“In spite of my best and severest endeavors, the wound kept getting worse and worse; the truth was, sir, it was as ugly gaping wound as surgeon ever saw; more than two feet and several inches long. In short, it grew black; I knew what was threatened, and off it came”( Moby Dick 367). (Painting, Otto Dix)
Having learned that my posts on BIID (Body Integrity Identity Disorder) are included on a number of German websites devoted to this condition, I thought it might be time for another essay on the topic.
This is dedicated to Sean, that it might bring him relief from his obsession.
“We support the idea that BIID can be considered as a culture-bound syndrome, a contemporary frame for psychological suffering. We think that BIID does not have neither intrinsic nor unequivocal psychopathological meaning. It is a ‘new way to be mad’ (Elliott), a common pathway for the expression of very different kinds of psychological suffering.”
Baubet T, Gal B, Dendoncker-Viry S, Masquelet AC, Gatt MT, Moro MR.
Service de Psychopathologie, CHU Avicenne (AP-HP) et EA 3413, Université Paris 13, Bobigny, France.
Let’s begin with the notion that BIID is a “Culture-bound syndrome.” Is it really, as Carl Elliott suggests, a “new way to be mad”? Cultural expressions, like literature and painting (the Cubist aesthetic), suggest otherwise. Consider the character of Ahab from Herman Melville’s, Moby Dick (1851). He is both a metaphor for the inscrutability of human nature, and the concretization of a character questing for non-existence, erasure, and addition by subtraction.
“The White Whale swam before him as the monomaniac incarnation of all those malicious agencies which some deep men feel eating in them, till they are left living on with half a heart and half a lung. That intangible malignity which has been from the beginning; to whose dominion even the modern Christians ascribe one-half of the worlds; which the ancient Ophites of the east reverenced in their statue devil; -- Ahab did not fall down and worship it like them; but deliriously transferring its idea to the abhorred white whale, he pitted himself, all mutilated, against it. All that most maddens and torments; all that stirs up the lees of things; all truth with malice in it; all that cracks the sinews and cakes the brain; all the subtle demonisms of life and thought; all evil, to crazy Ahab, were visibly personified, and made practically assailable in Moby-Dick. He piled upon the whale's white hump the sum of all the general rage and hate felt by his whole race from Adam down; and then, as if his chest had been a mortar, he burst his hot heart's shell upon it”(160).
Ahab’s is no “new way to get mad.” The compulsion to rid oneself of a body part or function, as in the case of blindness, deafness, and paralysis is characterized by a feeling of mismatch between the internal feeling of how one’s body should be and the physical reality of how it actually is. This condition is marked by an obsessive longing for the amputation of a limb -- tailored to very specific dimensions. While neither psychotic nor delusional, they manifest a profound detestation of the offending limb.
Note that Ahab rails against “those malicious agencies which some deep men feel eating in them, till they are left living on with half a heart and half a lung,” and, “transferring its idea [intangible malignity] to the abhorred white whale, he pitted himself, all mutilated, against it,” a leviathan he considers to be the embodiment of what we can’t know. Ahab’s lesson is that our failure to understand the machinations of the human heart and psyche was no less evident then than it is now.
That romance is culturally ascribed to emotional rather than logical ruminations lessens it not a whit in terms of its affect on our contentment. And so what if BIID is a “neuropsychological disturbance,” as Sabine Muller suggests (American Journal of Bioethics Vol. 9, #1 1/09). Should this lead to a policy where all amputations are “contraindicated and must be evaluated as bodily injuries of mentally disordered patients.” As if this assessment isn’t sterile enough, Muller goes on to say that, “instead of only curing the symptom, a causal therapy should be developed to integrate the alien limb into the body image.” Muller’s point lies at the crux of the dilemma for medical ethicists. When the cornerstone of democratic government, individual autonomy (in terms of BIID, the right to choose one’s body modifications), conflicts with the idea that BIID is the result of a brain disorder, we have a situation where the physician is ethically bound to dismiss the autonomy argument on the grounds that the patient is incapable of having “insight into the illness,” thus demonstrating a “specific lack of autonomy”(Muller 2009). 
While the common example BIID advocate’s cite is the comparison with transsexuals who surgically alter their sexual identity, I would submit a better analogy. If we note that Muller’s symptom/cause model assumes a discrete binary of biology and culture that has increasingly come into question, it seems clear that the BIID cohort cannot be reduced to a group of “mentally disordered patients.” In other words, just as culture can be as much a cause as a symptom in one’s choice of sexual identity; and homosexuality was found to be neither a choice nor a disease; so too, is it a mistake to think that “causal approaches” to BIID can affect any symptomatic change. Just as knowing the biological reasons for homosexuality has no affect on the dynamics of gay desire, defining BIID as a condition marked by dysfunction in the superior parietal lobe of the brain, leading to a “deranged representation of the body concerned with ownership and deficits of multi-sensory integration, (Vallar G, Ronchi R.Department of Psychology, University of Milano-Bicocca)” offers little solace to those who experience the demands of BIID.
I use the word “demands” very pointedly here. Hence the following quotes, one fictional and one testimonial. The first is from Ahab:
“What is it, what nameless, inscrutable, unearthly thing it is; what cozening, hidden lord and master, and cruel emperor commands me; that against all natural lovings and longings, I so keep pushing, and crowding and jamming myself on all the time; recklessly making me ready to do what in my own proper, natural heart, I durst not so much dare? “(Moby Dick 445)
Now a post on a BIID blog:
Written by Sean on Monday, August 18, 2008
“I’ve been having a really rough time over the last couple months. Depression hitting harder than usual, and BIID being its usual fierce self. I was not hardy enough, I was not able to duck under cover and let this storm pass. I crashed. Hard. I went to my GP and asked for help. We discussed things and I agreed to try a course of anti-depressants and to go see a psychiatrist.”
Note Melville’s description of an “unearthly” desire that “commands him against all natural lovings and longings,” and Sean’s personification of BIID as a “fierce self.” It may be that the dawn of the modern world Ahab represents, and the now of the postmodern culture Sean occupies, share the common conceit that the unified self is a myth, and that a de-centered, fragmented existence is the closest approximation of that illusory wholeness we so desire. So it may be that the absence Sean longs for, that “fierce self,” provides a sign of identity in the one-dimensional and faceless crowd. Paraplegia is the marker of difference in an uncaring world. The cultural underpinnings of BIID, then, should be of no less consideration than the biological factors (disturbances in the right parietal cortex) that make up the BIID conundrum.
Nicholas Wade writes, “A new force is now coming into focus. It is one with a surprising implication — that for the last 20,000 years or so, people have inadvertently been shaping their own evolution. The force is human culture, broadly defined as any learned behavior….Culture itself seems to be a powerful force of natural selection. People adapt genetically to sustained cultural changes….This raises the possibility that human evolution has been accelerating in the recent past under the impact of rapid shifts in culture…. human evolution may be accelerating as people adapt to pressures of their own creation”(NYTimes 3/2/10).
The acceleration of change and its philosophical counter that the more things change the more they stay the same offer the paradoxical conclusion that the “rapidly shifting” culture has brought about “pressures of our own creation” that are not entirely new.
Regarding these “pressure of our own creation
,” what Ahab and Sean have in common is an existential despair about not only who, but what, they are. And this has to do with the psychic disconnect between the fluidity of cultural change and the stasis of “pressures of our own creation.” While the historical context of Ahab’s and Sean’s stories may be different, the psychic pressure of being-in-the-world is the same for both of them. Ahab’s monomaniacal quest for an unattainable goal is analogous to Sean’s so-called “monothematic delusion” that paralysis will make him whole. Their seemingly absurd strivings and psychic anguish, however unavoidable they may be as adversities that are part and parcel of everyday life, differ in degree if not in kind from the psychological suffering we all experience in various ways. As Oze Parrot points out, “When an individual is confronted with the condition [psychological suffering] he must be mindful of the fact that dwelling on the event may lead to a permanent mental disorder.”
I agree that BIID is a symptom of modern life, but that also, as Dr. Chris Ryan argues in, “Out on a Limb”(2008): “Amputation of a healthy limb is an ethically defensible treatment option in BIID and should be offered in some circumstances, but only after clarification of the diagnosis and consideration of other treatment options.” What these options might be is uncertain, but Ryan shows a rare moral courage in advising amputations “in some circumstances.”
As Sean puts it, ‘Fuck ethics, I say. In this case, the ethics are there to protect the medical people more than the patient. We know what the solution is. It is not to take more medication that only give nasty side-effects, not results.”
Sean’s story also flies in the face of the idea that there is a left-sided bias at work in BIID cases. He writes:
“There are other needs than the need for an amputation that fall under that term: some people need to be paralysed, others blind. Others yet need to be deaf….It is far from the majority of people with BIID who get their impairment. It is difficult and dangerous to get an amputation, Even more so to cause a spinal cord injury. Because the medical community is unwilling to accept surgery as a viable treatment option for BIID, we are left to having to resort to self-injury, which doesn’t always end well.”
You’ll recall I’ve written before about dry ice, shotguns, and railroad tracks.
“There is no instruction manual for those who want to remove their own limbs, but I always knew I would do it….First I needed to freeze and kill the leg so that surgeons would amputate it afterwards. I ordered dry ice pellets from a company near Edinburgh….I bought 40kg – it evaporates very quickly, so you have to buy a great deal. I put on layers of pantyhose, because you do not want it sticking to you, spread it in the back of the car and sat with my leg immersed in it for one hour. The pain was indescribable: it hurt so much I passed out a few times…. I had not damaged the leg enough to have it amputated in hospital, so the 
following September I made a second attempt, and this time I stayed in the dry ice for four hours. I was sat with my legs across the back seat of the car, the windows wide open and the footwell filled with dry ice, covering the leg and topping it up as it evaporated… The leg was hard as stone. I had third-degree burns and the pain was horrible. But it wasn’t enough: I now know you need a minimum of six hours to kill a leg completely….My husband drove me to hospital, but they refused to amputate. Incredibly, they said the wounds were superficial and that I would be walking within a few months. I really thought this time that the surgeon would give me the amputation I needed, but they seemed resolute… I thought I was going to have to make a third attempt. But this time I would have to do it differently, perhaps put my leg under a train so they would have nothing more than a stump to stitch up… After nine months of agony, I told my General Practitioner that if I didn’t see someone fast, I would take off the leg myself. Within two days I had an appointment with a different surgeon.The amputation, last June, went without a problem, and my left leg was removed from just above the knee. I felt better as soon as I came round. In fact, I felt so good in hospital that I was ready to go home straight away had they let me. My bag was packed and I was ready to leave. The Tuesday after the operation I drove myself home in an automatic car, and the next day I was almost back to my normal life.”
-- Susan Smith – pseudonym – as told to John Cantlie, “The Guardian 2007
But what about when the desire is for paralysis, what then?
Here’s another excerpt from Sean’s blog:
“In the end, he [the doctor]said that he didn’t think psychiatry could help BIID. I was not surprised to hear that. He asked if the ultimate solution would be for me to get a spinal cord transection. I said yes. I further said that I’d be happy with an injection of alcohol, which would be a semi-permanent thing. That is, after 8 months to a year, function would come (mostly?) back. He seemed intrigued at the idea, thinking that if anything had a chance to get through an ethics committee approval, this would probably be it, within the constraints of a study. He was prompt to say that he had no idea who would give such approval though.”
On 19 August, 2008, Gordo said:
“The alcohol thing sounds interesting. If it was available, I’d definitely go for that. Even if some function eventually returned (ie. 50% of the function I had before), I’d still welcome it. 50% towards where I need to be is better than 0%.”
And what about the “alcohol thing”?
“In 1994, Heiss et al reported two patients with spinal cord compression who improved appreciably after direct percutaneous injection of alcohol into vertebral body hemangiomas [hemangioma is a benign tumor that can involve the body of the vertebra]…. An important caveat….A treated vertebral body underwent collapse subsequent to ethanol ablation….This is likely attributable to the osteonecrosis that can occur with injection of alcohol. It may be that those patients treated with larger volumes of alcohol may be more prone to developing this complication, as osteonecrosis may be more likely to develop in those situations.”(Peter L. Munk, M.Da and Tom R. Marotta, M.D., University of British Columbia, Vancouver, BC)
And finally this from by Marc E, Agronin M.D., regarding the easy propensity physicians often have to misread their patients wishes and intentions: “As she spoke, I realized why my instincts were completely off. In my misguided empathy I had committed what William James called the psychologist’s fallacy, assuming incorrectly that one knows what someone else is experiencing” (The New York Times, 3/2/10).
Conclusion: The time has come to take BIID seriously, and to consider a more holistic approach in terms of integrating biology, psychology, philosophy, and yes, even the arts, into the conversation surrounding the conflict between BIID and the bio-medical ethics community.
Best – Randall L. Tessier
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