Monday, September 21, 2009

Not much to go on

When I first got into the "schizophrenia business" six years ago when Chris was 19, I had a major handicap. I didn't know anything about schizophrenia. I didn't know the vocabulary of psychosis, so it was difficult for me to do any of my own research. I also trusted the doctors, who told me that psychosis was a life long medical condition. It took about two years to get over the shock of the diagnosis and begin to think that maybe I could actually help Chris to get better, rather than simply leave his care to conventional medical wisdom.

What I found on the Internet was pretty sparse indeed. One thing led to another and I picked up information here and there, but certainly nothing very concrete or even hopeful. Most of the information that I found on the Internet was put out by the pharmaceutical companies and mainstream consumer organizations like NAMI. Eventually, I hit on a couple of observations that stood out to me. These observations on people likely to recover from schizophrenia were made by doctors.

One, is that people in their experience who recovered often didn't go along with what the doctors told them (this would include the caregiver). Often, there was active dissent. Two, is that the parents often seemed like they weren't aware the person had a problem. In the first case, doctors might label this "non-compliance" and in the second case, they might call it "denial."

As little as that was to go on, that was enough information to bring me to my senses. "Maybe I'd better start reconsidering what the doctors are telling me," was my thinking. "I can do non-compliant. I don't need the doctor to like me." So, I formally entered into denial that my son had a hopeless, incurable illness. I denied that he had a damaged brain. I refused to consent to an EEG for Chris and I began to lobby to get him off the meds, as I felt his problems were not biochemical. I am still working on the knack of not being aware that Chris has a problem, but I can certainly find excuses for why he has them. The excuses have nothing to do with a genetic predisposition or a damaged brain. I see Chris as an intelligent, senstive young man who is working through a necessary stage of development.

The more I employed these strategy, the more Chris benefited. I noticed that anything Ian and I did for him like finding an alternative therapy, putting him on vitamins, arguing that his meds should be lowered, reading poetry with him, helped him.

What bothers me is that precious years are wasted at the outset of a schizophrenic break because the doctors continue to have tunnel vision about what the problems with mental illness are about. There are many people who think like I do and they have been saying it and writing about it for much longer than I have so there is an informed body of knowledge to draw on. When are medical schools going to teach their students that psychosis is a coping strategy not a life sentence?

Ron Unger has a recent blog post entitled "Mental 'disorder' or evolved mental strategy?" http://recoveryfromschizophrenia.org/2009/09/mental-disorder-or-evolved-mental-strategy/

He observes:

..... the mental states that get diagnosed as “disorders” tend to be specialized states of mind which do tend to cause trouble for people, but which can also be seen as part of an evolved, problem solving strategy used by the mind. That is, while these mental states may not be consciously chosen by the person and may cause problems, they also may solve important problems, and so in any given case it may be unclear whether they are doing more harm than good.

3 comments:

  1. The link you gave us was VERY interesting and I learnt so much.

    For the language of psychosis, or schizographie, why not read Jacques Lacan, especially his case studies? Also there is an interesting book called: 'Psychosis: a breakdown or a breakthrough'.

    Here are 2 links related to that:
    http://www.elcollie.com/html/Issue5a.html
    http://hccvi.org.au/documents/JohnWatkins.pdf

    The first one talks about symptoms that are not always nice - if you look at them as symptoms (for example: tremouring).

    What poems do you read together?

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  2. Jacques Lacan - this is someone new to me. Thanks for the tip and the links.
    We had family playreading nights and then switched to our favorite poems. We did Waiting for Godot, at the suggestion of Chris's pychiatrist (reminded him of Chris. . .) and Chris recited Fire and Ice, by Robert Frost. I was amazed to hear him come out with it at the time, because he was otherwise so into his shell. It convinced me that to reach out, you need to speak symbolically and poetically in order to break through.

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  3. If you really want to read symbolically, James Joyce is good, whether in novel (Ulysses) or in poem (Finnegan's Wake) form. Also there is Walt Whitman.

    I wonder if you have read more Beckett (poems and plays)? T. S. Eliot is good from that period, and so is Ezra Pound.

    Fire and ice is indeed very symbolic.

    In fact, in Lacan, the basic concepts are looked through the Symbolic, the Real and the Imaginary.

    Here is a terrific Lacan link which I looked through myself:

    http://www.lacan.com/lacan1.htm

    Jacques-Alain Miller is the English translator for the seminars at the moment (Lacan died in 1981).

    And other people to follow might be Gilles Deleuze and his friend the doctor Gutamarri. They wrote Anti-Oedipus.

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