my top ten list of the most amazing and possibly even true scientific phenomena that blow my mind, continued: body identity integrity disorder

by nikki meredith

amputeeIt’s spring on I-5, my favorite time to be driving to Los Angeles. Miles of apricot, peach and almond trees are in bloom. The experience is so inspiring, that I reach to turn-off NPR – I’m too happy to listen to the world’s problems. But my finger pauses half-way to the radio: a reporter from Australian Public Radio is describing a man who tried to find a surgeon to amputate his healthy left leg. When he couldn’t find a doctor to do it, he bought some dry ice and attempted to freeze off the leg.  By the time he was taken to the hospital, the leg could not be saved and a doctor had to amputate it.  What the hell?

I get off I-5 and stop my car at a truck stop so I can listen to the whole story.

From the time the man was a very little boy, he had the feeling that his left leg didn’t belong and having to live with it made him miserable. He was afflicted with a syndrome called  “body identity integrity disorder.”

The Australian Public Radio reporter doing the story was an amputee herself and she made it clear in the beginning that the idea that someone would want to voluntarily amputate a healthy limb enraged her.  I’m not an amputee but I found myself feeling angry too.   Wanting to have one limb removed was beyond belief but when the reporter mentioned that there are people with the condition who want both of their legs amputated, I could barely contain myself. My anger at the people seeking amputation was nothing compared to the anger I felt toward a doctor who would even consider removing someone’s healthy limb, no matter how much they begged to have the surgery.   A doctor in Scotland had done such a thing and my reaction was that his medical license should be taken away and they should throw him in prison forever.

Here’s the amazing thing: by the end of the story both of us — the reporter and I – had changed our minds. Instead of judgment, we felt compassion for the people who want to amputate their limbs and respect for the doctors who want to help them.

I later learn that these people aren’t crazy, though when the syndrome was first identified everyone thought they were. Now it’s believed that this is not psychological disorder but a neurological one. Apparently we all have body maps in our brains and the suspicion is that people with this syndrome have bits missing from their brain’s body map. In some cases, the bit missing is the representation of one arm or one leg. In a few, however, they have no representation for either leg. These are the people who want both legs amputated even though they know they would then be confined to wheelchairs for the rest of their lives.

Dr. Chris Ryan, a psychiatrist and senior clinical lecturer at the University of Sidney has interviewed a number of people with this syndrome and he now believes they are entitled to get what they want  – a safe surgical amputation. He says they suffer terribly. Many are suicidal. The ones who have been able to find surgeons to amputate their unwanted limbs say they have no regrets. Most say that they have never felt better.

When the man whose leg had to be amputated after he destroyed it with dry ice woke up from surgery and saw what he described as a “neat little bandaged stump” he was in  “absolute ecstasy.”

The primary clue that this disorder is neurological came from studying stroke victims.  There are some people who’ve had strokes who believe that the affected limb no longer belongs to them. When I heard this, I remembered that’s exactly what happened after my father had a stroke.  When I told him that his arm was paralyzed, he looked at me as if I were crazy. He no longer believed that the paralyzed arm was his. Apparently people like my father have strokes that affect the right parietal lobule of the brain. That’s the part of the brain that integrates and maintains the body map.

In a journal article Dr. Ryan describes a patient he calls Jill who is 48, married, mother of two. She manages three gift shops and in her spare time coaches her 10-year-old’s soccer team. Life is good except for her left leg. Specifically, her foot and shin up to exactly 4 centimeters below her left knee. She can draw a line around her leg at the exact point. Above that line, her leg feels perfectly normal. Below that line, it feels as though it shouldn’t be there. She hates it being there. Ryan quotes her as saying:  “It makes me so unhappy.”

In the article, Dr. Ryan acknowledges how extreme it is to advocate surgical amputation but he arrived at that recommendation after seeing what risks people take to get rid of their unwanted limbs.  “ Nobody wants to be chopping off people’s legs for no reason but nobody wants people to be standing under train tracks either. “

Is it possible that the man who tried to amputate his own leg with dry ice was so ecstatic when he woke up from surgery because he was still under the influence of drugs? Apparently not.  A few years later when he was asked if he had any regrets about having his leg removed, his reply was:  “Only that I hadn’t done it sooner.”