Still, after Dostoyevsky’s seizures, the world’s foremost epic novelist would often lose his memory and in the days following he would describe himself as feeling completely torn down and wrecked. His mental condition was also despondent postseizure: he could scarcely overcome his anguish and hypersensitivity. The nature of this anguish, in his own words, was that he felt he was some kind of criminal, that he was weighed upon by bottomless shame, by a fierce and wicked crime. I recognized this dread so palpably, so concretely, it terrified me. I’ve heard other epileptics talk about their self-loathing. This dread made me feel legitimately crazy and conflicted. How could anyone ever love me as a spaz? It made me want to live quietly, invisibly, and wisely—no late hours, no drinking, no stress, no excitement, and no heated emotions or passion that might start my fits. I would be a boring girl in order to avoid the repeated self-loathing. Wait, how was this me again? I’m not quiet. I am a loud, smart aleck-goofball-idiot.
What was also inspiring for me was how Dostoyevsky managed to make use of his auras and his seizures. Some of the most compelling characters in his novels are epileptic. Both Prince Myshkin in The Idiot and Smerdyakov in The Brothers Karamazov feel notably autobiographical and grounded in the writer’s own experiences with the condition.
Prince Myshkin provides perhaps one of the richest literary characterizations of the seizure. Dostoyevsky also portrays how people with epilepsy are often viewed and treated by the culture at hand—isolated, freakish, and judged as less capable or intellectually disabled. In his depiction of Prince Myshkin, the writer also paints a striking picture of the emotional life of those who witness and respond to seizures. Prince Myshkin feels almost Christlike or saintly in that his emotions and intellectual capabilities are so compromised by his electrical episodes. Isolated from society by his condition, which is referred to as “the idiot’s disease,” the reader bears witness to the extreme stigma associated with the illness.
At the opening of the novel, the reader sees Prince Myshkin returning by train to Russia after a number of years in a Swiss hospital, where he was being treated for a peculiar malady of the nervous system—a type of epilepsy, with convulsive episodes. Prince Myshkin also shares with his fellow travelers that he hasn’t ever learned a great deal from the Swiss experts about his disorder. I knew how he felt—for me it was the same.
In one passage, Dostoyevsky describes a rapturous sensation preceding one of Prince Myshkin’s seizures:
He was thinking, incidentally, that there was a moment or two in his epileptic condition almost before the fit itself (if it occurred in waking hours) when suddenly amid the sadness, spiritual darkness, and depression, his brain seemed to catch fire at brief moments….His sensation of being alive and his awareness increased tenfold at those moments which flashed by like lightning. His mind and heart were flooded by a dazzling light. All his agitation, doubts, and worries seemed composed in a twinkling, culminating in a great calm, full of understanding…but these moments, these glimmerings were still but a premonition of that final second (never more than a second) with which the seizure itself began.
Dostoyevsky wrote The Idiot between 1867 and 1868, a time when he was experiencing significant financial and emotional stress. He had embarked for Western Europe with his wife, traveling amid various cities to seek treatment for his epilepsy and escape his debts. During his travels, the writer suffered an increased amount of grave seizures, which many around him believed were due to the stress of his poverty and fragile emotional condition.
In one his journals, Dostoyevsky recounted how he “was a long time unable to speak,” usually a week, while another diary entry related that he still made numerous errors with the words when writing. These mentions of impaired speech, cognitive function, and sequencing following his seizures also felt hauntingly familiar.
What struck me most in reading these accounts was the bevy of intersectional factors in play—gender, class, education, neurology, heredity, biology, psychology, and politics. On the one hand, it sounded like another mirthless narrative to be disabled and dealing with chronic mental and physical illness that left Dostoyevsky cognitively impaired and suffering from extreme emotional highs and lows that came with his condition. On the other hand, while he sought out cures, endured hardship and destitution, and was even exiled to Siberia for his political beliefs, he still managed to salvage joy and inject deep meaning into his life. To empower characters like Prince Myshkin and to create the level of awareness of the condition felt profoundly heroic to me.
I was curious to understand how he also seemed to navigate cunningly the implication of moral failing that’s so often associated with those individuals dealing with chronic physical and mental illnesses. Dostoyevsky’s path seemed to carve itself through the act of creating, the act of storytelling, but without the theme of overindulgence attributed to epilepsy at the time. People tended to see the condition as a result of gluttony for experience: emotion, imagination, appetite, lust, and so forth, that set all the right conditions in play for a perfect storm to occur in one’s brain without warning.
In the face of my diagnosis, I knew I would need to learn to navigate some degree of stigma, to trust in my comically broken brain, listen to its cues, and follow its lead. While my seizures seemed largely unprovoked—there were certain things that didn’t seem to help matters: strobe lights, airplanes, too much time on all the different activities, and lack of sleep as indicated by my three days as a cyborg. And much as I dreaded seizures, I sometimes tempted fate. There’s an allure to the velvety, black serenity of them. So, I’d get careless and stretch myself too thin across the various fronts of my life. It’s the Enjoli conundrum. Bringing home the bacon meant staying up for two days straight that week working on a new commercial for my bosses. Frying it up in a pan meant baking a Tiffany-blue box cake, being snack-mom at soccer practice, organizing a sleepover for ten girls, and breaking things off with a grammatically challenged, not-so-significant other. Who wouldn’t have a seizure? I woke up in the hospital with an intern standing over me, realizing I’d had a series of fits on a commuter shuttle in front of my entire work team.
At the beginning of an aura (which is something I experience rather than just see—it doesn’t appear so much as it comes over me like weather), I often lose my breath. There’s a moment where my heart goes quiet and a split second when my body senses that it’s about to fall but my brain still hasn’t yet agreed to it. The race to catch myself always feels like a sharp drag on a cigarette, everything shimmering at the edges as I force a slower rhythm to my breath.
I would also need to relearn how to trust my intuition about people, circumstances, and my own neurological limits. Women are especially conditioned not to do this. We’re taught to interpret our instincts as anxiety or even hysteria. If we’re caught listening to ourselves, there’s punishment, judgment, and sometimes all-out exclusion. Indeed, my brain seems to have its own instincts about people, circumstances, and limits, and I often reduce those instincts to anxiety. It’s my go-to response. I am a worrier—the quiet treasurer of the Scared and Paranoid Club. Sometimes your thoughts need a moment to catch up with your instincts. It’s the moment when you know shit’s about to go down, but you don’t know what shit exactly. I used to do this with boys—the bad ones, the ones who are all wit, chemistry, and zero relationship longevity. They made my mind quicken and crackle; I was drawn to them, like a breathless, frenzied little moth, helpless to resist their flame—which was really more of a bug zapper.
My brain needs a grown-up to raise the volume of my superego in those moments. Another higher self or better version of me who will keep it safe from lightning bolts, necrotic flesh-eating rashes, and bad dudes. At the same time, my stern inner monologue needs to be tempered with some kindness.
As a woman, I can be a real asshole inside and out. When do you capitulate to the demands of typical female likability? How sick do you have to be? When do you
need to be extra kind, even docile, speak in a higher, softer register because not only are you sick and therefore needy but also you’re a chick and not an especially easy one to get along with? Are you beholden to a world that might let you stay alive if you kept the uncomfortable things about yourself safely under the radar, if you acted like a deep-cover spy, a sleeper agent in your own life? It certainly wouldn’t be the first time someone tried to mask an illness in order to get by. But what do you do when history depicts your kind only as marginalized and sick? And no one wants to hear or talk about the condition because it’s too much of a downer? What do you do when the routes to agency and subjectivity seem so bleakly inadequate?
Moreover, how do you write about epilepsy in a way that takes it seriously but doesn’t succumb to grim plot points? Diagnosed, lost job, lost insurance, lost home, had more seizures, died. No, I was tired of afflicted female narratives, and I was also tired of the people who were tired of them. I know the “hurting woman” is a common trope in our culture, and I’m not keen on the idea that female suffering has gotten passé; it still really smarts. So, in writing about this very specific kind of pain, even with its extraordinary pyrotechnics, would I be representing a freeing of women’s voices about chronic and mental illness or merely giving folks a small sliver of my experience?
I would be missing out on what felt like acres of time from my life, dealing with side effects, worrying friends and family with each ER stint, and enduring the inevitable crawl back to humanity every time a new medication failed or work put me over the top.
The black-eyed, bruised-body aftermath of each electrical storm my brain endured came with a loss of words, the inability to sequence tasks, the trauma it caused my youngest daughter, and the dread of how much it felt like I had died each time right in front of her. Hearing how she raced down the stairs to the neighbors’ screaming for help. Pleading with friends not to call an ambulance every time I have a seizure. Never mind broken promises to bosses, insisting I had everything under control, ever-new excuses, pretexts, and outright fabrications about why I couldn’t attend this or that function or event. Why I needed to go to bed early. Why I might again be late. Why I should or shouldn’t be allowed to drive. My refusal to be solely defined by a genetic, chronic condition had left me defying it. Could I still thrive despite it?
Yes, my quirky, electric mind had made me who I am; I can forge connections across discipline, thinking laterally, to brainstorm a packet of fifty campaign ideas in an hour. I can read faster than anyone around me. I’m a chain reader, and my recall, my memory—while not photographic but more tonal eidetic or aural—is definitely strong when it comes to copy and content, words and images, and brands. I wouldn’t have traded a seizure-free life to be an ordinary, linear thinker, but I didn’t want the repeat injuries and drama. I just wanted my brain without the side effects.
The shame that accompanied each seizure also came with such an odd combination of euphoria and fatalism. If the lights could go out at any moment, why not just do whatever the hell I wanted and embrace my criminal side? I could make a really dark, V for Vendetta bucket list—full of fury and stealth revenge. I could work it like any system, any game of strategy, pattern, and recognition. It wasn’t as much about playing the victim as it was about taking ownership of my particular brand of wiring, short circuits and all.
Yes, I’d been dealt a wild card, but I’d improvise and play it for all it was worth. So many others around me were also struggling with their own chronic conditions—everything from depression and anxiety to bipolar disorder and more physical manifestations like Parkinson’s, Lupus, and MS—how were they flipping the script of their lives? While memoirist Jenny Lawson wasn’t writing about epilepsy in her book Furiously Happy, I thought her approach of finding humor in the darkest of places—namely, crippling depression and anxiety—might work in my own narrative. She explores her lifelong battle with mental illness amid a series of hilarious essays that not only normalize her condition but also reposition it as its own special gift.
Lawson readily admits that many of her most favorite people are coping with serious issues, but you’d never guess that because they have adapted to dealing with it so authentically that to them it becomes their new normal. For her, being “furiously happy” was about “taking those moments when things are fine and making them amazing, because those moments are what make us who we are, and they’re the same moments we take into battle with us when our brains declare war on our very existence. It’s the difference between ‘surviving life’ and ‘living life.’ ”
With my diagnosis, what if I took a dangerous, unpredictable, neurological liability and asked what if we adapted the world to this neuro-difference? What if we could find light in its darkness? Embrace everything that makes you who you are—the funny and the flawed or differently wired—and use it to find joy in unexpected ways?
It’s hard for me to be prescriptive about epilepsy. First, I’m not qualified. Second, there are probably as many stars in the sky as there are people who want their seizures to stop, forever. But there may also be some who like their brains just the way they are. People who offer up a sense of humor, respect for their own differences, and an alternative voice that allows for myriad possibilities, plurality, and more hopeful outcomes, that is—to quote Temple Grandin—“Different…not less.”
As Dostoyevsky demonstrated, a life with epilepsy (or with neurological differences, for that matter) doesn’t have to be only about “surviving.” It can also be lived with laughs, resiliency, and a powerful, self-determined narrative. If you tell funny stories about epilepsy, about being a spaz, and these stories do their job, readers may look up from the pages and find the “real” world of epilepsy, chronic illness, and neurodiversity more interesting, more human, more multifaceted, and more full of possibility.
11
When Mom Is a Werewolf
“AS FAR AS I KNOW I’ve never eaten anyone…yet,” I told them.
I’d had another grand mal while walking into our kitchen. Sophie told me I’d fallen backward this time, and I could feel the knot growing behind my left ear. I had no memory of this one, but my tongue was swollen where I’d bitten it and was bumpy as a cauliflower.
Etched indelibly on the film of my 1980s adolescent memory was the scene from one of my favorite films American Werewolf in London, where the actor David Naughton (also of Dr. Pepper fame) wakes up totally naked in the park next to a bloody deer carcass. I’d felt like that all the time since my seizures had begun. Always caught out. Without even knowing it, my brain had made me into a disobedient, unreliable shapeshifter, except I wasn’t even governed by moon cycles. Indeed, there are whole chunks of my life—minutes, hours, even days—where I have no idea what I’ve done because of this. It’s a werewolf-ish feeling and accompanied by much postseizure dread and pending regret. It’s that waking phase where I’m vaguely aware that much may have gone down while I was out, and I don’t know—and I don’t know if I want to know it. Yet.
It’s that cringing feeling of, I did what? I said what? How can you regret or apologize for what you cannot remember? Perhaps the same way I had apologized in advance to my kids for all the things that might go wrong in their lives? This felt different, though, because things were actually still going very wrong. While we might have to improvise on the fly at times—meaning a neighbor might have to catch me midfall, or my daughters might need to recount my medical particulars to a stranger or cue me to get to a safe, soft place before a fit—I felt we needed to confront the beast head on. We needed a vivid, funny, and memorable action plan, an overarching, relatable metaphor to contain it all, with code words and protocols, one that satirized as much as it empathized, one that made seizures less scary and reminded everyone that I was still me.
I’ve never been fully present for my seizures, which is fairly common with the condition. Again, there’s the sense of ecstatic peace I feel right before I go into o
ne, the visual fireworks, leading to darkest dark, and then profound disorientation, fear, and confusion upon waking up. I tend to never have any solid memory of the actual on-the-ground thrashing bit. For all I know, I could have marched politely over to the neighbors’ yard and tried to drink the liquid out of their hummingbird feeder. I have no idea about anything I might have said or done. It’s just a black break in the footage of my memory. Even when I try to slow the tape, there’s nothing there.
In a fashion akin to Miss Marple, I tend to gently quiz people after they’ve been through a fit with me. I’ve become used to imagining a version of myself flailing around on the floor, eyes rolled back into my head and crying out as though there is an angry wasp trapped in my throat—all while still being moderately alluring. Charlotte would say, “You always look like you’re having an amazing orgasm when you’re seizing. Your hair looks so good afterward.” Indeed, the “howl” transformation to full fit has been described to me as a cross between that wide-mouthed clicking sound the scary girl from The Grudge makes and a mime doing a “walking-down-stairs” bit behind a sofa where you just go lower and lower with each step because your legs have morphed into overcooked noodles. I usually fall backward when I seize while walking and apparently it looks pretty silly and scary.
There’s actually a real benefit to this method of falling backward because over time, with repeat hits to the same part of the scalp, you get only a bald spot on the back of your head instead of say falling forward and breaking your teeth. A bald spot can be covered ever so much less expensively than loads of trips to the dentist. And I’d planned for kick-ass colorful wigs if I ever got to the bald stage. It was either that or glamorous clip-in extensions.
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