This public presentation of my dissertation, This is about the body, the mind, the academy, the clinic, time, and pain, was delivered on May 20, 2022 to fulfill partial requirements for a Ph.D. in Communication, Information, and Media from Rutgers University. The text of this talk, with embedded descriptions of audiovisual material, is below. “Video Description” will be abbreviated VD, while “Audio Description” will be abbreviated AD. Sound glitches are intentional. Text that lingers in the frame is transcribed here as well.
Access copy below.
Enna seyrathu? (Performance)
Vyshali Manivannan
Rutgers University School of Communication & Information
May 20, 2022
[VD: The homepage, with the title superimposed over an optic nerve scan. I scroll over the four headings in the fly-out menu and the navigation bar (Home, Back, Next, and Pey Pidichittu). Cut to a patient intake form, modified to fit clinical and academic settings. Under How has the above impacted your ability to, I enter in the following fields: Read?: Prevented it; Think?: Hindered it; Write?: Altered it; Participate in intellectual dialogue?: Today’s verdict pending; Belong?: With this disclosure,; Pass as optimally healthy?: not anymore; What do you hope to accomplish here today?: Receive my degree]
[AD: Opus No. 1, aka the Cisco hold music, used at Duane Reade/Walgreens pharmacy.]
I will begin by simulating the disorienting, interruptive, itinerant, and tangled experience of perusing my dissertation—a multimodal cybertext titled This is about the body, the mind, the academy, the clinic, time, and pain—that autoethnographically explores being a queer Eelam Tamil American patient-scholar with non-apparent chronic pain and fatigue, specifically fibromyalgia, or FMS, and myalgic encephalomyelitis, or ME/CFS. I will end with a more organized discussion of what drove me to this project, why I composed a digital dissertation, and what I ask, argue, and infer throughout. This presentation may reference or depict blood, needles, and semi-nudity; ableist, sexist, and racist microaggressions; medical gaslighting; suicidal ideation; and acts of genocide. The link in the chat contains a transcript and video descriptions for this performance.
[AD: Audio stops.]
[VD: Clicking Done navigates to a 404 Page Not Found, with a blank loading video. Cut to an embedded video of me delivering a creative-critical performance while a video of me preparing for bodywork plays behind me.]
[AD: In the video, I say, “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? Who desires the painful work of reading it? Of having to give it that long, hard look?”]
[VD: A page titled “What the nerves register, we cannot say” with an embedded Spotify playlist and a found poem using lyrics from that playlist.]
Instead, I give you this. My name is Vyshali Manivannan, and depending on the doctor, the cause for fibromyalgia—a syndrome of unknown etiology characterized by chronic pain in the muscles and joints, tenderness at specific sites in the body, fatigue, and forgetfulness—is different.
[VD: A page titled “Syndromes,” with the CDC’s definition of fibromyalgia.]
Psychological distress. Lingering infection. Autoimmune disease. After I am officially diagnosed in 2007 at the age of 24, my rheumatologist tells me that the onset of fibromyalgia as recognizably fibromyalgia might occur due to injury, latent virus reactivation, or intergenerational trauma and epigenetic inheritance.
[VD: A page titled “The GoSL engages appendicitis.”]
I’m lucky. Pain is considered private, subjective, and unsharable. It only took me a year of medical gaslighting and a few thousand dollars to convince a rheumatologist of my suffering, when on average it takes young women like me a decade and a fortune. But during that year, and since…
[VD: Main menu of a visual novel titled There is a reason they call it a theater, depicting palms covered by white fabric. Load game. Choice menu: “Resist” or “Accept.” Choose “Accept.” Text (included in the main text below) appears in yellow boxes over an image of a bed in a darkened room. Anime-style characters appear on either side.]
[AD: Tracks from Nine Inch Nails’ Creative Commons albums Ghosts I-IV and Ghosts V-VI.]
Everywhere I go, the wolves are at the gate. It’s just that you can’t hear them. How many of us have sat in darkened rooms like this, flirting with the edge, because we enter clinical spaces without traumatic skeletal injury on our x-rays, no adhesions on our CT scans, no abnormalities on our MRIs or ultrasounds, no wincing before the physician’s eyes? We are haunted, seen by doctors who don’t believe in ghosts, who fail to see us, and failing, deny us diagnoses, medications, referrals, who say, “If you could walk here, you don’t need painkillers,” “But you look so well, there can’t be anything wrong! Symptoms like these are usually psychosomatic; you need to relax,” “Oh, you’d know if it was a chronic pain disorder, you’d be crying from the pain,” “You’re smart and conventionally attractive. I’m sorry. No one will believe you,” “Some doctors view you one way and don’t want to see anything else,” “You’re too young to have that much pain. There’s a reason we call it a wastebasket diagnosis,” and that reason is that we are cheaper and easier to discard.
[VD: Load game. A gray-haired psychiatrist, Dr. Hunt, appears over an image of an office with a blue velvet armchair and a vase of pampas grass. She says with a bored expression, “Good morning, how can I help you?” Of the choices “Mention my referral,” “Describe my physical symptoms” and “Allude to psychiatric symptoms,” choose “Mention my referral.” Vyshali (not pictured) describes going to the ER, an ophthalmologist, and an NP for her headache. She says: “It hurts to live. I can’t stop sleeping. I have no energy for anything.” Dr. Hunt’s eventual response: “But you look so well; how could anything be wrong with you?”]
[AD: Typing sounds.]
If this was you, would you also choose the most strategic response? Relying on the sovereign power of the empirical gaze of previous medical experts endowed with scientific knowledge and institutional authority that I don’t have—here delivered to the first of many dismissive clinicians—only to learn that I look too well for anything to be wrong with me?
FMS and ME/CFS are non-apparent disabilities that do not appear in lab work or on imaging scans. Seronegative, I always look well. Too often I choose honesty over strategy, even though there is no place in Euro-Western clinical assessment for an embodied, metaphoric poetics of pain.
[VD: Shrink visual novel to reveal a page titled “Closeted identities,” with thumbnails of clothes from my wardrobe, categorized by professionalism and comfort levels. Cut to page titled “Alternative pain scales.” Scroll to a 2×3 manga-style grid I drew as an alternative pain scale. Scroll to a pain scale grid with textual categories and descriptions.]
My pain is never average. My pain is never below a 6. What is it to be a 0 or a 1? What number is the pain of understanding, every time I am confronted by a scale, that 0s and 1s exist and they are not me? Biomedical pain scales don’t understand the irrelevance of 0 to 5 for chronic pain patients; instead, they problematically ignore the multiple dimensions of pain and categorize pain as easily quantifiable, rejecting attempts at complexity or nuanced explanation. Pain must be understood within a patient’s particular sociocultural milieu. The fact that pain scales privilege intensity in their classification system propels the logic of cure and encourages suspicion towards patients whose pain is endless and non-apparent.
[VD: An embedded interactive timeline titled “Linear chronology,” the first slide titled “Vanakkam (Welcome).” It examines pain through lenses of non-Western and ancient Greek cosmologies/histories, modern South Asian and Euro-Western medicine, war, the Tamil genocide, war and trauma. Click through to a slide called “Nadaippinam (Walking Corpse) Pain,” featuring a tweet by @PEARL_Action on the Sinhalization of the traditional Tamil homeland.]
When my appendix ruptures in 2014—later becoming the impetus for this project—I’d lived with chronic pain and chronic fatigue for eight years; my pain is a black hole; and no one believes me. My complaints are dismissed by doctor after doctor as “a fibromyalgia flare-up.” You’d know if it was your appendix, they say. The pain is so bad, you’d be nonfunctional. If you’re walking and talking, you’re fine.
My whole life, I’ve been fine. I’m implicitly taught, locally in my house and collectively as a people, that Eelam Tamils withstand pain. Modern Western biomedicine asks, Where does it hurt?, seeking an objective answer that yields a static and singular notion of disease identity and prognosis, uncomplicated by the patient’s subjective analysis, but a more apt clinical question for Eelam Tamil chronic pain might be, “What happens when you shut your eyes against a bloodletting?” In striving to be insensate, the senses become heightened. If the human body absorbs and reflects the postmodern condition of the body politic, what does it mean that, for all these years, a contiguous Tamil homeland in Sri Lanka has been threatened in all its joints? Rheuma, the flow or great fluxion throughout the body, renamed refugee: an ontological dislocation that finds its twin in chronic pain, similarly inexplicable and haunted, a haunting itself, a body imperceptibly and always on the run.
[VD: A page titled “Where it hurts,” with Tamil names for body parts in the left column and audio files in the right column. Various audio files are clicked.]
[AD: My recorded groans, grunts, sharp gasps, tongue clicks, squeals, pants, and exclamations over my pain.]
I can’t say any of this in Western clinics if I want to be believed, but internal displacement and dispossession are not terrible metaphors for chronic pain and fatigue. Fibromyalgia has been described by patients and researchers as internal disorder, bodily chaos, contingency. In some ways, the vicarious secondary PTSD-induced hypervigilance I never felt entitled to was good training for the experience of fibromyalgia.
[VD: A page titled “The rebirth of sin.”]
In some ways, by saying this, I leave myself vulnerable to the accusation, by laypeople and clinicians who doubt the disease’s validity, that I did this to myself.
[VD: A page titled “I am told it is a genetic predisposition triggered by an illness or environmental factor.”]
I am always making Karna’s mistake before the final arbiters of my professional and medical value, tolerating pain like a warrior when I profess to be an academic. The textbook presentation of appendicitis in nondisabled patients is visibly excruciating pain, incoherence, a hampered gait. The expected presentation of fibromyalgia, a pain amplification syndrome, is also visibly excruciating pain.
[VD: A page titled “Peyththai (Hungry ghost).” Dynamic coronal and axial CT scans of the abdomen are played. Further down, an ancient painting of the demon Kabandha.]
Chronic pain and fatigue set a new context for understanding biomedical technology, like digital pathology and imaging, which expose the intimate, invisible body to the naked eye to rout out pain. In Western clinics, without conclusive medical images—like x-rays, MRIs, or CTs—to corroborate my subjective certainty, I am stranded, alienated from clinicians who point to my “clinically insignificant” scans as incontrovertible evidence of normalcy. The diagnoses offered by imaging technologies transform our corporeal bodyminds into artifacts more legitimate than the spectral presence of FMS and ME/CFS: like charts, symptom and medication logs, images on light boards and screens, or physician notes.
[VD: An interactive text revision game, titled “Hollow me, hollow me, until only you remain.” The player drags text commands to different highlighted phrases to reveal falsehoods, misconceptions, and sexist, racist stereotypes and to replace them with theory and my subjective analysis.]
These forms of capture wield cultural and political forces; they prognosticate and influence medical decisions, even when they overwrite the patient’s self-knowledge of her body with stereotypes or false interpretations to better align with clinical standards of chronic pain, chronic fatigue, and acute rupture. But my fibromyalgia, my appendicitis, my adhesion, all evade visualization. Any discussion of the machinic assemblages that capture my body’s interior is predicated on ocularcentrism and photography, whose technical, aesthetic, and social aspects influenced the emergence, spread, and acceptance of optical apparatuses in the clinic. Machine detection and rendering orders the diagnosis, legitimacy, and treatment of fibromyalgia. Physicians lose us in their visual field when they look at us too directly. When they capture us on film and crow over the achievement, they don’t know what they have in their hands; they can’t fathom the ghost that simultaneously comes into focus and slips the trap of the biomedical gaze.
[VD: A page titled “Seeing is believing–but shouldn’t be.”]
I have privately called this misability, where mis– is wrongness or inaccuracy, often stemming from the perceiver, but not the deficiency or lack signified by disability’s dis-. Self-definition is a compelling framework for the reclamation of the specialized knowledge of chronically pained nonwhite subjects, who exist under intersecting oppressions, objectified in spaces that remain resistant to our reality as we tell it. Fluidity belongs in these categories and in this act of naming as a rejection of the binary thinking that characterizes so many Euro-Western definitions, and as an integration of the ambiguity that is fundamental to the affective life of Tamils and our personhood.
[VD: A page titled “Ten-headed, many-armed.” Scroll down to ancient depiction of Ravana, king of Lanka, and the disabled sage Ashtavakra.]
Obliqueness, indirection, and intentional ambiguity are an integrated part of Tamil culture and enactments of self, found in metaphors and parables that free, rather than firmly fix, interpretive possibilities. An Eelam Tamil aesthetics of experience privileges expressions with a capacity to contain multiplicity, facilitating fluidity and ambiguity. This is embodied in fibromyalgic fascial cunning, a responsive somatic intelligence located in connective tissue, a kind of metis where mistakes constitute desirable action and tactile habit leads to internal interconnection. Fucking up or getting fucked up is a kind of ambivalent prerequisite to this somatic cunning, imperative to its prophylactic habituations of pain and to undoing these stuck postures. As fascia is undetectable on imaging scans, the biomedical gaze sees none of this.
Project Inspiration and Summary (Talk)
[VD: Home page again.]
Hello, I’m Vyshali Manivannan, and I am a non-apparently disabled queer Eelam Tamil American creative-critical scholar. I was diagnosed with chronic pain and chronic fatigue well before entering my doctoral program. During my coursework, I titrated on and off multiple medications.
[VD: Vertical timeline listing a medication name and year and a description of the experience.]
I had imaging scans, biopsies, weekly physical therapy. I strained my shoulder before my qualifying exams and did my oral defense with my arm in a sling. My appendix ruptured and was medically dismissed for months that year as well, and I spent the following academic year recovering from surgery, relearning how to eat and breathe, and aggressively treating the scar tissue with acupuncture.
[VD: A page titled “The art of vital points.” An image depicting me face-down on an acupuncture table with needles in my tattooed neck and back. A woodcut of Chinese meridians. An image of me facedown for full-back cupping. A looping gif of various mudras.]
Through all this, I taught, did administrative work, and tutored to afford my healthcare, and rationed appointments and pills when I couldn’t. I commuted to work, complied with academia’s pressures, conformed to the disciplinary conventions of communication scholarship, cried over my throbbing gut in the bathrooms of SC&I and Huntington House, and performed respectability politics by “passing” as able-bodyminded. I began this program and my dissertation in a position of precarity some time ago, and while I obtained a full-time NTT position in 2018, I finished writing during a pandemic, self-isolating due to my high-risk status, my routine healthcare radically reduced and my usual pain amplified tenfold.
[VD: A page titled “The successful text is not always the one that murders me to protect you” (pending publication in Bodies of knowledge).]
Mine is not the standard, nondisabled graduate student trajectory, and this is not a standard five-chapter social science dissertation. I asked a lot of my committee, my adviser especially, as engaging with a project like this—particularly as it’s being written—requires patience, an openness to novel forms, and faith that a nonlinear, crip composition process will yield a coherent draft. My committee’s support for an autoethnographic multimodal project like this—and for my disabled temporality and crip, queer Tamil ways of thinking—is uncommon in doctoral programs. I’m lucky. I suspect I would not be completing my degree if it weren’t for their endorsement of my work, accommodation of my neuroqueer composition practices, and frequent reassurance that there is, or should be, a space for interdisciplinary, creative-critical digital dissertations like this.
[VD: A page titled “Knitted guts.” An image of a soft sculpture made by my sister Anji, a pink knitted large intestine, light pink with white trim, a dark magenta rectum, and an appendix. The textile is positioned on a watercolor painting I made of a sensory homunculus, headless, with a bloated, red-streaked yellow abdomen and small malformed appendages.]
I arrived at this project in late 2014, as I recovered from an emergency appendectomy that compelled me to rethink my desires and needs as a student and scholar. Between teaching, resting, and rehabilitation, I tried to process what had happened to me, and the more I processed, the more I realized that my research interests had shifted to something more profoundly personal and lived, a set of experiences so common to me that I’d almost forgotten how uncommon they are to nondisabled white people.
[VD: Home page again. I click Next to demonstrate one way of reading this project: linearly, moving sequentially through each kandam. In the lexicon, I click Pey Pidichittu, defined as the spoken form of saying caught by a ghost.]
Having narratives imposed on me. Having my patient-scholar expertise undermined in the clinic on the grounds that I’m not a physician, that I have a “hypochondriac” diagnosis, that I’m a nonwhite, “well-appearing” woman. Having to suppress my misabled ways of knowing, being, and communicating to conform to the formats demanded by the clinic and the academy. Having to perform my chronic illness into visibility to satisfy biomedicine’s ocularcentric imperative. Having to question the validity of my neuroqueer ways of knowledge- and sense-making. Having to insist that I am able to communicate about my pain, even when I am in pain, over and over, because I am typically disbelieved. The clinic wouldn’t believe me, and the academy demanded a charade I could no longer keep up. That these two systems were mutually, even cooperatively hellbent on excluding bodyminds like mine never seemed clearer to me, and with my recent brush with death, the stakes never felt higher.
The ruptured appendix that almost killed me made it increasingly difficult for me to put the mask of normalcy back on, whereas writing a cybertext—instead of traditional academic work that harms me to produce—was relatively frictionless. For one, it allowed me to write in ways that mirror how I think and create: in interactive stories whose narratives I can pore over, repetitively, in search of another ending; in gardens of forking paths whose logic is most apparent to me when their original labyrinthine structure remains intact. For another, it facilitated an immersive experience of the interruptions, boredom, frustration, and joyous revelation that accompany chronic pain. And finally, it allowed me to structure the project in a way that culturally aligned with my knowledge about pain.
[VD: A page titled “Instructions for reading.” Scroll to “Scholarly Preference,” a more or less linear fashion of reading by clicking next, and “Authorial Preference,” a “hopscotch” way of reading by clicking Pey Pidichittu.]
Once I decided that this project was autoethnographic—connecting the autobiographical to the social, cultural, and political—I knew that I wanted readers to work in the registers of fibromyalgia, fatigue, and fog to construct the story via consumption strategies that render the narrative unstable, unpredictable, and emergent, like hyperlinks, interruptive multimedia content, and interactive texts and paratextual materials. As my experience of pain is inseparable from my identity as an Eelam Tamil American with intergenerational trauma, I chose to code-mesh, incorporating the Tamil phrases and terms I heard growing up and sometimes think in; to use parables like the ones that inform my knowledge-making; and to structure the project like an ancient Tamil epic. As I think through and live my experience by traversing and re-traversing it via multiple pathways, I wrote this with more pathways than I can anticipate. Each padalam, or section, is a stand-alone piece, thematically organized into kandams as well, so that readers can choose their own way forward, to their frustration or relief.
[VD: A page titled “Decolonial Praxis.” I click Pey Pidichittu to demonstrate a cybertextual way of reading. Pause on a screencap of Hercule Poirot pronouncing, “A doctor without doubt is not a doctor. He is an executioner.” Pause on an image of Ayurveda Man. Scroll down to show a Google Form for reader responses, and responses from my adviser and my literary agent. Pause on Goya’s “Saturn devouring his son.”]
This is about the body, the mind, the academy, the clinic, time, and pain is a capacious title for a sprawling project. I see these items as inextricably intertwined for the chronically pained subject. It’s difficult to pinpoint a single argument for such a project, which follows a broad set of choppy queries, such as: What can a body do? What language does it speak, or what language is used to speak for it? How does the vulnerability and contingency of/in my chronically pained body echo structural flaws in society and mass culture? How do (mostly) accepted alternative practices, like bodywork, acupuncture, and body modification reconstitute the relationships between body and self, pain and personhood, and client and hands-on practitioner? And by experimenting with the sensory hierarchy, simulating contingency, and intervening with technology, how might we learn to differently and more expansively express and receive articulations of pain typically unrecognized by both medical technology and the untrained human eye?
More specifically, each kandam unpacks a particular relationship between discourses around the ailing body, biomedical technologies intended to render visible chronic pain, and the compulsory able-bodymindedness of academic culture and its writing conventions. Through analysis of discursive artifacts meant to define my post-illness self, such as imaging reports, pharmaceutical rhetoric, self-monitoring technologies, and academic interchange, I aimed to show how techniques and institutions converge to bring the scholar-in-pain under the biomedical and academic gaze.
[VD: The landing page for Adi Kandam, with a tan background and maroon button links.]
Adi Kandam poses a set of research questions and Tamil mythic frameworks, and presents a visual novel about navigating chronic illness symptom onset and diagnosis as a graduate student.
[VD: The landing page for Vali Kandam, with an off-white background and gold button links.]
Vali Kandam examines the affective, rhetorical, and decolonial dimensions of fibromyalgia. It explores Western biomedical definitions and expectations of fibromyalgia, as well as intersubjective experiences of fibromyalgia, which are bounded in their expressions by taste and decency and are more biocultural than biomedical.
[VD: The landing page for Padam Kandam, with a gray background and dark gray button links.]
Padam Kandam asks what it means to be fibromyalgic in an ocularcentric matrix of standardized digital evaluations and technical interventions developed around the notion of pain as an acute, transient symptom and not a condition itself. It asks how measurement comes with morals. How imaging technologies recast the fibromyalgic body as a frontier to colonize and conquer. How the cryptic chronically ill body unsettles and disperses medical expertise. How, and for whom, the world is given form.
[VD: The landing page for Illusio Kandam, with a light tan background and button links outlined in dark orange boxes.]
Illusio Kandam conceptualizes academic work as a game with shifting investments, using Bourdieu’s concept of illusio to explore the operation of symbolic violence on the chronically ill graduate student. The academy is a reproduction machine of class and cultural capital, promoting a specific kind of scholar: one with lightning recall, linear thought, a neutral style of writing, a collegial demeanor, respectable fashion, and a willingness to overextend and suffer in silence. The academic field trains its members to misrecognize a work ethos that perpetrates symbolic violence on all of its members, but especially the precariat, especially non-apparently disabled graduate students, who must cope with academic ableism on top of everything else.
[VD: The landing page for Misability Kandam, with a green background and rounded brown button links.]
Misability Kandam considers how to be a chronically ill Eelam Tamil American, with a cultural propensity for ambiguity, and be biomedically categorized as disabled in a nondisabled/disabled binary, as though there is no slippery third way of being. It unpacks the ambiguity inherent to non-apparent chronic pain and locates somatic cunning in the fascia: as both fluidity and constant bracing, evasion and unmasking, myofascial release and the irascible reformulations of the flesh in response to its environments and productivity imperatives. It proposes the term misability for the set of orientations, skills, and everyday and specialized knowledge born of the nonwhite fibromyalgic standpoint and erased in biomedical diagnoses of disability, which are oriented around external systems of classificatory naming and visibilizing technologies that look for lack and deficiency.
[VD: The landing page for Neethikkathai Kandam, with a blue background and gold links, superimposed on an illustration from The Ramayana.]
Neethikkathai Kandam draws on the rich oral tradition in Tamil culture that legitimizes the epistemic value of lived experience and folklore alongside theoretical knowledge and scientific inquiry. All experiences are the potential basis of parables, and parables make meaning of past and future experience as argumentative, investigative tools, without denying my cultural identity. Parables advocate for learning through interpretation and reconciliation of meaning, not explicit theory and agonistic discourse, asking you to extract meaning from a story that may possess multiple interpretations. My late Appa taught me this, and taught me through parables, when I was young. If things in the story represent something else, what is that something else? As with many chronic illnesses, fibromyalgia inspires in clinicians the attitude that this is incurable but must be cured. Parables inspire acceptance, a disposition towards openness, patience, and decryption that is essential for living with fibromyalgia.
[VD: A page titled “Conclusions.”]
Taken together, this project locates the chronically pained subject in a network of bodies in which fibromyalgic and nondisabled subjects exist interdependently, undermining how popular and institutional discourses frame pain as an unknowable, alienating, and individuating state and chronic pain as involuntarity, a fate worse than death. By attending to the relationships between fibromyalgia and ocularity, particularly in the wake of digitization, it deconstructs individual moments in how the queer Eelam Tamil fibromyalgic woman scholar is perceived and constructed as a failed body, medically and academically, and how she subverts or exploits those constructions. Ultimately, this project aims to emphasize the need to reconfigure fibromyalgic subjects as nonexpendable people, whose disability doesn’t make impossible a dynamic, joyful, and desirable existence, and to replace biomedical logics of cure with the goals of the disability justice movement: care, access, and radical, collective love.
[VD: A page titled “References.”]
Thank you.
