Falling Into the Fire: A Psychiatrist's Encounters with the Mind in Crisis (11 page)

“Is he any happier?” I asked his new doctor hopefully.

“I wouldn’t say I’ve ever seen him happy,” the doctor replied. “I’d say he’s absolutely miserable.”

•   •   •

I
t is a windless morning in late April, and the sun is shining brightly on Rhode Island’s Narragansett Bay. Our friend Welly is staying with us. Deborah has written a play that is up at our regional theater, and Welly has sweetly made the trip from California to see it the night before. I’ve recently taken up running—about a year in, after two decades of saying I ran only if chased—and Welly and I had planned to go for a jog along the town beach and through the quiet of the neighborhood after I dropped the kids off at school. But sometimes the ocean changes things. En route home from the school, there is a rise in the road that dead-ends in a panoramic view of the bay. Lighthouse on the right, bridges to the left, little clam boats anchored in the shallows between on a calm day like this one. The water glimmers sharply in the April light. When I get home, I propose to Welly that we forgo the run and paddle instead. Deborah and I house a borrowed plastic kayak in our garage, and my family members all pitched in at Christmas to give me a stand-up paddleboard, which I have used only once in the cold spring since. When I ask if she’d want to kayak beside me as I paddle, Welly does not hesitate:
Yes.

The water is frigid, and my body braces as I clamber onto my board, remembering my first outing, during which I fell three times and plunged up to my neck in the freezing bay. But soon I am steady and sure. My legs relax. My arms dip the paddle beneath the surface and, with a satisfying pull, propel me forward. Without discussing it we instinctively head toward the lighthouse. Welly is a sculptor, and as we glide, we chat about her work. She is, it turns out, thinking about the body. How we inhabit the architecture of the bodies we are given. How our bodies can be powerful and how they can be encumbrances. How they can feel inextricably linked to our identities yet how they can also misrepresent and betray us. I am making up some of this in retrospect, as I too often do about the jobs of my friends, falling captive to their ideas and suddenly following those ideas into thoughts that are more mine than theirs. Still, I think this is the gist of what we said to each other: The body is so innately known and yet still such a mystery. We talk about fidelity, and sex, and superpowers, and Underoos. We cover some territory.

As we’re paddling, I bring up BDD: how the mind can believe that the body betrays, when in fact it’s the mind that is the guilty party. We head deeper into the bay. It seems fitting that the water grows murkier beneath us. I tell her that I’ve been doing some thinking about another condition, too. This one has been called apotemnophilia—a not-altogether-accurate term for a condition in which otherwise-sane people want their healthy limbs cut off. From the Greek:
apo-,
“away from”;
temno-,
“to cut, hew, maim, wound, or sacrifice”;
-philia,
“amity, affection, friendship, fondness, liking.”
Having a fondness for cutting away.

I first became aware of people seeking elective amputations not in my clinical practice but when my friend Jay Baruch, an ER doc and fiction writer, sent me an article that the philosopher and bioethicist Carl Elliott had written on the subject in the
Atlantic.
“You will want to read this,” Jay wrote in the attached message. He knows me.

I say that the term “apotemnophilia” is not entirely accurate because the suffix “-philia” places these people within a diagnostic classification—the paraphilias—that by definition involves sexual attraction. The
OED
defines a paraphilia as a “sexual desire regarded as perverted or irregular, specifically attraction to unusual or abnormal sexual objects or practices.”
As it turns out, few patients who seek amputations do so for sexual reasons, and even those who acknowledge a sexual component to their desire to become amputees tend to cite another, nonsexual reason as the primary motivating factor. Therefore a new nomenclature has emerged for this condition. A less lovely term, but probably more diagnostically accurate and certainly less potentially pejorative: body integrity identity disorder (BIID).

A person with BIID knows that his limbs are healthy, but he is plagued by the persistent feeling that he is
meant
to be an amputee. He is also not psychotic or hearing voices telling him to cut off his limbs, like the young man winter camping who severed his hand with his hatchet.

In a BBC documentary on the subject entitled
Complete Obsession,
the people seeking amputation do not simply want surgery to remove a body part. They each have a highly specific sense as to where the cut should occur. They describe a sense of their bodies extending beyond where they feel they should. “It seems that my body stops midthigh on my right leg,” Gregg Furth, a strikingly ordinary-seeming New York psychoanalyst explains. “The desire that I have,” he says matter-of-factly, “is for an amputation above the knee on the right leg.”

A woman named Corinne in the film repeatedly draws a line with her hands at the crease between her pelvis and her thighs as she tries to explain where she feels her body naturally ends. “I feel that my legs don’t belong to me and they shouldn’t be there,” she says, expressing a longing to have them both cut off, “fairly high” up the thigh.

BIID is not yet included in the
Diagnostic and Statistical Manual of Mental Disorders
(
DSM
), though it was suggested for review and consideration for the most recent revision,
DSM-5.
The syndrome is not well understood and is probably quite rare. Yet, as a group, people with these urges are beginning to be studied, and occasionally descriptions appear of patients who may well have suffered from these symptoms in the past. In his meticulously researched book
From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era,
Edward Shorter recounts an incident in 1818 in which “Benjamin Brodie was invited to consult a ‘lady in the country on account of a disease of the knee.’ There were no obvious local findings,” Shorter writes. Brodie “recommended a course of treatment that failed, and the symptoms became aggravated. ‘She suffered more than ever, so that she became anxious to undergo the amputation of the limb.’ Brodie advised against it. ‘However, her wishes remained unaltered; and two surgeons of eminence in the country, yielding to her entreaties, performed the operation.’ On completion of the amputation they were surprised to see that they had removed a normal joint.”

Unlike Eddie, and other patients who suffer from body dysmorphic disorder, people with BIID do not want to be rid of their limbs because they perceive them to be hideous, diseased, or faulty in any way. Rather, the limbs feel alien, as if they don’t belong. With intact bodies the patients, paradoxically, do not feel whole.

The way in which personal identity seems inextricably linked to the desire for amputation has led to comparisons between BIID and gender dysphoria. In gender dysphoria (previously classified psychiatrically as gender identity disorder and in lay terminology as transsexualism), people experience their gender as different from the one that their physical sex characteristics typically indicate. These syndromes share a disconnect between the fundamental way in which a person feels his identity ought to be and the way that his body
is.
Similarly, people in both groups are subjected to an intense degree of discomfort in their bodies, which may drive them to consider extreme measures to rectify this incongruity.

Gregg Furth and Corinne, like others with BIID, sought out surgeons willing to amputate their healthy legs. Dr. Robert Smith, in Scotland, had performed two such procedures in 2000, after which his hospital intervened and forbade him to do any others. In a news conference, Smith told reporters that the elective amputation was “the most satisfying operation I have ever performed.” Having met with the patients and having determined they were both sane and tormented, he insisted, “I have no doubt that what I was doing was the correct thing for those patients.” No hospital now permits the elective amputation of healthy limbs.

As a result, people with BIID have turned to their own desperate attempts to become amputees. In 1999 a seventy-nine-year-old man named Philip Bondy paid ten thousand dollars to John Ronald Brown, a surgeon who went to Mexico after he’d had his medical license revoked in the United States for performing black-market sex-change operations in hotel rooms and garages. In return for the money, the surgeon cut off Bondy’s healthy leg. Following the surgery Bondy was sent to his hotel room, where he died of gangrene.

Others determined to have limbs amputated have resorted to gruesome tactics. Arms and legs have been sawn off by chain saws and severed by log splitters or homemade guillotines. People have stretched limbs over tracks in front of oncoming trains. They have packed arms or legs in dry ice for hours and then gone to the hospital, forcing doctors to amputate their irreparably frozen limbs. They have shot hands off with shotguns; they have reached into wood chippers. They deliberately infect wounds; they attempt to burn their limbs beyond repair. A case report in the
Journal of Hand Surgery
described a fifty-one-year-old government employee who first cut his hand off with an axe and then “proceeded to mutilate the severed part with the axe in order to prevent any possibility of replantation.” As a means both of providing context for such an injury and of educating doctors as to when they might suspect such a condition in one of their patients, the article continues, “This persistent discomfort and obsession to have a limb amputated can become almost unbearable, and a history of repeated, unexplained injuries to the same segment of the body is common among these patients.”

“I feel my legs don’t belong to me and they shouldn’t be there,” Corinne says in
Complete Obsession.
“There is just an overwhelming sense of despair sometimes. I don’t want to die, but there are times I don’t want to keep living in a body that doesn’t feel like mine.”

As with Julie, who endured unanesthetized dental work rather than risk damage to her nose, some people with BIID would rather endure tremendously painful amputation—and the subsequent difficulty of life as an amputee—than continue to live tormented by parts attached to their bodies that feel as if they don’t belong.

After I have explained this to Welly as we paddle, this sense of one’s own body as alien, the urge of
apo-temno-,
“to maim, to cut away,” I say, “And here is the unbelievable part . . .”

Welly laughs. “
Here
is the unbelievable part?” she asks. “Like what came before this is all run-of-the-mill?”

I start giggling, too, but then I lose my balance, so I try to force the look on my face from a silly grin into a stern expression in an attempt to stop laughing. I am terrible at stern expressions. My utter failure at this makes us laugh even harder, and I am so unsteady that I have to kneel on the board to keep from plunging headlong into the deep waters. When we compose ourselves, I paddle beside Welly like that for a while, kneeling. It’s quieter somehow. We are on the same level.

“Okay,” I say. “Let me rephrase. Here is where it gets even more
un
believable.” She nods, listening. “Surgery makes them better.”

“Wait . . . what?” Welly stammers. “What do you
mean
?”

“Yeah,” I say. “The people who amputate their limbs feel better. It’s not like body dysmorphic disorder, where a delusional preoccupation continues. For years and years, these people feel like they have an extra limb that doesn’t belong to them. They feel like they’re meant to be amputees. And once they finally are, they feel relief. Resolution. Cured.”

Welly gapes, then starts to nod, and eventually we keep talking. We return to possible parallels between elective amputation and gender-reassignment surgery, how maybe surgery in both instances is the exterior righting of some kind of long-endured internal wrong.

I stand back up on the paddleboard. I stand on my own strong legs, and I feel my arms at work as they pull the paddle through the water. The spring sun glints off of my skin, and I do not worry how I look. I feel the rays and how they warm me. My body—all of it: my limbs, my mind, my sex—it is who I am. Its imperfections are mine, too, and they do not consume me. By what alignment of neurochemistry and circumstance have I been granted that solid balance?

•   •   •

M
edical research is beginning to explore how best to treat patients with BIID. Though they acknowledge that the evidence available is “scant,” Tim Bayne and Neil Levy confirm in a paper in the
Journal of Applied Philosophy
that those “who succeed in procuring an amputation seem to experience a significant and lasting increase in well-being” and “do not develop the desire for additional amputations.”

In
Whole,
a 2003 documentary about patients with BIID, the people who have undergone amputation express precisely these kinds of sentiments. A man who packed his leg in dry ice, inducing severe frostbite that necessitated amputation, explained, “The feeling overall is of rebirth. Instantaneously, from that point, when I woke from the anesthetic, all my torment had disappeared.” Another man, who shot his leg off with a shotgun, saw no alternative course of action. “What I did,” he explains, “was absolutely imperative. The alternative that day was suicide. . . . My only regret was that it didn’t happen sooner.” A third man, one of Dr. Robert Smith’s elective-surgical amputees, describes himself postsurgery as “normal now . . . relaxed, comfortable, at ease. [I] only get stressed out by things at work and other pressures like everybody else. I don’t have this additional big burden sitting on my shoulders.  . . . By taking a leg away, I’ve actually been made more complete. I’m actually more of a person than I was before.”

A recently published paper by Rianne Blom and her colleagues at the University of Amsterdam found similar results from a questionnaire she administered to 54 individuals with BIID. “Actual amputation of the limb was effective in all 7 cases who had surgical treatment,” she writes. “Amputation of the healthy body part appears to result in remission of BIID and an impressive improvement of quality of life.” One responder inadvertently revealed as much when he or she wrote, “I’m wondering if I am eligible to participate in this study, because since my amputation I do not have BIID feelings anymore.”