Illogical desires that can't be ignored source

Original at: The Toronto Star

Since he was a child, Greg has had a constant desire to be rid of his left leg. He's not alone

Oct 04, 2007 04:30 AM

Laura Mueller - Special to the Star

When Greg showed up at a hospital in the middle of the night complaining of a frozen foot, the nurse made him sit for half an hour in the waiting room in hopes that the "pins and needles" sensation would go away on its own.

When the nurse realized that Greg had purposely frozen his lower leg by submerging it in dry ice for six hours, he was whisked off for examination. Hours later, Greg was recuperating after doctors were forced to amputate the lower portion of his left leg.

He had accomplished his goal.

Greg (a pseudonym) is one of a small but increasingly vocal group of people with an unclassified condition known as Body Identity Integrity Disorder.

In many ways, Greg, whose leg was amputated three years ago, is an average North American: He's in his 30s, married with one young child and successful at his career. But ever since he was a child, Greg says, he's had the constant desire to be rid of his lower left leg.

It's impossible to estimate the number of people with Body Identity Integrity Disorder worldwide, but the advent of the Internet has let them form a community online.

The appeal of anonymity and a chance to connect with the few people who can claim to understand them has led so-called "amputee wannabes" to come out of the woodwork and publicize their plight in a way that was previously impossible.

Little is known about the disorder and few people have studied it. It was first classified in 1977 as a sexual attraction to the idea of becoming an amputee.

Now it's no longer considered a simple sexual deviation.

The few psychologists who have studied this phenomenon have largely concluded that the desire to have a limb amputated is a matter of self-identity. Doctors say these people are simply "troubled," plagued by illogical desires that they cannot ignore.

Wannabes, ironically, describe not feeling "whole" with all of their limbs intact.

Most claim that a certain part of their body feels foreign. And they are very specific about the limb they wish to have removed, right down to the number of inches they want their stump to be.

Most wannabes can remember having these feelings as far back as childhood. A 33-year-old wannabe from Vienna who calls himself Matt says he has felt attracted to the idea of being disabled since he was a young child.

Matt recalls his kindergarten teacher announcing the arrival of a new classmate – a boy whose legs were amputated above the knee. Matt's immediate reaction was that "it felt like a jackpot."

Now Matt says he wants to have all four of his limbs removed to live as a quadruple amputee. The only thing preventing him from achieving this goal, he says, is money.

Self-injury, like Greg's solution with dry ice, is not the only way to have a limb amputated, Matt says. Although it's a closely guarded secret in wannabe communities, Matt knows of at least two countries where one can pay a doctor to create a false medical reason to explain an elective amputation, at a cost of about $10,000.

Wannabes didn't always have to resort to self-injury or black market procedures.

Dr. Robert Smith, a surgeon at the Falkirk District Royal Infirmary in Scotland, amputated the legs of two patients at their request in the late '90s, the BBC reported.

In 2000 he was set to amputate the leg of a third patient, an American psychologist, when the hospital barred Smith from performing the surgery. No other doctor is known to have agreed to amputate the healthy limbs of patients since then.

A controversial essay written by two Australian bioethics experts argues that amputation may be the best and only way to treat this condition. Neil Levy, one of the authors, explains there is evidence that wannabes are truly suffering, and the medical community should provide the treatment they need. He says the only treatment that's been shown to provide relief so far is amputation.

"If (having the disorder) really is a significant suffering, then these people are not choosing to become disabled; they're already disabled. It's just that their disability is not visible."

But in order for any treatment options to be discussed, Levy says, the medical community needs to be educated about Body Identity Integrity Disorder.

Psychiatrists can't help their patients because they've never heard of the disorder, he says.

It's not included in the bible of psychological disorders, the Diagnostic and Statistical Manual. The Internet is being used as a recruitment tool in at least one new study on the topic.

Researchers at Monash University in Australia are conducting a brain imaging study on 20 patients.

Another study at the Center for Brain and Cognition at the University of California San Diego is also mapping the brain in hopes of finding a pattern among those with the disorder.

The preliminary results suggest the disorder could be caused by a malfunction of part of the brain.

Doctors V.S. Ramachandran and Paul McGeoch hope to prove the disorder can be treated by simply filling a patient's ear with cold water.

The treatment is used to diminish the symptoms of somatoparaphrenia, a rare condition caused by strokes that makes the patient convinced that their left arm or leg does not belong to their body.

The main setback appears to be the time limits of the treatment: somatoparaphrenia is a temporary condition, so the cold-water treatment, which McGeoch says works for about 12 hours, is sufficient.

For Body Identity Integrity Disorder sufferers plagued by these thoughts 24/7, temporary relief likely won't be enough.

Ramachandran and McGeoch's position is controversial. Some wannabes see their desires as a key part of their identity, and the suggestion that their disorder is merely a chemical oddity that should be fixed provokes outright rage in some wannabes.

Claire, a mother of four from Eastern Canada, was one of the first test subjects in Ramachandran and McGeoch's study in the early summer. Claire writes in an email that she was conflicted about participating in the research project.

"I am afraid to do this, for one reason – because I'm afraid if I'm `cured' ... it will take away from part of my identity."

Claire says that in the several months that she has been blogging on a website for "transabled" people, she has "come out" to her husband and gone to therapy. She bought a wheelchair and has spent weekends in another city pretending to be a paraplegic.

The experience was eye-opening, she writes.

"It has shown me that when I live life as a para, I feel right. Instead of spending my day in anxiety or frustration, plagued by obsessive thoughts that never go away, unable to truly concentrate on or enjoy anything, I just feel normal. The demons in my head are stilled."

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