One week into tapering off Savella, which would not have been possible save for my paranoid hoarding of medicines I’m prescribed, death is not yet preferable but an ax would be. Or dismemberment by train. I am disjointed as it is, a slow drip of water sieved out of noodles, legs that periodically go missing, arms I can find, but don’t want to, because there is an ache deep in my shoulders and armpits like excavation gone awry. A long probing finger wiggles for purchase behind my breastbone, poking me tachycardic, 137 bpm at rest. Side effects. If there is nothing good in the world any more, I’m supposed to remember that’s a side effect, too.Continue reading
I want you to know you’re killing me.
You always were. It isn’t news. But assume your postures of defense if you think I’m wrong. Tell me you’re protecting the economically disadvantaged in dire straits, stripped of health care because they can’t afford it, and what could I possibly know about that; and I promise, I promise, I won’t tell you in return how I teach a 4:4 load, tutor four hours a week, do freelance editing, and still have to ration out my doctor visits with a careful hand and weigh the costs of medication against the costs of my next meal. I won’t tell you how before ACA I had to ration physical therapy visits because of lifetime caps per body part and condition, or that I suffered pain like slow implosion for years before accepting a prescription that made life livable, because I couldn’t afford it. I won’t breathe a word about how all the proposed cuts, if I choose to live with them, will leave me with the kind of debt you can’t breathe through, like what ought to take your breath away, but won’t, the knowledge that millions like me or worse are imperiled by you.Continue reading
Here I was yesterday, in my office, feeling cute, feeling my invisible pain acutely. I’m drafting this today, on my phone, on my commute back from physical therapy. Today, I have none of the feeling I did yesterday. Yesterday, I had none of the confidence to contribute to the hashtag #cuteanddisabled, which I saw on Twitter and badly wanted to be a part of. It was a moment of visibility for a community I identify with, but one that is frequently socially determined by visual assessment. According to the eyes of our dominant culture, I pass for able-bodied. I have the privilege of being normatively cute with presumably minimal effort. When pain shatters the illusion, normate society recoils, cute suddenly synonymous with espionage, the cover of a less-than-functional human stealth-walking among you like I belong.
No one has to tell me I don’t, I know by our emphasis on vision that I belong nowhere.
Let me deconstruct.Continue reading
How to work when the pain is so great it slows even time? Indefatigable voice curling around and in on itself in the gut/womb space where I’ve put it down, you rise when and where I deny my body most: in the clinical waiting room; at the doors of the academy.  You are more familiar than I can say of my own touch on my own skin, as unpredictable a receptive surface as it is. A long time ago I knew that the point of my elbow will nervously caress the back of my throat, my right leg laid horizontal is a spire of tattoo ink run into my big toe.
The institution would have me call it “burning,” “aching,” “swelling,” “throbbing.” The same staple words of bad erotica, turned sterile to suit the bodiless worlds of hospital and university.  A carefully crafted, scientistic semantic field that wrongs patients, experts, scholars alike.
Really the institution would say I must be confused, because pain doesn’t typically refer like that.
if this project was called “creative,” i wouldn’t question my instincts.
Because it’s called “research,” I constantly feel the oppressive shadow of the Ivory Tower: Western, masculine, rational and orderly, demanding I leave my body and its (feminine, chaotic, threatening) intuition behind if I intend to progress further (Detienne & Vernant, 1974; Wilkinson, 1997; Metta, 2015). But the novelistic attitude and narrative inquiry exist on the same plane as ethnography. The use of fictional tactics like narrative plot, composite characters, and theoretical fiction are less alien to social science than (I think) I’ve been conditioned to think (Ellis, 2004; Gibbs, 2005; Spry, 2011; Smith, 2013). Footnotes and other radical citation forms abound in the writing of authors like Carolyn Ellis, Art Bochner, Anna Gibbs, Phil Smith, Aliza Kolker, etc., all of whom seem to recognize that parentheticals interrupt the narrative experience. The line that keeps recurring in my head is, Artistic integrity is a problem for you, but why does “research” mean I have to resist, or edit, or denigrate the forms that emerge as most effective for any project in question? Like Tanya Wilkinson (1997), who recovers her gut epistemology through dream analysis, I find myself asking all the time, Why can’t I bring my sick woman’s body and its particular brand of metis back?Continue reading
I’ve wanted to say for weeks now that there was a day, while teaching, that I lost my legs, and I completed my seminar with the podium in a death grip to spare myself the added pain, and shame, of falling. That day, I wanted to write that I shuffled like an infant or a drunk down and up subway stairs, because cabs are a luxury reserved for real emergencies and I already felt guilty for even wanting to use it. That day, I was in too much pain to write, but as I stumbled towards my apartment, pausing to rest on strangers’ stoops, a man stepped in my face and tried to take my elbow, saying, “Hey, baby, you look like you need help, let me walk you home.” I said no. He followed me for 4 blocks, insisting, laughing, “Let a real man take you home.” I’m sure he thought I was drunk. Uninhibited. Easy pickings. When the truth is, I couldn’t run. It’s the recurring nightmare I have, playing out in real time, that when they come for me I will have nothing left, not energy, not physical ability, to protect myself, not from street abduction, home invasion, assault, robbery, rape.
To think this is called running out of spoons.
The flare-up, like all flare-ups, is gone now. I haven’t bothered to say anything to a doctor because experience has taught me how they’ll read it as acute pain, an isolated episode, because I’m all better now, I’m not army crawling through my apartment, and my body is already forgetting it the way we shed winter’s mortal cold when faced with summer sun (Morris, 1998). In the cold and bright rooms of the hospital wards they tell me the story of my pain in quantified measure, evacuating it of meaning (Morris, 1991). So there I linger, at 145th Street, at Deleuze’s convergence of critical and clinical as an opportunity for mutual learning, at a free clinic where I stand out as too rich and not sick enough, alienated from everything and myself (Malabou, 2012), waiting for the threat to pass, waiting to be thrown out on my ass to face it, because only the thin line where earth meets sky is where the wastebasket diagnoses, like me, belong (Bowker & Star, 1999).
For a half-hour, my left hand becomes the hand that commands the heavens. Close it, fiercely, against my thigh and my whole body is distilled to this one point, a fist bristling with energy, five invisible skins thick, resonating with the air. Open it, and forces flow in all directions, the visible skin of my left ring finger visibly roiling under the pressure of sudden, unasked-for godhood.Continue reading
After writing that last post on biohacking, I’ve been thinking more about the body as a (media) system, or a system of language, with internal mechanisms keyed to its survival. As a friend put it, “food is a medium through which we communicate with the body,” and to add to that, food may be a way for the body to speak back to us as well.
Is everything we do to the body communication?
I’ve lurked sites like BME for decades, long before I got my first tattoo, while I was figuring out what parts of my ears to pierce, when I was working up to scarification. It was on BME that I first read about magnetic implants, when I was still in college and afraid to relinquish control long enough to allow an artist to exact permanence on my skin. The procedure involved inserting a magnet deep into a finger (or other body part), after which the magnet would move in response to electromagnetic fields and transfer that sensation to the surrounding nerves. The result: an anatomically internal sense of the electromagnetic spectrum as an extension of touch.
I had zero diagnoses at the time but I felt disabled enough that I wanted this, badly.
The procedure wasn’t perfect when I first read about it. Dip-coated silicone coatings could easily degrade, exposing the body to dangerous rare-earth metals and compromising the magnet. Shatter the magnet and you risk the same toxicity, migration, rupture, nerve death. I remember reading about Shannon Larratt compromising his magnets and having them removed. I’d seen more gruesome images than those photos, and his removal went without a hitch, but I could imagine a foreign body corroding under my skin, killing my fingertip sensation utterly, because I’ve never been so lucky.
I was diagnosed with fibromyalgia a few years after I read about magnetic vision. I started modifying myself that same year. Everything on my body doubles as a commemoration and a teaching tool, and certain modifications—piercings and scarifications in particular—offer new ways of interacting with and experiencing the world. After all that, plus living with a condition that already complicates my sensory experience of myself, others, and the world, implanting a tiny magnet into my finger didn’t seem so terrifying.
Exactly three weeks after I had the procedure done, the magnet is no longer a foreign body vibrating alongside my finger pad. It is my finger itself. It is my nerves, jangling, when I run my microwave, shouting an interruption when I walk through security gates, humming in C major to accompany my electric toothbrush, reminding me that there is so much more to the world than can be seen or felt by the body as we are born.Continue reading
When I find myself drowning my instinct is not to surface, but to swim deeper. I tend to operate at full capacity: three different undergraduate courses in two different states; drop-in tutoring on what would have been my off day; that god-forsaken memoir that accuses me every day of having given up what makes me truly happy. In theory, my dissertation proposal. In practice, an aggressive self-care regimen that, over a month in, appears to be working, and has gotten me thinking quite a bit about biohacking.Continue reading
I’m quoting Jake Jackson, from this article at phdisabled, which I skimmed when it was published but read more closely yesterday, on the subway, legless and crawling before the realities of health care. Again it brought me to the edge of tears, as words do when they tell my experiences back to me in a form I was previously unable to grasp.
This is my current abyss.Continue reading