One sunny Florida morning in 2001, George Boyer reached the end of his tether. After 18 years of suffering in silence, he decided to take matters into his own hands. Cocking his gun with shaking hands, Boyer sat in his backyard, aimed the gun at his leg, gritted his teeth, and blasted a hole right through it.
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Later, after reaching hospital, doctors were presented with a baffling dilemma. Rather than wanting his leg to be saved, Boyer begged for it to be amputated, even though the limb was salvageable.
By shooting himself in the leg, Boyer was acting out a long-term desire to be an amputee – a desire he’d harboured since he was a child. He’d spent years planning and researching for that morning, swotting up on safety measures and practising his aim on shoulders of pork.
In an interview with one newspaper, Boyer explained his desire to go to extremes. “I’ve wanted to be one-legged since I was a child,” he said. “No-one can help this overwhelming and irrational wish that I’ve experienced with varying degrees for as long as I can remember. For the first time in my life, I’m finally happy.”
George’s case is not a one-off. A few years earlier, Dr Robert Smith hit UK headlines after removing a healthy limb from each of two patients at a Scottish hospital. One of the men, Kevin Wright from Essex, had his lower left leg removed at the Falkirk and District Royal Infirmary in September 1997. In a post-op interview he told the press, “I just didn’t want it. It didn’t feel a part of me. By taking that leg away, the surgeon has made me complete.”
After a near-exhaustive search to find a surgeon willing to perform an elective amputation, Wright was lucky enough to find Dr Smith. Others, like George Boyer, have to resort to desperate measures.
Dr Michael First, one of the world’s leading experts on psychiatric diagnosis and assessment, has become the first person to carry out a detailed study on voluntary amputation. Approached by a TV producer looking for people to appear in a documentary, First was introduced to what he’d later call Body Integrity Identity Disorder (BIID). “I was shocked,” he says. “Initially it sounded like Gender Identity Disorder, but I realised we’d come across a new mental condition, and that doesn’t happen often. I decided I wanted to investigate it further. It was pure curiosity.”
First joined forces with psychologist – and amputee wannabe – Gregg Furth. “Gregg wanted it to be a recognised condition, so surgeons would be willing to carry out amputations,” says First. “So I asked him to help me recruit people for a study by posting a message on internet discussion groups. I was astonished when 52 people came forward.”
From conducting interviews and group meetings, First discovered everyone had a different story as to why they wanted to lose a limb, and there was only a small minority of the study group for whom it held a sexual element.
“For a lot of people it’s primarily a sense of identity,” explains First. “They feel like their identity is that of an amputee, and they feel awkward or discomforted having four limbs. They have this idea stuck in their heads since childhood that they really have only three limbs. The only thing in common between them was being exposed to an amputee from an early age.”
First interviewed George Boyer and another man, who’d deliberately severed his leg in a wood-chipper. “Of course, some people will try anything,” he says. “I even heard about a guy who sat his leg across a railway track so the train would take it clean off. The most common way is to expose the limb to dry ice for several hours, but even this doesn’t guarantee success.
I spoke to a lady who tried to damage her leg this way, and the doctors refused to amputate her leg. She had to live with a disfigured leg for more than two years.”
One of the people involved in First’s study was Roger Kaufman, based in Brooklyn, New York. Roger couldn’t find a surgeon to give him a helping hand, so he began his own self-amputation sessions about four years ago, at the grand old age of 70.
Now, he’s running out of fingers and toes. “When I was five years old at nursery there was a boy who had a hand that was a mitt. Maybe the early experience of seeing that is significant,” he comments. Separated from his wife in 1995, Roger’s newfound freedom meant he could experiment with some home modifications.
“I had been a boy scout and we did first aid, I figured that if I cut off a toe I could do the first-aid necessary to quench the flow of blood,” says Roger. “The first time I got all ready, but chickened out, so I took a nap and when I woke I did it right away. I submerged the toe in iced water for five to 10 minutes beforehand to numb the area. I used a mini rubber band as a tourniquet, then carefully placed a chisel on the toe joint and hit it down with a hammer. It was like dealing with a piece of wood, it was that numb.”
Encouraged by his first DIY attempt, it wasn’t long before Roger took up the hammer again. Several weeks later, he began doing it regularly, taking a bit off here and there. He even had a buddy come over and lop one off for him. “I would say within a year I had no toes on the left side and just half a big toe remaining. The only toe I have remaining now is the big one on the right foot.
A man I know from the internet did my middle finger on the right hand. He used a scalpel to get through the joint, and to cut further back he used ordinary garden pruning shears. If you don’t stitch up the wound it could take between six and eight weeks to heal, but if you do stitch it, it could take only two.”
BIID doesn’t just relate to amputation. Sean O’Connor runs a website for sufferers of the condition, called Transabled.org. Since the age of 10, he has wanted to become paraplegic.
“I wasn’t very old when I started haunting the public library and the local university’s medical library,” Sean says. “I was seeking information about orthopaedics, wheelchairs and other apparatus. I will readily admit that at the time I didn’t have an understanding of what paralysis was, and a big part of the fascination was related to the apparatus. I also didn’t have an understanding of my own feelings. I just knew I really should be paralysed.”
Classed as a ‘wannabe’, Sean pretends to live the life of a paraplegic by using a wheelchair and even hanging out with disabled people. He is deeply committed to sending out the message that Body Integrity Identity Disorder is a disability in itself. “I think people need to change the way that they think about this,” he says. “It’s not ‘amputation and other related conditions’. The condition is BIID, and it just so happens that BIID encompasses amputation, paralysis, blindness, deafness, etc. I can’t help advocating the inclusion of all ‘flavours’ of BIID. Anything less is actually damaging to ‘the cause’.”
Sean says, “I’ve been asked would being paraplegic be enough. And going one step further, considering a bilateral femoral nerve transection, which would indeed paralyse my legs but wouldn’t affect my bowels, bladder or genitalia. Would that be enough? It’s a good question. I happen to think that being an L1/L2 (with a loss of movement and feeling in the legs) paraplegic most certainly would.”
For Roger, however, the loss of most of his toes and fingers is not enough. “I would consider losing a good portion of my palm on my left hand as long as I can grip,” he says. “One has to establish the boundaries of what is functional and what is not. Getting the pills out of blister packs is pretty hard now. I can use can openers and tie laces, but I do have Velcro shoes. As long as I’ve got my thumbs I’ll be ok. I have no stopping point. I ask myself, ‘When will I stop?’ and the answer is this: never.”
Dr Michael First is planning to extend his study to include all forms of BIID. If you feel this disorder applies to you and you would like to be involved, please contact him at Mbf2@columbia.edu