brian lee

Photostory: Losing a limb, becoming whole

In September of last year, I asked photographer Brian Lee to visit a man with an unusual past.

When Patrick was around four years old, he began to have strange feelings about his left leg. He sensed that it was not part of him: a feeling that grew and grew, until he became obsessed with the idea of removing the limb. He did precisely that in a secret procedure around a decade ago, paying a sympathetic surgeon to cut off his leg. Today his only regret is not having the amputation performed earlier in life.

Brian photographed Patrick at home for Do No Harm, a MATTER story that chronicles the lives of people with Body Integrity Identity Disorder, a rare condition which causes sufferers to feel that parts of their body are alien to them. Not everyone with BIID wants to rid themselves of a limb entirely: some want the offending body part to be paralysed, others feel compelled to be blind or deaf. But we were following the stories of those who took the surgical option.

It was a challenging shoot, partly because Brian wanted to capture the normalcy of Patrick’s life — but Patrick asked that his identity be concealed. (We have not used his real name here, nor did we in the MATTER story).

One of the surprising things about BIID is the relief that sufferers feel after surgery. (One recent study of 20 such amputees found that none regretted their decision.) The loss of a limb — which is probably the wrong word, since sufferers don’t see it as loss — feels right. Patrick told our reporter much the same thing, and it’s evident in Brian’s photographs.

These two shots feature a skeleton and a copy of Michelangelo’s David, both missing half of one leg. They were presents from Patrick’s children. They are examples of the teasing that kids routinely hand out to parents — proof, perhaps, of how ordinary Patrick’s decision feels to those at home.

When I first talked to Brian about the shoot, I thought that the need to hide Patrick’s identity would be a problem. But by capturing Patrick against bright backgrounds, Brian was able to produce images that feel intimate and domestic, but obscure the subject. Here are two examples.

BIID patients don’t generally have any interest in prosthetics: most feel complete after the operation and don’t crave an artificial addition to their body. But, like any amputee, they face physical challenges. Some use wheelchairs. For Patrick, crutches are a vital everyday technology — look at this collection in his garage, piled up like the boxes of old tennis rackets and golf clubs that fill other people’s storerooms. And Patrick does have one use for a prosthetic: exercise.

To find out more about the science behind BIID, and to hear the stories of other BIID patients, read Do No Harm at the MATTER website. The story is free to access, but we rely on paid members to fund the in-depth journalism we produce — and we’d greatly appreciate your support.

Jim Giles, MATTER co-founder