The Man Who Wasn't There: Investigations into the Strange New Science of the Self (11 page)

It’s crucial to emphasize that these findings are
correlations
—they don’t prove that the neural anomalies are the
cause
of BIID. It’s a caveat to keep in mind throughout this book. There is a tendency within neuroscience toward neurobiological reductionism, especially in the study of disorders, by viewing the brain-mind relationship as a one-way street, with the brain influencing mental activity, and not the other way around. fMRI or PET scans usually tell us about the relative change in activity in specific brain regions in a person with some disorder when compared with healthy controls. But except in clear-cut cases of neurological damage, such scans give us correlations between brain activity and a person’s condition; they don’t definitively establish whether the observed anatomical and functional aberrations seen in brain scans came first and caused someone’s condition (such as BIID) or whether ceaseless mental activity (thinking obsessively that “this leg is not mine,” for example) led to the changes in the brain.

Then there is the question of how body states and body-matrix networks translate into a sense of self. And for BIID patients, how does a skewed body map lead to the desire for amputation?

Philosopher Thomas Metzinger provides an insight into why someone with BIID might disown a body part, and it has to do with his ideas about the self. “‘Owning’ your body, its sensations, and its various parts is fundamental to the feeling of being someone,” Metzinger wrote in his book
The Ego Tunnel
. In his theory, the brain creates a model, a representation of the environment in which the body exists. Embedded within this model of the world is a model of the self: a representation of the organism itself, which is used to “
regulate its interaction with the environment” and to maintain the organism in an optimal state of functioning.

That the brain must create such models follows from a classic 1970 paper that showed mathematically that “
any regulator . . . must model what it regulates.” So, if the brain is trying to regulate the body, it must model the body, and this is the self-model.

Crucially, only a subset of this self-model enters conscious awareness. This is what Metzinger calls the phenomenal self-model (PSM). The contents of this model are what we are conscious of, including bodily sensations, emotions, and thoughts. Put another way, the content of the PSM is our ego, our identity as subjectively experienced. At any given moment, there might be body states that are part of the self-model but not part of the PSM, in which case we would not be conscious or subjectively aware of those body states. And the contents of these models, whether of the world, the self, or the phenomenal self, are constantly changing. Also, what separates the contents of the world-model from the contents of the PSM is
the property of
mineness
: objects in the world-model don’t feel like mine, while those in the PSM, whatever they are, by definition feel like they belong to me.

If Metzinger is right, then before the rubber-hand illusion sets in, the lifeless hand that one is seeing is part of one’s world-model, but not of the PSM. So, it lacks a sense of belonging to
me
. We come under the grip of the illusion because the experiment modifies our PSM: our brains replace the representation of the real hand with a representation of the rubber hand, which is now embedded in our phenomenal self-model. Since anything in the PSM has the subjective property of
mineness
, we feel as if the rubber hand belongs to us. In BIID, it’s likely that a limb or some other body part is misrepresented or underrepresented in the PSM. Lacking the property of mineness, it is disowned (it’s intriguing to think that Cotard’s syndrome could also be due to a messed-up phenomenal self-model).

Metzinger’s ideas give us a clue to why someone with BIID might want to amputate a limb that doesn’t feel like it belongs. My self—as defined by the content of the PSM—is not just my subjective identity; it is also the basis for the boundary between what’s mine and everything else, between me and not-me. “It’s a tool and a weapon,” said Metzinger, when we spoke on the telephone. “It’s something that evolved to constantly preserve and sustain and defend the integrity of the overall organism, and that includes drawing a line between me and not-me on very many different functional levels. If there is a misrepresentation in the brain that tells you this is not your limb, it follows that this will be a permanently alarming situation.”

McGeoch, Ramachandran, and their colleagues showed this in
a simple and elegant experiment. They studied two people who wanted voluntary amputations: a twenty-nine-year-old man who desired an amputation below his right knee; and a sixty-three-year-old man who wanted amputations below his left knee and below his right thigh. One of the curious things about BIID is that most sufferers can precisely delineate their limb into the part that feels their own and the part that doesn’t. And this separation is stable over time (suggesting that the condition is neurological rather than psychological, according to Ramachandran’s team). In their study, the researchers recorded skin conductance response (SCR) using electrodes attached to the subjects’ hands, when they were pricked with a pin either below or above the “
desired line of amputation.”

SCR cannot be willfully controlled. Most people, when they are touched or when they hear a noise or when they perceive emotionally salient stimuli, will show an increased SCR. Ramachandran’s study showed that when their BIID subjects were pricked on the part of the limb that they felt was foreign, the SCR was two to three times greater
than when the pinprick was on the normal part of the limb. One interpretation of this data is that the pinprick on the part they wanted amputated was felt as more threatening.

Brugger’s team also found something similar. When BIID patients were tapped simultaneously on both the foreign-feeling and normal parts of their limbs, they reported feeling the taps on the rejected parts earlier:
their brains were prioritizing these tactile stimuli.

Both studies suggest a hyperawareness of the disowned parts of limbs. It’s as if the brain of BIID sufferers is paying extra attention to body parts that feel alien. “It’s like an active foreign part in their bodies, which attracts attention, therefore it is prioritized in their temporal lobe,” said Brugger. “It makes sense, in retrospect.”

It is, however, deeply ironic that the foreign-feeling body part would be attracting more attention than the rest of the body. Contrast BIID with a condition called somatoparaphrenia, in which people often deny ownership of a leg or arm, or even an entire side of their body. The delusion often arises because the person has suffered paralysis of one side of the body and is also sometimes unaware of the paralysis. But in BIID, there is no such functional problem with the body part. So, the brain’s increased attention to it makes sense only if you accept that the leg or the arm is not part of the bodily self constructed by the brain. BIID is also telling us that even though we can lose the sense of ownership over body parts, there is still an “I”—the self-as-subject—that experiences the lack of
mineness
of a limb. It’s unfortunate that the estranged body part becomes an object of obsession, as would anything foreign that clung to one’s body, an obsession that eventually leads some to amputation.

Visceral negative reactions are common when people first hear about voluntary amputations. About fifteen years ago, when media attention to BIID happened to be at a peak, bioethicist Arthur Caplan, then of the University of Pennsylvania, called it “
absolute, utter lunacy to go along with a request to maim somebody.”

More than a decade later, there is still a debate raging in the pages of academic journals about the ethics of voluntary amputations. Is it analogous to body-modifying cosmetic surgeries, such as breast reduction, as BIID sufferers themselves have argued? Some bioethicists say no, since amputation entails a permanent disability. Others point out that cosmetic surgery can also be disabling, as when breast reduction results in the inability to breast-feed. Some have compared BIID to anorexia nervosa as the best, if a somewhat imperfect, analogy, because both involve body-image discrepancies. According to this line of argument, amputations should be denied just as anorexics are sometimes fed against their will. The retort to this is that anorexics are clearly delusional about their bodies, as objective measures can show their body weight to be dangerously low. There is no accepted objective measure of a BIID patient’s internal feeling of bodily mismatch.

The debate continues, partly because BIID is not a medically recognized disorder. There’s also a lack of data about how voluntary amputations affect the lives of patients. Yet David’s surgeon, an orthopedic specialist, has made up his mind.

Dr. Lee—which is not his real name—is in his mid-forties, friendly, with an easy laugh. He seems at peace with his secret practice. When a BIID patient first approached him six years ago, he’d had his doubts, so he researched BIID as thoroughly as he could and communicated with the patient for several months before deciding to do the
amputation. He knew he would be risking his medical license. A religious man, he and his wife even prayed on it, eventually putting some of the onus of the decision on higher powers. “
God, if you think this is not right, then put some hindrance
,” he remembers thinking. “
I don’t know what it is, but put some hindrance
.” So far, things have gone smoothly, and he’s taking that as divine sanction.

Dr. Lee is convinced that what he does is ethical. He has no doubt that BIID patients are suffering deeply. On the question of whether to amputate to relieve their suffering, he invokes the World Health Organization’s definition of health: a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity. As far as he can tell, people with BIID are not healthy; there is no nonsurgical cure in sight and no evidence that psychotherapy helps. Michael First, in his 2005 survey of fifty-two BIID patients, reported that 65 percent of them had seen psychotherapists, but it had no effect on their desire for amputation (though it’s also true that half of them did not tell their psychotherapists about such desires).

Of course, there’s also the question of whether BIID sufferers are psychotic or delusional. Again, the scientists who have studied these individuals say that they are neither. Dr. Lee insisted that his patients have not been psychotic (and as we’ll see in the next chapter, psychosis in schizophrenia involves a profound alteration of one’s experienced reality; no one with BIID I talked to said this was the case for them).

On the contrary, Dr. Lee said, many of his patients were high-functioning individuals, including a pilot, an architect, and a doctor. And for Dr. Lee the proof that BIID is a real condition can be found in the near-instant change he has observed in his patients after the surgery, which contrasts strongly with those who have to undergo
involuntary amputations because of, say, a car accident. Involuntary amputations are traumatic to even the strongest of people, and those people can become severely depressed as a result. “Then you have these BIID people who crutch unbelievably after the first day after surgery.”

Paul McGeoch, who has studied his fair share of BIID patients, has the same opinion. “They are universally happy. I have never heard of one who is not pleased to have a limb amputated,” he said. But as convinced as Dr. Lee seemed, he repeatedly stressed to me: “I’ll stop the moment I get my first patient who feels remorseful about the surgery. So far, none have.”

If BIID were ever to be legitimized and voluntary amputations to become legal, Dr. Lee knows that his clandestine program would end. “I’d be so glad if ever that happened. I won’t have to deal with the tension anymore,” he said. “Right now, I’m torn between the tension of doing the surgery, and the tension of helping them.” Then, in a momentary lapse of caution, he admitted that he would miss the surgeries: “Maybe that’s the weirdo in me.”

Would he miss the money, which amounts to about $20,000 per operation? The answer was an emphatic no. He said he made the same amount doing legal surgeries for foreign health tourists and that he had a flourishing local practice. He pointed out that his fee covered everything: hospital costs, payments to his fellow surgeons, even some meals and sightseeing for his patients. “You are not paying for the surgery. You are paying for all the risks involved,” he said. “You have to keep everybody happy. We are not talking peanuts here. If this gets out, we all lose our licenses.” He said it was a risk he’s willing to take, as long as his patients are happy.