Photo: Jenni C
Photo: Jenni C

Nerve

When I was 21 and working as a camp counselor, I was assigned to mentor a girl named Sylvie.

“You both have epilepsy, see?” the camp director said. “It’ll be perfect.” A crude black protective helmet covered Sylvie’s golden curls. Hazy eyes of topaz peeked from beneath. When she spoke, she struggled. This was not the epilepsy I knew and lived. What had I signed on for?

We must never let Sylvie in the lake, I was told.

That part, at least, sounded familiar. I’d been Sylvie’s age—10 years old—when I was diagnosed with epilepsy. I’d been spacing out, drifting into what we’d later learn were absence (a.k.a., petit mal) seizures. Dad mistook the seizures for inattentiveness and nicknamed me “airhead.” The name stuck. Mom whisked me off to see a neurologist.

In those initial months of testing, between EEGs, I was strictly prohibited from swimming. Too risky, Mom warned. So I lounged poolside in the heat of a Southern summertime, watching my friends do tricks on the diving board. Like any burgeoning drama queen, I picked a theme song for my angst: “No One is to Blame” by new wave pop star Howard Jones.

You can dip your foot in the pool, but you can’t have a swim…
Aspirations in the clouds, but your hopes are down the drain…
Noooo one, no onnne evver is to blame.

My anthem assured me that, whatever was happening in my head, it wasn’t my fault. Did I believe that? Sometimes. In my tender preadolescence, I wasn’t yet savvy to Joy Division’s “Control,” but it probably would have been a more fitting choice. Lead singer Ian Curtis infamously suffered from epilepsy during his short life, which ended in suicide in 1980. (Epileptics, it turns out, are 10% more likely than the rest of the population to take their own life.) Vexed by the way that epilepsy would strike unexpectedly during performances, he coped with a trademark “epilepsy dance”—but remained shamed. Confusion in her eyes that says it all, Curtis sings. She’s lost control.

BAM! Sylvie hit the ground beside the lake, hard, just a week after I was assigned to her.
I wish I could say what happened next, but, as the thrashing of her body and foaming of her mouth reached a fever pitch, I checked out.

This is who I am, I thought as I watched: out of control. Episodes flickered through my mind like an old home movie reel: Here I am at age 9, dropping the ball during the last inning of our championship softball game as a seizure kicked in; here I am at age 15, unconscious on my front porch and surrounded by paramedics; here I am at 18, freaking out my college roommate with a messy grand mal seizure during exam week.

When the camp nurse arrived, she found me bawling over Sylvie’s unconscious body. I had been no use at all. It had been the lifeguard who’d called for help.

Since, I’ve figured this escapist response to be trauma-related. In modern parlance, I’d been “triggered” by Sylvie’s epilepsy, as it conjured my own. Alas, triggering was not a mainstream concept in the mid-’90s. So at the time, I only knew I’d failed at my job. That night, I consoled myself as best I could: by going clubbing with my fellow counselors and getting shit-faced (a sure catalyst for seizures). I couldn’t face the reality that no one—not even me—had known what to do. No one understood epilepsy.

Now, twenty years later, we still don’t, but it is hardly a rare condition. Sixty-five million people around the world and three million people in the United States live with epilepsy. That’s more than with autism spectrum disorders, cerebral palsy, Parkinson’s disease, and multiple sclerosis—combined. It goes untreated or fails to respond to treatment roughly a third of the time, usually among lower-income patients. Epilepsy kills more people annually than breast cancer, yet receives only 5% of the research funding. The medical community has not hotly pursued a cure; this may be because, when it comes to epilepsy, very little control exists. The resulting uncertainty has, over the centuries, not only challenged researchers trying to collect data, but incited a stigma that has only just begun to be erased.

In his 2012 book, Hallucinations, the late neurologist Oliver Sacks wrote, “[Epilepsy] was known to Hippocrates as the sacred disease, a disorder of divine inspiration. And yet in its major, convulsive form (the only form recognized until the nineteenth century), it has attracted fear, hostility, and cruel discrimination.”

Despite those sacred connotations, that stigma has deep roots. In ancient Mesopmotamia, seizures were thought to be delivered by “the hand of Sin.” Later, a child’s seizure was described in the Gospel of Mark as the “spirit of dumbness.” This one biblical story would lead centuries of Greek and Latin priests to teach that epileptics were “demoniacs,” with an “unclean” spirit. This soon snowballed into the idea that epilepsy was contagious, that it could be spread with “evil breath.” The myth of epilepsy as demonic possession was scientifically dispelled in the 19th Century, but the damage had been done. Until 1956, U.S. law required epileptics to get special permission to marry—echoing similar decree from Hammurabi’s Code, the oldest known written law, circa 1754 B.C. Thousands of years of discrimination don’t disappear overnight.

We now borrow from this history when we use phrases like “spaz out” or “foam at the mouth” or “have a conniption fit” to undermine people who are out of control. These seemingly innocuous words are indicators that our society values self-control to the point that we’ll doubt and shame those who fail to command it.

Dr. Sacks, fondly remembered as “the poet laureate of contemporary medicine,” worked tirelessly to research and normalize the quirks of the brain. His work has given rise to the societal consciousness called “neurodiversity,” which offers the idea that neurological differences exist as a result of normal, natural variation in the human genome. It presents the possibility that conditions like epilepsy are not flaws (and certainly not demonic possessions)—just differences. In an article for Fortune Magazine, journalist Katherine Reynolds Lewis claims that “A burgeoning civil rights movement is poised … and it revolves around differences in brain function. Advocates for neurodiversity say that it’s just as critical … as gender or racial diversity.” The idea that people might finally be working to understand neurological differences, including mine, is heartening. Yet the concept of “understanding” may conflict with the very essence of epilepsy.

Epilepsy is like some kind of Sasquatch. It refuses to be captured or fully known. It hides out in different areas of the brain, then shows up differently depending on the part of the brain that is affected. It’s been unpredictable “since the dawn of recorded history,” as Sacks wrote. Over forty types of epilepsy have been identified. In many patients, it is not a disease but a symptom, one that could signal anything from psychological trauma to brain tumors. My own epilepsy has taken at least five different forms. While one of these—grand mal seizures—overlaps with Sylvie’s, our conditions differ. Seizure causes, auras (the body’s precursory warning state), and severity leave room for infinite variety. Understanding epilepsy, then, requires letting go of certainty—something we epileptics do everyday.

My Sasquatch ambushes me when my defenses are down. Sometimes it just lurks and looms, leaving me with migraines for days. Others, it’s more devious. It has me spasm in sharp movements, so that I might involuntarily hurl things across the room. It has me spill coffee on myself in the middle of meetings. It has me unexpectedly fall—once, nearly into the tracks of an oncoming commuter train. It has me lose verbal acuity and say embarrassing things. It clouds my normally sunny disposition with a fog of depression. It makes me forget stuff, a lot. For years, it awakened me to leap out of bed and scream at the top of my lungs in violent nocturnal seizures akin to night terrors.

What is this beast? Sometimes I wonder: Is it evil, after all?

 

The mythology of this affliction does come with a more flattering flip side. Legends abound: Epileptics have visions, a la Joan of Arc or Harriet Tubman. Epileptics can have amazing orgasms, purportedly, like St. Teresa of Avila, due to heightened arousal. Epileptics have unusual insight and artistic sensitivity, like Vincent van Gogh or the pop icon Prince, who struggled with it as a child. I have no desire to argue with any of this. I want to believe that I am chosen. I want my glaring flaw to be deemed “sacred” and not evil, to be immortalized in literature and lore. I don’t want it to be a flaw at all.

In the era of Hippocrates, epilepsy was deemed “sacred,” but Hippocrates believed there might be another explanation. In 400 BC, he authored the first medical assessment of the condition, writing, “People think that epilepsy is divine simply because they don’t have any idea what causes epilepsy. But I believe that someday we will understand what causes epilepsy, and at that moment, we will cease to believe that it’s divine.” It was a noble first crack at explaining the illness, but naturally, fell short. Hippocrates was missing key information.

There is a reason history has assigned a spiritual and sensory quality to epilepsy: Most commonly, it strikes in the temporal lobe, the part of the brain most closely linked with religious experience and visions. The neurologist V.S. Ramachandran published extensive studies on this connection in his book, Phantoms in the Brain. Temporal lobe epilepsy (TLE) might prompt any state from hallucinations and psychic premonitions to hypergraphia (a compulsion to write) and intense euphoria. Fyodor Dostoyevsky, an epileptic, described what was likely his own pre-seizure euphoric aura in The Idiot:

The air was filled with a big noise and I tried to move. I felt the heaven was going down upon the earth, and that it had engulfed me. I have really touched God. He came into me myself; yes, God exists, I cried, You all, healthy people, have no idea what joy that joy is which we epileptics experience the second before a seizure.

I don’t know that joy, because I don’t have auras. I have had many other nebulous symptoms of temporal lobe epilepsy, though—too numerous to name. Generally, like many other epileptics, I am highly sensitive. I reverberate like a tuning fork at the slightest shifts in my environment, seen or unseen. (I sense electromagnetic field where there are cell towers, for example.) I regularly experience “hyperfamiliarity,” so that people I meet and places I go feel thoroughly part of me—as if I’ve met or explored them in a past life. This leads me to the awkward assumption that others I meet feel as close with me as I do with them. Meanwhile, neurodiversity strives to normalize epilepsy—but what could be normal about something so varied, so impossible to pin down?

 

Prior to my encounter with Sylvie, I’d only known two other epileptics. One was Ayla, my friend in high school. Ayla was on stage tap-dancing one day when she keeled over and blacked out. By lunchtime, everyone knew.

I felt for Ayla. I’d had a similar experience back in fifth grade. At dress rehearsal for a school play, I’d spaced out in the middle of the script, missing a few paces. My classmates mercilessly attacked me. I remember them gathering around me, their angry faces way too close to mine. Airhead. Dad must’ve been right.

The difference between Ayla and me was this: She never, ever talked about her epilepsy. She was mortified of her condition. While I wasn’t proud of mine, I was okay with the idea that I might be different. In retrospect, I realize Ayla was savvy to something I wasn’t: the stigma. She knew that those who are different can be harshly judged. Humans are hard-wired to judge.

The other epileptic I knew was my cousin, Jane. Jane has deflected plenty of judgment in her thirty years. She began having seizures as a baby, which is common. Usually, these “infant onset” seizures fade by the time a person is a teenager, but Jane’s didn’t—they worsened. She and I are similar this way, although her condition is more severe than mine. In addition to grand mal seizures, Jane grew up with a kind of petit mal seizures that involved a dramatic flutter of her lashes while her eyes rolled back in her head. She’d have hundreds of them a day. Though seemingly harmless, they distracted Jane from classwork—not to mention everyday conversation. Few friends, teachers, or family members seemed to grasp that Jane’s epilepsy could be at the root of any bad grades or social strain. Jane was (and is) extraordinarily smart and beautiful.

These days, Jane is bedridden for much of the day, stricken with seizures and related migraines. She cannot drive a car. Like a quarter to half of all epileptics, she cannot hold down a job. Yet somehow, Jane is a loving mother of two young, healthy daughters—no small feat, in light of her health. To become such, she overcame the risk of seizing during labor, plus the risk of medication-related birth defects. The children are her gifts, although she does require assistance, and does struggle. The severity of Jane’s condition makes it clear that, indeed, she has a condition.

My own epilepsy, like Sasquatch, is harder to see. Most of the time, mine responds to a combination of medication and lifestyle practices. I have made stress management the center of my life. Sleep is sacred. Yoga is salvation. Hot baths soothe my system. While these acts of self-care might be important for anyone, I believe they save my life. I take it all a step further: I skip excessive social invitations, especially those that include drinking—even though I help run a small winery. I even skip some relationships, where they tax my nerves. A degree of restraint allows me to live a relatively healthy life. Admittedly, it pains me to see peers living with a gusto that I often cannot muster. When I try to keep up with them, my nervous system revolts. Seizures happen. Unlike my cousin Jane, I doubt I will have children. I have a hunch that doing so would drain my energy enough to damage the health of my nervous system. It’s a risk I just don’t want to take.

On my not-so-calm days—my seizure ridden, “off” days—I feel the speculation of peers, coworkers, and even strangers: What’s up with Amy Bess? How come she gets to come to work late? Why does she talk like she’s rambling sometimes? Why won’t she come out to drinks with us? I don’t have answers to these silent questions.

Ayla, Jane, and Sylvie represent a mere fraction of the many variations of epilepsy. What we have in common is that we contend with chaos. But it turns out that everyone contends with chaos. It’s inherent and natural not just to the world, but to our brains. As Newsweek described in their 2012 piece, “Epilepsy: Life on the Frontlines”:

A normal brain is governed by chaos; neurons fire unpredictably, following laws no computer, let alone neurologist, could hope to understand, even if they can recognize it on an EEG. …The definition of a seizure is the absence of chaos, supplanted by a simple rhythmic pattern that carries almost no information.

The world—and our bodies—do not always operate in a neat and orderly fashion. Control is not our default modus operandi, or even our ideal. Thirty years with epilepsy has taught me to accept, even love, this truth. I now live in earthquake country, in Northern California, where, at any time, the ground might shift beneath my feet. This feels appropriate. When the Napa quake struck in August 2014, I was a few miles from its epicenter in my trailer home—a vulnerable and, yes, uncertain place. I was so deeply rattled that I walked from my front step and openly hugged the first stranger I saw, without a word. After taking a moment to check my household, I went immediately to my workplace to check on damages for my employer. I quickly shifted into practical mode—something I do better now than I used to.

Later that year, I was in a toy shop when a child fell at my feet and into seizures. I moved a display from her path. I asked a man to go upstairs for help. I knelt by her side, watching for potential injuries. Soon, her mother arrived and I was no longer needed. My role in helping during the incident had been minor, but still—I acted. I acted far more directly than I did that day with Sylvie by the lake. Quite simply, I wasn’t afraid anymore. I knew not to try and fix the girl’s seizure—but to accommodate it, let it happen, make room for it.

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4 Comments

  • Leslie Lang says:

    Beautifully written and I’m glad I read this.

  • Jane Belle says:

    I love you much, Amy Bess. Your artistry with words mirrors that of my own art. Thank goodness for the fates blessing us both with prodigious talents. I am indeed proud to call you my cousin, and thank you for understanding me. It is a slow thing, but I am gradually digging myself out. This article is such a lovely boost in the right direction.

  • Nikki says:

    Wow! I loved this article, I have petit mal and can relate to how you feel! Thank you for putting your words on to paper and making it okay for all of us sufferers. Brave brave soul!

  • Lorna says:

    Brilliant article! I think you’re absolutely right in advocating a need to normalise neurodiversity as much as gender, race, and sexuality differences. I have a friend with multiple sclerosis, which, like epilepsy, is still not wholly understood. Until she told me about it I had no idea and that really opened my eyes to the importance of raising awareness for disability. Like you said, centuries of stigmatisation still affect our judgement by perpetuating barriers between people. It seems people think of disability only in the extreme, when in reality there is so much variance. Hopefully more things like what you’ve written can gain attention and help people overcome that stigma. Really great of you to share!

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