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.

the syllabus i can’t give you.

Inspired by Sonya Huber’s (2014) Shadow Syllabus, written as a free-writing exercise for myself, with an eye to adapting it for use in my writing courses.

This is your map for getting an A. You’re the driver, and I call shotgun, making me your navigator. I’ll tell you exactly how to get to where you’re going, but over the lulling hum of your engine, you might have difficulty hearing me.

You are guaranteed to get lost.

When I was in college, I was always lost. When I reached grad school, I realized being lost is a luxury you will one day lose.

Continue reading

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.

Continue reading

fibromyalgic reporting in

#disabledandcute

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

breaking radio silence.

Today, I stand inside my apartment, in front of a closed door, as I have done each morning since Donald Trump became president-elect. The last time I had this much difficulty breathing, I was fresh from an appendectomy that excised the organ but couldn’t repair months’-long internal damage. My anticipated full-recovery date was November 13, my thirty-first birthday. This weekend, I turn 33, what some call the Jesus Year, the year we are meant for greatness. Three days ago, I watched the election results in the throes of a terrible cold that refused to let go, without surprise, with a rising mixture of feelings akin to what I felt during the climax of Sri Lanka’s civil war. I vomited once, and later that night, coughed up bloody phlegm. It felt as real as anything else, meaning it didn’t feel real at all.

Fibromyalgia means any bout of illness destroys me, physically and mentally, but for once I am grateful for this cough scraping the flesh from my throat, lungs, diaphragm, energy reserves, because it legitimated canceling my classes, it allowed me to stay in bed for days, to let my apartment go to shit, to utterly lose momentum on my dissertation, to wear the same pajamas day and night, through sweaty night terrors and takeout stains, and call all this something other than depression.

I can’t work up the courage to step outside.

Continue reading

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.

Continue reading

“artistic integrity is a problem for you.”

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 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.

Continue reading

the author is in pain.

Written for and performed at Affect Theory Conference: Worldings, Tensions, Futures, “The Author is in Pain” is a project I consider my first foray into performance art scholarship, as part of the conference’s “Wreck the Format” stream. It is the first fully realized expression of my experience in the emergency room a little over a year ago, peppered with experiences in and out of medical and academic institutions. Inspired by scholars and artists including Elaine Scarry, Brian Massumi, Mel Y. Chen, Lisa Blackman, Ann Cvetkovich, Margaret Price, Petra Kuppers, and Leslie Jamison (in addition to being saturated with Foucault), this piece is intended alternately and all at once as a confrontation, an interrogation, a confessional, a demand for accountability, a request for aid in finding new ways of seeing and speaking with regards to invisible pain. It is my hope that this destabilization of typical perception can be extended to other forms of “passing disability,” and that it may serve as my own (if not others’) entry point into the dream of a language more common to us all, one only achievable if we recognize and work towards it together.

I am indebted to my close friend Sara Fuller for serving, sometimes simultaneously, as massage therapist, painter, photographer, and video editor for this project; without her, I wouldn’t have been able to realize this series of provocations as well as I have. I am also grateful to fellow Ph.D. student Fredrika Thelandersson for filming the presentation when it was delivered at the conference in October, which is why you’re able to access it now.

Let it speak for itself.

The transcript, with elements that do not translate to oration or visual performance, can be found here.