Contours of a life lived with pain when health risks make treating pain an impossibility.

CW: COVID-19, medical PTSD, ableism.

I am writing this now because I am approaching the limits of my capacity for writing. I’m 36. I’ve lived with fibromyalgia for over a decade. For six years, I lived with the medical PTSD and physical aftermath of a nightmarish appendectomy that makes it impossible to get a deep breath, or to cough or sneeze without pain like a fingernail in an open wound. My social media feeds are fingernails in all my open wounds. I am flanked by academic CFPs about a pandemic that I fear could kill me and by social, political, and academic commentary about allowing the disease to run its course. I am watching the fury of disability activists I follow closely online. I am watching many of them develop COVID-19 symptoms because a roommate or neighbor felt invincible enough to socialize in large groups. I’m watching relatives and friends currently working in the biomedical complex, exposed to COVID-19 without adequate protections or ability to continue best practices. I’m worried about my friends and colleagues, many of whom are high-risk, like me, or have an impaired immune system like me, or exist under intersecting oppressions that make them second-class citizens in the biomedical complex, like me. In 2014 when my appendix perforated, it took months to receive appropriate care. By the time I reached the ER, six to seven months later with a pelvis that looks like a bomb went off, I was triaged as unimportant and made to wait an additional day. And a ruptured appendix is indisputably a medical emergency, with no social or political rhetoric suggesting otherwise.

I hear New York City looks like a ghost town in some places, and the subway is tensely populated by essential workers only, but I wouldn’t know firsthand. I’ve left my apartment twice in 4 weeks. I don’t mind. Isolation isn’t new or troubling to me, because pain often demands it. Chronic pain and fatigue compel me to turn down happy hours, back out of dinner plans, refuse to get dressed and get on the subway, and instead confine myself to a hot bath or bed, outfitted with support harnesses, posture wedges, cervical pillows, and tears. I am making a career out of challenging the perception of pain as subjective, interior, inherently unshareable and unknowable to others, even while my horizon shrinks to the isolating qualities of its din. Today is my third week without massage and physical therapy. Colleagues proudly broadcast increased productivity, whether it’s writing projects, chores, DIY projects, the exhausting activist work of fighting to prove your life has worth. The pain, she howls. I delete every CFP email and resent each click. I am remembering the days, lost to me years ago when I started treatment, when the pressure of computer key to fingertip felt like tiny nail scissors, inserted into the flesh, and opened, the way a morning glory unravels into full bloom.

The thing is, today, I have the kind of headache I describe as heat, a grip, and a nervous thrill, like a hyena gently mouthing the back of my head before the pulverizing bite. I have oceanic muscle aches. I have unfathomable fatigue. I have pangs in my abdomen when I breathe deep. All of this is ordinary daily survival. If disease cultured itself in me, I really wouldn’t know, and it wouldn’t matter, because the federal response is abysmal, my city is overwhelmed, and if we have to debate whether to save the economy or the high-risk among us, then if I do go to a hospital, I’m reasonably certain I’ll be numbered, someday, among the dead.

Three weeks without treatment for pain, and the mirror increasingly reflects the promise of annihilation. My infrequent rituals of daily survival—foremost among them, stillness, as in if you are still, the ghost will pass—are beginning to fail. I do what I can with the equipment I have, but it’s not enough. Pain, the ghost, is always hungry. Amma would call me a hungry ghost when I ate too fast, when I was nuisance, and she wasn’t wrong, I am the ghost in all the ghost stories I know. Body-less, socially expelled, frantic for and repulsed by touch. As soon as COVID-19 cases began appearing in New York, I self-isolated. I canceled conference trips. I canceled the weekly physical therapy I have depended on for 13 years, because it was deemed safer for my health. I am spent with anger at witnessing what I already knew to be true, that lives like mine are so expendable, we are already, have always been, ghosts.

Maybe it was a week ago that I said, to no one in particular and also everyone on social media, that soon I’d arrive at pain-induced impatience and irritability. I said it humorously, because after all, few people in my professional circles know what I am like without treatment. No one wants to know, or knows what to do with, the real meaning, which is to say I am the click of a landmine, I am the ball of the foot that triggered it, I am the knowledge of what happens when the toes lift, I am what happens, I am waiting.

It could be so much worse. My salary has not changed. I am able to rally enough to do the job I am paid to do. But beyond pain’s horizons, I see less and less. I have to write my dissertation, the other job I must do, and writing is a parasitic vine binding my arm, wrenching my shoulder, and creeping up the side of my face. I am approaching the limits of my capacity for writing. It has been a long time since I have asked myself if I have the capacity to imagine what comes next, unimaginable even back then.

tell me again how paranoia won’t save me.

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.

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consider this a warning.

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.

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anamnesis with 15 cites.

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. [1] 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. [2] 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.

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i don’t yet have the tools to make you understand how normal this moment really is.

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).

this is being(-in) a horizonless world.

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.

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biohacking II: my life in magnetic vision

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.

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biohacking I: thoughts on dietary practice

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.

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consolation prizes.

My to-do list is a mile long, so obviously I’m updating my blog. In my absence, I’ve been publishing creatively—check out my pieces in r.kv.r.y and DIAGRAM if you haven’t already followed all my buzz about it on Facebook or Twitter—reworking my novel for the final time, and teaching three courses, while attempting to read a book or two for that dissertation proposal I have to write, probably sooner than I’d like to. Besides all that, I’ll break down my life like this: Fuck you, American healthcare system; and fuck you, American system of education that accepts the semi-hazing process of working yourself to the bone to simultaneously finance a higher degree and survive; and fuck you, government standards of disability that indicate that if you are at all functional, you’re not in enough pain to qualify for anything.

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