15. The Author Is in Pain

Video credits: Fredrika Thelandersson and Sara Fuller. AR credit: Emma Leigh Waldron.

A Tamil woman delivers a creative-critical performance in a white classroom at the 2015 Affect Theory Conference. She wears brass jewelry, mustard-yellow skinny pants with zippered ankles, and an unstructured black blazer, which she removes to reveal her black shirt is open back, exposing her black-ink tattoos: a panopticon diagram, a front-facing female body chart (with red accents), and a cosmic ouroborus. Behind her, a mounted monitor plays a video of the same woman in a ratty Queen band t-shirt and black sweatpants, undergoing bodywork. She turns her back to the audience. Using an augmented reality app, a white woman audience member scans the body chart tattoo with her phone camera, revealing a photograph of the same tattoo with FMS trigger points and psoas muscles painted on in blood.

Not pictured: Jack, seated in the audience, watching impassively. The Ph.D. advisor's is a disciplinary gaze intended to produce and cultivate an academic subjectivity willing to pursue neoliberal academia's institutionally desirable goals through conventional, quantifiable means — to embrace the illusio of the field (Cannizzo, 2015, p. 207; Bourdieu, 1992/1996, p. 228). Under this gaze, my performance suggests artistry, perceived within the hard and social sciences as the residue of premodern irrationality, opposed to routinized, professionalized rigor (Rhodes, 2015, p. 290).

In the ER in 2014 and the space of this conference presentation, I must decide to cater to or cross the interpreter's expectations. Deviations can be deadly. My advisor is thrilled by them, but this isn't typically the case.

Note: I delivered this presentation before I formally decided to write this dissertation. Coupled with Jack's approval, it helped me finalize that decision. As a media artifact predating my proposal defense, crafted in the immediate aftermath of my emergency appendectomy, it's an adi, a strike in the multiple directions signaled by this medical crisis.

To better integrate this piece into the whole dissertation, I've made bracketed annotations in the audio transcript below.

Close your eyes. No — close them. I want this to hurt you the way you're hurting me.

My appendix perforated in 2014. It may have begun as early as March, when I sweated through a night of cramps and went to a GI specialist the next day, who told me I looked fine, my stomach felt fine, speculated it was pancreatic in origin because "You'd know if it was your appendix. The pain would be overwhelming."
For my affectively dysregulated body, this meant nothing.

The appendix is only 10cm in length and commonly becomes inflamed. Its removal is practically a throwaway procedure (Cox & Sovak, 2015; Kothadia et al., 2015). Mine swelled through August before it finally ruptured, on the first day of the fall semester, stretched to the pelvis, plastered to pubic bone. I have the drawing the surgeon [Dr. Sattva] made for me, post-op, a kindergarten scrawl more patronizing than his first words to me in the operating theater, "I was wondering the whole surgery, what did you do to your thighs?," before so much as a how are you feeling.
I am not feeling. I am contrived emotion, all the time, when I say, "Good, and how are you?"

[In retrospect, with increased objective distance, this wasn't condescension, but a pedagogical attempt to bond.]

In September the pain was overwhelming, but only for two days. I rewrote my will. I phoned my mother to say, "I'm dying, I love you." I never vomited. I shit everything but blood. My temperature hung steady at 97.7. By the third day, I had plateaued. I was the usual, a circular saw spooled in guts and whirring, putrefaction shaped like a leg. I told my mother, "See, I told you. Nothing but breakthrough pain. I told you I could tough it out."
I must have gotten this idea from somewhere, that it's only liars and the stoic who survive.
My mother said, "I can't believe you didn't go to the doctor when it began."
When even in the ER, I looked too well.

Experience made me anticipate this. I wore a Queen T-shirt and sweatpants, and a male doctor [Mitch] heard me out and told me, "It's probably pelvic inflammatory disease," and to my response that I wasn't sexually active, "Are you sure? Are you sure you couldn't be pregnant?"
Later, a different male doctor brought his team of students to crowd around my bed and listen to him speak convincingly about the possibility of constipation, until I said, when asked to recount my pain, "It's periumbilical radiating to the right lower quadrant, with no noteworthy increase on palpation except for McBurney's sign, accompanied by dizziness, confusion, lack of appetite, and generalized pain. I hold degrees from Dartmouth and Columbia and I'm pursuing a doctorate, and if I don't speak to a surgeon in the next 10 minutes, I'm walking out."
How clinical. How quickly he backed down. How this should not have required Ivy Leagues and fluency in medical jargon, when the radiologist who did my initial intake described my CAT scan as, "Your pelvis looks like a bomb went off. How are you even standing right now? And you said this started a month ago? It's unbelievable."

Translation: you look too good to be telling the truth (Dolmage, 2014, pp. 35-47).

The CAT scan is unreadable, so I'm wheeled to the basement by two men who speak over my body and not to me. I've seen this horror film before, this dark pocket of a room crowded with cryptic screens, empty hallways zigzagged with abandoned, disheveled gurneys. I'm told it could be a reproductive issue; I'm here for a vaginal ultrasound. I am claustrophobic in stirrups. The technician, an older Latina, is stroking my hand and the hollow of my ribs and it dries me to salt and cinders, but I want to fall into her arms, the same way I seek embraces on the subway from strangers kind enough to let me cling, or lean, or cry.
The radiologist [Dr. Tamas] is South Asian, my age, absorbed in her screens when she says "Okay, breathe" and pushes it in, and I, who stand accused of doing this to myself because I never show my pain, I scream, and she says to the screen, "That's strange, I can't see anything," and I am cringing up the gurney as far as the gurney allows, I say, "I have chronic pain, I need a minute," and she says to the technician, "I need her to be still," and to the screen, "What is that, I can barely see it," and to the screen, "Doesn't that look strange?," and to the screen, accusing me, "I'm not sure any of these images are going to work."

Showing, not showing. I can't win, can I (van Dijck, 2005).

I taste vomit in my mouth when she pulls the camera out. I only keep breathing because the technician squeezes my brittle hand all the way to the elevator and tells me, "Don't worry, miss. You'll be all right. I promise."

It goes without saying I survived.

This is the tradeoff mandated by the confusion of affects, the bait-and-switches of the body, the forced misinterpretations of a brain addled by constant, chronic pain. That the pressure of her touch stayed like hot wax on my skin, but as long as it lingered, I felt I could be human.

In your worlds, I feel less than that. I have fibromyalgia. Note the use of have, as though I own it, instead of it possessing me, instead of shadow and silent nurse, abreast of each other by turns in a relay race neither hopes to win (Hedva, 2016). [Hedva: "In Cree, one does not say 'I am sick.' Instead, one says, 'The sickness has come to me.' I love that and want to honor it" (p. 6).]

I have tried and failed to explain with words how my body betrayed me in September, after it made me spend years learning its lexicon, in which facial tingling and partial blindness translate to a stiff neck and nothing more; a seize in the heart that knocks me down, merely chest wall pain; stone and coal in my gut, a restricted psoas; forgetfulness, disorientation, slowness, fatigue, the cognitive lapses particular to brain fog. Doctors assess my clothing and my voice and humor me with a stethoscope and a write-up for B vitamins and I have no other recourse but to match medicalized affect, too.

This attitude, it's not exclusive to the hospital.

If this is my normal, how else can I interpret the circular saw? (Scarry, 1985; Sontag, 1989)

Wherever I go, I inhabit rooms thick with the telepathic exhortation be well, compelling me to mask a chronic pain that can't be cured, to fabricate understandings of pain as it should be (Chen, 2014; Siebers, 2004): that razor cuts or a snapped rubber band physiologically relay to the brain something undesired, when both have served as my DIY relief, when once in high school, I soldered wires to my finger unawares and my teacher said, "How did you not notice, what's wrong with you," but no, what's wrong with you, that this is how we talk when we talk about pain, the language of victor or victim, weapon or wound, and superficial looking, when there are better ways to see my pain than this, when there could be other, better ways to know? (Daniel, 1984; Scarry, 1985; Trawick, 1995; Hedva, 2016)

You can look now. Open your eyes. See how I pass as one of you.

My name is Vyshali Manivannan, and I'm presenting on invisible pain, intensities, ocularity, language, and the medicalization of affect, is how I'm supposed to begin, with a Powerpoint behind me instead of this, my own private pain. I am supposed to whittle my scholarship to sanitized safety, because who among us, myself included, wants to spend days refining their prose about pain, if writing about painful things is wont to invade the body? (Gibbs, 2008) Who desires the painful work of reading it? Of having to give it that long, hard look?

I'm supposed to stand here at the podium in my blazer and pumps and show you how sharp I am, how coherent, how put together (Bourdieu, 1984/1988). You wouldn't know from looking that one month ago today I had to lace myself with narcotics just so I can stand. You wouldn't know from looking how I have to blunt my signals to meet your telepathic insistence that, if I don't, I will never be one of you.

You don't need to speak to tell me who I am supposed to be.

I am supposed to be an invalid, a super-crip soldier, a hypochondriac fabricating pain for attention (Dolmage, 2014; Barker, 2005; Wolfe, 2000). A woman with fibromyalgia, a constant condition of chronic pain marked by at least 11 out of 18 points, which are called trigger or tender, depending on who you ask (Goldenberg, 1999; Smythe, 2009; Harth & Nielson, 2007; Berkowitz, 2015). Note the inescapable metaphors of weapon and wound, how I struggle to overturn them, only to revert, desperately, because I have no other way to make you understand (Scarry, 1985).

There has to be another way.

Whatever you want to call those points, I had 17 when I was diagnosed, in 2007, even though I started my search in 2006, after teaching a class partially blind with half my face numb, I was wearing an outfit similar to this, recounting my symptoms to a Columbia psychologist [Dr. Hunt] who assessed me with her eyes and said, "But you look so well, there can't be anything wrong with you."

Is that how I look to you, standing in front of you, on the screen behind me?

That's what I wore to the hospital to offset the stoicism I can't seem to turn off, but I'll never be able to manipulate my appearance enough (Garland-Thomson, 2009).

The rheumatologist who diagnosed me [Dr. Birnbaum], the first doctor I could trust, told me: "You're a bright young woman with ambition and creativity and a conventionally desirable body. I'm sorry. No one is going to believe you."

She said: "I hope you're not seeing anybody because sex will always hurt you."

She said: "Chronic pain is an endless masquerade. It's authentic, but the only way you can convey it as real is by faking your lived interiority" (Siebers, 2004).

Blame my high threshold. I've had to feign frozen shoulders to obtain physical therapy for real ones, limp onto subway cars so when I say, "I have a condition; could I please have a seat?," I'll project the right affects, and you will swap out projecting lying malingerer for pity the subhuman, and I can't complain if I'm seated for a hundred-plus blocks but I think it's you setting me up to fail.

Look at me. I look like one of you, the thinkers, the theorists, who don't need sheets of paper to read from like I do, because your mind will not fail you and I transcend impostor when I admit to you the unthinkable, that affective dysfunction compromises my brain, that I am an academic of unsound mind. I trip over precipices in your worlds, abruptly bereft of the ability to process what students, professors, advisers are saying, what I am saying, because our work requires a wholeness of grasp, a comprehension made impossible by brain fog (Chen, 2014).

In your circles I have to mock myself to play along, making faces and cuckoo signs, blaming lack of sleep, an academic standby we can all get behind, except less than 8 hours for me means my brain stutters and my tongue flaps rootless in my mouth. I have forgotten words like hardware, undermine, committee, door. I've become adept at synesthesia and description, any tactic to evoke the thing without revealing how compromised I really am. Like the woman behind me, intimacy and pain unfiltered, artist or scholar, crip time or normate, forced to live in your fast, hard world, while I am a snail in quicksand.

I can't keep up. I have learned to move with my temporal shifts, the impossible longness of one more block on rubber legs, the rainy days gluing my joints to my bedsheets, or time standing vertically on the motion of my psyche, when I submit myself to my therapist's empathetic gaze to relearn movement. These time experiences, born of pain and frustration, undesirable, are when the writing wells up, and uninhibited speaking, as no amount of sensory management will let me escape and I am forced to dive inward to my core (Bochner, 1997; Kuppers, 2014; Jowsey, 2016; Samuels, 2017).

You can see how safe these [Sara's] hands are, you can glimpse the pain they inflict. See how little I grasp of my own bodily memory: how to stand, how to balance, how to extend my arms above my head, my realization that I can't. How to move my ankles. How to take a step forward and back. How my eyes pivot in search of a biogram, those maps of kinesthesia, proprioception, bodily memory of movement that refuse to come (Massumi, 2002).

It happens every day, but look at my disbelief.

Horizontal, I go blank. Expecting to die under hands I trust to remake me. Trusting that if I cannot speak she [Sara] can read my signals, be they muscular, biochemical, telepathic (Dumit & O'Connor, 2016; Schleip et al., 2014). We both know this is an exchange of pain, witnessing, caring. I know, unlike you, she knows what to look for.

I know this is all you're looking for.

In front of you I am staging myself, unable to predict when I can match your pace but reliably preprogrammed, overwritten with your voice, while the woman behind me dives, and I show you this despite my shame to suggest that the crip time of pain is generative, able to erect bridges between our bodies and psyches, to create a shared touchstone that goes beyond the first layer of appearances to something you too can inarticulately feel (Blackman, 2010; Scarry, 1985).

I'm fumbling towards this, that pain can be both undesirable but desirably generative, that because of these senses I don't want and can't refuse I have habituated a kind of social cunning, synesthetic perception, constant becoming; that bringing intimate private pain into the light of day is a move towards political participation, insisting on transfers you'd otherwise skirt (Fortunati, 2015; Metta, 2015; Sheppard, 2018). But I feel stupid all the time, complicit myself for rejecting my own cognitive fluctuations because I feel you repudiate the student who can't think, the professor who powers down, the human who can't balance these hard, fast worlds (Kuppers, 2014).

Look at me. I can't even balance myself.

You say without speaking, "What did you expect? This is academia" (Patsavas, 2014).

If you want the truth, this is it.

You are not inculpable.

I almost died because I did not listen to my body, because I am so used to listening, because I am so used to silently feeling you. This sick culture. As with depression, the lieutenant of pain, the result of pathologizing the subject who can't measure up to the state's demand for a sovereign individual, defined by agendas, projects, consistent production, because she lacks energy, imagination, sheer will (Morris, 2000; Cvetkovich, 2012).

Or, what always goes unsaid, that depression and self-injury came first, and the rest I did to myself.

Unlike my appendicitis, unlike the tumors and chemo fog of cancer, fibromyalgia is everywhere and nowhere, takes everything as its symptom (Barker, 2005). This is the closest I can come to approximating its location, the way I manage in the privacy of my home, the slow, steady work of survival, surrendering to touch and psychological attunement between bodies that you can choose to evade, shielding yourself with pity, sympathy, encouragements that always boil down to Well, you look great! and if I'm playing along all I can say is, Thanks, it's all an illusion, though, to which you politely laugh (Cvetkovich, 2012).

I am so tired of playing along.

I blunt myself because of you, performing this because it's what you expect: body-and-mind, implicitly split when it comes to knowledge production, instead of the messy clump of co-informing sensory processes that act as one, the bodymind [uyirmey], which acknowledges how pain ruffles the brain, disrupts the ability to think, to recall, to know, to create (Price, 2015).

How can I be one of you, if this is who I am?

After all this, if I asked, would you touch me, make yourself complicit in a way you can feel, in the way I desire, even though your voices are fireworks on my skin, even though I have performed podiatric surgery on myself to correct a surgeon's error, with a razor and a lighter and no anesthesia, giddy as all other signals faded to zero? (Scarry, 1985; Ahmed & Stacey, 2001; Manning, 2007; Walters, 2014).

You may always have that doubt, is this compassion or cruelty, but I am sick with longing (Levinas, 1998).

We speak of two distinct orders of events when we compare one person's pain to another's, and when I throw mine in, with its persistent intensities and unexplainable sensory processing and its unpredictable intermittency, a third order arises, in which the undesired becomes standard, the standard a shock to the system, and none of it available to you for sensory confirmation or denial. Pain unsharably in our midst (Scarry, 1985), and no way to vocalize it except as weapon or wound, as female hysteric or masochist, as mentally ill and self-inflicting, as medicalized affect. The scalding, pinching, aching, stabbing. The happy meeting of razor and wrist.

How close I come, you have no idea.

I say this is about looking but looking is bound up in the language of pain, and I want to restore layers to both, attempting synesthesia, provocation, the spectacular reveal, to explain the condition of pain as a world with no end, anterior to language and invisible to outsiders' eyes, when your worlds say voice and vision are doomed to fail, and my body will always be a question mark from which to hang, while death keeps stroking me, finding me wanting, but one day (Massumi, 2002; O'Rourke, 2013). I'll misread the signals I have to misread already just to get by.

I'm not dead yet. I'm relying on your susceptibility. Your openness. Your awareness that there is always more encoded than you are being given.

I am a cartography of signs if you possess the right eyes. If you're ready, if you're willing, let me show them to you now.

You can't see them all but I'm up to seven modifications now, nine if you count the scarifications the surgeon [Dr. Sattva] dwelled on longer than my post-op recovery, 10 if you count the magnet in my finger, which is less an extension of touch than the way I feel atmosphere, thrumming and electric, just enough heft to slow me down (Massumi, 2002; Pitts-Taylor, 2003).

I'm accusing the surgeon but all my physicians react with incredulity, "But why would you do that to yourself?," as though there is one right kind of body and medicine holds the monopoly on interventions into it (Doerksen, 2018). The air thick with the unspoken, And you wonder why you're so unwell.

I haven't said it yet but in the ER, the head nurse coding me into the system saw my scarified thighs and gasped, "Did you do that?"
"I had it done," I said. It was a cover-up for years of self-injury, long since behind me, which I've heard described as an externalization of excess affect or the cause for all my pain. The nurse tagged me suicidal. I protested, threatened to walk out, but she was inflexible until she asked about my panopticon tattoo, and I presented my back to her and delivered the standard lecture I give my classes: that the body is inseparable from the operation of power, and physicality is an object of control (Foucault, 1975/1995), and when I turned back around all the nurses had gathered, nodding, and the head nurse was quietly erasing the suicidal tag.

I want to say something to validate this experience, like this is the proof that though I am banished to the world's limits vision and language will not always fail me, and somewhere I can still hope for an embrace. Or if scars are the proof of invisible pain, then these must be speaking all the time, implying a willingness and ability to endure, dismissing the fact that submitting to the needle is voluntary while fibromyalgia christens all its houses feeling this is not a choice.

It was a choice to etch these maps on myself, to make anything of myself visible at all. Foucault's panopticon at my nape, cast in relief due to the artist overworking the skin so that the ink sits on raised scar tissue, the watchman's tower less so than the prison cells around it (Myers, 2011).
It says something, doesn't it, that the symbol of disciplinary power is what proves my body unruly. That the prisoners are more elevated than anything else.

Below this normalizing eye, the supine female body, disallowed affective faciality and incapable of the intensive expressive movements that provoke change and becoming. Wait and see. She unmasks the face as a false signpost, and visibility as the central problematic of the grand unified theory of female pain: that pain that must be performed into visibility ceases to be authentic regardless of its truth (Jamison, 2014). She is not the same braille as the panopticon. She is faceless because she has to be. Under the eye of power, she is psychosomatic; she is not real. She stands on the cosmic ouroborus, the snake that eats its own tail and contains the physical scale of the universe, as though through unification all the connections could finally be laid bare, when we are always partial, anything but whole.
Linked by her red sash to power and eternal return, this woman stands capable of traversing both. She is spiraled in ants that emanate from her core, like the ant mill that army ants sometimes stumble into and can't escape. Blind, reliant on pheromones, when they cross an old scent trail it spells the end. They follow it until exhausted to death. The circle must be disrupted by outsiders if the ants are to survive.

You could say it's the same with chronic pain. How I constantly have to hack a living by reinterpreting the rules (Kelly, 1994 as cited in Parikka, 2010, p. 31), the eruptions and interruptions of signals and processing, which enable me to prove that whatever my body may tell me I can ignore it past the point of fatality, and as much as I stand here accusing you, I know: I am here because of you. Disrupting the circles in which I am so entrenched.

Help me disrupt the rest.

Center the woman in your sights. Let the camera's eye do the looking for you, to show you, concretely, how the signals escape. Slow and tricky as crip time, how you may have to angle it with finesse to trigger the reveal. Hold it still when it's exposed, for even the more authentic image hides a truer one below.

If the problem is that invisible pain is bloodless, here is the problem solved. The fertile wounds you demand to dwell in (Jamison, 2014). The consequences of ignoring the body.

Here are the 18 trigger points of a standard fibromyalgia diagnosis. You get to see them all at once, front points on her, back points on me, but it's not enough, it's never enough, so this addition of the psoas muscles in close-up, smeared on her the way they feel in me, lumbar vertebrae and pelvic floor lusting for convergence in a permanent crippling [cripping] kiss.

The wounds look small, but by now you know: they come from a deep place. Rooted throughout the body. A silent reminder that the medical standards are lacking, that the exclusions tell us more than the inclusions, that maybe I bled internally for a month but I am bleeding, all the time.

Peel it away, and I am bright and capable again, worthy of the gods.
That's the illusion.

Even this is not the whole story, this star system welling up with blood, as if pain itself could seep from the pores. It doesn't need visual confirmation. What it needs is you.

Let me be woundless with valid pain. Let me set my academic metronome to crip time. Let my private pain emerge as something instructive, as whole matrices of feelings able to generate new modes of thinking, knowledge, transformation, joining. Less a story of what bodies in pain are than what bodies in pain can do (Blackman, 2010).

In September, this is what I recorded as my dying request: I wish you would touch me.

I am this gaping wound and empty head that you don't want and I wish you would make your boundaries permeable. Change what your worlds tell me I am supposed to be. Let me in. Let my pain be something you can see, and me a body that belongs.

(–20. Biomedicalizing Fibromyalgia)