This wasn’t the first time that David had tried to amputate his leg. When he was just out of college, he’d 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 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 townhouse, afraid to socialise 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 agreed to talk, 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 fears, might identify him to his co-workers. He’s kept his secret well hidden: I am only the second individual whom he has 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 ago, when he could bear it no longer, David called his best friend. There was something he had been wanting to reveal his whole life, David told him. His friend’s response was empathetic — exactly what David needed. Even as David was speaking he 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 now called Body Integrity Identity Disorder (BIID).
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 sufferers to a surgeon in Asia. For a fee, this doctor would perform off-the-book 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.
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 trashcans. 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 eight hours. David went home despondent, with just two trashcans 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 has generally dismissed 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, cites the case of an Englishman who went to France in the late 18th 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, whenThe Journal of Sex Research published a paper on “apotemnophilia” — the desire to be an amputee. The paper categorised the desire for amputation as a paraphilia, a catchall term used 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 labelled as paraphilia.
One of the co-authors of the 1977 paper was Gregg Furth, who eventually became a practising 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 Tijuana clinic. The patient died of gangrene and the surgeon was sent to prison. A Scottish surgeon named Robert Smith, who practised 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 fuelled a series of articles about the condition — some suggesting that merely identifying and defining such a condition could cause it to spread, like a virus.
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 52 patients. What he found was illuminating. 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 physical bodies. First, who would later lobby to have BIID more widely recognised, 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 hypothesises that a normal function, which is your comfort in how your body fits together, has gone wrong.”