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 exclusions always matter.

It’s the anniversary of Sri Lanka’s independence from British rule, thus also the kairotic moment prompting me to finally collect my thoughts around a range of social media content appearing on my feeds lately, primarily around tourism and programs of study in Sri Lanka. I’m used to seeing ads encouraging tourism in Sri Lanka, and tourism is often deployed to boost a postwar economy, especially in countries whose “beauty” is extolled. In these ads and travelogues, I find a fairly consistent discourse of (ancient) exoticism, the (ancient) beauty of nature, an (ancient, mystic) spiritualism that leans Buddhist and New Age/self-help, attended by a rhetoric of healing. And all of this discourse is harmful, exclusionary, reinforcing and benefiting victors’ nationalist narratives and revised histories, of who the country really belongs to and how “Sri Lanka” as a country should be defined: as west, south, and center, neatly cutting out the Tamil-dominated north and east. I find abstract violence in this, but it’s one thing to see it in tourism ads, or the Twitter feeds of a couple of obliviously vacationing non-local (usually white) friends, colleagues, or distant acquaintances. It’s another thing to see it embedded and produced in/around study abroad programs whose aims and destinations don’t take “Sri Lanka” as a whole, and whose promotional and instructional materials seem to gloss over Sri Lanka’s grim post-conflict realities in favor of flowers, sunsets, energy, healing, celebration, and (especially) the importance of contemplating and recognizing beauty.

As a graduate student/newly minted FT faculty member, it still feels risky to publicize my reactions to established programs, instructors, directors, but. The idea that students become implicated or trained in this way of seeing, and that scholars I admire or teach respond positively to this way of seeing. That feels like actual violence. That’s what the educator-activist in me can’t let go.

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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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i’ve sewn you up, i’ve set your bones, but I won’t bury you.

Within hours of receiving the breaking news alert that Robin Williams had committed suicide, I commented to my sister that I wasn’t surprised, that I had sensed before I explicitly knew that he was depressed. I was at a loss to explain myself when she asked me why. A day later I spoke with a friend who has bipolar disorder and she immediately grasped where I was going with this. For her, the signal was that manic energy. For me, it was the freely associative quality of his genius. For both of us, these signals were intensely personal, because they were personal to us. It made terrifyingly perfect sense to simultaneously wish he hadn’t done it and forgive the impulse. I say “impulse” but the language is wrong; suicidal ideation, like depression, isn’t a fleeting sadness but a chronic, gnawing desire, a void in the gut that whispers and speaks by turns. The verbiage should be less about “battle” than Sisyphean endurance in the face of being slowly hollowed out. As others have stated, depression is the absence of feeling, the beast on your back sapping the meaning from everything, visible only to those who are similarly weighed down.

I’ve been mourning Robin Williams along with the rest of the world. I don’t want to rehash any of the pieces I’ve read, which alternately touch on suicide contagion; the Academy’s problematic tweet; the romantic notion of Pagliacci; the comforting narrative of depression (along with terminal illness) as something that can be “fought” or “battled”; the slow emptying-out of the word “depressed” itself, which is used interchangeably and wrongly with being sad. Instead, I’d like to address something I haven’t seen yet, which is the other comforting narrative that (re)productivity and accomplishment are enough to “defeat” depression, the implication being that if a (re)productive, accomplished individual is unable to pull themselves up from the dark place, they were too fragile for this world anyway, or else they were afflicted with some other disorder preventing them from recognizing that the answer to “What’s the point?” lay in their spouses, offspring, curriculum vitae. It’s a false narrative, linked to capitalism or social control or the biopolitical regulation of bodies, but ultimately it’s meaningless to the ones at which it’s aimed.

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“we were never making sense.”

If I am always thinking about dismantling our binding webs of signification. Do we begin here, in the moment of crisis, by realizing that kill is kiss, sample a color, understanding the pillar on which power rests its laurels, understanding that we were never making sense the key to disturbing power itself?

quis custodiet ipsos custodes?

I offer this disclaimer: I acknowledge that I have a reputation for being a bit of a purist, and mildly inclined to hate almost everything; however, I did my best to dispel my preformed assumptions and, two weeks after Minutemen #1 was released, I began purchasing and perusing with an open mind. I just finished Ozymandias #1. And I find myself as angry as I was 2009. I may have been unable to argue with Snyder’s (albeit ineptly executed) passion for Watchmen and his adaptation of it, but—as was anticipated by a community of fans—Before Watchmen indeed reeks of the attempt to capitalize on the success of Moore’s graphic novel and the (questionable) success of Snyder’s 2009 film.

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the secret censors of the mpaa.

I’ve recently been obsessing over the 1997 film Event Horizon, a sci-fi/horror flick described by its director as “The Shining in space.” For those who haven’t seen it, the basic premise is that the Event Horizon, a spaceship capable of “jumping” through space simply vanished and then reappeared seven years later; thus, a salvage crew, led by Laurence Fishburne and aided by engineer Sam Neill, are sent to rescue any surviving crew members as well as the Event Horizon. The ship, however, has come back unspeakably alive. The film unfolds slowly and then blossoms into a veritable Hellraiser homage, replete with a chaotic entity, extremely fleeting sadomasochistic imagery, and notions of pain, nothingness, and hell.

I often work best to the soothing sounds of tortured screaming, so I looped this film in the background while revising final papers and conference presentations last month. After the semester ended, I idly checked YouTube for extra footage and discovered that whole sequences had been deleted. Paul Andersen removed segments that actually helped the narrative make sense and restricted the gore to frames lasting 1-2 seconds each, in addition to radically trimming the orgiastic distress call video that motivates the salvage mission.

So then I looked at the original script. The changes made from script to screen were fairly radical. Images such as a son cannibalizing his still-breathing mother and violent, cannibalistic sex were omitted or heavily, heavily modified. A sex scene between the hallucinating Dr. Weir (Neill) and his dead wife Claire, during which he overcomes his loneliness and she tears out his eyes at climax, is also omitted. These scenes did not seem overly long or gratuitous, instead contributing to the development of a character on the brink of madness. Similar scenes made the cut in 1970s and 1980s horror films. So why this film, and why these scenes?

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Monster Culture, Torture Porn, “Senseless”

For 5-6 years, I’ve taught Jeffrey Cohen’s “Monster Culture” in my classroom in an essay progression focusing on horror film.  The unit catered both to my personal credo—that students leave my classroom able to read pop culture forms—and to my love of the horror genre.  It fascinates me to no end that the monsters in horror films allow us to assess the cultural and political climate of the time in which it was produced.  I am especially intrigued by recent shifts toward “torture porn,” the term coined by Eli Roth regarding Hostel.  In these films, great care is taken to depict, as realistically as possible, the inner workings of the human body and how easily it breaks down in catastrophe.

For instance, the Final Destination franchise gives us increasingly convoluted and grisly ways to die, starting with asphyxiation in a shower and progressing toward death by race car tire and escalator belt, each replete with viscera and still-twitching limbs.  The Saw franchise, quality-rated by the number of viewers who vomited or had to leave the theater, calls itself psychological horror; in reality it uses torture porn—in the form of mechanical traps reminescent of Rube Goldberg—as a justifiable means to an end.  Perhaps at the release of Saw I, the monstrous message was different, but later installments equated traps with pure justice: that is, an individual confronted with a death machine based on his crimes or flaws serves justice unto himself.  It’s the old “give him a taste of his own medicine” shtick, only exaggeratedly amplified.  The health insurance executive learns how horrible a cost-benefit approach to human life is; the fraudulent self-help guru is forced to undergo the trials he claims to have experienced.

And viewers have picked up on this.  

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when we were (never) treated fairly.

“As I got to know my adjunct colleagues better, I began to see these largely invisible, voiceless laborers as a hugely diverse group of amazing teachers.  Some are employed at full-time jobs in education or elsewhere, some are retired or supported by wealthier others, but far too many are just barely surviving.  While instances of dumpster diving are rare, adjunct shopping is typically limited to thrift stores, and decades-old cars sometimes serve as improvised offices when these “roads scholars” are not driving from campus to campus, all in a frantic attempt to cobble together a livable income.  Some adjuncts rely on food stamps or selling blood to supplement their poverty-level wages, which have been declining in real terms for decades.”

Brown, “Confessions of a Tenured Professor”

I’d read “Confessions of a Tenured Professor” in Inside Higher Ed a while back, but it left me too incensed to coherently think—not because of Prof. Brown’s views on the situation (which I think is commendable, as there’s so little published on the subject in widely-viewed forums, let alone in such a nuanced manner)—but because the subject itself is one that fills me with rage and despair. Today my friend C. forwarded me this article in The Atlantic, which compounded my rage by asking the impossible-to-answer question: “Why Does Academia Treat Its Workforce So Badly?” After frothing at the mouth for a moment, I thought that maybe I should attempt to think about the issue beyond just “fuck this.” So here I go, take one, from the top.

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the glass isn’t bulletproof.

Last Wednesday, there was a shoot-out at our site. A few coworkers, kids, and I had entered the center. I was starting to help a 9th grader with her resume. The fan was whirring in my ear. Then came the popping sound. One of my coworkers dove down immediately, sprawling, followed by another, who grabbed and shielded a kid as he fell, taking the impact on his shoulder. I dropped next to a man whose name I didn’t know. We were shouting for the kids to get down as they kept spinning on their swivel chairs, checking their email, working on homework. I heard 5 shots; some people, who were still in the foyer when the shooting began, heard up to 8. We phoned parents and asked them to come pick up their kids. We asked them to bring ID. In retrospect I wonder if this might have been in case a gang member came to pick up someone in a mostly gang-affiliated family, since some of the kids spoke very loudly that day about having brothers who’d shot someone, or been shot, in gang shoot-outs before. I helped a usually bubbly 12th grader arrange a ride home with a friend’s parents. I overheard kids muttering, “Man, they buggin’, I gotta go home, I can go myself, this shit happens all the time here.” I helped a 9th grader print his homework. I lent my phone to a 10th grader I’d helped the previous day; after I’d edited his essay, he exclaimed, “Oh man, I’m so happy!” and hugged me. He lived in a decent neighborhood and had never heard gunshots before. He asked me if I was scared: a loaded question. Other kids were listening. I hedged, “No, but it will probably seem more real to me later.” He seemed to respect that. He told me he was scared. That he didn’t quite understand what had been happening, and that to keep his mind off the fact that we were in danger he’d kept doing his homework. Then there was a strange moment of disjuncture where we both looked at his computer screen, which was left on the YouTube video he’d been watching when the shots began: a gameplay demo of an unreleased Xbox shooter game.

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