Do No Harm
The People Who Amputate Their Perfectly Healthy Limbs, And The Doctors Who Help Them
Words: Anil Ananthaswamy
Photography: Brian Lee
Edited by Roger D. Hodge
MATTER
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© MATTER, 2012
INTRODUCTION
Welcome to the first story from MATTER, a new publisher focused on in-depth and investigative journalism about the ideas and the people shaping our future. Our stories cover science, technology, medicine, the environment, society — everything from corporate misdeeds to radical new scientific ideas and the characters behind them.
It’s also an experiment to try and find a new model for high-quality journalism. Each one of our stories will be available to buy as an e-book as well as through our members-only website.
In this story, Do No Harm, you’ll go on an incredible, harrowing journey with Anil Ananthaswamy as he uncovers a network of people who suffer from a little known condition and are driven to take extreme action to relieve their pain.
We think you’ll enjoy it — and if you do, we hope you’ll visit our website to find out more.
Thank you
Bobbie Johnson & Jim Giles
MATTER
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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 unable 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, saying that he was 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 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 explained. 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).
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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, when The Journal of Sex Research published a paper on “apotemnophilia” — the desire to be an amputee. The paper categorised the desi
re 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 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.”
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 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, who has felt the pressure of BIID for most of his life, told me. 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 impact 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. Just a few months later, he had the surgery he craved. And less than a year after that, Patrick had become the gatekeeper himself.
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Sitting at home in a small, run-down 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 recalls. “I must have been crimson.” Patrick asked her to take a closer look. She did, and soon realised 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 for years was hard to take. But his confession also brought relief. For more than four decades he 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 stolen. At that moment he realised that he wasn’t the only person who was consumed by this strange obsession.
“There had to be somebody else out there,” Patrick told me, “but how could I find out who?”
As time went on, Patrick struggled with his thoughts about his leg: “How can I get rid of it? What can I do? How can I do it? I don’t want to die in the process.” Seeing a picture of an amputee, or worse, seeing an amputee on the streets, would ratchet up his emotions. “It would just drive me nuts,” he told me. “That could last for several days. All I could think about was how I could get rid of my leg.” His anxiety led him to make deals with God and pacts with the devil: “Take my leg, save somebody else’s,” he implored. Yet through it all, for the first four and a half decades of his life, he told no one. The loneliness was almost too much to bear.
Less than a year before his wife’s discovery, he had stumbled upon an anonymous classified ad in a local city newsletter. The person who placed it admitted a desire to amputate a limb; he was a wannabe. Patrick wrote to the post office box that was listed and began a correspondence with the man. Eventually they met, and the man told him about others who were seeking amputations. It was a deliverance. “Oh my God, I’m not alone with this anymore,” Patrick recalled thinking. “I’m not nuts.”
Yet finding others who shared his condition did not lessen his need. If anything, Patrick’s desperation grew. He considered a DIY amputation. He had heard of people who had lain down on train tracks and let a train run over their limbs, or who had blown their legs off with a shotgun. “The trouble with a train is that if the train is moving at a good clip, you can kill yourself very easily, because it can pick you up and spit you out,” he said. “I really didn’t want to die in the process and not find out what it was like to live with one leg.”
Another wannabe who had done a DIY amputation suggested Patrick practise first, so Patrick decided to get rid of part of his finger as a prelude to amputating his leg. With a pen and a rubber band, he made a tourniquet for one of his fingers and stuck it into a thermal cup full of ice and alcohol. After part of the finger became numb and Patrick was unable to bend it, he took a hammer and chisel and chopped off the bit above the first knuckle. He even smashed the detached digit. “So they couldn’t reattach it even if they wanted to,” Patrick told me.
Crushing the amputated digit also aided in the cover-up: hospital staff were told that a heavy object had fallen on the finger. When a doctor injected his injured finger with a painkiller, Patrick pretended that the needle hurt. His finger was still numb.
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It was eight years ago that Patrick finally made it to Asia to see the surgeon Gregg Furth introduced him to. He was admitted to hospital on a Friday evening, and had to wait until Saturday evening to be wheeled into surgery. “The single longest day of my life,” he told me. He awoke from his anaesthesia the next day. “I looked down and couldn’t believe it. It was finally gone,” he said. “I was ecstatic.” His only regret in the eight years since his amputation is that he didn’t get it when he was younger. “I wouldn’t want m
y leg back for all the money in the world, that’s how happy I am.”
This comfort with his condition is reflected at home. Just before the surgery, his children gave him a Ken doll, which he keeps in a plastic box stuffed with scrapbooks of photographs of amputees that he collected in his younger days. The doll wears a pair of red shorts; one of its legs ends above the knee, in a stump wrapped with a white gauze bandage. In Patrick’s house, I saw a decorative skeleton hanging off a chandelier and didn’t think much of it. “Look more closely,” he urged. Only then did I notice that it, like Patrick, was missing part of a leg and part of one finger. Then there was a statue of Michelangelo’s David on the mantelpiece. It too was missing part of a leg. The family had acknowledged Patrick’s suffering and was celebrating his freedom from BIID. Patrick now seemed genuinely comfortable with his body.
This feeling of relief and release is a sentiment expressed by just about every BIID amputee who has been studied by scientists. That evidence ought to allay at least one fear that ethicists have expressed about BIID—that once you amputate a healthy limb, the patients will eventually come back for more. In nearly all accounts, they don’t, unless from the very beginning their BIID involves multiple limbs.
Furth, for his part, was diagnosed with cancer and died in 2005 without ever getting his own amputation. When he vetted Patrick for surgery, Patrick told him that after his amputation he would try to help the others he knew were out there. Nearing death, Furth called Patrick. Would he take over the gatekeeping duties for the surgeon in Asia? Patrick agreed to do so, and for seven years he has acted as the go-between for BIID sufferers. One way or another, they eventually find him. And just before he could use dry ice on his leg, David found him too.
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