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 unbelievable.” 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?
• • •
Medical 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.”
How, then, as doctors, do we proceed? A surgical procedure exists that appears to alleviate the anguish of people who are truly suffering. In attempts to treat the condition, medications have proved ineffective, and psychotherapy, as the British psychiatrist Russell Reid has put it, “doesn’t make a scrap of difference in these people.” At present no treatment exists that we know of that is anywhere near as helpful as the surgery.
And yet. As doctors we have—all of us—sworn an oath to first do no harm. There is no more visceral sense of what constitutes harm than cutting off a healthy hand or severing two healthy legs from the torso they support. It is, Bayne and Levy assert, this visceral reaction—more than objective medical decision making—that has resulted in the unwillingness of any hospital to permit elective amputation.
Bayne and Levy acknowledge a “sense of repugnance that is evoked by the idea that a person might wish to rid themselves of an apparently healthy limb.” But they caution us against mistaking our repugnance for clinical—or even ethical—judgment: “Disgust responses can alert us to the possibility that the practices in question might be morally problematic, but they do not seem to be reliable indicators of moral transgression.”
Nonetheless, our repugnance leads us to call into question the autonomy of those who request such a procedure. And hence we refuse to do the thing they ask of us. We argue that they are requesting unethical and unnecessary medical treatment. We say that they are choosing elective disability over present health. We decide they do not have a right to the procedures they seek.
There are undeniable costs of disability that reach beyond the responsibility of the amputee. People without limbs require different levels of assistance to navigate the world, from simple crutches to sophisticated wheelchairs. Homes and cars must be modified. For reasons that are not completely understood, lower-limb amputees are at increased risk of cardiovascular disease. As a society we have determined that insurance companies and government programs should pay for medical care and supplies for conditions—such as emphysema from smoking cigarettes or joint replacements caused by obesity—that are arguably just as self-determined. But in the case of elective amputation, to whom should the costs of care fall?
The medical ethicist Art Caplan has argued that the disturbing nature of the request is in and of itself adequate evidence that
people who wish to be amputees should not be granted autonomy to amputate their limbs. “It’s absolute, utter lunacy to go along with a request to maim somebody,” he has said. “The cure is not to yield to the illness and conform to the obsession. And this is not just about ‘do no harm.’ It’s also about whether [patients] are competent to make a decision when they’re running around saying, ‘Chop my leg off.’”
However, no matter how upsetting the potential outcome, the legal concept of autonomy requires only that a person have an adequate understanding of the likely consequences of an action. A Jehovah’s Witness may refuse a blood transfusion if she can demonstrate that she fully understands she may die without one. And we permit patients to undertake any number of surgical procedures that carry with them real risks, real consequences, and not one iota of medical necessity or even benefit. In his piece in the Atlantic, Carl Elliott gets at this logical breach. He admits being swayed by the “simple, relentless logic to [the] requests for amputation. . . . ‘I am suffering,’ they tell me,” he writes. “‘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. . . . [But] 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, enlarge your breasts, redesign your labia, even . . . implant silicone horns in your forehead or split your tongue like a lizard’s. Why not amputate a limb?”
I am inclined to agree, but I can’t deny that I feel great discomfort in doing so. I, too, feel repugnance at the idea of someone’s choosing to cut off a limb. I fear that elective amputation may be a misguided treatment—treating a symptom without understanding the disease from which it comes. This is not a break across bone that causes the leg to give, not an atherosclerotic plaque that dislodges from its vessel wall to block the blood flow to the brain. This is not known cause and seen effect. It is mysterious origins and symptoms that are difficult to try to comprehend.
And yet so much of medicine—and hence so much of psychiatry—dwells in exactly this space. We do not understand why schizophrenic patients are plagued by visions and voices. We do not know why some deep depressions do not relent. We do not know which precise factors take root to give rise to the compulsions of BDD. But we offer treatment—which, to varying degrees, is not entirely benign—nonetheless. We try to alleviate suffering even if we don’t fully understand the mechanisms of what we prescribe. We do what we can. As the author of one journal article succinctly wrote of elective amputation for BIID, “No alternative means of relieving suffering exists.”
In order to determine whether there are any other treatments for BIID, we must have a better sense of the origin of the disorder. There have been countless theories put forth to attempt to explain how BIID could arise. They range from the psychodynamic (perhaps the patient lacked parental love as a child and longs to be an amputee because he subconsciously views amputees as people who are given attention and sympathy, which his childhood lacked) to the biologic (in the same way that sea cucumbers, reptiles, and spiders may sacrifice a limb when threatened, so, too, might human beings). For the most part, the theories strike me as very creative and not very plausible.
However, we may be on the cusp of beginning to understand more. There are similarities between BIID and some specific neurological conditions. Patients with somatoparaphrenia, whose name implies a dysjunction between body (somato-) and mind (-phrenia), have specific delusions. They believe that their own body parts are in fact parts of the bodies of others. These patients often confabulate, or invent stories, to shore up their assertions. A case report recently published in the Journal of Neurological Sciences, for example, described a woman who believed that her own hand was in fact that of her sister. She made up poems about seeking her own lost hand and even joked that her sister should pay for parking for her hand, since it was in the patient’s bed.
Asomatognosia (a-, meaning “no or without”; somato-, “body or bodily”; -gnosia, “knowledge”) is a lack of awareness of ownership of one’s limb. An asomatognostic patient may perceive his own leg to belong to the doctor, for instance, but unlike with somatoparaphrenic patients, once the asomatognostic’s error is pointed out to him, he is able to understand—even if only temporarily—that the limb is in fact his own.
In contrast to patients with somatoparaphrenia and asomatognosia, people with BIID are not delusional and they do recognize their limbs as their own, though they do not feel that it should be so. Nonetheless, this triad of conditions may well be linked through neuroanatomy. Somatoparaphrenia and asomatognosia often result from strokes that leave areas of the brain damaged. Many studies implicate dysfunction of a particular part of the brain—the parietal lobe—in these syndromes, and there is now some evidence that BIID may also arise from this neurological territory.
A 2011 paper by Anna Sedda in Neuropsychology Review cites an experiment conducted by Paul D. McGeoch at the University of California, San Diego. McGeoch and his colleagues tapped on the feet of a group of patients with BIID and those of a control group of healthy patients. Using magnetoencephalography—a means of measuring electrical currents in the brain—McGeoch et al. found that tapping healthy people’s feet on either side evoked electrical activity in the parietal lobe of the brain. However, when they tapped the feet of BIID patients on the side where they desired an amputation, that same electrical response was absent. McGeoch and his colleagues concluded that “BIID is caused by a failure to represent, partially or fully, one or more limbs in the right-superior parietal lobe.” In other words, the brain doesn’t sense that the “foreign” limbs are there in the same way it senses the limbs that feel more normally integrated into the person’s body, and identity. Or, as Corinne said, “I feel that my legs don’t belong to me and they shouldn’t be there.”
If BIID were truly demonstrated to have neurological origins, it might be perceived as more legitimate. Maybe then the symptoms would still strike us all as unbelievable, but the people who suffer from the disorder would no longer be seen that way. Like somatoparaphrenia or asomatognosia, whose associated stroke lesions can be confirmed by brain imaging, the desire to amputate a limb might then become yet another of the baffling ways in which our minds can misfire. Perhaps, as a culture that more easily legitimizes illnesses for which we believe there is a structural or chemical cause, we would then be more forgiving of the people trapped in this web of the brain’s discrepancies.
Still, what do we do for the woman who wants her legs off? For the man who wishes to amputate his hand? Does the fact that there may be a neurological origin for their symptoms make it more compelling to honor their requests because we now understand whence they come? Or does it make it more misguided—even abhorrent—to do so? Why would we operate on someone’s healthy leg to treat a disorder of the parietal lobe of her brain?
How do we, as doctors, define “help”? How do we define “harm”?
• • •
Two months after Deborah and I move with our three- and five-year-old children to a home near the ocean, a hurricane strikes. We have followed our experienced neighbors’ direction in the days before the storm: In came bird feeders and deck chairs, in came wind chimes, in came anything that could be sent blasting through a window. The houses on the water have large sheets of plywood nailed over their windows and doors. We buy water and candles and nonperishables. We check our flashlights. We hunker down. We wait.
The winds begin late Friday. Early Saturday morning, as I drive to the hospital to work, the sky is a dark gray-green and trees are already whipping angrily about. The radi
o has warned that it is an “astronomical high tide.” I don’t know what that means technically, but I see that it means water from the estuary is already lapping over the road. When I drive through the water, a thick fan of droplets launches out from either side of my car.
Nurses and patients and I all watch out the windows that morning as the heavy winds and rains come. I call Deborah every half hour. The winds are intense, she says. She and the kids are watching movies holed up in the basement. When do I think I could come home?
I round quickly and type notes that are briefer than usual. In the middle of writing my orders, the hospital goes black. A few seconds later, the emergency generator kicks in and the lights are back on, but a maintenance worker brings a cart full of flashlights up to the unit just in case. My pager goes off; I glance at the numbers on the screen and see it is the numeric code Deborah and I have that means “Call home.” I do. It rings and rings. I try her cell phone. She answers.
“The power is out,” she says. “And the wind is really howling.” She hesitates, then says softly, “Babe, come home.”
The winds reach more than eighty miles per hour in our neighborhood. Tree limbs lash against one another, then tear from their trunks and are flung by the wind across roads, across yards, across power lines. As I drive home, streets are blocked by massive fallen trees, their splintered stumps raised up into the sky as if in protest. Cables dangle from telephone poles onto sidewalks. As I cross a bridge over an inlet, the few boats that have not been taken in to safety before the storm are being tossed roughly by the ocean like little bobbing bath toys.
Falling Into the Fire: A Psychiatrist's Encounters with the Mind in Crisis Page 10