principal and the psychologist at our next meeting that the diagnosis didn’t fit. This was embarrassing for the psychologist, as it was embarrassing for us to have to tell her this. The principal was a bit stiff with us and warned us that there were long term consequences for not intervening. “Taylor could continue for years underperforming and never reach his potential,” she said sadly.

For many years afterwards, I was afraid she was right as Taylor slacked his way through middle school and high school. University for him was looking like a pipe dream. After the problems surfaced with Chris, I got Taylor a hair test, figuring that his artistic temperament was also somehow related to Chris. The hair test said he was off the charts in copper, which would make him dreamy and creative or, “unfocused,” if you will. To make a long story short: Three months of supplements and he got focused, just in time for his final year of high school. As I have said repeatedly in my blog, there can be many reasons for a single outcome. Was it the supplements? Was it that boys don’t normally focus until their later teen years? Or, was it that Taylor got scared about what he saw happening to Chris?

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http://www.nytimes.com/2009/09/24/health/research/24eisenberg.html?_r=1&ref=obituaries

Once you label me you negate me*

Chris and Alex both went to our family doctor yesterday, Alex for a general check-up and Chris for that ECG that I questioned in my previous blog. Both sons haven’t seen the doctor for years, well before Chris got “diagnosed.” Their appointments were back to back, with Alex taking the first one.

Here is why I intend to find another family doctor. According to Alex, Dr. L. chatted to him about Chris, asking how Alex was handling the situation and gave him some general suggestions about keeping Chris engaged. Okay, fine, I’m with him so far. However, he impressed on Alex that Chris was going to need a psychiatrist and medication all his life. You can be sure that Dr. L was sad and regretful when he said this.

I don’t want a family doctor who doesn’t believe in total health and full recovery. I certainly don’t want this doctor around Chris. This is why I have kept Chris away from him all these years. I know his view. It depresses me. What does it do for Chris?

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*Kierkegaard

The English patient

When am I going to get to stop being patient? Chris isn’t the only patient here, unfortunately. I am thinking about this a lot recently. Interestingly, the French word for waiting is “patienter.” To wait and wait and wait.

The chances of Chris not being a psychiatric patient while still on medications are nil. The obvious explanation to many is that if you are a psychiatric patient, by implication you are mentally ill. The less obvious explanation is that taking an antipsychotic guarantees you are a psychiatric patient because psychiatrists are the only ones who can write the prescription. So, in my darker moments, I can see Chris being a psychiatric patient for years and having to rearrange his life to suit the office hours of his psychiatrist. Why would a psychiatrist kill the goose that lays the golden egg? Because psychiatrists are involved in the arcane area of your mind, it is difficult to point to anything and proclaim victory, unlike, say, with a course of antibiotics. This can work to their advantage. What’s the rush, after all?

Today Chris trotted off to the family doctor for an ECG. An ECG? Whatever for? This time it is harder for me to find out what’s going on because now, in addition to his psychiatrist, we have added a doctor I have never met who oversees the meds. She has recommended an ECG for Chris. Once you go down the slippery slope of meds, one thing leads to another, and the next thing you know, you’re having to gets tests to check on the meds and who knows what else. I am not at all happy that we now have two doctors mucking around with Chris. Come to think of it, it’s three, with the family doctor. The psychiatrist I can accept for a limited period of time. Her professed aim is to have Chris no longer be a patient and she claims that she does not believe in meds for long periods of time. We’ll see. . . .

Airport psychosis

My husband was recently between planes in the British Airways lounge at Heathrow Airport. He decided to use one of the computers in a special section of the lounge set aside for computers. There were about forty computer terminals in total, all of them free. He sat down at a terminal and put his jacket and his laptop on the chair of an adjacent terminal.

A man came over to him and asked him to move his jacket and laptop so he could use the terminal. “But there are thirty-nine other terminals available,” my husband pointed out to him. No, the man wanted that one.

“I didn’t bother to argue with him, I just did what he told me to do,” said Ian. I have travelled enough to know when someone is sleep deprived and not in his right mind.