When young hiker Aron Ralston made headlines after he escaped from a rock slide by cutting off his own arm with a penknife, most saw an inspirational story of the indomitable will to live.
Dr. Robert Smith couldn’t agree more.
Dr. Smith is an expert in a rare disease called Body Identity Integrity Disorder (BIID), in which sufferers feel an obsessive need to lose a limb in order to feel “themselves.” (He used to perform amputations for BIID patients-until the British Medical Council made him stop.)
Dr. Smith had just arrived from Scotland for the third annual BIID conference, which was held at Columbia Presbyterian Hospital June 6. On the evening before the conference, BIID sufferers and doctors from around the world gathered for cocktails at the Riverside Drive home of Dr. Gregg Furth. Dr. Furth, a New York psychiatrist, is a longtime crusader for increased BIID research. He has also been trying for many years to persuade doctors to cut off his right leg.
“It’s off the radar of most medical professionals,” explained Dr. Michael First, the conference organizer and a psychiatrist at Columbia University. “That’s because most sufferers are ashamed to tell anyone. But the desire is so intense, it prevents them from having intimate relationships or fully functioning.”
Dr. First and two Canadian doctors are determined to enter BIID into the next edition of the Diagnostic and Statistical Manual of Mental Disorders .
“Most people assume this is psychotic, which is the technical term for crazy,” Dr. First said. But in his recent survey of 52 BIID sufferers, “no one was psychotic or delusional. They knew their desire was abnormal.”
Also, most were well-educated, middle-aged white males who were first stricken when they saw an amputee during childhood. Chris, a soft-spoken retiree from a tiny West Coast town, has been consumed since childhood by the desire to remove his right leg above the knee. In the disease’s nomenclature, he’s an S.A.K.-single (limb) above the knee. Although he thinks about it all the time, he only recently told his wife, 32 years after they were married.
She is trying to be supportive.
“I love him, so I will deal with it …. I mean, if I argue for women’s rights to choose-but I want him to lose a little weight before the surgery.”
Last year, as a “trial run,” Chris had “an accident” during which his friend chopped off the top of his finger. “I am really happy with it,” he said, smiling shyly. But he is still waiting and hoping, he said, to find a doctor to amputate his right leg.
According to Dr. First’s study, no form of therapy, including anti-psychotic drugs, decreased the intensity of the desire in the study’s subjects. In addition, 99 percent of those who were amputated were ecstatic with the results and had no desire to lose another limb.
BIID is often compared to Gender Identity Disorder.
“[They] are two sides of the same coin,” said Dr. Anne Lawrence. “They’re both about feeling like you’re in the wrong body and wanting to change that body.” Dr. Lawrence, a transsexual herself, was invited to the conference for her expertise on the topic. Unlike sex changes, however, amputating a healthy limb disables the patient-so it’s considered unethical, although not illegal.
It was the finding in Scotland that the practice was unethical that put a stop to Dr. Smith’s amputations.
“I’d still do it if I could,” he said.
Many BIID sufferers who can’t find a willing surgeon are desperate enough to go to Thailand or Russia. And many do it themselves. In 2001, George Boyer shot off part of his leg. After his landlady rescued him from bleeding to death, he convinced doctors to professionally finish the job. His only regret was not doing it sooner.
Dr. Lawrence offered some helpful tips for “reduced-harm” D.I.Y. methods. Ketamine (a.k.a. Special K), for example, is a “good anesthesia for amateurs.” She also recommends a pneumatic tourniquet, although “it’s hard to say it was a chainsaw accident when there is a tourniquet in the house.”
Another suggestion: have a friend monitor the procedure-preferably someone who wants it to succeed. A good choice for this role might be a devotee, someone who is sexually attracted to amputees. Like Paul, who came from Belgium for the conference and feels strongly that “we need more public images of hot amputees.”
“What about Eddie McGee from Big Brother ?” was the first comment in five hours from the dapper 70-year-old in the back of the classroom-who yearns to feel the absence of his right leg, but has decided against it since he plays organ in church.
“But is he really a sex symbol?” Paul asked.
Matthew, a scruffy playwright in a Bauhaus T-shirt, has always been attracted to paraplegics. He dumped his last “model-type” girlfriend for Stephanie, a sweet, slightly overweight BIID sufferer. His friends thought he was crazy. “It’s harder than being gay,” he said. But the two bonded over their shared desires, and his now fiancée just moved across the country to live with him.
“Why not jump in with both feet?” she said.
The Descent of Men
There hasn’t been much fanfare, but last year marked the 100th anniversary of the discovery of the Y chromosome, and this year the DNA double helix is celebrating its 50th.
The world experienced another historic moment just last week with the publishing of the complete DNA sequence of the Y chromosome. All this makes geneticist Steve Jones a busy man.
“This is the 20th event I’ve been a part of this month,” he told a small gathering at his June 12 lecture at the city’s Science, Business and Industry Library. Mr. Jones, who is a professor of genetics at University College, London, was discussing his latest book, The Descent of Men (“the least erotic volume ever written about sex,” he warns in his preface). The future for those who bear the chromosome, at least biologically speaking, looks gloomy to him.
The sex is in a state of decline, Mr. Jones said. Besides the rapidly shifting relative social position of men and women, just look at the difference of life expectancy between the sexes: “society plays a part and stupidity helps, but the testes are much to blame.” Mr. Jones says that testosterone functions as a poison by suppressing the immune system.
Perhaps most astonishingly, the Y chromosome itself seems to be in danger of going the way of the dodo. “By a wild leap of extrapolation,” Mr. Jones told The Observer over coffee in the lobby of the Intercontinental Barclay Hotel, “I come out with: In the year 10002003, there will be no Y chromosomes left.” (A few days after his lecture, the science journal Nature reported that the human Y chromosome, in fact, uses palindromic sequences to protect itself against evolutionary decay. “The Y, which abjures the usual process of snuggling up to its partner in order to exchange genes and repair damage,” responded Mr. Jones, “has an internal means of putting errors straight …. In other words, in quintessentially male fashion, it goes in for sex with itself.”)
He says that post-Y there will still be males, but they’ll be made in a different way. As to what way that will be, Mr. Jones admits that prediction is difficult. Then again, by the time all this goes down, New York (a bastion of testosterone) “will be a bit like Ur of the Chaldees-a mound-and no doubt they were pretty macho there, too.”
Not to mention that in 10 million years, he guesses that we’ll all be something pretty unrecognizable.
“My much further prediction,” he went on, “is that the world will be a baking nuclear oven by then, with no males or females in it. But it will be the men who will have done the damage.”
But New York men may find some solace in his book. According to Mr. Jones, they have sperm counts that are almost twice that of their California counterparts.
Mr. Jones readily admits that he is not “the quintessence of what most people believe to be male.”
The slight, stooping Welshman with thinning hair said that he’s never been to a football game and can’t ride a bicycle. But manliness is his forte.
“I think ‘Only wimps write books’ is a good general rule,” he told The Observer . “I think I’m particularly wimpish. I can look at the subject coolly and objectively because I’m an atypical man,” he said confidently, then hesitated and added, “Maybe … maybe.”
His countrymen are less demure. In his book, Mr. Jones cites research showing that the mean number of sexual partners for American males is about 20 percent lower than the mean number for British males.
But men tend to tell lies, he cautions.
“Men always report more than twice the number of partners than women do. And that’s impossible-it takes two to tango, as I always say.
“So,” Mr. Jones concluded, “even if we’re pathetic, limp-wristed wimps, we’re either good liars, or we’re demons in bed.”
Introducing: The Underminer
Hi! Oh my God I have missed you so much! You look so different!
Wait! Did you get your hair straightened or just not wash it?
Anyway. Are you O.K.? Now? You know, after all that weirdness you went through? It’s just I remember last time I saw you, you were kind of … in a really crazy mind-set. And I’m sure all the rain didn’t help! I really, really hope things are better for you now.
I’ve been good. Well, actually better than good. I mean, it’s kind of amazing. You know everyone’s been talking about how hard the economy has been for them? Frankly, I am finding it cleansing. It’s just a time for me to really focus on what I really want to do. Instead of those flush 90’s years when I was making money off my real-estate and handbag businesses. Now I have the time to focus on art, taking up the guitar again, seeing old Silicon Alley pals ….
And it’s sort of going pretty well. I mean, it’s one of those things where you visualize your dreams and they can happen, even in these uncertain times. It’s funny, it all started coming together for me last fall, that last time we saw each other. Remember how you were tired and went home early? Well, it ended up being a crazy night! I ran into my friend on the street who was on her way to Mary-Louise Parker and Billy Crudup’s party for Mos Def’s birthday. It was just a little party at their house. I got talked into going, even though I was so tired (like you were!) and ready to just go home and finish my Whitney Studio Program application (I got in!), and I flopped down on the couch next to Edie Falco. We were talking about how she’s really worried that there are no roles for older women.
“Don’t you have a boyfriend?” she asked.
I said, “Yes, but I’m weird.”
And she said, “I’m going to end up alone too.” It was just so funny. It was just so funny. She’s just so cool. Anyway, we all ended up playing this extremely fun French improv parlor game, where you have to write down a story and people act it out. Mos and I did this hilarious but very political scene written by Suzan-Lori Parks, who was there and on our team. It was a short hip-hop interpretation of the Koran. Very controversial.
It must have been a good omen, though, to go to that party, because the next day I got a call from my agent, who said that Suzan-Lori wants to meet up with me and “discuss my career.” I don’t know, but we met up and I guess she liked my parlor-game performance and thinks that I should be in her next incredibly incendiary play in the fall!
It’s almost not surprising. I mean, I don’t mean to sound arrogant. It’s just that I went to this amazing, amazing psychic the other day. She told me the most amazing stuff about how I have a special connection with the sun. I’m apparently getting stronger and reaching my goals, and have-oh! this is weird, but she told me to tell you not to drink and drive? And also that you should watch out for “the man with the eyepatch”? Do you know what that may mean? Weird, huh?
So are you still job-hunting? Ugh, what a difficult time to find work, much less do something fulfilling.
Actually, my friend Adam is writing an extensive article for The New Yorker about all that. He’s calling it the “New Jobless.” You should get in touch with him. Maybe it would be good to articulate how you’re feeling.
I will totally look out for you, though. Have you ever thought about being a magazine editor? Or catering? That may be something for you to look into. I hear since the smoking ban, a lot of people are making money by selling single cigarettes on the street in front of bars. I’m not saying you should do that, I just meant that there are opportunities right under your nose. You never know. Anyway, good luck!