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

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

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.

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.

we are always asking the world if we do in fact exist.

A while back a friend of mine proposed the following theory: I’m actually a Saiyan, but because my body isn’t taking enough damage in battle to level up as it ordinarily would, it has to take the initiative to fight itself so I can achieve my next power level. I wouldn’t say I’m over 9000 by any stretch of the imagination, but.

But like always I’m using humor to minimize how far this situation spiraled out of control.

One month and one emergency surgery later, I’m healing well and readjusting to basic movement and day-to-day living, and my mood is so improved that I can only think my exacerbated depression lasted so long not because of Lyrica withdrawal, but because for three weeks my body was struggling to inform me that it was dying.

To summarize:

Continue reading

did you forget? this is the drill that will pierce the heavens

Yes. I did forget. In fact, I may still be in the midst of remembering. And oh yes: I passed with flying colors.

It seemed only right to begin with this clip, as it a) continues the Gurren Lagann theme of my recent quals-related posts, and b) it enfolds triumph into the singular traumatic event in the series, which c) correlates to the trauma of the entire qualifying exam experience and which also  d) happened to be the subject of my first real conference paper, which I presented as an adjunct/independent scholar. That was the conference that solidified my decision to pursue a Ph.D.

Note how I keep searching for patterns, even when they don’t matter to anyone but me. It has been my preferred method of sense-making ever since I started attempting to make sense of my vicarious experience of the Sri Lankan conflict, the problem of accepting that I’ve survived something when that something feels like nothing at all.

There’s a connection to be made here too, but I won’t beat the dead horse.

I realize I’m not alone in feeling like the qualifying exam is a traumatic experience, which simultaneously makes it seem better and worse. That is, I’m glad to be in good company, but if we all know this is how it is then why does it have to be this way? Maybe that’s just my natural inclination to dismantle all of the things, including institutional codes. But it’s something I’ve been wondering about. There’s already an excellent post about the experience of Ph.D. feedback here. All I can do here is do my best to build on it given my own experience.

Continue reading

phd candidacy unlocked!

I defended my qualifying exams this afternoon and passed “with flying colors” despite the whole ordeal being a relatively traumatic process. I’m a little more aware of my ability (and limitations) to think and respond under pressure, on medication, and in pain; conference Q&A’s had already taught me that I need time to kick my brain into working, but where conferences seem fairly routine now, quals were terrifying. I’m not alone in this experience, I’m sure, and the point is to teach me to keep thinking, to point me in directions I’d ignored or overlooked, to recognize my shortcomings as well as my successes, and to help me rationalize my choices.

I think the most compelling lesson I learned is that I can no longer rationalize my choices on the spot, and that I will always feel tugged toward the humanities side of things.