Conferencing With/In Pain

Patti Poblete has an awesome how-to conference post that’s practically canonical at this point, and I still refer back to it despite being a seasoned conference-goer at this point. Whatever the guide, though, I usually find myself having to modify it to accommodate chronicity and pain, and since I usually end up telling people in person what my strategies are, why not write it all up in advance this time?

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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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salting the earth with hypocrisy.

It’s the last week of classes, and my course announcements, as usual, have stacked up like this:

Hey class,
Due to travel hazards/laryngitis/an ongoing family emergency/my sick cat, I will be unable to attend class today. As such, I will record a lecture in advance of our meeting time and hang out in the chat room during class to field any questions you might have about the material. As always, you can email me directly with comments.
Best,
Prof. Mani

Also featured are stories of delays: #NJTransit and #PennStation have trended at least twice this month due to massive breakdowns, delays, and crowd control issues. After a NJTransit train derailed on Monday, April 3, damaging switches and rails, train delays and cancellations, platform crowding, and overflow trains infected the entire week, including the Tuesday and Thursday I commute to Rutgers for a 2:2 course load. At Penn Station, Amtrak, LIRR, and NJTransit were all affected. According to news reports and angry commuters on Twitter, the less crowded Penn Station’s platforms and trains looked like this:

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That’s hours of delays, jostling shoulder to shoulder on the platform, followed by a standing-room only commute for an hour on the Northeast Corridor.

Thousands of commuters were doing this, so I couldn’t say it wasn’t doable. But I didn’t do it. I cancelled my Rutgers classes that week, citing only my concerns that I wouldn’t arrive on time, and we wouldn’t be able to hold class anyway.

This was true, but it wasn’t the real reason.

Coincidentally, after I returned to campus I heard from a former student that I have a reputation for canceling, and I’ve been trying to dismiss my concerns about it because I’m not sure I get to be defensive. Like a good faculty member, I am dishonest with my students about my reasons, despite insisting they be honest with me about theirs. I lie because, as long as I can power through without dying mid-lecture, the truth sounds like an excuse. I’m in pain. I’m exhausted. I just can’t.

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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.

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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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“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?

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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).

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.

magnetism

Razor Poem

Yesterday I struck my magnet while opening my fridge door and felt it shift like an intruder in my flesh. I’ve only had it for a couple of months, after all. There was no noticeable change in my finger, but my nerves were sounding an alarm so loudly my other arm began sparking too, never mind its dead nerves. It kept me up all night but seems to have resettled, even if it feels a little more magnetically sensitive. I’m not sure I could pick up razor blades before, and paper clips are jumping to my finger across greater distances. All of which has renewed my thinking about the relationships between pain and enhancement/capability. I’m sure it means something that a slight tissue injury on my left arm has reminded the dead tissue in my right arm that it can still speak.

I’ve been playing around with Scrivener, which may be the most beautiful powerhouse of a writing tool I’ve ever come across. Thank you to all the Computers & Writing attendees who recommended it to me! The above image displays some of its organizational functions, along with a poem from the MS I’ve imported into it. Once I get around to Ph.D. work, I imagine it’ll be an incredibly useful tool for writing the proposal and dissertation as well.

In other news, my overly ambitious summer plans include streamlining the MS under submission, drafting my proposal, and teaching two courses, one a hybrid and the other F2F. I’ve also seriously fallen off the self-care boat, as tends to happen when I begin writing creatively, so striking a balance between the two may be a lifelong project starting imminently.

And finally, Computers & Writing, as always, was a fantastic conference. I always attend and present expecting to leave revitalized, and this year my faith was rewarded tenfold. More thoughts about the conference forthcoming, once I’ve digested the experience enough. In the meantime, if you’re curious, you can read all about it via the hashtag #cwcon.