Who’s Seizure is it anyway?

Stories of epilepsy, but whose?
by Jeannette Stirling

What is epilepsy? Most of us will have heard of it: maybe from chatting with friends; maybe in a song lyric; we might have even seen it in a movie; or, perhaps, read about it. Some of us may know someone, or have a family member, with an epilepsy condition. A surprising number of us will be living with an epilepsy. The thing about these conditions is that, on the one hand they’re all still a bit of a mystery, yet on the other, rather common. The other thing is that for all the chat, for all the attempts to define, describe, delineate what it is – or what it isn’t − we still struggle to capture a clear understanding of this thing called epilepsy and, more importantly, what it means.

This blog links to the Coequal podcast ‘Whose seizure is it anyway?’. In the podcast, three folk living with an epilepsy talk about their various experiences of the condition. There are similarities in their experiences, no doubt, but there are also important differences. The key thing about the podcast is that it allows these three to tell their stories of their respective epilepsy experiences rather than have those stories told about them or to them by others. This blog is a contemplation on the language of epilepsy stories. Sort of a narrative version of speed dating in that it covers a lot of ground really quickly. After all, stories shape us. The words used to tell those stories matter.

Stories about those with epilepsy, usually shorthanded as ‘epileptic’, have been circulating in western cultural texts since we figured out how to record our thoughts. According to St Luke, a noticeably impatient Jesus heals a child in seizure by casting out “the unclean spirit”. After returning the healed child to his father, Jesus berates his disciples for being “faithless” and “perverse” in their failure to address the crisis confronting them (Luke 9:38-42). Like, no pressure dudes. For them and future medicos, right? Over the following centuries those with epilepsy continued to appear in popular cultural texts and were usually represented as dangerous or pitiable figures. William Shakespeare drew on epilepsy to highlight the tragedy of Othello’s agonies and Julius Caesar’s vulnerability to treachery. By the 19th century, characters with epilepsy were making regular appearances in the works of writers such as Charles Dickens, George Eliot, Fyodor Dostoevsky, Robert Louis Stevenson, Gustave Flaubert; Samuel Coleridge Taylor and Alfred Tennyson were using the symptoms associated with epilepsy to up the emotional and sensory ante of some of their poetry. Collectively, these cultural stories created an ‘epileptic’ stereotype that still lurks where we least expect it. The ‘epileptic’ emerging from these texts is a transgressive, disruptive, dangerous figure that, by the mid-to- late 19th century when western neurology first began to seriously reconsider epilepsy as a medical condition, quietly meandered into the medical stories.

It’s generally agreed that Hippocrates provided the first western systematic account of the diagnosis and prognosis of epilepsy. Sometime later, the Greek physician, Aretaeus, was metaphorically throwing up his hands proclaiming in frustration “Epilepsy is an illness of various shapes and horrible”. By 1860, Dr Oliver Wendell Holmes, an American physician and poet, observed: “If I wished to show a student the difficulties of getting a truth from medical experience, I would give him the history of epilepsy to read”. Yeah. Truer words. Despite a long and storied history in western cultures, however, when some western physicians began to align themselves with a newly developing medical speciality called neurology, they struggled with a crisis in language when trying to describe epilepsy.

Understandably, perhaps, they turned to the authors, poets and dramatists for inspiration. Dostoevsky’s fictionalised representations of his own epilepsy were so compelling they made it into descriptions of medical symptomatology. But we can’t easily isolate the condition from the individual who experiences it, so some years later neurologists reluctantly concluded that perhaps this experience of epilepsy was particular to Dostoevsky. British neurologist, John Hughlings Jackson, initially looked to Dickens and Eliot for linguistic support but unusually, also listened carefully to his patient’s descriptions. For Sigmund Freud, the epileptic body was the living exemplar of the unheimlich or uncanny: a body both recognisably human and alive but at the same time possessed of unpredictable and unknowable capabilities. The 20th century American neurologist, William Lennox, favoured militaristic tropes to write about what he called western medicine’s “war against man’s ancient enemy”. By the end of the 19th century and well into the 20th this unacknowledged linguistic traffic continued smuggling the aforementioned stereotype further across the cultural borders into medical knowledge systems.

After establishing a visual presence via the growing popularity of medical photography across the late 19th and early 20th centuries, epilepsy became a recurring trope in movies. As in the literature of earlier times, it was used as a plot device or a metaphor to indicate a character’s disruptiveness, unpredictability, potential violence, and, sometimes with female characters, promiscuity. All of these metaphorical legacies are layered into the Australian film, Romper Stomper (1992). The American television series, The X Files (1993-2002), drew on the tropes of epilepsy in several episodes to signify potential connection with the extra-terrestrial, a reworking of older ideas about possession and metaphysical transcendence. In the 2021 American horror movie, Old, it’s used as a visual signifier of escalating disorder and, ultimately, death. While films that attempt to reflect more realistic representations of epilepsy experience are out there (see, for example, Control (2007) and most recently, Avatar: The Way of Water (2022)), the dated stereotypes established by earlier texts and films tend to maintain a narrative grip on our collective imaginations. And they still find ways into medical thinking. In the late 20th century, for example, a doctor walking into an emergency room to treat a child patient having recurring seizures, describes the effects of this medical emergency on his colleagues as “like something out of The Exorcist”. His description of the ‘uncanny’ effect of the uncontrollable seizing body suggests a mirroring loss of control in the medical body, a sort of psychological epilepsy triggered by failure to establish medical domination (and yes, I’m recalling the above quote from St Luke here). In the 2020s, the stereotyped figure of the ‘epileptic’ is notably present in death-metal lyrics and while Lil Wayne and Antony Hegarty go some way in bucking that negative lyrical trend, it remains a tenacious presence in the cultural imagination.

So where are we in 2023 after all these stories about us? Same, same, different? Certainly, we know more about the neuroscience of the brain so yes, some difference there. Medications have improved so maybe different. On the other hand, I’m not entirely sure that underlying medical and social attitudes about those who live with an epilepsy have evolved as much as we might hope, so same, same. Hughlings Jackson, the physician who was trying to understand epilepsy back in the latter half of the 19th century, and the so-called ‘Father of British Neurology’, learned at least in part by listening carefully to his patients. He wasn’t just interested in what the signs and symptoms looked like from a medical perspective; he wanted to learn from his patients what they felt like and how he could best improve living with an epilepsy for them. He concluded after all of his analyses that the term ‘epilepsy’ was, in some sense, obsolete and that physicians should more appropriately use the term ‘epilepsies’ to describe the diverse range of signs and symptoms that have become associated with the disorder. Yet here we are still talking about ‘epilepsy’ as a singularity and ‘epileptics’ as an identity category. Taking a lead from Dostoevsky and Hughlings Jackson, time to take back the narratives I think and continue to tell our stories of what it feels like and means for us to live with an epilepsy condition.iii Stories shape us. Words matter.

The information included in this blog derives from research developed in:

(i) Epilepsy: Myth and Matter, Liverpool University Press; England.
(ii) I am one of the podcast participants.
(iii)For further information about the epilepsies see: Epilepsy Foundation, epilepsyfoundation.org.au; Epilepsy Australia, epilepsyaustralia.net; National Epilepsy Support Service, epilepsysmart.org.au/ness