GenderHealth / MedicineScience

Sex and Ghosts

Much more will appear in this space about the issues raised in my last piece, ways trans folks can make greater strides in care for ourselves and community, but this random and interesting science story gripped my imagination hard just a few minutes ago and won’t let go.

It’s got everything! Deep and powerful urges to engage in motivated reasoning to support its claims on the one hand, peer reviewed science on the other hand, and such a heavy weight of broader implications. If we made summer blockbuster movies for other skeptics instead of blogging, a flick based on these issues would bank hard.

Robert Krulwich, one of the minds behind NPR’s “Radio Lab”, writes this story about a study, linked to from that page, on “phantom fingers”.

The phenomenon of people experiencing sensation, even complete articulation, of limbs or digits that they have lost, is a well documented, if not fully understood, fact. The personal tragedy of one woman, already likely a victim of thalidomide in utero, gave scientists studying “phantom limbs” reason to postulate an explanation for these sensations that has potentially enormous implications beyond the experience of amputees.

In brief, a girl was born with symptoms of thalidomide poisoning, which in her case meant a right hand without much of a thumb and no index finger at birth. In later misfortune, a car accident forced the amputation of that entire hand.

And this is where it gets interesting. Like many people in her situation, she began to experience phantom limb syndrome. In her case, she experienced sensation in a hand that had all five fingers, which she not only did not have, but had never had before.

Years after, she would then develop another common issue, experiencing severe pain in her phantom fingers, specifically as though two of the fingers were twisting out of shape. The doctor behind this study had previously developed a now famous treatment for this particular phantom pain, which involves the patient placing both hands, the real hand and the phantom hand, in a kind of mirror box, while they put their flesh and bone fingers into the “painful posture”, then slowly resume a comfortable, relaxed shape again. This treatment, in a few weeks of practice, appears to use mirrors to trick the brain into untwisting the imaginary hand, and stop generating pain.

The doctor’s treatment method, this specific patient’s experience of phantom fingers, her mind generating the experience of fingers she had never possessed, all of it lead to this potential explanation:

“Maybe, the doctors write, all of us are born with an innate, hard-wired ‘body-plan’, an inherited map of how we are supposed to look. The map is in us, but experience can muck things up.”

And you know what those lines suddenly put me in mind of?

Gender Dysphoria.

Think about it. We aren’t in trans 101 territory on this site, where it might still make some kind of sense to repeat the “sex is your body, gender is your mind” line. When I think just about the experiences those I’ve known personally have shared, trying to find language for constantly, and yes, some of them reaching for phantom limb syndrome as a metaphor for their feelings, this feels like an enormous puzzle piece falling into place.

The trans man sex educator I know, who “feels” his cock as surely as his own arm. My partner’s sensation, over twenty years, of tingling and other feelings in their breasts, long before they ever knew they might not be the male they were coercively assigned. Hundreds of lives and stories, all potentially that much more validated by this legitimizing science. It’s a really heady feeling.

Which means it’s never more important to be skeptical, when that powerful “eureka” feeling comes.

First, and for me personally, the most obvious question to raise is this. What about those of us who are ambivalent or opposed to any form of genital reassignment? I can’t say with total certainty that it’s for me. It’s also moot given the prohibitive cost, but if someone were to offer me a full ride, I don’t know that I’d take it. Even though I definitely have experiences with my body that are like this, my conscious mind isn’t fully on board with bringing my flesh into alignment in that way. We know better than to talk about gender as a continuum between male and female anyway, so even if this theory is true, it may not be applicable.

Then there’s another sort of under our noses fact to consider. The woman referred to in the study already DID have a left hand, at birth, which developed along standard lines. Given our brain’s predisposition towards symmetry, one could pretty easily say that her left hand already gave her an effective, lived model of what a whole hand should be.

The study addresses this, however:

“Why, during those 18 years when she didn’t have an index finger — why was there no phantom? The doctors suggest ‘the mere presence of [her actual, impaired] hand was sufficient to inhibit the innate representation of her normal hand.’ In other words, everyday messages from the hand she got repressed the ghost of the hand she was meant to have. Tactile, proprioceptive and visual feedback told her, ‘Sorry, you can’t do that,’ ‘Sorry, no pointing, you don’t have a finger there,’ and all those sorries, arriving constantly, dominated her brain and left no room for the ghost finger to make itself known.”

This too probably makes many of us with experience of dysphoria nod our heads. If you’ve ever felt uncertain or terrified or ashamed that your life didn’t seem to perfectly match up with the Harry Benjamin Syndrome standards, you can’t say honestly that you “always knew” you were “in the wrong body”, you probably know a great deal about how not only society and familial reinforcement, institutional power, but also your own mirror contribute to the complicated mix of coping mechanisms and self abnegation that many of us relate to and struggle, often without end, to come out from under and take one whole breath as our own self.

And yet, to be skeptical once more, how many of us are just falling under the influence of other neurological processes, motivated reasoning and memory editing? In the brain’s constant effort to establish continuity, to “tell a story” of our life that is contiguous and rational, how much of what it “remembers” is simply convenient to the story being told right now?

It’s important to note, as they do already in full disclosure, that they have no evidence for a “hard-wired” body plan, which can produce these phantom sensations. It’s a theory. As a theory, it does work to explain observed phenomena. However, it is not conclusively proven fact.

The doctors at least felt as though they could rule out the likelihood of their patient lying about the sensations. The phantom fingers were still somewhat stunted, almost as though her brain created them halfway between the hand we expect most people to have, and the hand she actually possessed before amputation. If she were lying, why not lie about having a totally “perfect” hand? This feels more like a neurological compromise between whatever mechanism is producing the sensation according to a “body plan”, and the embodied fact of a hand which developed differently from the plan.

I certainly don’t know either way, much like my ambivalence about GRS. I don’t even know why I’m ambivalent, if it’s some genuine attachment to my factory parts, or really just an extension of the emotional and mental coping compromises I’ve made with the reality that I will likely never be able to change my body so profoundly. When simply obtaining money for hormones has sometimes meant taking risks being intimate with strangers, it’s hard to be certain.

I do know we can’t let our desperate need for broader understanding and legitimacy of trans experience in the mainstream, cis normative world override our commitment to what is true. At the same time, without anything yet to strongly suggest this isn’t true, isn’t a truly sound theory, the feeling I get from thinking about dysphoria alongside this study is strangely comforting and exciting at the same time, much like my first dose of estrogen. Maybe it brings us closer to being right on their terms, when the simple fact that we are living it is often not enough to convince people that we are telling the truth about our own life.

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Former professor of argument and rhetoric, current sex worker, performance artist, and novelist. I enjoy queering up the fantasy genre, learning and growing fitter, and exploring topics like language and epistemology.


  1. June 30, 2012 at 12:29 pm —

    Wow, this is a totally fascinating study and I really appreciated your thoughts on it! I thought the point about the coping mechanisms and self-abnegation was especially astute; sadly, I can so relate to that. If anything, though, I think observing the power that sensory and proprioceptive feedback (not to mention social feedback) can have might eventually lead to people feeling less need to memory-edit (either for a feeling of personal continuity or to conform to HBS type standards).

    • June 30, 2012 at 12:53 pm —

      Many thanks, hon, and obviously I agree, this was wild stuff! I set aside most of today to read the actual study in full, available on Krulwich’s blog, and I’m sure it’ll bring more pleasant tickles.

      I love your point as well. Content wise it isn’t very much different from other simpler (until you unpack them) ideas like, “listen to your heart”, “live your own truth”, “be in the present”, the kind of things I heard a great deal of from therapists and faith groups. However, the way you say it suggests a road that legitimate scientific inquiry could take, which might give us concrete tools for managing the pain and confusion of dysphoria with its attendant depression. I don’t know how many times I or someone else I knew have said, “but i don’t know how”, to the million variations of “try to be happy” or “don’t think about it” that are out there.

      Usually I’m intensely put off by any use of the term “hard wired” in the course of discussing experiences which are easily explained through social conditioning. I hear it and think, oh hell, I’m about to get some amateur evo-psych thrown at me, I better get some mace (the iron, spiky kind, because I trust that over some unreliable aerosol).

      In this case, leaving that charged language aside, it’s not unreasonable to postulate that an integrated individual with physical being and sentience will of course have within it a kind of internal map, reinforced by its flesh and its neurology. Since biological entities are all also the results of mutations over time, it also stands to reason not everyone would get maps that perfectly align with how the flesh develops, in fact maybe MOST people have this mismatch to a certain degree. However, even in the case of trans folk, when we add up alllllllll the parts of our body, even most of what we have and experience properly matches this theoretical map. After all, we don’t often hear about dysphoric sensations produced by having toes, right?

      Oh grrr, I just got up, had a muffin, saw this comment and rambled on for this long without having had a shower or dressing yet. That’s how excited the science here makes me XD

      And how excited your participation makes me, too! Thanks so much for your contribution <3

      • July 2, 2012 at 12:22 pm —

        Actually, there are people that have dysphoria about their toes and other limbs. To the point that they sometimes to self-harm. Identity Integrity disorder, I think.

        • July 2, 2012 at 3:20 pm —

          Yeah, and I’m glad you raise the point actually, since it straddles a couple interesting lines. Those similarities, to me, are absolutely worth investigating, but there’s a political issue involved too. Many of us would likely be REALLY protective of the term “dysphoria” and refuse to have it associated with people who self harm in those ways. Goes to the heart of what value there is or isn’t to keeping transsexual care governed by GID standards, pathologizing it. However, those mechanisms look awful similar, don’t they?

          Now they could be only superficially similar. Say there are a large complex of essential issues going on with a trans person, which just so happen to also include activating mental mechanisms akin to those experienced by those who see themselves as amputees, and that there’s only one particularly wonky and treatable issue going on with them. It’s possible, after all. It’s harder for the “body map” theory to explain any of the feelings experienced by those who want limbs removed, or see themselves as otherkin.

          And I’m not looking to denigrate them, but considering the arguments thrown around in various communities, alot of our own language is being used to assert the validity and truth of those experiences, asserting they should be honored, welcomed and accommodated, not treated as mental disorders.

          It could of course be that we should abandon any protection of the term dysphoria or what have you. If medical gatekeepers didn’t need appeasing, or insurance companies/governments weren’t part of that apparatus as figures who have to be forced to help, and only if we’re deemed “sick” will they do so, then maybe we would abandon much of the current medical terminology to begin with.

          But we don’t live in that world, of course 🙁

          My more realistic hope then, though still optimistic, is that bright lines can be drawn between research and politics, and that the research can be informed more directly by our various experiences (with ANY condition or life), and less by the cognitive biases of practitioners and their powerful discourses. I also have to acknowledge there’s something really privileged about what I’m saying, because I’m in a position where I don’t feel any reason to fear what might really be the truth about why I am what I am. My transition can’t be “taken away” from me, really, the state would have to just end me, since I know how to get my ‘mones, how many, and I’ve made peace with not being able to do much else. I can’t really be coerced further to conform, after losing a career and so on. Again, I’m privileged since, if anything, I feel more liberated, and have had a massive quality of life increase, and can work towards being able to move.

          And most just don’t have the wildly good fortune I do, so that’s going to go on influencing the language as long as reliable care is something almost no one can rely on, cis or trans.

  2. June 30, 2012 at 2:49 pm —

    Thanks! To clarify, I don’t necessarily think recognizing the forces (biological and social) that try (and sometimes succeed to a certain extent) to make our brains recognize our bodies as our own in spite of dysphoria sending conflicting messages will substantially help assuage dysphoria. But I do think that that recognition has a lot of potential for making us feel less need to rationalize the times we felt more continuity/identification with our bodies/social roles, which sometimes causes us a lot of additional distress. With time, the medical/psychological establishment might even come around.

    But who knows, I wouldn’t totally dismiss the possibility that it could be developed into techniques to help against dysphoria. Did you have anything particular in mind?

    • June 30, 2012 at 10:30 pm —

      Too right, and what I mostly meant was the information being parlayed into more ways we can establish legitimacy of our experiences among medical professionals and the general public, not so much countering the dysphoria per se.

      Hooooooowever, being optimistic, and liking to attempt innovation, I have given it some thought and believe maybe there is something about this which can point towards dysphoria management. For example, while an identical mirror box trick is unlikely in any way to make a difference, some variation on the idea of being able to provide us with ways to see ourself (outside of ourself) with some things altered or some exercises, may provide benefit. I think many of us try this kind of thing instinctually anyway, but it often winds up a dispiriting experience.

      Then there’s the matter of how knowing (IF all this is true anyway) exactly what mechanism is producing the sensation of pain, how it may be interrupted. Obviously GRS or other procedures are intended to relieve this in large part, nor are there social components to phantom limb syndrome which are comparable to “being read” and judged by the transphobic. I don’t wish to minimize those things in any way. However, in one’s private experience of local dysphoria, perhaps even with ones intimate partners where some of the most tragic flare ups occur, here also may be something which gives insight into how to short circuit a flare up, a way to kind of defuse a bomb before it’s triggered.

      If so, what might those methods look like? I think about two things here: one, shame management. Established CBT and DBT techniques do much to deal with shame, which is basically a disgust reaction with oneself, related to many of our experiences of dysphoria. I don’t think there’s really any effective replacements for confronting shame in these ways (and I recommend “Letting Go of Shame” as a great starting point which includes cognitive exercises).

      The other thing I think about will take a bit more explanation. To be brief, I used to be a person of faith, and like many people, though I was aware that my beliefs were not rational, I was afraid of losing access to the experiences I associated with my faith life, things which were transformative, uplifting, with extremely powerful impacts on my brain, up to and including hallucinations and trance states.

      I don’t advocate for those things, and will not identify the faith in question, because these are experiences cultivated readily among most any faith. Meaning they can be cultivated by anyone, without belief in supernatural forces, since these are natural forces. I don’t know that I recommend drugs, that would be a separate discussion/argument (read a piece today discussing cannabis’ wildly different impacts on the brains of people with a single genetic difference from others, linked to schizophrenia).

      Rather I think there is value in some practices that engage in what I’ll call (trying to be discrete) active and even partnered meditation work. Practices of ecstasy, neither religious nor reckless, may work in tandem with this knowledge to allow perspective, presence, and sense of anchoring wholeness which make for better coping strategies than alot of our other “options”. It isn’t a “cure”, this isn’t a thing to be “cured” per se anyway, but I mean for those without access to procedures or aid, they may make for better coping mechanisms. It may be privileged to say it, but I know that, for example, a good one hour workout gives me a great deal more strength to resist dysphoric pain than a night drinking, as much as I like drinking. What I’m suggesting is something a bit more advanced, which works out the mind in healthy ways and retrains it away from channels that are easily fallen into during certain potentially triggering events. To make a bad pun (not even an original one), it’s like introducing “neurobics” to a good workout routine.

      Dysphoria, to me anyway, is almost like experiencing a sort of tunnel vision, where the walls of the tunnel are funhouse mirrors, distorting out of all proportion various features or flaws. Features I may actually like about myself later or in other contexts, when I’m seeing them differently, and from a different emotional space or physical context. Weight has always been a massive issue for me, for another friend, it’s actually insecurity about her shoulders that can set her on a massive self destructive spiral. I think about these phantom pains of others, and then think about dysphoria wondering, what kind of mirrors, real or metaphorical, might we hold up to people that help, and what techniques of “seeing” might we help people learn that allow them to “uncurl” the knot of their fingers around their own hearts. If you’ve ever tried to tell a suffering friend how you think they’re beautiful when they’re going through this, you know how futile it can be.

  3. July 1, 2012 at 11:24 am —

    Ah, yes, I agree that this line of study has potential as far as how we’re viewed by doctors and the public- well, at least the segments of the public that have any regard for science 😛

    And thank you for spelling out what you see as the possible directly therapeutic strategies, and also for making the point that the social dimension of our lives ensures that medical treatment is not obsolete. I can sometimes become cynical about meditation and similar practices in some circumstances (they’re a major cost-saver for the insurance companies!) but they probably have a lot more potential than I give them credit for. Your experience certainly aligns with that of the few friends I have who meditate regularly; they find it a very beneficial and grounding experience.

    Your last paragraph actually got me thinking about a slightly different issue: dysmorphia. I haven’t looked into this a whole lot, but the descriptions I’ve read of it sound very similar to both your experience of dysphoria and thought-patterns I associate with the time I developed an eating disorder shortly after puberty. I could be having selective memory here, but I don’t remember my nutritionist dealing with the psychological aspects of what I was going through (it probably didn’t help that I was in deep denial about the problem and was more than willing to grudgingly comply if it got me out from under the clinical gaze). But I’m sure there are techniques out there for countering the warped self-perceptions involved in dysmorphia, gender-related and/or weight-related. I just don’t know much about them.

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