A New Way to Be Mad

The phenomenon is not as rare as one might think: healthy people deliberately setting out to rid themselves of one or more of their limbs, with or without a surgeon's help. Why do pathologies sometimes arise as if from nowhere? Can the mere description of a condition make it contagious?
The Elusiveness of "Help"

I will confess that my opinions about amputation as a treatment have shifted since I began writing this piece. My initial thoughts were not unlike those of a magazine editor I approached about writing it, who replied, "Thanks. This is definitely the most revolting query I've seen for quite some time." Yet there is a simple, relentless logic to these people's requests for amputation. "I am suffering," they tell me. "I have nowhere else to turn." They realize that life as an amputee will not be easy. They understand the problems they will have with mobility, with work, with their social lives; they realize they will have to make countless adjustments just to get through the day. They are willing to pay their own way. Their bodies belong to them, they tell me. The choice should be theirs. What is worse: to live without a leg or to live with an obsession that controls your life? For at least some of them, the choice is clear—which is why they are talking about chain saws and shotguns and railroad tracks.

And to be honest, haven't surgeons made the human body fair game? You can pay a surgeon to suck fat from your thighs, lengthen your penis, augment your breasts, redesign your labia, even (if you are a performance artist) implant silicone horns in your forehead or split your tongue like a lizard's. Why not amputate a limb? At least Robert Smith's motivation was to relieve his patients' suffering.

It is exactly this history, however, that makes me worry about a surgical "cure" for apotemnophilia. Psychiatry and surgery have had an extraordinary and very often destructive collaboration over the past seventy-five years or so: clitoridectomy for excessive masturbation, cosmetic surgery as a treatment for an "inferiority complex," intersex surgery for infants born with ambiguous genitalia, and—most notorious—the frontal lobotomy. It is a collaboration with few unequivocal successes. Yet surgery continues to avoid the kind of ethical and regulatory oversight that has become routine for most areas of medicine. If the proposed cure for apotemnophilia were a new drug, it would have to go through a rigorous process of regulatory oversight. Investigators would be required to design controlled clinical trials, develop strict eligibility criteria, recruit subjects, get the trials approved by the Institutional Review Board, collect vast amounts of data showing that the drug was safe and effective, and then submit their findings to the U.S. Food and Drug Administration. But this kind of oversight is not required for new, unorthodox surgical procedures. (Nor, for that matter, is it required for new psychotherapies.) New surgical procedures are treated not like experimental procedures but like "innovative therapies," for which ethical oversight is much less uniform.

The fact is that nobody really understands apotemnophilia. Nobody understands the pathophysiology; nobody knows whether there is an alternative to surgery; and nobody has any reliable data on how well surgery might work. Many people seeking amputations are desperate and vulnerable to exploitation. "I am in a constant state of inner rage," one wannabe wrote to me. "I am willing to take that risk of death to achieve the needed amputation. My life inside is just too hard to continue as is." These people need help, but when the therapy in question is irreversible and disabling, it is not at all clear what that help should be. Many wannabes are convinced that amputation is the only possible solution to their problems, yet they have never seen a psychiatrist or a psychologist, have never tried medication, have never read a scientific paper about their problems. More than a few of them have never even spoken face to face with another human being about their desires. All they have is the Internet, and their own troubled lives, and the place where those two things intersect. "I used to pretend as a child that my body was 'normal' which, to me, meant short, rounded thighs," one wannabe wrote to me in an e-mail. "As a Psychology major, I have analyzed and reanalyzed, and re-reanalyzed just why I want this. I have no clear idea."

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Carl Elliott teaches at the Center for Bioethics at the University of Minnesota. He is the author of A Philosophical Disease (1998) and a co-editor of The Last Physician: Walker Percy and the Moral Life of Medicine (1999).

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