Monday, December 21, 2009

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.


  1. In daily life among persons without psychoses, relapses can be a part of life, especially when changing entrenched habits. This can be involved with food or drink, for example. It is probably a survival complex/reflex.

    It's the fear that grinds people down, every bit as you said, Rossa.

    A lot of episodic illnesses can be about "I lived through this, I can do it again." This was so for me during my depressions.

    It's good that this Christmas will be better, happier, richer.

    Going to hospital once and suddenly can sometimes produce 'damage'.'

    Nietzsche had some words about this. Probably go beyond the "What doesn't kill me makes me stronger" distillation and go through what he really said.

  2. I know quite a number of people who had more than one "episode", and whom it took many years, sometimes decades, to recover (fully, I mean, of course). Me myself included. None of these people did suffer any brain damage other than the one caused by the drugs.

    "Psychosis" can be habit-forming. If you never get any guidance, and simply can't figure out on your own how to deal with stressful life events other than by reacting "psychotic", it may make recovery less likely over time. Because the habit becomes so ingrained, like any other habit would. Possibly even on a neurological level (neural pathways). But that's quite different from the often irreversible damage caused by the long-term use of drugs.

    The idea that "psychosis" causes brain damage, irreversible cognitive deficits, and the like, if it isn't cut short immediately with drugs, is definitely a drug-company-gimmick, and a scare tactics of a society that doesn't want people to "wake up". And there's indeed lots of evidence (although it certainly would be called "anecdotal" by the "experts") that people emerge stronger, more resilient, and much more self-/aware from crisis than anyone else, who never experiences crisis, ever has the opportunity to become.

  3. Thanks, Marian. I have a question that has been puzzling me. What exactly is the damage caused by long term use of meds? I can understand that tardive dyskinesia can set in, especially if the meds are too high (tremors, tics). Is there really such a thing as cognitive decline or does it only look like cognitive decline because the person prefers the psychotic state? At first I bought into the cognitive decline idea because it sure looks like cognitive decline when your relative can't speak, hold a pencil, read even a short note or write a simple sentence (on or off the drugs). That's where the pharmaceutical companies and the doctors have you in their grip. Yours and others thoughts on this most welcomed.

  4. Rossa: The NYTimes had an interview with Nancy C. Andreasen, leading neuropsychiatrist, on the matter, where she talks about her research, that has clearly shown neuroleptics to cause brain shrinkage, especially in the frontal lobes where cognition is located. Other research, although in monkeys, has shown the same: and You can find more about brain damage caused by neuroleptics at MindFreedom's site:

    I experienced what from the outside must have looked like reduced cognitive abilities during acute crisis. I couldn't solve the simplest math problems, my spelling and sentence structure (written) was a mess, I couldn't concentrate on anything. Not on anything but my own stuff. And that's the crux: during crisis there's so much going on inside you that needs to get sorted out, that there is no energy, no cognitive capacity, left for stuff that doesn't have significance in context with the crisis itself. At the same time, almost everything does in one or the other way relate to crisis, so while you try to add up two and two for instance, the figure two may release a true avalanche of associations related to crisis, to your history, that then keeps you very effectively from staying concentrated on the math "problem". - Of course, these massive associations also are seen as a "symptom": "they believe, everything relates to each other/to them". Well, it does. And without the associations it wouldn't be possible to figure out the meaning with one's crisis.

    My ability to concentrate on other things than my own stuff returned gradually, and simultaneously to me figuring out my own stuff, and crisis blowing over. My cognitive abilities never really were reduced. They were just drawn away from whatever "normality" sees as important, and completely absorbed by my own stuff.

    The cognitive deficit I see in people on neuroleptics is different though. It's a real deficit. These people can't solve math problems, spell correctly, build complex sentences, remember what they were going to say or write, and at the same time they are out of touch with what is going on inside them. Their whole thinking is more or less (depending on the dosage they're on) obviously slowed down. And this lasts. At least for as long as they are on the drugs. If they've been on them for a long enough period (years, decades), it becomes permanent. It lasts, and it actually gets worse over time.

    If crisis itself caused brain damage, reduced cognitive abilities, I wouldn't be able to write an intelligible sentence today. The same applies to a whole lot of others who've tossed out the drugs, again and again, or never took any, and went on to recover, like Joanne Greenberg, Ron Bassman, or German Kerstin Kempker for instance, who all earned college degrees and authored books after they'd recovered.

  5. Thanks - an excellent, thoughtful answer. I have problems with Dr. Andreasen, though. She, like too many psychiatrists, prefers to spend her time imaging the brain rather than getting down to the practicalities of solving human suffering now. To think that she sat on her findings that "the more drugs you are given, the more brain tissue you lose" because she didn't want people to go off their drugs in the interim strikes me as incredibly paternalistic (maternalistic?) I feel that too many psychiatrists are like her in that they ooh and ah over the supposed scientific evidence (which we all know seems to be routinely overturned every five or so years)and then going on the lecture circuit while neglecting treating human suffering at the practical everyday level. If Nancy is so smart, why isn't she using her considerable smarts to help me and others like me help our relatives get better sooner? Okay, okay, I know, there is no money is this approach. I just had to say it because it is such a waste of brain power (hers and others).

  6. Rossa: I agree wholeheartedly with you on Nancy Andreasen. She may be a "leading" researcher in her field, nevertheless, she, neither, is capable of looking beyond the limit(ation)s the bio model (Big Pharma) has imposed on this field. So, unless she maybe one fine day wakes up, she'll probably keep on believing the solution to drugs that are fraught with intolerable side effects are new drugs - with side effects, no one will be able to predict before it's too late.

    What she won't or can't see - and I don't know which one it actually is in her case - is that side effects like brain shrinkage and cell death aren't side effects but the actual effect of these drugs. It's what happens when you constantly suppress activity in an organ or organism (if it's the brain or whatever else) for long enough a period: the organ or organism will die. Like a plant that is kept in a constantly dark place. If you want to suppress "psychosis" you have to suppress consciousness, cognitive processes, as well as emotions and motor skills (this is where tardive dyskinesia as a result of suppressed motor skills comes in). There is no other way. So, if the possible new drugs, Nancy Andreasen puts her confidence in, are supposed to "work", they, too, will have to have brain damaging "side" effects.

    And, yes, it is extremely patronizing to keep silent about research findings like these for so long a time. Indeed, it's against the Hippocratic Oath, medical ethics. But no one will accuse her, since society's convenience is more important than the lives of people, who this society defines as second-rate existences. For the sake of society's convenience they will have to endure the damage the drugs do to them.

    Anyhow, the fact that a reputable representative of the mainstream ideology admits to neuroleptics causing brain damage is worth something as it is a lot easier to dismiss research by someone who could be classified some anti-psych, anti-drug, or even Scientology nobody as biased and invalid. (And I guess, a lot of her colleagues aren't too happy that she eventually decided to make her findings public...)

  7. (And I guess, a lot of her colleagues aren't too happy that she eventually decided to make her findings public...)

    Well, I'll take my hat off to her there. On the other hand, why do we so readily accept the latest "scientific evidence" from a scientist, knowing someone else will overturn those findings eventually, but years of complaints from consumers fall on deaf ears? (I don't need an answer, just needed to pose the question.)

  8. Congratulations! It appears Chris is making real progress and he should be proud of what he is accomplishing.

    To elaborate further in response to your question regarding the effects of neuroleptics there is growing evidence that they severely impair dopamine and serotonin receptors in addition to reducing grey matter over extended usage.

    As Peter Breggin suggests, neuroleptic medications produce chemical lobotomies. It stands to reason that the effects are proportional to the length of time that the patient is subjected to them.

    I can understand however why psychiatrists would not move to remove their use from treatmnt. In addition to any inspiration that may originate from big pharma they simply do not understand how to treat psychosis without them. Worse, they do not understand that there is no benefit, if we might suggest neuroleptics had any, beyond abating an acute psychotic episode. It would be irresponsible to eradicate neuroleptic drugs and not have an alternative treatment in place if doing so.

    I have met psychiatrists who did not even understand that these drugs need to be withdrawn slowly. One, who has practiced in excess of 35 years explained to me that haloperidol could be abruptly stopped with no effects. I insisted the patient have it withdrawn over a year.

    Society would clearly not benefit from having 50 million people running the world psychotic and untreated in any manner.


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