My first diagnosed seizure occurred in the cockpit of a Navy T-34C Mentor, on a formation flight over Pensacola, Florida. I was 23. Another pilot flew ‘lead’ that day, and I was the ‘wingman,’ which meant I flew by staring straight at lead’s plane, judging distance and spacing by markers on the other fuselage and by constantly adjusting altitude, airspeed and direction to stay in formation. We flew tucked in close, less than ten feet away, wingtip to wingtip. We were practicing a ‘turn-away,’ a maneuver where, on signal, the lead would bank sharply away and I would follow instantaneously and in synch, maintaining tight spacing throughout the manuever. Lead’s orange wing was so close to my cockpit that it seemed almost reachable. I don’t remember a signal from the other pilot. I don’t remember his plane turning away. All I remember was coming to, his descending wing drifting rapidly away in the hazy sky, and the bellowing voice of my Marine instructor screaming at me over the intercom. Something about me being ‘fucking nuts.’
(You can read the abstract of my case here, in an article published by the flight surgeon who diagnosed me upon landing.)
I recently started re-reading The Pugilist at Rest, by Thom Jones, a collection of stories I read during my first semester at VCFA. The titular story deals with the training of a young Marine during the Vietnam War. The narrator goes through boot camp in San Diego where he assaults an abusive recruit-classmate with a rifle butt. The narrator then ships off to Southeast Asia, survives a ferocious battle by faking his own death and receives medals for false heroism while the real hero lies dead on the battlefield. The narrator returns from the war and struggles with reintegrating into post-war civilian life. We learn that Jones’ narrator suffers from epilepsy (as did Dostoevsky, as Jones himself does) and the story ends with the narrator preparing for an operation on this brain to help alleviate the symptoms of his disease.
The story has an odd structure, with scenes interrupted by historical and philosophical intrusions (about Greek boxers, Schopenhauer, Dostoevsky, etc.) The eponymous pugilist is supposed to be Theogenes, a gladiator and Greek boxer who fought his opponents (to the death) while chained to a stone.
There’s a long passage in Jones’ story about the aura of seizures. He’s thinking about his own disease and about Dostoevsky. As a person who’s had epilepsy for almost twenty years and experienced far too many of these auras, I found this passage to be uniquely compelling:
“The peculiar and most distinctive thing about his epilepsy was that in the split second before his fit—in the aura, which is in fact officially part of the attack—Dostoyevski experienced a sense of felicity, of ecstatic well-being unlike anything an ordinary mortal could hope to imagine. It was the experience of satori. Not the nickel-and-dime satori of Abraham Maslow, but the Supreme. He said that he wouldn’t trade ten years of his life for this feeling, and I, who have had it, too, would have to agree. I can’t explain it, I don’t understand it—it becomes slippery and elusive when it gets any distance on you—but I have felt this down to the core of my being. Yes, God exists! But then it slides away and I lose it. I become a doubter.”
In my experience, the aura sneaks up randomly—there are no precursors, no triggers that I can identify. It feels like the most intense déjà vu imaginable, beginning as this prolonged sense of recurrent action, almost like a vivid memory. In those weird seconds as the aura passes from something subtle to something more sinister, everything that’s happening—every sight, sound and sensation—seems to have happened before in the exact same order and sequence. And here’s the kicker for me: the future feels predictable too, as if I know exactly what will happen next. Then the aura shifts, and rises into a more and more intense, almost crippling feeling as the déjà vu spreads and becomes more pronounced, mixing with darkness, with a sensation of fear and gloominess. In “The Pugilist at Rest”, Jones describes this as the “typical epileptic aura, which is that of terror and impending doom.” But these darker sensations blend in delicately for me. As loopy as this may sound, as I experience the aura, it feels life-altering, epiphanous, expansive and eerie all that the same time. It’s both terrifying yet inexplicably peaceful.
I feel no panic in these moments, just dread and calm mixed together in an unmixable cocktail of lucid emotions that take over, then, almost as quickly, let go.
One of the more vivid of these auras happened to me about two years ago. I was running on a deserted road in Spain (where I was living at the time). The run felt normal and I ran that road a lot. Nothing seemed off-kilter or indicative of any somatic disturbance. Then I noticed the beauty of the trees along the road. This sounds like bad poetry, I know, but that was my first sensation: “Man, those trees look beautiful.” And the sun shone brilliantly, and the sky appeared crisp and bluer than I’d ever seen it. The asphalt road bent around to my right and a guard rail separated the road from a low wash filled with reeds. The moment felt dreamy, but entirely sensuous too. Like hyper-reality. Seconds later, overcome by an intense emotional feeling of having lived through this exact experience before—the trees, the reeds, blue sky, sunshine, pavement and the curving guard rails—a wave of physical symptoms hijacked my body. My knees went weak. I began to sweat, then my body went cold, then started sweating again. I felt nauseated and light-headed. I knelt down along the side of the road and tried to shake it off. There was the oddest feeling that something dramatic was about to happen, something almost indescribably sad but predestined, too. Jones’ dread and doom here. Then the aura simply receded. The sensations passed completely in a minute or less, and all that lingered was a slippery sense of uncertainty over what had just taken place. I even managed to finish my run. As if nothing had really happened.
I would not, like Dostoevsky or Jones, trade ten years of my life to re-experience these auras. Though I agree about their ‘slipperiness’, their ‘elusiveness with distance’, I’ve experienced them enough times that I do not long for repeat performances. The auras I’ve experienced (and the seizures that sometimes follow) have not triggered any great religious awakenings in me. I heard no voices of the gods, saw no window into heaven or hell. To my knowledge, I’ve never been accused of being possessed by a devil.
And I’ve been lucky. Medication seems to manage my symptoms quite well. And while it hurt intensely to be told at twenty-three that I would never fly again, I can look back at that moment (even at the screaming, cursing Marine instructor!) and feel thankful that my seizure happened when it did, and not out at sea or on final approach into the pitching deck of an aircraft carrier.
A long time ago, I read all of Dostoevsky’s works. I became obsessed with his novels and stories and the critical work on him. I’m proud to say that I even managed to read all 5 volumes of Joseph Frank’s incredible biography of the Russian author. Few writers have a more compelling life story than Fyodor Mikhailovich Dostoevsky. He suffered intense anxiety over his epilepsy, constantly afraid that it would strike him at any moment. These were the days when epileptics were closely associated with mental patients, whereas now there seems to be a more clinical, medical sensibility about the disease (as, quite fortunately, there is about most types of mental illness). Epileptics were shunned from polite society and confined to mental hospitals. I imagine Dostoevsky worried that his disease would ruin his writing career. Of course, his disease went almost untreated in the nineteenth century. For Dostoevsky though, the attacks were often portals into his fiction. This has never been the case with me. I’ve never even written about the sensation before now.
Epilepsy has been called the “Sacred Disease.” It’s long been associated with demonic possessions and spiritual visions. Paul of Tarsus was said to have suffered a seizure on the road to Damascus which he took as a religious vision. Muhammad may have suffered seizures; Joan of Arc, Joseph Smith. I imagine that a religiously inclined person might feel some ineffable divinity in those moments. I do not, but I can’t fully convey or describe what they do feel like.
I didn’t get up this morning to write about any of this. I wanted to offer up some of what I’d been reading and seek suggestions from others on NC about good reads for the upcoming holidays. Funny how these things work. Toward the end of Jones’s story, he says this:
Good and evil are only illusions. Still, I cannot help but wonder sometimes if my vision of the Supreme Reality was any more real than the demons visited upon schizophrenics and madmen. Has it all been just a stupid neurochemical event? Is there no God at all? The human heart rebels against this.
(All quotes are from The Pugilist At Rest, by Thom Jones, 1993)
Tight piece of writing, Rich. Moving, informative, and extremely well written! Love it!
Really compelling, Rich. You led me to look up gelastic seizures, a kind of seizure I had never heard of (nurse that I am). No wonder the marine instructor thought you were “fucking nuts.” Kudos to the flight surgeon, too. I read that collection of short stories when they first came out. That book burst onto the literary scene; the stories felt like stories that had never been written before. There was nothing familiar about them. Recently, I reread them, too, and found them just as fresh. Thanks for this.
A remarkable piece of writing, Rich. Quite gorgeous in its unassuming directness and lack of sentimentality.
A tremendous post, Rich, and thank you.
This is what good writing does, what you and Jones have done, take us somewhere we have never been and make us richer for the experience.
If I had to make a list of ten stories, “Pugilist” would be on it. The emotion, the sensations, the pushing of the moral and aesthetic envelope, yes, but it’s also his references to the past, to philosophy, his speculations, his mind that make this story sing.
Beautiful, but haunting. Anything neuro atypical hits very close to home with me for many reasons. Thank you for sharing.
Rich, thank you so much for posting this. Fascinating, rich in sensory detail, and interesting weave of literature, biographical detail, and quotations. I liked reading this.
Thanks for the kind replies. In an interesting post script to this story, this summer in Slovenia one of my residency friends and I were talking about my weird medical history. She told me her dad was a neurologist and that he probably knew what type of epilepsy I had. She called him from the restaurant at the Skojcan Caves and he told her that not only had he heard of my type of seizure disorder, but that my case study was actually a question on his Board Exam! I believe the cliche, ‘small world’, aptly applied in that moment.
Hi Diane! Great to see you here!
Fascinating, Rich and so well written. I remember the incident in Skojan too. Small world and growing even smaller.
Makes me think of one of my favorite memoirs–Lying by Lauren Slater, in which the author may or may not suffer from epilepsy. Check it out if only for the stunning descriptions of the pre-seizure aura.
I’ve come here to Numero Cinq for the first time. Read your essay Rich. It’s wonderful. I have a four year old boy who had a febrile seizure when he was two. This piece made me realize what he must have gone through. Thank you.
Thanks for reading and commenting. I hope you keep coming back to NC…we have a terrific little community here.
Sorry to hear about your son. Hopefully the seizure he had was a one time event. Again, thanks for reading the essay!