The Man Who Wasn't There: Investigations into the Strange New Science of the Self (9 page)

Allan would spend just two weeks in the board-and-care home, and then he passed away.

I met Michaele a few weeks after Allan’s death. We sat in the same living room where I had first met him. On a small table next to Allan’s brown leather sofa, Michaele had set a small white vase full of fresh flowers from their garden, and placed a small clay tortoise atop a few of his favorite books. A candle of lavender-colored wax burned beside a framed photograph of a younger Michaele and Allan. On the sofa’s high back, Michaele had carefully draped Allan’s brown corduroy jacket.

THE MAN WHO DIDN’T WANT HIS LEG

IS THE FEELING THAT YOU OWN YOUR BODY AND ITS VARIOUS PARTS BASED ON REALITY?

The leg suddenly assumed an eerie character—or more precisely, if less evocatively, lost all its character—and became a foreign, inconceivable
thing
, which I looked at, and touched, without any sense whatever of recognition or relation. . . . I gazed at it, and felt, I don’t know you, you’re not part of me.

—Oliver Sacks

Theoretically you can have a phantom of almost any part of the body, except of course the brain; you can’t have a phantom brain, by definition, because that’s where we think it’s all happening.

—V. S. Ramachandran

T
his wasn’t the first time that David had tried to amputate his leg. When he was just out of college, he had tried to do it using a tourniquet fashioned out of an old sock and strong baling twine. David locked himself in his bedroom at his parents’ house, his bound leg
propped up against the wall to prevent blood from flowing into it. After two hours the pain was unbearable, and fear sapped his will. Undoing a tourniquet that has starved a limb of blood can be fatal: injured muscles downstream of the blockage can flood the body with toxins, causing the kidneys to fail. Even so, David released the tourniquet himself; it was just as well that he hadn’t mastered the art of tying one.

Failure did not lessen David’s desire to be rid of the leg. It began to consume him, to dominate his awareness. The leg was always there as a foreign body, an impostor, an intrusion. He spent every waking moment imagining freedom from the leg. He’d stand on his “good” leg, trying not to put any weight on the bad one. At home, he’d hop around. While sitting, he’d often push the leg to one side. The leg just wasn’t his. He began to blame it for keeping him single; but living alone in a small suburban town house, afraid to socialize and struggling to form relationships, David was unwilling to let anyone know of his singular fixation.

David is not his real name. He wouldn’t discuss his condition without the protection of anonymity. After he’d agreed to talk face-to-face, we met in the waiting area of a nondescript restaurant, in a nondescript mall just outside one of America’s largest cities. A handsome man, David resembles a certain edgy movie star whose name, he feared, might identify him to his coworkers if I revealed it. He had kept his secret well hidden: I was only the second individual whom he had confided to in person about his leg.

The cheerful guitar music in the restaurant lobby clashed with David’s mood. He choked up as he recounted his depression. I’d heard his voice cracking when we’d spoken earlier on the phone, but watching this grown man so full of emotion was difficult. The restaurant’s
buzzer went off. Our table inside was ready, but David didn’t want to go in. Even though his voice was shaking, he wanted to keep talking.

“It got to the point where I’d come into my house and just cry,” he had told me earlier over the phone. “I’d be looking at other people and seeing that they already have their lives going good for them. And I’m stuck here, all miserable. I’m being held back by this strange obsession. The logic going through my head was that I need to take care of this now, because if I wait any longer, there is not much chance of a life for me.”

It took some time for David to open up. Early on, when we were just getting to know each other, he was shy and polite, confessing that he wasn’t very good at talking about himself. He had avoided seeking professional psychiatric help, afraid that doing so would somehow endanger his employment. And yet he knew that he was slipping into a dark place. He began associating his house with the feeling of being alone and depressed. Soon he came home only to sleep; he couldn’t be in the house during the day without breaking into tears.

One night about a year before I met him, when he could bear it no longer, David called his best friend. There was something he had been wanting to reveal, David told him. His friend’s response was empathetic—exactly what David needed. Even as David was speaking, his friend began searching online for material. “He told me that there was something in my eyes the whole time I was growing up,” David said. “It looked like I had pain in my eyes, like there was something I wasn’t telling him.”

Once David opened up, he discovered that he was not alone. He found a community on the Internet of others who were also desperate to excise some part of their body—usually a limb, sometimes two. These people were suffering from what is commonly called body
integrity identity disorder (BIID). The scientific community is debating whether BIID is the correct name for the condition.
They have also suggested xenomelia, from the Greek for “foreign” and “limb,” but I’ll stick to BIID in this chapter.

The online community has been a blessing to those who suffer from BIID, and through it many discover that their malaise has an official name. With a handful of websites and a few thousand members, the community even has its internal subdivisions: “devotees” are fascinated by or attracted to amputees, often sexually, but don’t want amputations themselves; “wannabes” strongly desire an amputation of their own. A further delineation, “need-to-be,” describes someone whose desire for amputation is particularly fierce.

It was a wannabe who told David about a former BIID patient who had been connecting other wannabes to a surgeon in Asia. For a fee, this doctor would perform off-the-books amputations. David contacted this gatekeeper on Facebook, but more than a month passed without a reply. As his hopes of surgery began to fade, David’s depression deepened. The leg intruded more insistently into his thoughts. He decided to try again to get rid of it himself.

Rather than resorting to a tourniquet, this time he settled for dry ice, one of the preferred methods of self-amputation among the BIID community. The idea is to freeze the offending limb and damage it to the point that doctors have no choice but to amputate. David drove over to his local Walmart and bought two large trash cans. The plan was brutal but simple. First, he would submerge the leg in a can full of cold water to numb it. Then he would pack it in a can full of dry ice until it was injured beyond repair.

He bought rolls of bandages, but he couldn’t find the dry ice or the prescription painkillers he needed if he was going to keep the leg in
dry ice for the required eight hours. David went home despondent, with just two trash cans and bandages, preparing himself mentally to go out the next day to find the other ingredients. The painkillers were essential; he knew that without them he would never succeed. Then, before going to bed that night, he checked his computer.

There it was: a message. The gatekeeper wanted to talk.

We are only just beginning to understand BIID. It hasn’t helped that the medical establishment generally dismisses the condition as a perversion. Yet there is evidence that it has existed for hundreds of years. In a recent paper, Peter Brugger, the head of neuropsychology at University Hospital Zurich, Switzerland, cited the case of an Englishman who went to France in the late eighteenth century and asked a surgeon to amputate his leg. When the surgeon refused, the Englishman held him up at gunpoint, forcing him to perform the operation. After returning home, he sent the surgeon 250 guineas and a letter of thanks, in which he wrote that his leg had been “
an invincible obstacle” to his happiness.

The first modern account of the condition dates from 1977, when
The Journal of Sex Research
published a paper on “apotemnophilia”—the desire to be an amputee. The paper categorized the desire for amputation as a paraphilia, a catchall term for deviant sexual desires. Although it’s true that most people who desire such amputations are sexually attracted to amputees, the term “paraphilia” has long been a convenient label for misunderstandings. After all, at one time
homosexuality was also labeled as paraphilia.

One of the coauthors of the 1977 paper was Gregg Furth, who eventually became a practicing psychologist in New York. Furth
himself suffered from the condition and, over time, became a major figure in the BIID underground. He wanted to help people deal with their problem, but medical treatment was always controversial—often for good reason. In 1998, Furth introduced a friend to an unlicensed surgeon who agreed to amputate the friend’s leg in a clinic in Tijuana, Mexico.
The patient died of gangrene and the surgeon was sent to prison. Around the same time,
a Scottish surgeon named Robert Smith, who practiced at the Falkirk and District Royal Infirmary, briefly held out legal hope for BIID sufferers by openly performing voluntary amputations, but a media frenzy in 2000 led British authorities to forbid such procedures. The Smith affair fueled a series of articles about the condition—some suggesting that merely identifying and defining such a condition could cause it to spread, a form of cultural contagion.

Undeterred, Furth found a surgeon in Asia who was willing to perform amputations for about $6,000. But instead of getting the surgery himself, he began acting as a go-between, putting sufferers in touch with the surgeon. He also contacted Michael First, a clinical psychiatrist at Columbia University in New York. Intrigued,
First embarked on a survey of fifty-two patients. What he found was instructive. The patients all seemed to be obsessed by the thought of a body that was different in some way from the one they possessed. There seemed to be a mismatch between their internal sense of their own bodies and their actual physical bodies. First, who would later lobby to have BIID more widely recognized, became convinced that he was looking at a disorder of identity, of the sense of self.

“The name that was originally proposed, ‘apotemnophilia,’ was clearly a problem,” he told me. “We wanted a word that was parallel to gender identity disorder. GID has built into the name a concept that
there is a function called gender identity, which is your sense of being male or female, which has gone wrong. So, what would be a parallel notion? Body integrity identity disorder hypothesizes that a normal function, which is your comfort in how your body fits together, has gone wrong.”

In June 2003, First presented his findings at
a meeting in New York. Robert Smith, Furth, and many BIID sufferers attended the meeting. One of them was David’s gatekeeper, whom I’ll call Patrick.

Without much warning, Furth walked up to Patrick and his wife with a startling proposition. “We are standing there eating our sandwich, and he says to me, ‘Would you be interested in a surgical option?’” Patrick had felt the pressure of BIID for most of his life. He didn’t have any reservations. “Hell, yes. Yes, yes, yes, no question about it.” To this day, Patrick doesn’t know why Furth singled him out. Patrick is not a religious man, but he felt a higher power was giving him his due.

The next evening, Patrick and his wife went over to Furth’s apartment for an evaluation. Furth grilled Patrick to make sure he was for real. Was Patrick’s desire due to BIID or a sexual fetish? How did it affect his life? For two hours the questions flowed. Patrick answered them, scared that he’d “flunk the evaluation.” He didn’t, and Furth agreed to make the recommendation. That was where it all began. Ten months later, he had the surgery he craved. And less than a year after that, Patrick had become the gatekeeper himself.

Sitting at home in a small, somewhat rural American town not too far from the ocean, Patrick recalled the day his wife found out about his obsession. It was during the mid-’90s. As with almost all BIID
sufferers, Patrick was fascinated with amputees, so he began downloading pictures of them off the Internet and printing them out. One day his wife was sitting in front of their computer, while Patrick sat in a wingback chair. She noticed a pile of printouts. They were images of men, but “completely clothed, no nudes or anything like that.” It was an awkward moment. “She was thinking that maybe I was gay,” Patrick recalled. “I must have been crimson.” Patrick asked her to take a closer look. She did, and soon realized that the men were all amputees.

Patrick told his wife that he had felt odd about his leg since he was four years old, a feeling that eventually grew into an all-consuming desire to be rid of it. It was a shock: they had been married for decades, and the revelation that he had been hiding something from her for all those years was hard to take. But his confession also brought relief. For more than four decades Patrick had suffered alone. Growing up in small-town America, with conservative parents, in an era when “people didn’t believe in going and seeing mental-health professionals,” Patrick was mystified by what he felt. By the early ’60s, as a teenager, his obsession with amputees and amputations took him to a library in the nearby state capital, where he hoped to find books on the subject. To his surprise, most of the pictures of amputees had been cut out and stolen. At that moment he realized that he wasn’t the only person who was consumed by this strange obsession.