ALL SHOOK UP
Does the treatment of epilepsy in fiction coincide with its treatment in clinics?
By Jin Paul S. de Guzman
Associate Editor
Works of fiction--a novel, play, or movie--invariably carry a familiar disclaimer: "This is a work of fiction. Any resemblance to actual incidents and people, living or dead, is purely coincidental." But even this assertion of fictitiousness comes with the demand for plausibility, the need to make an audience believe that it could happen--or in the case of historical fiction, the need to convince people that it could have happened. Things become complicated when renderings of real people become a part of works of fiction, or the rendering becomes the subject of fiction itself. This has been apparent in many movies made of famous people's lives.
The paradoxical relationship of fiction with reality and its implications have long been the subject of debate. In universities, whole courses are dedicated to them; various disciplines, even those outside of the arts, have thrown their thoughts into the debate. One of the many specific turns the debate has taken is the treatment--a word loaded with meaning, whether in the arts or in medicine--of epilepsy in works of fiction, particularly novels, short stories, and movies.
Enduring myths
There have been various myths associated with epilepsy, some more enduring than others. Dr. Luciano Santiago, in a special issue of the Philippine Journal of Psychiatry in 2000, touched upon two of these myths in his article, "Rizal and Philippine Psychiatry." Santiago wrote that epilepsy had been considered a "sacred disease" until the 19th century, when it lost its mystique and became a "social disgrace."
"In the Philippines, before the coming of the Spaniards, it was believed that a woman struck by seizures was called by the gods to be a priestess," Santiago wrote. By the 19th century, "most physicians … agreed that the main cause of seizures was self-gratification and sexual excess. No wonder epileptics and their families tried to hide the problem to avoid social shame and moral indignation." Jose Rizal's sister Josefa, he wrote, was one of the more famous personalities who had experienced firsthand the misconceptions rampant in the 19th century.
Some of the early attempts to discredit these myths, however, were done at the expense of other belief systems. Philosopher, psychologist, and medical doctor William James, in his seminal work The Varieties of Religious Experience (1902), discussed how the late-19th-century tendency toward what he had called "medical materialism" dismissed certain "soul-flights" as "'nothing but' expressions of our organic disposition." This was demonstrated with retrospective diagnoses made of such historical personalities as St. Paul, whose vision in Damascus was belittled as the result of "a discharging lesion of the occipital cortex, he being an epileptic."
But whatever the deficiencies of either camp, the medical understanding of epilepsy broadened over the years--without popular understanding coinciding with this broadening. This is most evident with the myth of putting something in the mouth of a person having a seizure--an idea proposed by Guainerius in 1516, rejected by modern neurology, but still strongly believed today.
Dual function--and danger
Besides being vehicles for aesthetic experience, popular art forms--literature to some extent, but more particularly the movies--can do two things exceedingly well: reflect the mindset prevalent in a certain culture at a certain time, and at the same time influence this mindset into changing. While art is not under any obligation to educate its audience or actively influence an audience's thinking, it sometimes chooses to do just that. And even when educating an audience is far from an artist's mind, his work can, and does, do something similar to education.
Epilepsy specialists, who are equipped with the knowledge and experience to educate people about the condition, obviously cannot reach the same audience reached by popular art forms. And so people who may never see an epilepsy patient, let alone an epilepsy specialist, in their lifetime, may already have seen dozens of portrayals of the condition in movies, even at an early age. And so regardless of the fidelity of these portrayals to current medical knowledge, these may be the only things they know about epilepsy. The danger then lies in the event of a real-life encounter with an epilepsy patient, for example during a seizure, and what people may end up doing is what they remember from the movies--which, of course, could be wrong.
Epilepsy experts speak out
The publication of Owsei Temkin's The Falling Sickness (1945, 1971) is one of modern neurology's important steps toward bridging the divide between medical knowledge and popular opinion. Since then various efforts have been made to critically analyze the myths and what brought them about. However, several of these efforts--close dissections of popular opinion in venues the public has no access to--may strike some as ironic, but these have all contributed to the progression of public-education efforts among epilepsy specialists.
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One of the more frequently cited studies on epilepsy in literary works is by Irma J. Ozer (Epilepsia, 1991). Believing that "[l]iterature primarily reflects and affirms existing attitudes and conceptions" toward epilepsy, Ozer pointed out that "for many centuries," people with epilepsy were portrayed as "outside the realm of personal identification--too far beneath or too far above us." They were either possessed by spirits or touched by God; they were either geniuses or social outcasts. The humanization of epilepsy patients in literature, however, began in the 1960s, leading to depictions of "human beings who have epilepsy (rather than who are epileptics)."
Peter Wolf (Canadian Journal of Neurological Sciences, 2000) looked into literary depictions of the human being behind the condition. In his survey of contemporary works of literary fiction, he looked into the "fates of patients," because the "most comprehensive insight into an author's perception of epilepsy is probably given when he creates a character with epilepsy and gives some detail about this person's history and fate." He found that many of those who wrote sympathetic depictions of patients had "some kind of specific personal experience" of the condition. The stories are mostly about how the characters "[cope] with the disorder and [define] their social roles, and the responses of their surroundings to their condition."
The treatment of epilepsy in the movies has also been closely studied. Jennie F. Kerson et al. (Epilepsia, 1999) looked into the depiction of seizures in 20 English-language movies, and found that seizures serve four functions--"a principal character has epilepsy, thus the condition is critical to character and narrative; a seizure is used to drive the narrative; a seizure is used to enrich a minor role; and a seizure is feigned to distract attention from another activity." But whatever the function epilepsy plays in the movie, asserted the authors, the overall "view of epilepsy conveyed in film continues to be distorted, sensationalized, and presented in most frightening ways."
While she agrees to some extent with Kerson et al., Sallie Baxendale (Lancet Neurology, 2003) noticed that "there has been a progressive trend towards more overt depictions of epilepsy," especially with the advent of made-for-television movies, where "epilepsy is not just central to the plot; the films also touch on the everyday lives of people with epilepsy and the problems they face."
The "dramatic potential" of epilepsy continues to be highly tempting" to writers and directors--and so has the allure of old stereotypes. In her survey of 62 movies made between 1929 and 2003 in different parts of the world, Baxendale found that epilepsy is still often associated with "ancient beliefs surrounding epilepsy, such as demonic possession, genius, lunacy, delinquency, and general otherness." She also found a "strong gender bias" in depictions of patients--males "tend to be mad, bad, and are commonly dangerous," while females "[evoke] exotic intrigue and vulnerability." (It was not clear, however, whether Baxendale measured the portrayal of each movie against the body of knowledge available at the time of production; after all, what may be considered a myth in 2003 could be fact in 1929.)
Baxendale admitted that it is "not for the medical profession to dictate or censor cinematic content," and in the portrayal of nonepileptic-attack disorder, it would be "naïve to think that [it] deserves a rounded cinematic representation, after all films are for education not entertainment." Still, she stressed: "A keen eye on these depictions will help us to understand and perhaps combat some of the stereotypes and myths that continue to surround epilepsy."
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