Epilepsy is a chronic illness and disability characterized by recurrent, unpredictable seizures. Epileptic seizures are transient events during which people lose control over all or parts of body-mind function. This can result in the rhythmic twisting of a person’s wrist, sudden inexplicable feelings of joy, or involuntary spasms of the whole body. Since antiquity, epilepsy has occupied healers, philosophers, physicians, and scientists, who have, at different times and places, variously believed the condition to arise from divinity, possession, depravity, genius, contagion, humoral tendency, pathophysiology, and psychopathology [24]. As recently as the late nineteenth century, epilepsy remained a contested object between neurology and psychiatry due to “the inaccessibility of the nervous system” [8:24] and because it lacked any visible traces that could be examined post-mortem.

The development of the electroencephalograph (EEG) in the early twentieth century resolved the debate over epilepsy’s origins, becoming routine “especially in epilepsy diagnosis” [9:638] and placing the condition “firmly within the discipline of neurology” [7:616].

The EEG is a device modeled on the electrocardiogram (EKG) that displays electrical activity from various parts of the brain over time. Even today, the EEG continues to serve as “one of the fundamental tools of clinical neurology”[13:522]. And why not: the EEG renders visible, inscribes, and makes legible the live human brain, which, until the EEG’s invention, had been unavailable for direct examination by clinicians.

In this article, I present a vignette recalling my experience of an EEG monitoring session, interspersed with neurological snippets drawn mainly from the Handbook of EEG interpretation (2014), by William O. Tatum, a text that trains technicians to conduct and neurologists to interpret the results of EEG monitoring [23]. I juxtapose my narrative with these selections in order to get us to think about the questions that their intertextuality raises with regard to the contingent, problematic, and productive nature of clinical diagnosis. I use epilepsy as the case study through which to explore these questions because, as one of the first ‘disorders’ known to humankind, the condition served as testbed and proving ground for the rational system of medicine [24]. In doing so, I situate my work in queer, feminist, disability studies and science & technology studies (STS), and use the narrative form and the first person as sites of productive engagement to show that in their engagements with biomedicine, multiply marginalized queer and disabled people must tread the borderland between unquestioning acceptance and utter refusal [18].

Vignette: EEG Monitoring in Bombay

It is a hot summer day in Bombay, India. I am laying, face-up, on a not-uncomfortable flat surface in an air-conditioned room in the EEG lab of Bombay’s Bhatia Hospital. I’ve been referred by my neurologist for a short-term monitoring session, which, thankfully, does not require me to go without medicine or sleep, which such monitoring sometimes mandates.

Yet, I was unable to sleep anyway. After spending two semesters away from Bombay, sleeping in sound-proof graduate housing in Ann Arbor, Michigan, I found myself overwhelmed by the noise: stray dogs barking at the night, sparrows chirping at the sun, construction drills and cutters whirring all day, and cars, buses, and trains going on their merry ways. All the sounds, colors, and activities of city life that had once felt as though they ran through my very veins. I was already sleep-deprived from the recently-concluded school year and stressed about upcoming fieldwork; after two semesters of near “normal”, things had escalated, and the complex partial seizures in my left hand and leg had become uncontrollable, on the verge of morphing into generalized seizures.

“While there is a kernel of truth in many of our patients’ fears about seizures, it is a small one. The intensity and extent of patients’ concerns exceeds what is warranted by medical evidence.” [14]

Two precious months I’ve spent at home, unable to sleep, unable to step out, unable to do anything but seize. Terrified of my own city.

“Collodion is a compound used to secure electrodes during prolonged recording techniques. Paste used for routine recordings is more temporary.” [23:5]

Behind me, the EEG technician carefully applies collodion or perhaps the surprisingly nonspecific paste, a white, waxy, glue-like substance to each electrode, before parting my hair and attaching the small round conductor to my scalp. Each time, I feel a fleeting cold, trickling sensation upon contact, and a slight pressure as the electrode is pushed into place. I learn that collodion is white, waxy, and glue-like afterwards, while bathing, trying to get the damn thing out of my hair.

After attaching the electrodes, the technician turns off the lights and recedes into the darkness. In a calm, assured voice, he tells me to relax. He then instructs me to open, and after a brief pause, close my eyes a few times. Every opening and closing of the eyes “blocks,”[23:31] i.e., brackets, isolates, captures, and inscribes the rhythm of the alpha wave in my brain.

“The alpha rhythm is the starting point to analyze clinical EEG. … During normal development, an 8-Hz alpha frequency appears by 3 years of age [and] remains stable … into the later years of life.”[23:31]

The technician’s instruction to relax when opening and closing my eyes makes no sense until I realize that through these most mundane of actions and without being told, I am making visible the developmental normalcy of my brain (or indeed, its deviance from the norm).

“A quiet patient, controlled setting, and a qualified technologist are the foundation to minimizing the amount of artifact.”[21:S14]

I’m told henceforth to keep my eyes closed; ideally, I’ll fall asleep. But I’m lying in a strange bed, my feet too cold for comfort (despite the thin blanket covering them), sensing my aunt’s anxious presence in the room. I can hear the hum of the air conditioning, voices of the hospital staff going about their work in the next room, and the occasional, startling telephone ring.

“Environmental artifacts may be quite elusive. They may often not be readily identifiable or correctable. … Some may be generated by high frequencies produced by nearby electrical machinery not connected to the patient. … Telephone lines may interfere with EEG and produce an artifact.”[23:30]

Tell me, Tatum, is the EEG showing the electromagnetic interference from the telephone line receiving the call; or the receipt of auditory signals sent by the sensory hair cells in my cochlea – inner ear; or the anxiety that the startling ring of the telephone in this quiet air-conditioned room produces in me; or the heightened brain activity (which might later come to be seen as a seizure) that fear and anxiety are known to produce?

Tatum doesn’t say, and perhaps he cannot, for “Artifacts are intertwined with epilepsy. … They may beguile the interpreter into misidentifying waveforms … [or] obscure the recording during … seizures.”[21:S12]

Blinking, bone defects, chewing, static electricity, headaches, pacemakers, and alternating currents can all be mistaken for seizures.[21] What makes these and the telephone ring “artifacts” is the knowledge that normal brains also react this way. Artifacts thus reveal both the real and constructed [5] nature of the seizure: yes, a seizure is a real biochemical phenomenon of the brain, but the criteria for having a phenomenon classified as a seizure are constructed through neurological knowledge-making practices, and enacted [15] through the practice of EEG interpretation.

I am unable to fall asleep, after all. As such, my body is unable to seize. The technician will have to try to make it do so, i.e., to explicitly trigger or stage [11] my seizures.

“Activation techniques are a useful part of EEG in clinical practice and represent various types of stimuli or modalities that are able to trigger abnormalities.” [23:43]

First, the technician tells me to continually breathe in and out very fast – to hyperventilate – for a short period of time. This is more or less okay, though the heightened breathing does nothing to help my anxiety. The EEG and the technician himself act as modest witnesses [6,19], dutifully recording and annotating both the hyperventilated brain activity and my body’s refusal to seize. Then I’m told to relax again for a while. But I’m already tensing up for what I know is, but hope against hope is not, coming next.

“Photic stimulation produces potentials exquisitely time-locked to the frequency of the intermittent light stimulus. … Distances of less than 30 cm from the patient are used to optimize the effect of stimulation. Flashes are very brief, and delivered … for approximately 10 sec.” [22:45]

The technician does this once with my eyes closed and once with my eyes open. I don’t seize but I hate and feel scared throughout every exquisitely time-locked moment of photic stimulation. It’s like having a camera flash repeatedly very close to your eyes, while you’re trying desperately not to remain calm. It’s shocking to me that each photic stimulation is only ten seconds long. They seem to go on forever.

Concluding remarks

“This is a normal EEG. It shows no evidence of neuronal hyperexcitability or focal features.”[1]

On an intellectual level, I know that the whole point of the EEG is to faithfully record and represent my seizure, an uncertain event that clinicians are typically unable to witness in person. That is, the EEG is meant to make available an immutable mobile[11,12], so that I won’t ever have to seize again in future (or so the medical argument goes).

But I don’t want to seize, especially when it might turn into a generalized seizure. I sometimes wonder if part of me works extra hard at these times to ensure that seizures don’t happen. The part of me that univocally considers the lack of seizures a good thing – a part that is stuck in the mid-to-late nineteenth century. A part that has been taught to value the “hearty, rational, masculine” actor who is “insensitive and impermeable” to the environment [17]. This part of me is especially discomfited by seizures — my epilepsy is idiopathic, i.e., of unknown etiology, as are 60% of diagnosed epilepsies [25]. Moreover, there is no way to escape exposure: there is no known germ or microbe that one can avoid in order to prevent epilepsy.

In the case of EEG monitoring, this anachronist part of me finds unlikely comrades in my queer and crip subjectivities. Indeed, their complicity in the refusal to relax (and seize) is non-innocent [6] and situated [5]: haunted perhaps by the involuntary confinement, sterilization, experimentation, and ‘live exhibition’ [4:35] of queer and crip kin long past, they have a complicated relationship with the two-pronged curative imaginary of the medical complex.

This two-pronged curative imaginary consists of two things: first, a future-oriented imaginary that demands sacrifice now in exchange for a better future (e.g., “seize during the EEG so that you and others like you won’t have to seize in future”). And second, the alluring present possibility of palliative care (e.g., anti-seizure drugs) [2,10]. And so, for now, I take anti-seizure medication and get EEGs done when asked to, but almost never seize under monitoring.

Living with epilepsy is an exercise in becoming intimately familiar with contingency on a chronic, nonvisible, fluctuating, lifelong basis – seizing only “sometimes” [16], but with an “enduring predisposition” [3:477] to do so. By staging my seizure – or lack thereof – I aim to highlight that while epilepsy involves suffering and palliative care is helpful, the seizure (and by implication epilepsy) is both real and constructed: that in the process of diagnosis, a particular bodymind is placed in relation to particular objects, actors, procedures, and environments; but then compared to universalist and ahistorical neurological standards so that the bodymind can be labeled normal or deviant. And even those of us who would rather resist this classification often give in, because being labeled deviant comes with advantages: access to necessary palliative care.

Notes

[1] My EEG report from Bhatia Hospital dated July 30, 2016.

Works Cited

[1]      Bright Brain Centre. EEG and Brainwaves. 2019. http://www.brightbraincentre.co.uk/electroencephalogram-eeg-brainwaves/.

[2]      Clare, E. Brilliant Imperfection: Grappling with Cure. Duke University Press, Durham, NC, 2017.

[3]      Fisher, R.S., Acevedo, C., Arzimanoglou, A., et al. ILAE Official Report: A practical clinical definition of epilepsy. Epilepsia 55, 4 (2014), 475–482.

[4]      Hacking, I. Mad Travelers : Reflections on the Reality of Transient Mental Illnesses. University of Virginia Press, Charlottesville, Va, 1998.

[5]      Haraway, D. Situated Knowledge: The Science Question in Feminism and the Provoledge of Partial Perspective. Feminist Studies 13, 3 (1988), 575–599.

[6]      Haraway, D. Modest₋Witness@Second₋Millennium.FemaleMan₋Meets₋OncoMouse: Feminism and Technoscience. Routledge, New York, 1997.

[7]      Jacoby, A. and Baker, G. Introduction: Tracing the recent history of the “falling sickness.” Seizure – European Journal of Epilepsy 19, 10 (2010), 615–616.

[8]      Jacyna, L.S. and Casper, S.T. The neurological patient in history. University of Rochester Press, Rochester, NY, 2012.

[9]      Jefferys, J.G.R. Advances in understanding basic mechanisms of epilepsy and seizures. Seizure – European Journal of Epilepsy 19, 10 (2010), 638–646.

[10]    Kafer, A. Feminist, Queer, Crip. Indiana University Press, Bloomington, IN, USA, 2013.

[11]    Latour, B. Give Me a Laboratory and I Will Raise the World. In K. Knorr-Cetina and M.J. Mulkay, eds., Science observed: perspectives on the social study of science. Sage Publications, London : Beverly Hills, Calif., 1983.

[12]    Lynch, M. and Woolgar, S. Representation in scientific practice. MIT Press, Cambridge, Mass., 1990.

[13]    Millett, D.E. Hans Berger: From Psychic Energy to the EEG. Perspectives in Biology and Medicine 44, 4 (2001), 522–542.

[14]    Mittan, R.J. and Locke, G.E. Fear of Seizures: Epilepsy’s Forgotten Problem. Urban Health 11, (1982), 40–41.

[15]    Mol, A. The body multiple: ontology in medical practice. Duke University Press, Durham, 2002.

[16]    Peters, S.L. Having A Disability `Sometimes’. Canadian Women’s Studies 13, 4 (1993).

[17]    Roberts, E.F.S. “Exposure.” Theorizing the Contemporary. Cultural Anthropology website, 2017. https://culanth.org/fieldsights/1152-exposure.

[18]    Samuels, E.J. My Body My Closet: Invisible Disability and the Limits of Coming-Out Discourse. GLQ: A Journal of Gay and Lesbian Studies 9, 1–2 (2003), 233–255.

[19]    Schaffer, S. and Shapin, S. Leviathan and the Air Pump: Hobbes, Boyle, and the experimental life. 1985.

[20]    St Pierre, J. Distending straight-masculine time: A phenomenology of the disabled speaking body. Hypatia 30, 1 (2015), 49–65.

[21]    Tatum, W.O. Artifact-related epilepsy. Neurology 80, Issue 1, Supplement 1 (2013), S12–S25.

[22]    Tatum, W.O. Normal “suspicious” EEG. Neurology 80, Issue 1, Supplement 1 (2013), S4–S11.

[23]    Tatum, W.O. Handbook of EEG Interpretation. Demos Medical Publishing, New York, NY, USA, 2014.

[24]    Temkin, O. The falling sickness: A History of Epilepsy from the Greeks to the Beginnings of Modern Neurology. John Hopkins Press, Baltimore, 1971.

[25]    World Health Organization. Epilepsy: Fact sheet. 2018. http://www.who.int/mediacentre/factsheets/fs999/en/.

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Megh Marathe is a PhD candidate in the School of Information and Program in Science, Technology, and Society at the University of Michigan, studying the clinical diagnosis and lived experience of epilepsy. Megh conducts ethnographic fieldwork at a large midwestern hospital, observing trainee neurologists learn to diagnose seizures using electroencephalography (EEG). As a critical disability and science studies scholar ready to critique the neurologists’ every move, Megh found careful, hard-working, and highly-trained doctors working individually towards “zero seizures, zero side effects” and as a discipline “towards a world without epilepsy” in hopeful service of patient-centered care (goals that are often shared by people with epilepsy). As a person with epilepsy trained in computer science and engineering, however, the EEG itself — a device with solely confirmatory diagnostic power, porous to artifacts of social and environmental origin, and originally developed to detect parapsychological phenomena, but which instead helped strengthen the biological pathology of epilepsy — and its active use and infrastructural status in clinical neurology (and beyond) both fascinates and frightens Megh. Their work has been presented at annual meetings of the Society for the Social Studies of Science (4S), Society for Disability Studies, Canadian Disability Studies Association, and Nordic Network on Disability Research; and published in top human-computer interaction venues. Megh is supported by a dissertation grant from Microsoft Research and a public scholarship grant from the University of Michigan.