He was quiet for a minute as he studied my Twombly, and I told him how the tech and I had just taken the best Bride of Frankenstein photo. He promptly ignored me and said, “Does anyone in your family have epilepsy?”
“Epilepsy? No.” I dismissed the idea with one of those harrumph noises that people make when they’re completely certain that you are an idiot.
I may have had a big seizure a few months ago and some ongoing weird symptoms, but that didn’t mean I had epilepsy.
There’d never been any mention of anyone in my crazy lineage having anything like epilepsy, and if there had been, they would have complained about it nonstop and recommended all kinds of herbs. As far as I knew, my grandparents were healthy motherfuckers who lived well into their eighties and nineties. They said things like “I don’t feel well, George” and then died quickly in rocking chairs. It was all very dignified. There was no rolling around on the ground, no thrashing, and certainly no public incontinence.
“Because you do.” The neurologist’s voice was thick with matter-of-fact medical orthodoxy.
“What?” I looked from the doctor to the tech, who now quickly excused himself.
“You’ve got the genetic signature,” he said, now studying the patterns inscribed on the roll of printer paper.
In that moment, I felt all the air sucked out of that stupid, dinky room. My whole heart pounded off the walls. The malicious octopus was back. Its tentacles wrapped around my head, over my face, encircling my arms and legs. The idea seemed ludicrous, but good health had been my privilege—and privilege makes for blind spots, which can completely blindside you.
The only person I’d ever known with epilepsy was a dorky kid in high school chorus named Ryan. Kids were wary of the skinny kid in the baritone section. His seizures were severe and he’d always smelled a little like pee as a result. He’d had one in front of us once after practice, and I remembered breaking down in tears as a teacher swept in as Ryan’s head hit the linoleum. I saw his eyes rolling back into his head, dark blood foaming out of his mouth from having bitten his tongue, and urine pooling beneath him. As his body shook, I’d never seen anyone so vulnerable. He looked like he was in so much pain. To me, Ryan’s seizure had turned all his private adolescent humiliations into something terrifying and wildly public.
Epilepsy? No, it didn’t make any sense. It was like I’d baked a fork into one of my pies. He had to be wrong. Wasn’t epilepsy a childhood disorder? I’d never had a single symptom. Why now—at age forty? I knew I was juvenile in my general demeanor, but no one in my family had ever mentioned having anything even close to a neurological disorder.
And just because you have a big, starry seizure doesn’t mean you have epilepsy. You could have a brain injury or a virus or a congenital malformation. Plus, wasn’t epilepsy a chronic thing, where people had seizures over and over until their brains were so traumatized that they just died? I’d read WebMD. I’d watched the NFL. That wasn’t me. Suddenly I was feeling the edges of a new emptiness, like trying to imagine drawing a box around the whole universe, but you just can’t.
With sullen resignation, he said, “Chances are no one talked about it. There’s a lot of stigma out there.”
“So, I’m going to have more seizures?” All of a sudden, I was eight again. My voice shrank to that of a small child’s. This couldn’t be right.
“You will, and you need to be ready.” He was making notes in my chart. I couldn’t stand this guy.
“Wow, did you get like an ‘F’ in bedside manner class? Were you sick that day? Because I have to tell you, you are no Robin Williams.” I could feel hot tears welling up. I am not a crier.
You may be thinking that this is the part where the handsome hipster neurologist empathetically places a hand over yours and says, “Don’t you worry, you healthy, aspiring MILF, we’re going to nail this. There are so many treatments compared to twenty years ago. We know so much more about the brain, and we’ve got a fucking dream team here that’s ready to mobilize so that you can still have an amazing, badass life!”
Yeah, he didn’t say any of that.
Instead, he handed me a wad of tissues and spoke a lot of words that cut in and out like a person with terrible mobile coverage. “It means we’re going to try you out on AEDs…antiepileptic drugs…and see what works….Epilepsy covers a wide variety of different presentations….You need to take the drugs consistently and indefinitely or you will seize. The first ones I’m prescribing may make you drowsy, but they are the least onerous. Also…going to order another MRI….You may need to do a walking EEG if…blah, blah, blah…still having auras. Auras, being auditory or visual disturbances before the seizure’s onset….Sometimes, there’s no warning.”
As he continued man-splaining my brain to me, I remember how I’d felt like I’d died in that first seizure. The crawl back to being a functional, nonscary human being had been a complete Sisyphean slog. Now I was looking at a lifetime of multiple, repetitive deaths? Things were already uncertain enough as a single parent. And where I had been singing only a few moments ago, now I was being given a surreal death sentence of living through seizure after seizure that could strike at any moment. I couldn’t put the kids through that kind of thing. Sophie already had a black belt in childhood drama. How many times can a brain spontaneously combust before progressive cognitive decline kicks in and I end up as a root vegetable? How am I not even dead from the last one? It killed me to think that I might be dying on repeat. And to do so over the course of thirty to forty more years just seemed the height of monotonous sadism.
I’d just been on a date with a not-entirely-horrible person—an actually plausible partner candidate. Now my new life partner was going to be epilepsy? Forget Jane Austen’s Mr. Darcy. Forget Colin Firth. This guy “E” was going to be a really terrible, bad boyfriend, like Hugh Grant, one who showed up at all the wrong times when I was at my most vulnerable, only to push me in front of a subway train. And unless I was on medication indefinitely, he was going to keep coming back, again and again, to tell me we belonged together. In that moment, I could feel a cold knot twisting in my gut. Holy cats, I was going to have a seizure simply from hearing about seizures! What the hell was I going to do with all this electricity? And did this have anything to do with that goddamned fence?
“Ms. Jones? Are you listening?” Douche doctor was rattling off a litany of rules and cautionary measures all dealing with sleep, med consistency, stress, and baby-proofing.
I was caught in a riptide of either/or grim thoughts. When you’re first diagnosed with anything chronic, you almost wish for the clarity of a terminal brain tumor. You’re desperate for a finite amount of time and a knowable prognosis. With epilepsy, I could easily live into my eighties. It’s like rehearsing for a play that might take forever to open. Thirty percent of epileptics lived with uncontrolled seizures, so meds might not even work on me. To be stuck so completely in the middle for decades? To be a burden to my family, or worse, my kids? No way. I refuse, I thought. I could feel my heels digging into the metaphorical dirt that is my own hardwired stubbornness. I have the will of Nietzsche and I wanted one option or the other—life before seizures or life not at all—anything but this uncertain electric purgatory. It was a kind of terrifying slippage, the ultimate in-between.
I was going to suffocate. The octopus was viselike now against my ribs and lungs. That’s when the full panic set in. I started to pull at the tight tape still around my head. I had to get out of that coffin room. I had to get back to the office and present a stupid PowerPoint so that I wouldn’t lose my job—not to mention my work-sponsored health insurance. This might be diagnosis day, but it couldn’t be doomsday. Not yet.
8
The Cocktail Hour(s)
COME IN! COME IN! So glad you could make it! Yes, it’s true. I’ve been hosting a literal party in my head for the past seven years. Just as there are many types of seizures, there are
probably an even greater number of drugs, alternative treatments, procedures, devices, and diets now to keep the electric in check. I know some people liken their med trials to a cruel, long-term lab rat experiment, but overall mine have tended to follow a three-part flow similar to an old-school cocktail hour from five to seven in the evening. (Yes, I am trying to lighten the mood here.)
I realize this is somewhat of a ridiculous analogy given that most people with epilepsy are generally supposed to steer clear of alcohol, but indulge me for a quick second. Imagine you are at the end of a very long Thursday. You’ve had your share of fires to put out, various petty crises to avert at work, and so on. At five, you’re sidling up to the dapper bartender in the dark, mahogany-paneled room and he’s tempting you with various artisanal elixirs, but you’re deciding between the sweet-bitter of a Manhattan with its whisky cherries and the cool, crisp tang of lime and quinine that is a gin and tonic. A few small sips into your cocktail and it’s a now a lovely day. You start to decompress. You blossom into funny, charming, and chatty with just a spoonful of sugar to help the medicine go down. The deep relief of knowing you’re not going to seize arrives in a kind of warm, watery, glowing euphoria, an expansive boundlessness like being a bit tipsy but never too much. At 6:00 p.m., your body and brain have started to acclimate to the cocktail. A snarky yet witty remark tumbles out of your mouth. As you reach a cruising altitude of confidence and calm with the meds you start to become yourself again, your pre-epilepsy self. You start to live your life almost like a normal person once more, but then there’s a sharp turn. You have what’s called a “breakthrough seizure” because, even though you’re taking all the drugs, your body chemistry and particular triggers fail to prevent the seizure from happening. Maybe it’s a minor seizure this time—a little jolt—more of a loss of time than a down-to-the-ground thrashing, rattling seismic event, but now at seven in the evening before you break down in tears, before angry vulnerability oozes from your every pore, you realize you need to get yourself to dinner tout de suite—toward the sustenance of a new approach and possibly a new med, different dosage, or add-on drug. And so, you start all over again with said cocktail hour. I became a regular at this, but it wasn’t my first time trying to solve some riddle of myself. Plus, I was fortunate enough not to have meds stigmatized earlier in life.
It started with Joan. After all these years, I can still see the old girl standing half naked at the window before all of Manhattan, the Chrysler building glowing behind her like a beacon in a sea of skyscrapers.
“Please! Anyone who’s interesting at all is on something,” she proclaimed.
Joan possessed a glorious, grandiose Auntie Mame–like quality. Gliding through the penthouse wearing nothing but high heels, black pantyhose, and an industrial-strength slingshot bra that could have easily launched both casaba-melon-sized boobies to the moon and back, she topped things off with a giant, broad-brimmed hat awash in feathers. Why was she dressed like this, you ask? She always seemed to be in the middle of getting ready for something somewhere—a Broadway opening, the opera, or some secret, underground performance at La Mama. A film producer and hat company entrepreneur, she was my boss and mentor, and I truly adored her. Even when she corrected my California hippie grammar and podunk expressions. Example: “There’s no word as ‘anyways.’ It’s anyway,” she’d insist. Or, “It’s different from, not different than.”
I was in my early twenties, that crashing-around phase of life we all go through. I’d been whining about what I should do. Should I go to graduate school and be an absent-minded professor of film history? Grad school seemed like an excellent way of postponing any sort of real decision making. Should I try my hand at writing for film? Should I just see what happened?
I’d started seeing a shrink who wanted to put me on meds for anxiety and depression. I’d always been the neurotic sort, constantly debating with my inner Sylvia Plath in between periodic bouts of weepy incompetence. Still, I’d never thought of going the psychotropic route.
Didn’t most thinking people relentlessly quibble with themselves? Wasn’t agonizing over massive life choices part of what made them massive life choices? Wasn’t it the drama in life that made us who we were supposed to be? Didn’t the big, tough choices merit such conversations? Wasn’t it an important part of being a full person? Maybe Joan had been right long ago. Maybe meds would make the debates in my head more interesting and insightful.
But now with epilepsy, my pillbox looked like a doublewide trailer with the roof flying off in a twister. I was looking at a lifetime of measuring my days and hours in pills. I worried decades of meds would dull my senses and sedate me. Could people on these drugs even focus at work? What if I could no longer dream up pithy ad campaigns? How would we eat? Never mind the fact that I was looking at medication that had pronounced side effects that included deadly, necrotic, flesh-eating rashes, spells of intermittent rage, and insomnia—a common trigger of seizures. I tried to channel Joan in spare moments. How could this be interesting? How would this be helping?
Historically speaking, epilepsy remedies have been a rough ride for those afflicted. From the earliest recorded seizures by the Babylonians all the way through the mid-twentieth century, it seemed a “punishment-must-fit-the-crime” approach to scheming up new treatments. It’s as if they all got together and said, “Okay, let’s take one of the worst ailments a person can have and match it to the worst possible remedy, and let’s see what we can get away with, agree?”
To get through these med trials and arrive at something that really worked would require a willingness to have things fail—to have seizures happen despite all the drugs, nausea, brain fog, weight loss, and side effects. And even if the “cure” itself didn’t work for a while, I might witness some interesting happenings in my head, so maybe I should count myself lucky.
Humanity’s most ancient form of surgical treatment, trepanation, was a grisly option for early fore-sufferers coping with epilepsy. As far back as seven thousand years ago, the practice of drilling holes into the skulls of patients was a common means of curing seizure disorders. Indeed, researchers often speculate that this gruesome form of brain surgery first came about as a tribal ritual and method for releasing evil spirits from the afflicted person’s head. Archeological records suggest a fairly decent survival rate with many skulls showing signs of complete recovery, indicating that patients lived for years after the event—sometimes having the procedure performed a second time later in life and again surviving.
In ancient Greece (before Hippocrates) epilepsy, known then as the “sacred disease,” was thought to be an illness resulting from an offense to the moon goddess, Selene. The afflicted would offer sacrifices, seek expiation, and take part in religious rites involving spending the night in her temple in an attempt to be cured.
Supporters of Hippocrates, the Greek father of medicine, believed that epilepsy had physiological origins rather than spiritual and attempted to treat the disease using humoral pathology: the theory that bodily fluids or humors were the primary drivers of health and wellness. The treatment was based on dietetics, or a structured, “sensible” lifestyle. This therapy was based on three pillars: dietary regulations, the regulation of excretions, and physiotherapy—so a moderate diet, keeping hydrated, and exercise. In addition to dietetics, early medicines, which were plant and mineral based and include copper, played a first, albeit minor role in controlling epileptic seizures.
In the Middle Ages, however, epilepsy was no longer considered to have physiological causes but was rather thought once more to be the work of devils, evil spirits, and demons (“morbus daemonicus”). As a result, therapeutic methods also reverted back to the spiritual realm of prayer, fasting, offering sacrifices, making pilgrimages, or undergoing exorcisms.
People turned to several saints for direct help or prayed to them to intercede with God on their behalf. Many sacred, devotional objects were used to combat epilepsy (treatme
nt using the saints and sacred objects: “hagiotherapy”). After the plague, epilepsy was the disease with the most saints who were “responsible” for providing a cure, and the most important one in Germany was Valentin (probably because of the similarity of his name with the German words for “falling sickness,” which is fallsucht, and “don’t fall down,” which actually sounds out as fall net hin or Valentin).
Beyond plain old exorcisms, the early clergy also held that epilepsy indicated the presence of highly contagious demons within the afflicted. Church leaders believed that if a person afflicted with epilepsy either breathed on or touched a healthy person, the demons would in fact spread to that healthy person in the same way as the flu or the bubonic plague. To prevent such airborne contamination, healthy people who had come in contact with epileptics were required to spit on them immediately, preferably in the eyes, which probably resulted in the poor person with epilepsy not only being completely grossed out but also now really getting properly sick with the latest cold virus—above and beyond already having seizures. Super. Just super.
Sixteenth-century doctors took a slightly more mystical approach and frequently prescribed extract of unicorn for the treatment of epilepsy, which of course doesn’t exist. Native Americans and early settlers also used a tincture of what’s known as False Unicorn, but in the end it was only found to be effective in treating worms and fevers. During this period there was hardly a plant that was not used to treat epilepsy. The most important plants were valerian, peony, mistletoe, mugwort, thorn apple, common henbane, belladonna, foxglove, bitter orange, and Peruvian bark.
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