One of the most frequent questions I’m asked by reporters is “Why did you start ect.org?” The answer is that I started it over a decade ago to simply share information about electroconvulsive therapy.

I am not opposed to anyone having ECT as long as it’s an informed (emphasis) choice. Unfortunately, the majority of patients are given a one-minute sales pitch that overplays the effectiveness and mostly ignores any side effects.

My strongest belief is that if doctors were candid about it all, and took the time needed to answer questions truthfully, outcomes would be better. Even when the results were bad.

In an interview with the New York Times, Dr. Dan Shapiro, who has survived battles with deadly cancer, says the very same thing:

NYT: You quizzed your radiation oncologist about treatment side effects. If all patients did this, wouldn’t some refuse treatment?

Dr. Shapiro: About 85 percent of patients are information-seeking and want to know the limitations as well as the strengths of their treatment. Unfortunately, a lot of physicians overestimate the treatment benefits and underplay the side effects. In the short term more people accept treatment, then become surprised, dismayed and often panicked when predictable side effects occur. If patients know about side effects in advance and are taught how to anticipate and cope with them, they would do a lot better.

This so clearly defines how I feel that I believe I’m going to add it to ect.org in a prominent way.

Dan Shapiro has a website at http://www.danshapiro.org

Here is a great interview with the New York Times from 2001:

May 15, 2001
A CONVERSATION WITH: Dan Shapiro; A Doctor’s Story of Hope, Humor and Deadly Cancer
By JANE E. BRODY

In May 1987, Dan Shapiro, then a 20-year-old junior at Vassar College, discovered he had Hodgkin’s disease. After seven months of treatment with four chemotherapy drugs and radiation, he seemed healthy again.

In 1988, in his first year of graduate school in clinical psychology, he counseled a young girl named Jodi who was not doing well after a bone marrow transplant for the same cancer and who soon died. Six months later, he learned that his own cancer had returned and that his only hope was a bone marrow transplant. His survival chances were 40 percent. Sixteen months after the transplant, in July 1991, he had a second relapse, and few options remained. Read more…

By chance (or was it fate?) I came across an article that appeared in Salon a few years ago. It’s called “Why Me” by Dan Shapiro, associate professor in the college of medicine at the University of Arizona.

He has an interesting perspective on medicine and mental health, as he has survived bouts with Hodgkin’s Disease. It’s quite a story, and I guess I’m going to have to make an Amazon order and read his books.

Here is his article from Salon called “Why Me?” It reminds me of a quote from The Sopranos, where Tony Soprano asks his mother’s Russian nurse why she stays so optimistic when she only has one leg.

She replies: “That’s the trouble with you Americans. You expect nothing bad ever to happen, when the rest of the world expects only bad to happen. And they are not disappointed. You have everything, and still you complain. … You’ve got too much time to think about yourselves.”

Why me?
Why not you? Misery makes the world go round, and nobody gets a free pass.

By Dan Shapiro

Aug. 06, 2002 | I can’t talk about this at work, but I’m tired. Tired of patients with illnesses moaning that this shouldn’t have happened to them. Tired of their asking the fates to explain why they’ve been singled out for solitary anguish. Tired of the relentless vocal vacuums that can suck the life out of a medical team faster than HMO reimbursement forms and billing sheets. Read more…

While mourning the loss of the great Alexander Solzhenitsyn, I think back to a good friend in St. Petersburg, Russia.

My friend’s name was Ol’ga and she had lovely, waist-length blond hair. She was so typically Russian, loved to drink and could drink me under the table, enjoyed art and good poetry and literature. Yet underneath was that sadness that so many Russians carry with them. In some ways, I think it’s part of the Russian soul.

No matter how drunk you are, how crazy you get singing drunken songs, no matter how happy you are in the moment, it’s always under the surface. Melancholy.

I actually didn’t know the person who died in the psychiatric gulag in the 1980s. It was Ol’ga’s husband, a man who died before I knew her. He had been quite an accomplished artist, a great talent. But he didn’t always paint “approved” art. He was a dissident and used his art to criticize the communist leadership.

He was warned, but some Russians refused to conform. Eventually, they are taught a lesson, sent to a gulag, or sent to a psych ward. My friend’s husband was pronounced severely mentally ill and sent to a psychiatric gulag.

She visited him as often as they would allow, and his spirits were high. They could control his person, but could never control his mind, despite the heavy drugs and other tortures.

One day, on her scheduled visit, she arrived at the “hospital” and was told her husband had died. Just like that, told in the same way you’d tell someone “Nice hat.” He had hung himself, they said.

She simply walked away, went through the motions of burying her husband’s body, and day by day the sorrow lessened. She didn’t become a martyr for dissidents and scream “They killed my husband.”

In the Russian tradition, she simply accepted her lot in life and pushed on. But she knew there was no way her husband killed himself. He had reasons to live, and he wasn’t despondent. They killed him and called it a suicide. It wasn’t unheard of. Sometimes it’s apparent that you can’t break someone, and it’s easier to just get rid of them.

That’s how her husband met his end. Convenience of the state.

He was, after all, mentally ill.

It took Farrah Fawcett’s battle with cancer being splattered all over the media to find out that hospital employees in Los Angeles have been selling celeb medical records. It gets worse. It seems that a number of hospitals have “medical professionals” working both sides: working their day jobs as “medical professionals,” and by night, being on tabloid payrolls.

In my world, that’s called being a snitch and it’ll get you a lot more than a day in jail plus a fine. Let’s just say these people ought to be glad I’m not Farrah’s best friend. I’m talking a blanket party, and if you don’t know what that is, it’s because you’re not from the Midwest. Read more…

Surely it’s been noticed that mass knife stabbings are happening more frequently in Japan.

I’m not making light of it; it’s a horrible thing. Gun laws in Japan are some of the strictest, so I guess this kind of shows that if you want to go on a killing frenzy, you don’t necessarily need a gun.

Japan boasts a low crime rate compared to other industrialized nations and Tokyo, with a population of 12.7 million, is considered relatively safe. But stabbings, once rare in the country, have become more frequent in recent years.

In March, one person was stabbed to death and at least seven others were hurt by a man who went on a slashing spree with two knives outside a shopping mall in eastern Japan. In January, a 16-year-old boy attacked five people in a shopping area, injuring two of them.

A spate of knife attacks also have occurred in schools, the worst on June 8, 2001 when a man with a history of mental illness burst into elementary school near Osaka killing eight children. He was executed in 2004.

From Yahoo News today.

I remember not that many years ago, as I debated gun control issues with a libertarian I knew. We probably had more similar views than we realized, but chose to take opposite sides for unknown reasons.

My biggest argument - against guns, although I’ve never been anti-gun actually - was that if there were no guns, you wouldn’t have a Columbine-type thing again. He argued that sure you could…the guys could have used knives. Perhaps fewer would have died, but maybe not. Then he argued that more people died at the hands of autos than guns.

And I replied when was the last time a student drove a car down the hall of a school, mass murdering students? It was so ridiculous. And at the time, the idea of mass murder with a knife was ridiculous, too.

Now I’m having to rethink that.

Radio is carrying new PSAs emphasizing the importance of friends when dealing with mental illness.

Here’s a case where I think tax dollars have been very well spent. Some of the ads are a tad annoying, but that’s after I’ve heard them too many times. They make the point: if you have a friend who has been diagnosed with mental illness, stick around. A friend can really make a difference. Read more…

Two families have filed suit against Horizon Insurance because their children were denied mental health coverage. The insurance based their decision on the kids’ personal writings on Facebook and MySpace.

This officially proves that NOTHING is sacred. Move over, Google and start selling those private medical records to the highest bidder. It’s only going to take one or two disgruntled employees to open that can of worms…or a nice, fat check on the side. If UCLA Medical Center employees will sell celebrity medical records to the tabloids, you can be sure a Google employee can’t be far behind. Read more…

KMOV (CBS affiliate) in St. Louis has completed an investigation into pharmaceuticals that are manufactured in China. Apparently the FDA had no clue. No surprise there. The FDA wouldn’t know a dog bit its ass unless the dog bribed someone.

Since this is the kind of thing that often goes missing on websites, I want to repost the list of drugs here. Some of them are psych drugs, such as the generic version of Wellbutrin and Lamictal.

The list:

Here’s a list of medicines made in China. Read more…

Imagine the government organizes a new committee to study “Issues Facing Black Women in Contemporary America.” The goal of the group will be to study the issues, define problems facing black women today and come up with possible solutions.

Now imagine a meeting room, a large round table of talking heads and vigorous discussion. This new committee is entirely comprised of white men.

Outrageous, right? Inconceivable that anyone in his/her right mind would create a committee to study such issues and not include black women, is it not? Imagine the outcry from black women if such a group were formed. Rightfully so.

Why then, is it acceptable to have committees left and right, studying mental health issues, supposedly with one of the goals being helping persons with mental illness and not including any patients? It’s not acceptable, but it’s common.

Mental health committees are often made up of “experts” only. Anyone with a title, psychiatrist, psychologist, MSW, RN, professor, and so on. Missing are the patients (and family members, who also often have a large stake in the issues).

There is such a large gap between what the experts think they know, and the realities of living life as a person with mental illness. That’s why inclusion in every committee, every group, and every meeting is required. Nothing about us without us.

That non-inclusion continues on such a large basis reinforces the view that mental patients are less than.