I think I know why Larry David didn’t return the call

The New Yorker ran an article back in October 2007 entitled We are All Larry David. Larry David is the creator, along with Jerry Seinfeld, of the television mega hit Seinfeld. If you have ever seen his subsequent show, Curb Your Enthusiasm in which Larry David is front and center, Larry David makes Woody Allen look like a people person. He seems to have no redeeming qualities. He is neurotic, horribly inept in his personal relationships, and well, in my opinion, not at all funny. My son Alex loves Larry David, demonstrating once again that there is no accounting for taste, and I respect that.

The New Yorker article is about a second year psychology student who worked for a summer teaching social skills to a group of “schizophrenic patients” at a state hospital. He was having a difficult time trying to get his patients to role play everyday social situations until he hit on a brilliant idea. And do you know what this brilliant idea was? Watching television with his patients! Not just any TV show but Curb Your Enthusiasm, which really struck a chord with this group, no doubt due to the heavy doses of neuroleptics they were on (my opinion, not the article’s).

I won’t go into my opinion of this article, but just offer it up as further reading material. You can access the article here.

The pitfalls of accepting your diagnosis and telling everyone about it

Gianna Kali has reposted a 2007 opinion piece today by Furious Seasons’ Phillip Dawdy where she takes eloquent issue with his opinion that accepting your diagnosis is mandatory on the road to recovery. This idea of accepting your diagnosis is widespread and the thinking is that you are delusional if you do not. Today, many people proudly proclaim that they are their diagnosis. Coincidentally, more and more people have that diagnosis. Wearing your diagnosis goes beyond what the Dawdy piece is saying, but it’s a slippery slope. Accepting can become defining.

In mental health, pardon my ignorance, but what exactly is the basis of the diagnosis? There is no test for schizophrenia, no gene, and no drug fixes the problem, so what is it exactly that is being medically diagnosed?

A mental health diagnosis is not a broken leg. A mental health diagnosis is a sliding opinion underpinned by dubious science.

After you’ve accepted this diagnosis, then what? Will you be open to accepting any label that someone else sticks on you? I could have spent years urging my son to accept his diagnosis, but that would have done more harm than good, in my opinion. In fact, at the beginning my husband and I did urge my son to accept his diagnosis, because this is what the doctors told us Chris must do. In another post I wrote that accepting your diagnosis when you are labeled schizophrenic is akin to a teacher telling you that you are stupid, but if you want to learn you’d better first accept the fact that you’re stupid. Any learning you manage to accomplish after that will be the result of an heroic struggle at the expense of your own stupidity.

Robert Whitaker’s book has pointed out the pitfalls of becoming your diagnosis: Lifelong patienthood.

If I had it to do all over again, I would never have told a soul that Chris had been given a diagnosis of schizophrenia. I don’t know how I would have fudged this the past six years when anyone could see he had a problem, but I was operating under the delusion that there is no stigma in being mentally ill and the first thing to do is to accept your diagnosis. I also felt that if I told people, I could learn things from them that would help. In fact, most people haven’t a clue, and I had to do all my own discovery.

It hit home again at lunch today. My friend wanted to know how Chris was doing as she had seen him on one occasion last year when he was on a day pass from the psych hospital. Ian and I had foolishly decided to take him to a special interest group lecture and he spent the time being rather unusual. (Word to the wise. If your relative is out of the psych hospital on a day pass, best stay home.) My friend expressed surprised that (a) Chris actually can read books and (b) that he was able to travel around freely by train. Like most people, she has no clue what a diagnosis of schizophrenia entails, but like most people, she thinks it’s lifelong and handicapping. My father went to his grave feeling sorry for the burden that he felt I was going to have to carry the rest of my life. He also had no experience with mental illness beyond what the doctors say about the awful label of schizophrenia. My trying to convince my father otherwise was an exercise in his humoring me. He felt I was putting the best possible polish on a bad situation with my talk of Chris eventually leading a productive, interesting life.

It would be far better to reject the idea of accepting your diagnosis, but be willing to admit, as the Dawdy article puts in a more secondary light, that what you really have is a “problem.” That’s a diagnosis you can overcome.

Readers may ask, so why is it then that you put schizophrenia front and center in your blog if you reject the label? The answer is so that other people can find their way after they’ve been handed this label.

Would you prefer “small brain volume?”

Robert Whitaker has a blog post today on a research finding* published in the American Journal of Psychiatry.

In this NIMH-funded study, researchers reported that male neonates born to mothers diagnosed and treated for schizophrenia were found to have “several larger than normal brain volumes.” The researchers concluded that this was evidence that “prenatal and early neonatal brain development is abnormal in males at genetic risk for schizophrenia.“

In other words, researchers saw this abnormality as evidence of a “schizophrenic” process already underway in the male neonates. But the mothers diagnosed with schizophrenia in this study were taking antipsychotics, which are known to cause changes in brain volumes. Thus, it may be that the abnormalities seen in the brains of the male neonates were due to the drugs, rather than to any underlying genetic risk for schizophrenia.

The female neonates born to mothers diagnosed with schizophrenia did not have “larger than normal brain volumes,” which of course leads to further doubt about any conclusions that can be drawn from this study.

I am in full agreement with Whitaker’s conclusions questioning whether the drugs are responsible for the observed results and why this affects only males and I will go further. It’s not a good idea for the results of these kinds of studies to fall into the hands of someone like me. First of all, I’m a parent who has never gone to medical school, and why am I subjected to stupid words like “male neonate” when I guess what we are really talking about here are male babies, not male monkeys. Bullshit factor number 1. It sounds impressive and potentially scares the hell out of your non-medical school graduate. Your psychiatrist will trot this kind of medical vocabulary to keep you in line.

Bullshit factor number 2 to the medically uneducated is the “larger than normal brain volumes.” Well, that sounds scary in this context because the research is signaling alarm, but come on, shouldn’t larger than normal brain volume be preferable to “smaller than normal brain volume?” Where is the actual problem here? Bigger volume, more room to think and make connections? Right? Who says it’s wrong? Bullshit factor number 3 is that the NIMH funded this study. The NIMH is strenuously looking into the magic bullet solution for schizophrenia and other serious mental health problems. It pays lip service to complementary and alternative mental health solutions. Bullshit factor number 4 is that so far, there is no identified gene for schizophrenia, so to my medically uneducated brain, there is no established genetic risk for schizophrenia. If my mother suffered from a mental health problem, no doubt I would have psychological problems myself from interacting with her (see my blog portrait) but don’t try to pin genetics on this. Try blaming the environment instead.

Unfortunately, these kind of research findings find their way into the public consciousness and are of no help to anyone actually wanting to recover from their diagnosis.

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J. Gilmore. “Prenatal and neonatal brain structure and white matter maturation in children at high risk for schizophrenia.” American Journal of Psychiatry, published in advance online, June 1,2010.

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.

When I retire

When I retire from my day job in a few years , I think I want to be a hippie. Back in the sixties and seventies, when I actually could have been a hippie, nothing interested me less. I felt uneasy with the drug scene, the people who celebrated it, and if anybody ever referred to me as “Mother” or “my old lady” I would have . . . well, it wouldn’t have happened because I just didn’t do the scene.

Forget the drug culture – I won’t be growing marijuana plants in our back yard, nor will Ian and I be heading to the Burning Man Festival in a painted VW van. The part of the hippie scene that I finally found some respect for is the embracing the mystical, the turning one’s back on materialism and looking at homegrown solutions. I’ve become softened to this by critically looking at the way pharma creates imaginary diseases to sell its products, but I’ve also had my eyes open to the true magic in this world, thanks to the journey I’ve been on. Call it new age, or hippie, that’s where I’m headed.

I will no longer buy products that I don’t need or where a cheaper substitute can be found. It’s not just pharma that creates an imaginary need. Today I was admiring the geraniums on my balcony and see that they’re doing just fine without fertilizer. I no longer have expensive, partially used fertilizer bottles cluttering up the place. I’ve been conditioned to feel that balcony plants need this stuff, just as I was conditioned to believe that the one and only prescription pharmaceutical product I take needs to be taken twice a week. After pestering my doctor, I learned I could take it once a month or less. (She lowered her eyes as she whispered this trade secret to me.) Now there’s a tip not in the product literature. I also found out rather late in life that Vaseline is the best all-round moisturizer.

Maybe what I’m talking about is not actually being a hippie. Perhaps I’m just getting old and wising up. But, I am forever grateful to hippies for understanding certain things early that I picked up on rather late.

Amsterdamned: The blog

There’s not much of an industry in portraying mental illness as fun, which is a real pity ’cause there are a lot of funny things that happen. Finding the humor in mental illness is therapeutic. Instead, most of us are led to expect that it is dreary, soul-destroying and life-long. In short, serious business. Certainly that’s the impression I always came away with after speaking with most, not all, of Chris’s psychiatrists. Our life very quickly took on all the fun of a medical text book.

When we learn to see the lighter side of madness there’s no telling the leaps and bounds we can make towards recovery. I personally feel that laughing and learning to laugh at ourselves means all’s right with the world. I’m putting in a special plug for the blog Amsterdamned. It’s a short blog so you can get up to speed quickly on our hero’s cannabis and mania induced adventures in the Netherlands. He has recently had the good fortune to end up in a Dutch jail (as opposed to a Turkish or even an English jail) and that’s where the second leg of his adventures begin.

Do the needful

“Do the needful” is one of those quaint Indian English expressions, like “donnybrook” and “fisticuffs”. “Sir, I implore you, do the needful!” As I was walking to work today my fertile brain flitted from random thought to random thought, until, for some inexplicable reason, I hit upon “do the needful.” Do the needful for what? I am thinking. For Chris, of course, for others. I got to thinking about do the needful because my mind turned towards street people and my own prejudice tells me that their relatives are not doing the needful for them. We can only blame “the system” and our relative’s own problems for so long before we must look at ourselves and wonder why we are not there for our relative. We have all kinds of excuses, of course that any of our friends and family would sympathize with, but when push comes to shove, we should not abandon our relative to the street. Had the medical profession given us a more hopeful scenario, encouragement and insight, I am convinced that we wouldn’t have so many people on the street.

Doing the needful also means getting your own house in order.

If you don’t read, starting reading.
If you don’t believe, start believing.
If you have no faith, begin developing one.
If you don’t meditate or do yoga, think about starting.
If you don’t believe that something is possible, begin by suspending disbelief.
If you think there is only one way, think again.

My own definition of Low Expressed Emotion

“Low Expressed Emotion is believing that your relative is not mentally ill.”

Belief that your relative is not mentally ill will guide your reaction to any situation involving your relative. Siding with your relative shortens the psychic distance between you, bolsters his or her confidence, and encourages healing.

As ridiculous a concept as anosognosia

In 1851, Dr. Samuel A. Cartwright, a Louisiana surgeon and psychologist, filed a report in the New Orleans Medical and Surgical Journal on diseases prevalent among the South’s black population. Among the various maladies Dr. Cartwright described was ”drapetomania” or ”the disease causing slaves to run away.”

Though a serious mental illness, drapetomania, wrote Dr. Cartwright, was happily quite treatable: ”The cause, in the most of cases, that induces the negro to run away from service, is as much a disease of the mind as any other species of mental alienation, and much more curable. With the advantages of proper medical advice, strictly followed, this troublesome practice that many negroes have of running away can be almost entirely prevented.”

A particularly absurd chapter in the annals of racist 19th-century science? Without question, but for Alvin Poussaint, a clinical professor of psychiatry at Harvard Medical School, Cartwright’s hopelessly unscientific diagnosis is of more than just historical interest. It is a vivid illustration of how definitions of normal and abnormal behavior are shaped by the values of the society that makes them. ”The culture influences what you consider pathology,” says Dr. Poussaint. ”Cartwright saw slavery as normative. So when slaves deviated from the norm, he called them mentally ill. The business of deciding what’s normal and what’s psychopathology gets influenced by culture and politics. It’s not hard science.”

Dr. E. Fuller Torrey has popularized the use of the word “anosognosia” to describe someone who is unable to understand that he is mentally ill. Seriously, please try to pronounce this word while keeping a straight face. Dr. Torrey is also one of the most vocal advocates of outpatient commitment for those judged unlikely to survive safely in the community without supervision, i.e. the mentally ill, although come to think of it, slaves, too, fit this description. While we all dislike seeing visibly disturbed individuals roaming the streets, let’s also keep in mind that society felt the same way about slavery, incarcerating its victims under the guise of helping those who are judged unable to act in their own best interests. Anyone can see there is a problem (either with someone presenting as mentally disturbed or as a runaway slave), but what is at the base of that problem? Do we label everything we can’t or won’t accept as mental illness? Seems like we do. It makes Dr. Thomas Szasz’s belief that mental illness is a social construct very credible.

From the New York Times: Bigotry as Mental Illness or Just Another Norm