Shaken not stirred: Epilepsy as inspiration

Andrew Gretes
Opinion - Books Wednesday, 26th March 2014

A childhood brush with epilepsy inspired a character in Andrew Gretes' debut novel. It is a condition rarely explored in literature, though several celebrated novelists were sufferers.

Today, 26 March, is Epilepsy Awareness day. The chances are that you probably know someone with epilepsy. In fact, I only learned recently that my own publicist, Ruth Killick, has epilepsy; although, thankfully in her case, the condition is currently being controlled by medication. But even though one in 200 people suffers from epilepsy and it's the most common neurological condition after migraine, it remains remarkably stigmatized and feared.

My debut novel, How To Dispose of Dead Elephants, features a young protagonist struggling with temporal lobe epilepsy. Oddly, this choice of a protagonist is less common than you might suspect. Sure, it's true that a host of famous writers have lived with epilepsy in the past - including such big names as Dostoevsky, Tennyson, and Edward Lear - but the truth of the matter is that the condition itself is far less discussed in literature than, say, cancer, dementia, or autism.

It's interesting to speculate why this might be so. Maybe it's because epilepsy is such a mystery, even to those who experience seizures themselves? One of the metaphors I use in the novel compares accepting one's epilepsy to believing in Bigfoot. Despite the fact that one has never seen one's seizures directly, one is asked by friends, family, strangers, and neurologists to accept their reality based on, well, hearsay and fuzzy photographs.

The protagonist of How To Dispose of Dead Elephants is Stubb Marakas, who, at the beginning of the book, has been sent home from college because his seizures have become unmanageable. I myself had two seizures in high school which I was able to channel in order to imagine Stubb's perspective. My first fit occurred during anatomy and physiology class. Honestly, I thought I had fallen asleep. Granted, it did seem odd that 20 people were suddenly hovering over me when I awoke (who knew napping was so fascinating?), but it didn't take long before I was informed that I had abruptly crashed to the ground, thrashed about, and turned blue in the face.

It's certainly a strange situation for anyone to find themselves in. And if you add to this situation the fact that many people who are first confronted with seizures are also dealing with being a teenager and all the baggage that comes with "coming-of-age" and puberty, what you have on your hands is nothing short of a Yeti.

But I was never diagnosed with epilepsy, and thankfully the seizures never returned. However, my brush with the condition led to my interest in writing How To Dispose of Dead Elephants. The book centres on Stubb and his grandfather - a fictionalized version of my own Greek-American papou (papou being the Greek word for grandfather). For the last dozen years of his life, my papou lived with a shaking disorder of his own: Parkinson's. A challenge which he met fearlessly and fez-first. My goal was to commemorate his memory through a story which stayed true to his resilient spirit, but I wasn't quite sure of how to connect his character with the narrator in the novel: his more reserved and wayward grandson. But then it occurred to me that such a bond could be created if the grandson was struggling with epilepsy himself. The two, Parkinson's and epilepsy: I couldn't help but feel they were eerily related, intertwined.

Recalling my own seizures in high school, I began researching about epilepsy through first-hand accounts, such as the wonderful book Brainstorms: Epilepsy in Our Words. What I found was that epilepsy, despite being one of the oldest disorders to be identified in history, was still deeply clouded in popular misconceptions and stigmas. I think it's safe to say that even Hippocrates would blush at some of the current myths still floating around about epilepsy, such as its "contagiousness" or the supposed "rarity" of the disorder. Of course, that's what Epilepsy Awareness day is all about. Its goal is to rectify such misinformation, one purple article of clothing at a time. As for my own story, it's serendipitous. Seeking to pay homage to the tenacity which my papou had exhibited while living with Parkinson's, I unwittingly discovered a world previously unknown to me, a world replete with the inspiring stories of those who live with epilepsy on a daily basis, a world of unsung heroes and perpetual courage.

Andrew Gretes has published short stories and poetry in various literary journals, including Fiction Fix and The Monarch Review. He lives in Washington DC. How To Dispose of Dead Elephants (Sandstone Press, April 2014) is his first novel.