Talking to a Guy Who Found Peace Through Self-Amputation

We spoke to a man who suffers from Body Integrity Identity Disorder, a rare condition that makes you feel like one of your limbs doesn't belong on your body.

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Mar 12 2015, 2:30pm

Image via Flickr user Batik Kaftan Crafts

Body Integrity Identity Disorder ( BIID) is rare psychological condition that causes sufferers feel like a limb, or limbs, don't belong to their bodies. These people often develop a preoccupation with amputation, and in some cases resort to self-administered surgery. Neurological recognition of BIID only came about in the mid 1990s, but early research indicates that it stems from a flaw in the brain's right parietal lobe, which houses the body's internal body map. This has led many to view it as a physiological defect, rather than a psychological condition.

I've been fascinated by BIID since I heard about it. Just what exactly would drive someone to amputate a healthy limb? To find an answer to this question, I joined a Yahoo group for sufferers called "Fighting it" that's been around since the end of 2001 and currently has 2,356 members, including a 30-year-old guy who I'll call "John." He was reluctant to describe how he actually removed his leg, but was happy to discuss how he got to that point.

VICE: Hi John, can you describe how BIID first affected you?
John: It was my left leg below the knee that bothered me. I was into my early teens when I figured out that I wanted to be an amputee. It was an alien realization—but then looking back, I remember playing as a young child and pretending to be an amputee.

What was it about the leg that bothered you?
It's hard to describe what it was like to have a limb that didn't belong. Every step felt odd and it even felt odd sitting. If I got busy I would forget about it but the feeling come back as soon as I stopped. There were periods when the feeling was less troubling and times when it was worse. I felt like I was probably the only person to think that way but eventually I found a couple of Yahoo groups and that gave me some comfort. But there was always the little annoying buzz in the back of my mind.

Did you often think about getting it removed?
Of course. And obviously a nice, safe, painless surgery would have been the first choice. But that option wasn't open, so I was left trying to figure out the least terrible alternative. I will tell you about a plan I had when I was about 15. I was going to pretend to fall off my bike and put my leg under a train. Then, after the leg was off, I'd coast to a pay phone. I don't know if that was stupidity or desperation.

What was happening in your life when you decided you were ready to be an amputee? How were you feeling?
My life was good and stable and that's what made the time right. I'd decided I wanted it gone a dozen years before. I was pretty level and just knew I could do it. I felt just a little bit more strong than apprehensive.

But then how did you feel the morning you went through with it? Were you nervous?
I was super nervous. I just knew that somehow three dozen lead pellets would find their way through my leg. I was so nervous I almost threw up, but I knew it would give me the best chance to relieve my discomfort, so I counted to three. Later, when it was done, I was awash with relief. It was over and I was free.

How did you feel when you got to the hospital?
Most of the fear left me once the pain really hit and help was on the way. I believed I was going to live and it was just a matter of recovering.

Are you ever tempted to remove the other one?
The rest of my body is mine and I would very, very much like to keep it. I suspect that I'd handle losing another limb better than most due to prior experience, but I'd still be quite upset. I don't find the disease is addictive like tattoos and piercings seem to be. And even if I desired another amputation, I think my bravery was all used up the first time. Imagine, truly imagine, engineering a situation where the bones and muscles in a limb are to sustain such damage as to preclude any attempt at salvage despite the advances of modern medicine.

Do you ever miss your leg?
Sometimes, but I'm not sure if it's because I miss my leg or because it reminds me I'm a nut. Whenever I doubt my decision I just remember the discomfort.

I found it hard to find someone willing to talk to me about this. Why did you decide to share?
I'm not the first to take matters into my own hands, and I won't be the last. The issue is that sufferers of BIID should be accepted enough to ask for help so they don't have to go to such great lengths. That's why I'm speaking out.

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