Cultural notes from all over

Observations from tonight:

People going to an office Christmas party are well-dressed (but not flashy), carry one present each, and look incredibly nervous. I saw about 30 of them tonight. They were being jovial at each other with dead empty dread in their eyes.

The satellite-provided music at the brewpub tonight was eerily perfect for someone of my age and background. It was the greatest hits of college radio from 1984 to 1987. What kind of radio station plays Prefab Sprout’s “Appetite” and Shriekback’s “Everything that Rises must Converge” in the same set in 2005?

At the chain bookstore, where I did not buy a thing, they of course had the whole front of the place devoted to Christmas books. One chunk of bookshelf was entirely given over to… wait for it… Christmas Mysteries. What the FUCK? I’m not sure how things are in your family, but around here if someone got murdered Christmas week we’d call the whole thing off, even if a sharp-eyed local Christian ladies’ sewing club solved the whole thing by the morning of the 24th. Take the tinsel down so we can just stare blankly into space, shaking. We’ll make it up to the kids somehow.

One of the clerks was hugely overweight, so much so that he puffed a bit and walked with the gait of a man whose knees are badly damaged. He had to help a young couple who looked like Vanguard-bots and who were very upset that they couldn’t find some Christian book about the essence of love.

I was gazing at the sad array of self-help books, most of which have titles in the form Stop ________! or _______ no more!, where the blank can be filled in with your unwanted behavior or emotion of choice: Smoking, Loving Too Much, Checking Things Over And Over, Leaving The House Without Pants, Putting Beans In Your Nose, etc. They were arranged in sections: General Self-Help, Addiction & Recovery, Dating. Then I saw a section labeled “Oversize”. Hmm. Odd euphemism for fat people. Oh, maybe it was for people who were “Big ‘n’ Tall” and included the towering as well as the obese? Oh, DOH! It was just the oversize books. Time to go home, substitute. Brain no work good.

Review and thoughts: A Symphony in the Brain

What do I do when something new falls into my life? I read a book about it. It’s just how things are done in my family. Since I’ve started neurofeedback therapy I went on the search for books on the subject. There aren’t many, and most of them are $150 tomes for practitioners. I found the one pop science book on the subject and ordered it: Jim Robbins’ A Symphony in the Brain.

The first hurdle to surmount is the writing. Robbins is a magazine journalist, and the book reads like every other pop psych book written by a magazine journalist. It’s heavy on the personal stories and light on science. Way too much of the material is from interviews. There’s about 50 pages of filler, mostly history. And, in the tradition of books about medical breakthroughs, it’s packed with case histories of success.

More seriously, Robbins doesn’t reveal a fact I know from other sources: he was commissioned by one of the players in the story. More about this below.

The history of neurofeedback begins with a UCLA researcher named Barry Sterman and his graduate student, Margaret Ayers. They developed a method for using biofeedback with EEG to help patients control their own brain waves. The technique showed promise and Ayers left to take it into clinical practice, causing the first of many wars in this field. She took with her the technician who had built the original machine, and started a company called Neuropathways. She did therapy and also sold hardware and software.

As usual there was a lot of resistance from medical and psychological experts to this new treatment. There weren’t any good large-scale studies of its efficacy, so clinicians wouldn’t touch it, and no grant money could be scared up to do such studies. Marginalized as she was, Ayers took on the defensive, messianic role of the radical truth-bringer oppressed by closed-minded conservatives. Robbins tells this story pretty well. You can see that there was merit in the therapy and that new ideas were treated unfairly, and you can also see that everyone involved was prickly enough to make things worse. However, Ayers had a lot of success helping patients who were in coma states, where no other treatment even seemed possible, and began to take clients with severely unhappy children who were violent or otherwise uncontrollable and had failed attempts at other help.

The narrative then moves on to a couple named Siegfried and Sue Othmer, and stays with them for the rest of the book. They brought their son to Ayers after the usual series of failures in other treatments for his severe neurological and psychiatric problems. The neurofeedback worked so well that they became enthusiastic converts to this new idea. In fact, they became so enamored of it that they bought equipment and trained themselves in its use. They and Ayers and Ayers’ computer programmer planned a joint venture to spread the good news and get more trained practitioners and equipment distributed.

This relationship also broke down in a mess of broken verbal agreements, patents, lawsuits, and accusations of bad faith. The Othmers started their own venture, EEG Spectrum, and began training and selling equipment themselves.

The rest of the book is taken up with examples of neurofeedback’s uses in epilepsy, ADD, injury, drug dependence, and personality disorders. Some of the case histories are fascinating. Unfortunately the practitioners and clients have a breathless enthusiasm for neurofeedback that breeds skepticism. In a chapter on ADD treatment, for example, Robbins and his interview subjects come perilously close to saying that drug therapy for psychiatric problems is the same thing as drug abuse, and that the “medical establishment” are drug dealers who don’t want to lose their hapless victim-patients. There is about a 20 page attack on the idea of treating ADD patients with drugs, and many of the arguments are essentially religious. This is unnecessary and brings down the tone of the whole narrative, and should have been eliminated.

This points to the real problem with the book, which is that Robbins has given us a pop psych cheerleading exercise about the wonders of neurofeedback that lacks critical bite. He does take trouble to interview some opponents of the technique but they’re straw men he sets up to knock down. And as above with the drug rant, there are a number of places where the tired old idea that “they” don’t want you to know about the real thing that will cure you pops up. There’s a bestselling book with a title like “The natural cures they won’t tell you about” that plays on this unreasonable idea that physicians and psychologists want their patients to be sick and take expensive drugs and treatments. It’s very unhelpful and also untrue, as you’ll find out if you spend a little time around “them”.

The problem with new treatments like this, and with their proponents like Ayers and the Othmers, is that they’re crusaders and not scientists. At a certain point in her career Ayers walked away from research because she saw so much potential for immediate clinical use. Her patients benefited but medical science did not. And the Othmers are neither clinical professionals nor scientists; they’re boosters. The fact that both of these parties make their living selling training and equipment for neurofeedback does not help things at all. Psychological therapies in the world of “alternative medicine” turn into cults too easily, and more so when charismatic leaders with a lot at stake take charge of them.

The really damning thing about A Symphony in the Brain is that it was commissioned by the Othmers and Robbins doesn’t reveal this. I only know it because people closer to the story than I revealed it. He makes a pretense of having stumbled upon this and decided on his own to write the book, so I’m not sure how exactly it happened. In any case he’s far too closely tied to them and their story. He does give Ayers a fair shake rather than taking their side, which is a good sign.

After finishing this book I thought about my own practitioner and the nature of this treatment. Like the Othmers and Ayers and Robbins, she’s a true believer. Neurofeedback approaches the Solution to Everything, kook-style, for true believers. Considering the history of “cures” for ADD and personality disorders over the years (sugar-free diets, weird psychotherapies, cult-like schooling) I can’t help feeling very skeptical. In my own case I have nothing to lose but $95 a session unless it turns me into a werewolf or a catatonic, so I’m going ahead with it. I really wish someone would do a proper study with a large patient population on neurofeedback, though. The war between conservatives and radicals is harmful to patients.

Looting: My story.

The word “looting” is a hot button. Push it and people reliably react with their prejudices about poverty, property, race, violence, and law. Use it on me, and I get a tape replay from the Los Angeles riots of ’92. Here’s what I saw then, and what I learned.

In 1992 I was living in West Los Angeles and working at home and downtown. I had a small failing DIY medical records business and my best friend Greg had a small failing DIY courier business. I used his courier business to deliver my work to California Hospital, which is in the industrial part of Downtown Los Angeles. I was also working part-time at Good Samaritan Hospital, which is just west of Downtown in the Westlake/Pico-Union district.

On the day of the Rodney King police beating verdict I was at a computer store run by some Iranian friends. When the news came out they shook their heads and said “There will be a riot”. I didn’t believe them and thought they were exaggerating or misinterpreting an adopted country. I went home that night feeling awful about the miscarriage of justice.

Good morning. Your city is on fire.

Female Trouble

There is a disease that middle-class American women get. Its symptoms are exhaustion, headache, lassitude, unexplained fevers and aches, and a depressive inability to progress. This disease has been renamed several times. At one point it was assumed to be the result of hormone problems. Other culprits have been anemia, depression, thyroid imbalance, and allergies. Some insist that American middle-class women have dietary problems. Ten or 15 years ago, a new diagnosis for these women arrived: chronic fatigue syndrome. This mysterious ailment, possibly caused by an infectious agent, fit all the symptoms, and everyone fell on it with glad cries.

Anemia, thyroid dysfunction and the rest are all real diseases, and so was CFS. But the medical and scientific world found CFS a hard sell. The earliest cases were from wealthy suburban women who get written off by doctors, because they had that disease that all of them seemed to get.

Middle-class American women had always felt tired and crappy and got mysterious diseases. When you’re making 64 cents on the dollar, expected to care for children and be an economic provider simultaneously, constantly at risk from sexual assault and domestic violence, and generally treated as a second class citizen, it’s hard to be consistently energetic. And since trying to change any of these things makes you even more of a social outcast, there aren’t a lot of solutions to your problem. Intelligent, well-educated women have good reasons to feel defeated. Any disease that gets renamed several times may well be a hidden social problem.

So, aside from the galaxy of diseases these people may have, they have excellent reasons for feeling like shit all the time and preferring to collapse and stare unhappily at the ceiling. But because of the nature of the social problem they’re facing, they get blamed for that too. Doctors prescribe tranquilizers, or iron pills, or vitamins, or just tell them they’re having female trouble.

So far, this is all a cliché. An unsolved social problem manifests as a disease and is patched over with nebulous illnesses and hypocrisy. The difference is that Chronic Fatigue Syndrome described a real disease, or perhaps several diseases. Hillary Johnson’s excellent book Osler’s Web tells the story of how difficult it was for the physicians who reported the problem to convince anyone that this wasn’t “just” the social problem or the hallucination of well-heeled ladies with issues. People with CFS couldn’t get out of bed for months at a time, found moderate exercise debilitating, felt terrible pain, and had their lives ruined for years.

So CFS was a hard sell because physicians were used to ignoring a social problem that showed up as a disease, and because the social problem itself made them more likely to write off their patients. But it gets worse.

When chronic fatigue syndrome became publicly known, everyone got it. The often renamed disease of American women had a new name, and newspaper editors ran the story like that; if you’re always tired and can’t get your shit together, here’s your diagnosis. Talk shows and popular magazines used the “epidemic” word a lot. Huge numbers of people self-diagnosed, and in fact were pretty annoying about it.

So to this day if someone says “I have CFS” people are suspicious. It’s too easy as a universal excuse for unhappy American ladies. Are you for real? Are you a malingerer, disease collector? The social problem wins over the medical one. And meanwhile, people who are actually fighting this mysterious ailment get a social stigma on top of a debilitating life-stealing ailment. Until we make some progress on the actual problems of women in our society, this pattern will repeat.

Why do I re-tell this story? Because of Asperger’s syndrome. A hilarious entry in the Encyclopedia Dramatica reminded me that it’s not just middle-class American women who need to turn their social problems into diseases; middle-class American geek guys do it too. If you don’t get along too well with people, have obsessive hobbies, do well in academics but not in life, you can now assign yourself a diagnosis rather than an epithet. There are no doubt many people with serious problems that this diagnosis fits, but there are uncountably many more people with neurotic personality issues who cling to a diagnosis.

Why do I find the E.D. entry on Asperger’s funny? Because almost none of the people who claim this disease are that badly off. They’re just geeks. The social problem they’re masking with a diagnosis is thoroughly personal.

It’s a lot worse that we’re stuck using diagnoses to solve a problem that we could have solved 25 years ago when we tragically and unaccountably failed as a national to give women equal rights under the law.

On our next episode of “Let’s Make it a Diagnosis”: the changing face of Bad Kids, or how ADHD didn’t get properly investigated for 30 years.