Making madness fun

Humanity has advanced, when it has advanced, not because it has been sober, responsible, and cautious, but because it has been playful, rebellious, and immature. ― Tom Robbins

Ron Unger writes about madness and play over at the Mad in America webzine. Don’t miss this one!  Madness these days is viewed in the same way as the Ladies Temperance Society viewed alcoholic beverages. We are “awfulizing it.” Let’s get others to lighten up and recognize that a little humor goes a long way. Laughter is often the best medicine and as for play:

Ron writes:

“Curiously, those convinced that the best way to reduce “stigma” is to portray madness as an “illness like any other” see it as part of their job to suppress any notion that there can be something fun about madness. For example, a NAMI page on stigma reduction contains the following paragraph:

Another triumph came in the field of advertising. Nestle’s line of Tasty, Tangy Taffy Bars featured wrappers bearing distorted cartoon faces of characters with names like “Psycho Sam,””Loony Jerry” and “Weird Wally.” Two alerts and even a letter from former First Lady Rosalynn Carter convinced Nestle to repackage the candies, minus the stigmatizing names and cartoons.

Of course, if madness is not an “illness like any other,” if it is more of a human thing, very multifaceted and containing potential for growth and change as well as hazards, then it might be a good thing to notice the fun side of madness; to notice not just the dangers, but also how it might be sometimes be liberating or even just amusing.”

Ron Unger: on how parents can help

Ron Unger has written an insightful post at the Mad in America site. Please read it in its entirety here. I have extracted what he has to say about how parents can interact with their child to effect a positive outcome.

Mystery and nonlinearity applies to our responsibility for interactions with others as well as interactions with aspects of ourselves. Parents for example should be prepared for unpredictable kinds of interactions. There is this expectation in our culture that if one follows some defined set of instructions, a “good” child should be guaranteed, unless of course the child has a biological illness like ADHD or bipolar! This belief system creates incompetent parents, parents who feel they have to make a choice between believing that they themselves are “bad” as in they failed to follow the linear instructions that every “good” parent should know, or believing that their child is “ill” and that care should be turned over to the psychiatrist for diagnosis and chemical repair.

In contrast, a parent who is aware that his or her child is a mystery, and is a complex and inherently unpredictable non-linear system, will instead approach signs of trouble with curiosity and an open mind. Such a parent will be open to feedback about what works with this particular child, and will always consider the possibility that if the parent and others communicated differently to the child, any problems might be resolved. This does not guarantee a positive outcome, because in non-linear interactions nothing can be guaranteed, but the chances of success are much greater. The child now lives in a world of human beings who respond to him or her in a way that models both self respect and humility, and out of such interactions, the child can learn to also have both self respect and humility, firmness and flexibility, etc. Problems do not entirely disappear, but become manageable.

Competent therapists are able to help people restore this sense of mystery, this willingness to engage. But therapists are often instead like parents who believe there should be some set of defined instructions that should always work, and if the problem doesn’t resolve by using such tactics, then the problem must be a biological illness, and the therapist isn’t responsible at all. Instead, what the person really needs is a medication check.

The best teaching blog on schizophrenia

I wish Ron Unger was on my radar screen when Chris first fell into the mental health system. Ron is a social worker who writes the very thoughtful blog Recovery from “schizophrenia” and other “psychotic disorders.”

What I really appreciate about Ron’s blog is how positive, reassuring and “can do” it is. This is exactly what people need from the outset to instill the belief that yes, their relative has problems, but these problems are understandable and can be overcome.

Here’s a quote from a recent post that shows humility– the recognition that the clients are often the best teachers and that one must adapt to each situation. Contrast this with the many psychiatrists who offer only medications and blanket solutions for individual patients.

I have spent years trying to help people who have problems with voices and other sorts of mental events, and I have noticed that whenever I thing I have “the answer” someone comes along with a situation for which that answer does not work. So a better approach, I think, is to have a number of possible answers or approaches, and then move among them flexibly, choosing what best fits the situation. It is not good to rely too much on any particular method, because each method has disadvantages as well as advantages.

Ron Unger has an incredibly perceptive view of “schizophrenia.”
If you haven’t read Ron’s blog, I urge you to do so. If you have a friend or acquaintance who has recently entered the mental health maze, please point them to this blog.

Consumer empowerment

Ron Unger has written a superb piece on consumer empowerment which I think is a must read.

“Recovery from many kinds of problems is affected by beliefs about the possibility of recovery. Consider a hypothetical example of a person who has received an injury which affects the person’s ability to walk, but which is not necessarily permanently disabling if strong efforts are made to recover. If the person is led by medical authorities to believe that the disability is permanent, efforts at rehabilitation will probably not be made, and the prediction may become a self fulfilling prophecy. Since the disability at that point is a result of the inaccurate prediction rather than the injury itself, the disability becomes a medical system induced condition.

You can find the rest of his article at http://recoveryfromschizophrenia.org/2009/10/the-role-of-consumer-empowerment-in-mental-health-recovery/

I know a woman whose husband died within this last year, and his doctor was completely shocked that he had died, because his condition wasn’t life-threatening. Nevertheless the man in his late 70s went further and further downhill, until he ended up in a nursing home, all the time treated by the same doctor. The doctor said to the wife after the fact, “maybe I was too pessimistic when I spoke with him.”

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.