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.

I’ll be out of town for the next week. My ability to post and publish comments will be limited. Your patience is most appreciated.

I think readers might actually like a break from my obsessive daily blogging. Taking myself out of town, even if it’s for business, clears my head and gives me a chance to sketch out ideas for future posts.

One reason for my daily blogging is to sharpen my writing skills and to establish a firmer platform for my writing. More importantly, I hope that people don’t mind a daily reminder that schizophrenia doesn’t have to be a black hole, is curable, and also an interesting journey in itself.

I am contributing a chapter to a book that is due out at the end of this year. Goddess Shift will be published by Elite Books.

See you in a week!

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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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

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.

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

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

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. . . .

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.

So is Philip K. Dick and Madeleine L’Engle. Terry Pratchett is slowing down a bit, but not much, so far. I am encouraging Chris to seriously think about science fiction and fantasy writing as a career or a hobby. There are always openings for exciting new writers in the parallel universe realm “Think of this way, Chris. You are a natural – you’ve spent time in mental institutions in two countries on two continents, you have personally encountered aliens, you write well (you can never emphasize this enough), and you know something about physics, mathematics and music. This is world class stuff!”

I am reminded of a scene in the movie Orange County, where the father expresses skepticism about his son’s professed desire to be a writer. “A writer! What could you write about? You’re not opressed or gay.” The father is acknowledging a fundamental truth here. It helps to be a bit of an outsider when it comes to a career as a writer.