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AM on the phone with Max Price, a graphic designer in Santa Fe, who has offered to talk to me about apotemnophilia. (He has asked me to change his name and the details of his life and history if I write about him, and I have.) Price is a charming man, articulate and well-read, and despite my initial uneasiness about calling him, I am enjoying our conversation. I had corresponded by e-mail with a number of wannabes, but had not managed to talk to any of them until now. The conversation has taken on an easy intellectual tone, more like a discussion between colleagues than an interview. Price is telling me about his efforts to get doctors to adopt some guidelines for deciding when a person with apotemnophilia should have surgery. I am tossing out ideas, trying out some of my thoughts, and I wonder aloud about a relationship between apotemnophilia and obsessive-compulsive disorder. I ask Price whether he feels that his desire is more like an obsession, a fantasy, or a wish. He says, "Well, it was definitely like an obsession. Until I cut my leg off, of course."

That brings me up short. I had been unaware that he had actually gone ahead with an amputation. "Ah," I say. I pause. Should I ask? I decide I should. "May I ask how you did it?" Price laughs. "It was kind of messy," he says. "I did it with a log splitter." He then explains, in a thoughtful, dispassionate manner, the details of his "accident" ten years ago -- the research he had done on anesthesia and wound control, how he had driven himself to the emergency room after partially amputating his limb, the efforts of the hospital surgeons to reattach it. He lived with the reattached leg for six months, he said, until medical complications finally helped him persuade another surgeon to amputate it.

I met Price through an Internet discussion listserv called "amputee-by-choice," one of the larger lists. At first I had simply prowled through the archives and listened to the ongoing conversation. I found many of the archived messages very creepy. Here were people exchanging photographs of hands with missing fingers; speculating about black-market amputations in Russia; debating the merits of industrial accidents, gunshot wounds, self-inflicted gangrene, chain-saw slips, dry ice, and cigar cutters as means of getting rid of their limbs and digits. When I introduced myself to the active electronic group, however, the discussion abruptly stopped, like the conversation in a village pub when a stranger walks in. For several days only a handful of new messages were posted. But I had invited wannabes to get in touch with me individually, telling them that I was a university professor working on apotemnophilia, and over the next few days a dozen or so people responded. Some, like Price, were insightful and articulate. Some had become mental-health professionals, in part as a way of trying to understand their desires. The few who had managed an amputation seemed (somewhat to my surprise) to have made peace with their desires. But others obviously needed help: they were obsessive, driven, consumed. Many seemed to have other psychiatric problems: clinical depression, obsessive-compulsive disorder, eating disorders, transvestism of a type that sounded anything but playful or transgressive. They did not trust psychiatrists. They did not want medication. They wanted to know if I could find them a surgeon. I felt like an ethnographer in a remote country, unfamiliar with the local customs, who the natives believe can help them. I began to understand how Robert Smith must have felt. I also began to wonder at the strength of a desire that would take people to such lengths.

By all accounts, the Internet has been revolutionary for wannabes. I can see why. It took me months to track down even a handful of scientific articles on the desire for amputation. It took about ten seconds to find dozens of Web sites devoted to the topic. Every one of the wannabes and devotees I have talked with about the Internet says that it has changed everything for them. "My palms were actually sweating the first time I typed 'amputee' into a search engine," one wannabe wrote to me. But the results were gratifying. "It was an epiphany," she wrote. When Krafft-Ebing was writing Psychopathia Sexualis, people with unusual desires could live their entire lives without knowing that there was anyone else in the world like them. Today all it takes is a computer terminal. On the Internet you can find a community to which you can listen or reveal yourself, and instant validation for your condition, whatever it may be. This same wannabe told me that she has never spoken about her desire for amputation with a friend, a family member, or a mental-health professional, and that she never will. Yet she is a frequent anonymous participant on the wannabe discussion listserv.

"The Internet was, for me, a validation experience," writes a wannabe who is also a transsexual. She says she found herself thinking less about amputation after logging on, because her desire was no longer such a dark secret. "When one is afraid of discovery, I think one thinks rather more about the secret in order to guard against accidental revelation." She also points out that the Internet helped her get information on how to lose her legs. Another wannabe, a therapist, says that discovering the Internet was a mixed blessing. "There was a huge hole to be filled," she told me, and the Internet began to fill it. To discover that she was not alone was wonderful -- but it also meant that a desire she had managed to push to the back of her mind now shoved its way to the front again. It occupied her conscious thoughts in a way that was uncomfortable. She says she knows wannabes who subscribe to as many as a dozen wannabe and devotee online mailing lists and spend hours every day wading through electronic messages.

VEN wannabes who describe their wish for amputations as a wish for completeness will often admit that there is a sexual undertone to the desire. "For me having one leg improves my own sexual image," one of my correspondents wrote. "It feels 'right,' the way I should always have been and for some reason in line with what I think my body ought to have been like." When I asked one prominent wannabe who also happens to be a psychologist if he experiences the wish to lose a limb as a matter of sex or a matter of identity, he disputed the very premise of the question. "You live sexuality," he told me. "I am a sexual being twenty-four hours a day." Even ordinary sexual desire is bound up with identity, as I was reminded by Michael First, a psychiatrist at Columbia University, who was the editor of the fourth edition of the American Psychiatric Association's Diagnostic and Statistical Manual. First is undertaking a study that will help determine whether apotemnophilia should be included in the fifth edition of the DSM. "Think of the fact that, in general, people tend to be more sexually attracted to members of their own racial group," he pointed out. What you are attracted to (or not attracted to) is part of who you are.

It is clear that for many wannabes, the sexual aspect of the desire is much less ambiguous than many wannabes and clinicians have publicly admitted. A man described seventeen years ago in the American Journal of Psychotherapy said that he first became aware of his attraction to amputees when he was eight years old. That was in the 1920s, when the fashion was for children to wear short pants. He remembered several boys who had wooden legs. "I became extremely aroused by it," he said. "Because such boys were not troubled by their mutilation and cheerfully, and with a certain ease, took part in all the street games, including football, I never felt any pity towards them." At first he nourished his desire by seeking out people with wooden legs, but as he grew older, the desire became self-sustaining. "It has been precisely in these last years that the desire has gotten stronger, so strong that I can no longer control it but am completely controlled by it." By the time he finally saw a psychotherapist, he was consumed by the desire. Isolated and lonely, he spent some of his time hobbling around his house on crutches, pretending to be an amputee, fantasizing about photographs of war victims. He was convinced that his happiness depended on getting an amputation. He desperately wanted his body to match his self-image: "Just as a transsexual is not happy with his own body but longs to have the body of another sex, in the same way I am not happy with my present body, but long for a peg-leg."

The comparison of limb amputation to sex-reassignment surgery comes up repeatedly in discussions of apotemnophilia, among patients and among clinicians. "Transsexuals want healthy parts of their body removed in order to adjust to their idealized body image, and so I think that was the connection for me," the psychiatrist Russell Reid stated in the BBC documentary Complete Obsession. "I saw that people wanted to have their limbs off with equally as much degree of obsession and need and urgency." The comparison is not hard to grasp. When I spoke with Michael First, he told me that his group was considering calling it "amputee identity disorder," a name with obvious parallels to the gender-identity disorder that is the diagnosis given to prospective transsexuals. The parallel extends to amputee pretenders, who, like cross-dressers, act out their fantasies by impersonating what they imagine themselves to be.

But gender-identity disorder is far more complicated than the "trapped in the wrong body" summary would suggest. For some patients seeking sex-reassignment surgery, the wish to live as a member of the opposite sex is itself a sexual desire. Ray Blanchard, a psychologist at the University of Toronto's Clarke Institute of Psychiatry, studied more than 200 men who were evaluated for sex-reassignment surgery. He found an intriguing difference between two groups: men who were homosexual and men who were heterosexual, bisexual, or asexual. The "woman trapped in a man's body" tag fit the homosexual group relatively well. As a rule, these men had no sexual fantasies about being a woman; only 15 percent said they were sexually excited by cross-dressing, for example. Their main sexual attraction was to other men.

Not so for the men in the other group: almost all were excited by fantasies of being a woman. Three quarters of them were sexually excited by cross-dressing. Blanchard coined the term "autogynephilia" -- "the propensity to be sexually aroused by the thought or image of oneself as a woman" -- as a way of designating this group. Note the suffix -philia. Blanchard thought that a man might be sexually excited by the fantasy of being a woman in more or less the same way that people with paraphilias are sexually excited by fantasies of wigs, shoes, handkerchiefs, or amputees. But here sexual desire is all about sexual identity -- the sexual fantasy is not about someone or something else but about yourself. Anne Lawrence, a transsexual physician and a champion of Blanchard's work, calls this group "men trapped in men's bodies."

If sexual desire, even paraphilic sexual desire, can be directed toward one's own identity, then perhaps it is a mistake to try to distinguish pure apotemnophilia from the kind that is contaminated with sexual desire. Reading Blanchard's work, I was reminded of a story that Peter Kramer tells in his introduction to Listening to Prozac (1993). Kramer describes a middle-aged architect named Sam who came to him with a prolonged depression set off by business troubles and the deaths of his parents. Sam was charming, unconventional, and a sexual nonconformist. He was having marital trouble. One of the conflicts in his marriage was his insistence that his wife watch hard-core pornographic videos with him, although she had little taste for them. Kramer prescribed Prozac for Sam's depression, and it worked. But one of the unexpected side-effects was that Sam lost his desire for hard-core porn. Not the desire for sex: his libido was undiminished. Only the desire for pornography went away.

Antidepressants like Prozac are good treatments for compulsive desires, and clinicians also use them for patients with paraphilias and sexual compulsions. What is interesting about Kramer's story, though, is the way in which Sam came to view his desire. Before treatment he had thought of it simply as part of who he was -- an independent, sexually liberated guy. Once it was gone, however, it seemed as if it had been a biologically driven obsession. "The style he had nurtured and defended for years now seemed not a part of him but an illness," Kramer writes. "What he had touted as independence of spirit was a biological tic." Does this suggest that sexual desire is simply a matter of biology? No. What it suggests is that an identity can be built around a desire. The person you have become may be a consequence of the things you desire. And this may be as true for apotemnophiles as it was for Sam, especially if their desires have been with them for as long as they can remember.

NE of the novels that occasionally pop up on devotee and wannabe book lists is Katherine Dunn's Geek Love (1989), the story of a carnival family conceived through the ingenuity of Al and Lil Binewski. Lil, the family matriarch, has ingested pesticides, radioactive materials, and a variety of drugs in order to produce children who are special: Iphigenia and Electra, piano-playing conjoined twins; Olympia, the bald albino hunchback dwarf who narrates the story; Chick, who has telekinetic powers; and Arturo the Aqua Boy, who was born with flippers instead of arms and legs. Arty, the undisputed star of the carnival, swims and frolics in an aquarium and then preaches dark, enigmatic sermons to his assembled admirers. "If I had arms and legs and hair like everybody else, do you think I'd be happy? NO! I would not!" he shouts to his audience. "Because then I'd worry did somebody love me! I'd have to look outside myself to find out what to think of myself!"

Crosscurrents: "Geek Studies," by Harvey Blume (July 13, 2000)
Hackers, freaks, outsiders, Homo Superior? Call them what you will, geeks are everywhere, and their stories help explain how science is shaping us.

Geek Love is an odd choice for a devotee or wannabe reading list. It is brutal in its mockery of amputee wannabes. Yet it makes sense of a darker side of American life that often goes unexplored in the mainstream media. The media generally treat the desire for body modification either as the well-worn terrain of fashion slaves and social strivers, who buy cosmetic surgery in an endless quest for beauty and perpetual youth, or as something bizarre and unexplainable, like genital mutilation or masochistic fetishes. Geek Love makes the desire for amputation plausible by setting it against the bland, cheery aesthetic of mainstream American beauty. Geek Love may mock amputee wannabes, but it does not mock them for their poor taste. The aesthetic sensibility of Geek Love comes straight out of a carnival sideshow. Its heroes are not "norms," as ordinary Americans are called in the book, but the freaks of the Binewski Carnival Fabulon. "We are masterpieces," Olympia says when asked if she would like to be a norm. "Why would I want to change us into assembly-line items? The only way you people can tell each other apart is by your clothes."

Geek Love may help us understand the cultural context that produces conditions like apotemnophilia. Why do certain psychopathologies arise, seemingly out of nowhere, in certain societies and during certain historical periods, and then disappear just as suddenly? Why did young men in late-nineteenth-century France begin lapsing into a fugue state, wandering the continent with no memory of their past, coming to themselves months later in Moscow or Algiers with no idea how they got there? What was it about America in the 1970s and 1980s that made it possible for thousands of Americans and their therapists to come to believe that two, ten, even dozens of personalities could be living in the same head? One does not have to imagine a cunning cult leader to envision alarming numbers of desperate people asking to have their limbs removed. One has only to imagine the right set of historical and cultural conditions.

Copyright © 2000 by The Atlantic Monthly Company. All rights reserved.
The Atlantic Monthly; December 2000; A New Way to Be Mad - 00.12 (Part Two); Volume 286, No. 6; page 72-84.