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"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 (treatment 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. Later in the Renaissance, chemical compounds also came into more widespread use for treating the "falling sickness." The most important of these were copper, zinc oxide, silver nitrate, bismuth, and tin. Other than sheer faith or perhaps the placebo effect, it's not entirely clear how or why these substances worked—if they actually did. Even to this day, it's not always apparent why one medication works and another does not. Where one patient has multiple AED medications fail without any concrete rhyme or reason, another's life is saved. It's a crapshoot or a party, depending on how you look at it.
Beyond the Renaissance, the Victorians theorized that epilepsy was a side effect of too much masturbation arising from excessive libido and so recommended immediate castration for afflicted males. Mercury was also thought to help control seizures, but more often than not, the afflicted person died from straight-up poisoning before he or she ever succumbed to fits or other related injuries. In one 1892 paper, a researcher claimed that excessive lust and debauchery frequently led to epileptic fits and that a person could self-trigger a seizure simply by eating large quantities of chocolate and listening to love songs. The condition was also dismissed as merely a punishment for morally lax behavior. For a time, Freud hypothesized that certain types of epilepsy were merely a form of hysteria or a personality disorder. This idea of an epileptic personality lent itself to a whole host of behavioral and moral prescriptions. It was not until the second half of the nineteenth century, when people began to learn more about epilepsy and brain function, that drugs were finally identified that did have an effect on seizures. The first two substances that were proven to have an antiepileptic effect and that are still used today were bromine and phenobarbital. The side effects of the latter drug are that it's highly sedative, and this can get in the way of everyday function and quality of life. Today, however, there are more than twenty different substances that can be used to treat seizures, either in combination therapy or as a solo treatment.
Pharmacological advancements aside, the notion that seizures represent a kind of communion or coexistence with the spirit world or with the divine still continues to hold sway in a number of cultures today, so that different religious interventions persist in areas where treatment is less accessible. As late as 1975, Harvard neurologists Norman Geschwind and Stephen Waxman published research based on observations of patients coping with certain types of epilepsy during which they reported that many subjects displayed a high degree of emotionality, fixation on religion as well as a highly detailed thought stream, and an unstoppable propensity toward writing known as hypergraphia. This crockpot of behavioral traits posited that there might be such a thing as an epileptic personality. Over the next ten years, other psychologists appended hostility, aggression, lack of humor, and obsessiveness to the laundry list of characteristics supposedly associated with the condition. By the mideighties, though, neurologists began to question the idea of the epileptic personality altogether. They pointed out that the supposed core characteristics did not appear in all individuals with epilepsy and that many also occurred in a variety of other conditions and disorders. By the start of the twenty-first century, researchers began to agree that only a select set of epilepsy patients exhibited some of these key traits and that curing the personality would not cure the disorder.
What are the neurochemical props of a contemporary life with epilepsy? I weighed the side effects against the disorder itself: necrotic, flesh-eating rash versus ongoing seizures. Which one was less likely to traumatize the kids or a partner? The most unsettling thing was that even my neurologist couldn't entirely explain how the drugs worked, and again, in one-third of cases, drugs didn't work at all, I was told. There was no silver bullet. There would be no "Your Brain...solved!" slogan. That much was clear. My neurologist might as well have been money balling my medical fate in a basement in outer New Jersey. He was a curator of pills. But how would he even be able to identify the constantly changing psychological or physiological drivers behind the condition? "We'll have to check your levels." This would soon become a phrase I detested as it involved regular blood tests to ensure the drugs were present at standard therapeutic amounts known to stop seizures in humans. That said, you could be taking the highest dose and still experience auras or seizures, which, in my case, meant moving onto a new cocktail of drugs.
Trickier still, the various drugs affected different people differently. For one person, a certain drug might result in a miracle of being able to go a whole day without a fit; for another, a tragedy like seizing in front of a bus and dying. And often the very meds designed to save you proved problematic when used in combination. Or the side effects of one drug would leave you needing still other pills to counteract them. One drug to control seizures might result in dark mood swings that then require an antidepressant that might, in turn, decimate your libido. So, then you need something for that. This would then make your partner sad. He or she might need antidepressants thereby perpetuating the cycle of angst and anguish in your household. Meanwhile, the drug to stop your seizures might also be doing a number on your liver. So then, not only is your partner not getting any nookie, now he or she has to donate a hunk of a vital organ as well. I keep waiting for the day when the doctor says to me, "Congratulations Ms. Jones! Your liver is now made of foam," and I have to borrow some liver from Ed or Holly. But it's all done in the desperate hope that one day you might feel well enough (or grateful enough) and want to finally _get it on_ once more, which again puts you back at risk for still more seizures.
With the first AED trial came my initiation into the secret society of epilepsy drugs. Dilantin is an anticonvulsant barbiturate that works by slowing the brain's impulses. For me, it felt like walking around tipsy all day—as if I'd had a very strong Cosmo. It came with a creeping low-grade headache. I didn't mind the floating feeling it gave me but found I could no longer walk in heels because it felt like I was always wearing two different heights of shoe: a kitten heel on one foot, a four-inch stiletto on the other. But actually, I was wearing flats. Yes, it was a small price to pay to be rid of seizures, but my balance was gone, which meant other things were gone too: like yoga and hiking. I'd be going about something as mundane as vacuuming the living room and find myself constantly casting around for a mooring in order to find my footing. "You'll get used to it," my jerk neurologist assured me, but I didn't want to get used to feeling like I was living in an endless episode of _Absolutely Fabulous_ (as much as I guffaw at that show). To live out my days as Edina seemed like a recipe for disaster, especially with kids in the mix. I certainly didn't want either of the girls to end up as grumpy as Saffron.
If I had to compare this drug experience to a Broadway musical, I'd say it was like _Wicked._ Everyone thinks they know the tale of _The Wizard of Oz,_ but there was a whole lot more going on in that story than anyone realizes. One minute I'd be floating away in a bubble like Glinda the good witch and the next would find me completely green around the gills with Elphaba's pointy black hat tightening like a metal band around my head. Worse still, I kept having auras—the visual and sensorial hallucinations that forewarned of a seizure. These auras were more of a thick brain fog. It was fraught with chronicity—that feeling of being dead while alive. This AED made reading words on a page next to impossible when I was having one, which was yet another impediment to earning a living. The first AED was a fail. Going back to the pharmacological drawing board was a disappointing but fairly common occurrence the doctor told me. It would take some time and tweaking to get the cocktail right. I've heard other epileptics compare the process to feeling like a lab rat. For me, it was more like being a tourist in a very high-risk, low-reward travel immersion program. A year abroad nannying in the scary jungle that is your own head—complete with snakes, spiders, and other big bugs.
My next AED turned out to be the absinthe of epilepsy drugs for me. Serious road trip to beautiful-crazy-land. Suddenly, the very act of sleeping became an ultra-vivid Fellini movie. On the plus side, my vertigo and headaches stopped, but the cinematic sleep side effects could be downright overwhelming and frightening. These dreams weren't like the luminescent fireworks of my seizures. They were so colorful they'd make a Crayola sixty-four pack blush. They materialized in full seventy millimeter with Dolby surround sound—all of which resolved into an overarching mood that was both surreal and fantastical. That said, the narratives were always spare and simple. In one, I might be sunbathing on an island of craggy white rocks set against the glimmering Aegean Sea, surrounded by my closest childhood friends—key women in my life. We were all mermaids with underwater voices singing this strange aria amid the lapping waters. It was pure joy. No one could reach us. Still, we were safe. Some might say stranded, but we didn't mind it so much because there was this bright, very even feeling of reunion connecting us all, as if the sky were giving you a hug, brought so close you could feel its warm blue against your chest but without any sense of smothering or claustrophobia. Just calm, steady light. This dream was like a warm bath. I would wake from it in the early hours before the kids were up and yearn to be right back in it. It was a hunger pang, but without the despair of starvation.
Another dream found me standing on a life-sized chessboard with both my daughters starring as swaddled tots. Olivia was on a white square, and Sophie lay a short distance away on a black square near the edge against a deep crimson sky. All at once, the board tilted sharply to the left and we all began to slide and scramble. It was like a live-action version of Chutes and Ladders. As I slid on my chest to grab Olivia's hand, Sophie fell into the void. There I lay stretched across the board sobbing, and then it jerked again. Olivia was gone too. It was the mother of all nightmares—literally—as I'd lost them both. My grief in this particular dream was so deep, I felt myself caving in and hollowing out. It was _dark._ And I was a black hole, my own fierce gravity turning inward and folding in on itself, accelerating at such a pace. I would wake up and do a big Michelle Williams–style ugly cry before the girls got up and think...this has got to be the drugs. And while I could take Fellini and the mermaids, I couldn't take the David Lynch chessboard of doom. It was too much.
That said, the meds were _technically_ working. I'd stopped having daily auras and my seizures had become less frequent—down to once a month. However, when they did come, it was with little to no warning at all. I might be sitting with friends playing Bananagrams by the fire and suddenly I'd be gone. I'd be writhing on the floor only to awaken to one of them telling me everything was going to be all right. Most of my seizures were less intense and shorter than on my first drug trial, so if I was home when I had one I could usually just go straight to bed for twenty to thirty hours and skip the expensive, exhausting drama of the ER. I never developed the flesh-eating rash that I'd been told could mean a deadly allergy to the drug, and my cognitive impairments were also not nearly as bad. I seemed to bounce back more quickly in the days following. In talking with my doctor, it seemed that depending on random shifts in my metabolism, I could still burn through the meds and have a breakthrough seizure anytime, anywhere. In my case, I had the metabolism of a racehorse. My body burned through the drug like an addict. The doctor would increase my dosage, the dreams and an itchy (nonlethal) rash would come back, but then over the months, I would break through again with another seizure.
Beyond the guilt of feeling like a burden, the hardest part of this stretch of the med trials was the steady anxiety of walking around with the ghost of a seizure constantly whispering in my ear, "Hold up there, chica. Do you feel like you're going to spaz? Better get to a soft spot, pronto!" I needed to get better at anticipating them if this drug was going to work. I needed to be more realistic about what I could mentally and physically accomplish each day, to feel out my edges without always going over them. My new boss was not happy. He was one of those managers who always walked around wearing food on his face. He'd grown a hipster pirate beard to hide his increasingly double chin—but his mustache kept morphing into an overly ambitious Tom Selleck toothbrush on his upper lip. He'd carp away. With each leveling up of meds, I was becoming less and less effective at work, which gave me a competency complex, making for even more stress and even later hours, which then made the meds less and less effective. Something had to give, but we'll get to that soon enough.
One thing that happens when you're diagnosed with a condition that's even remotely mysterious or chronic is that every alternative-complementary-holistic practitioner comes out of the woodwork with every possible remedy or cocktail of herbs to cure you. As I researched different options, it was clear that the wilds of the web were replete with blogs, think pieces, and social media postings by people who'd found their miracles in ketogenic diets, medical marijuana, or some shamanic ritual. All were cautiously cheery ("A Gluten-Free Treat for You!" or "Manage Seizures with Yelling Yoga!"). Most of the claims felt inconsistent at best, but they also reflected a deep unspoken grievance. Here was an entire population of people dealing with epilepsy, both wealthy and poor, some in developing nations and others in top-tier treatment programs, who were all linked by one thing: the inability of medical science to control their conditions. I wish I could have more faith in the "fixes everything goop" that I'd been lured into buying on sites like Goop, but having worked on two reality TV shows in the recent past—both of which were about hopeless medical cases and attempts at alternative cures—I'd had most of my belief bled out of me by then. It was all trial and error. Nobody really knew anything, but still you _did_ encounter a host of wild snake-oil-selling characters and personalities—a number of which were hilariously and sometimes tragically on an epic Holy Grail–style quest to solve some mysterious ailment of their own. But, per Joan, what doesn't hurt you makes you interesting and what doesn't kill you definitely makes you mouthy.
"You've never held a human brain in your hands," my doctor said, dismissing my concerns about how many seizures I was still having on my current meds. "No, I'm holding one in my head and it's not working very well. Is there anything else out there? I'm worried my youngest child is going to have an aneurysm by the time she's twelve." There was something else out there, but it would take some time and one very big misadventure to get it. 9 Why Yes, I Am a Cyborg "GOOD GOD, talk about wearable tech," I thought as I studied my reflection in the overhead mirror. Google Glass this was _not._ I looked like a gigantic walking tampon—a bright white Tampax super plus. My head looked too big and bulbous to be human. It was again covered in electrodes, which were held in place by thick strips of duct tape under my jaw. At the nape of my neck, a long ponytail of wires piped down into a tablet-sized data recorder strapped to my chest. I was an alien cyborg in poor disguise and I was on the bus. The lovely old silk scarf I'd used to cover things with wasn't quite doing the trick.
I pined for my analog wardrobe. I could feel the creepy-crawl of eyes on me now. This ambulatory or "walking" EEG was yet another test to understand my seizure potential triggers, and related nuances. The goal was to identify a more effective medication. It had been about eight months on this one AED, and I was still having tonic-clonic seizures about every month and auras all the time lately. I tugged my scarf down over my headgear. When I was picking it out that morning, I felt I needed something from my old life _before_ epilepsy. Some small thing to get me through the procedure emotionally. I'd gotten it on a family trip to the south of France five years before all of this upheaval, back when I was married and happy and couldn't imagine any other life than what I had—the kids, the meadow out behind our rambling farmhouse, and my funny, brilliant, handsome husband. Yes, on this grim, absurdly robotic day I'd wanted any part of _that_ past to return. The scarf was a talisman to remind me that life could be good again. That it could be one of safety, stability, health, and a certain amount of permission to be as ridiculous and quirky as we liked as a family. Think: _The Royal Tenenbaums,_ where every character completely owns their weirdness and claims it like a badge of honor.
I could have asked for a ride that morning, but I was supposed to be following my regular daily routine to see what sparked seizures and _this_ was it. Taking the bus to work, being a goofball at the office, picking up kids from school, cooking over an open flame, and so on. The EEG technician explained I would need to wear the contraption for three days without interruption. I'd had the option to do this exercise in the hospital, but that would mean missing work and finding a babysitter, which I couldn't afford. So, I decided to finally "out" myself—as it were—act like things were normal and just go into the office. The other moms dealing with cancer at school all had to brave the public eye in scarves and wigs. Why should I be any different? Yes, I might be a freak magnet in the short term, but it would be worth it if I could solve my seizures for the longer term. And if anyone would understand my cyborg cosplay it would be the video-game-writer nerds I was currently working with. If anything, they would want to participate in the experiment. The nerdiest among them might even find it hot. And no, the tech confirmed, I wouldn't be allowed to shower during the test, which these lovable dirt-bags would most certainly understand as well.
My responsibility during the whole process: to keep an activity, aura, and seizure journal that I would then hand back into the doctor at the end for him to compare brainwaves with sensations and specific activities or events. Part of me worried about how specific my triggers might be. What if it was something I couldn't control? That would not be good. But what if it was something such as I could suddenly no longer have meetings with my new jerky boss? That would be awesome. On the other hand, what if it revealed things I didn't want to hear? "So sorry, Ms. Jones, we're afraid your favorite food (margaritas) causes spikes in electrical activity. Oh, and your free time, spent binge watching bad Canadian television while eating baba ghanoush with your fingertips—no more of that." The data recorder itself made no discernible noises. As far as I could see, it was just a capture device; it wasn't like the beeping monitors you always see in movies. If I had a seizure while wearing my headgear, no sensor or alarm would go off—other than me falling to the ground and thrashing about, which, honestly, is alarming enough on its own. Still, I couldn't shake how self-conscious I was about the apparatus even if I _did_ get one or two kind smiles on the bus with strangers working out in their inner monologs about what my story was. I'd decided ahead of time that if anyone, stranger or acquaintance, asked what was going on, I'd go full-on _operation plain speak_ with them and say, "I have epilepsy. This gear is recording my brain activity to help prevent future seizures." With kids who asked, I'd keep things light and couch it as a cool robot experiment to better understand how brains work. If they asked what a seizure was, I'd tell them it was a lightning storm in the brain that was gorgeous to watch but also made me sleepy.
Thanks to smartphones, social media, working in advertising, video games, and teaching a science fiction film class in a past life, I already possessed a somewhat complicated relationship with technology. I had seen enough mad geniuses screwing themselves over with science, from _Frankenstein_ to _Jurassic Park,_ to have developed a rich wariness of a constantly vibrating, technologically determined life. Right now on the bus, I felt stranded smack-dab in the middle of the uncanny valley, that which makes us human and that which makes us artifice. This past year when Facebook's artificial intelligence robots shut down after they started talking to each other in their own language—one that no human could understand—people were appropriately creeped out. Likewise, my brain had started speaking in its own electrical language, which I was trying to figure out, but instead of people being freaked out, once they got over the initial shock of my ridiculous headgear, I noticed they were totally curious and overwhelmingly compassionate about things.
What makes us human after all? Self-awareness? Empathy? Will? Longing? Regret? Self-determination? I had always been mildly obsessed with how we come to know ourselves through technology. Now wearing my cyborg gear on the bus, I felt wildly self-conscious and even more human and vulnerable than ever before. The triggers of my seizures seemed rooted in the most basic of human activities: sleeping, breathing, seeing, and so on. I'd continued having auras on my current cocktail of meds. They manifested as a kind of buzzing lightheadedness. I'd talked to my neurologist about them and how I'd often feel on the very edge of a seizure while at work. I could always tell because I felt a kind of vertigo, always about to fall face first on the floor. Suddenly, I needed a walker with tennis balls on the feet or one of those _exersaucers_ my kids used to hang out in right as they were learning how to walk. There's no debating that we all live hyper-technologically mediated lives. What separates cyborgs from humans in so many science fiction stories is that people have will, appetite, desire, and a sense of purpose tempered with judgment. Cyborgs don't have that sentient wiring; they're not supposed to want or have an appetite for pleasure or pain. Having been raised to be somewhat of a pleaser, I definitely felt a certain pressure to act the part of a sick person and practice a kind of self-erasure or apology vibe to make people around me more comfortable. But if I did this, it actually might render the test results inaccurate. I also wasn't supposed to walk around like a Buddhist monk, all peace and tranquility. I was supposed to do my human, emotive, very stressed-out mom-act to better understand what triggers in that regular life were causing seizures and where they were located in my brain. I wasn't supposed to behave like a cyborg.
More interesting than how I navigated public space and social cues was how others did. Maybe it was the city, but being a fully wired robot girl had the opposite effect on those around me. I felt it most pointedly when I walked in to pick Sophie up from school. I'd assumed I would be a shock to all, and I'd steeled myself in advance to be gawked at by the other parents in class. There was only one other mom (that I knew of) who was visibly ill from cancer and wearing a similar headscarf. Yes, I looked a bit weirder than she did in that my head resembled the root end of a bunch of bok choy, but I was just another mother dealing with a health issue that sucks—so I needed to get over myself and suck it up. I couldn't have been more wrong about people's reactions. Yes, there was the odd look or two on the street, but when I buzzed into the school to pick up my youngest, I ran straight into one of the dads I'd seen regularly at drop-off. He drove the same model as our old car. He and his wife had seemed very cool and smart at a glance—bookish and snarky and interesting. Both of them wore great nerd glasses. They seemed happy and like they cultivated the good kind of weirdness you want for your family instead of cultivating shoehorned blandness, which is what so many of the married moms appeared to be always striving for, and which I felt duty bound to resist given my unmarried, _Gilmore Girls_ -ish status. I would never fit in with the traditional, married, minivan-driving, PTA clique of parents who had practical haircuts. I had already failed early on out of that particular demo by being divorced. In most schools, I'd noticed the wave of divorces didn't really happen until fifth or sixth grade. My kids had only been four and seven when my marriage ended and we were effectively on our own. From then on, it was always, "Did he cheat?" from the other mothers.
"No." I would answer. "Did you cheat?" "No. I totally loved my husband, our family, and the life I thought we were building." Or, "You must have been a terrible bitch....Are you crazy?" "Probably. I struggled with depression and anxiety like a lot of moms do. WTF hormones? Plus, no sleep and career taking a backseat; it's a big adjustment." And there was also, "What'd you do to go and lose a great guy like him?" "I wish I knew. I would have done anything to fix things, but I wasn't smart enough or kind enough or ever enough. It haunts me to this day." Still, these parents, whom I'd seen around school, seemed to reside in a world apart from the whole blame-oriented, judgmental parent clique I'd feared. But now I stood there in the vestibule with this poor dad in shock at my overnight transformation and his first words were, "Whoa. You're Sophie's mom, right? What the hell happened? Are you okay? I'm Chase by the way, Ingrid's dad." He extended a hand. He was wearing a green bowtie and a fedora and reminded me vaguely of the actor who plays Dr. Who, except more cool. I quickly explained my cyborg experiment for epilepsy and he immediately offered us a ride home. We lived about two miles from their house, but he said they didn't mind going out of the way. Flummoxed by the generosity and my daughter's pleas to spend a car ride with Chase and Charlotte's kids, I said sure.
Moments later, with Charlotte in the driver's seat and Chase quizzing the kids, and me in the backseat in a very animated conversation about everyone's respective days, I realized, "Oh, wow! This headgear of mine isn't a freak magnet, it's a _friend magnet._ I already freaking love these people!" Charlotte had Brigitte Bardot hair piled high, black sassy glasses, and a husky, former-smoker's voice. I had seen her all over school. In her past, premom life, she'd taught art history at the college level. Chase was some complicated type of consultant. "Now, epilepsy is a type of brain spasm?" Charlotte asked. "Err...sort of. My brain has too much electricity sometimes, and it all has to go somewhere, so, I have seizures. It's like a lightning storm in my head that manifests throughout my body." "And you walking around wired up like a robot is just to figure out what causes them?" I nodded. "Correct. It's a total _Frankenstein_ cyborg experiment." "That's amazing. So when they're done, you might know what not to do or they'll adjust your drugs?"
"I'm hoping. If it could be like a minor system-slash-drug update that would be completely great." To my utter astonishment, these fellow parents (and kids) weren't weirded out at all by my situation. They were intelligent, funny, sophisticated, compassionate people who seemed to just get me. I was so prepared for pity or shunning. For the first time since the first seizure, I wondered if upgrading your brain didn't make you less human but rather compelled others to be more so. Or would it be like most technology experiments? Would the potential upgrade come with new bugs and security breaches that need patching? Or would a small figurative code upgrade refine my judgment about people and the way I connected with people? Maybe I was making too much out of it, but I felt I understood for the first time since my seizures had started. Work reactions were similar. Linda, the proverbial hall monitor from HR, complimented my scarf selection. I could tell she was probably a little worried about the visual distraction I posed, but she couldn't say a thing about it because epilepsy is a protected disability. The new boss didn't even notice, and while the nerds were trying to be respectful, their glee was abundantly clear as they inspected me as if I were a new toy robot. And it was also awesome _not_ feeling like an imposter for once.
After three days, the main finding was lack of sleep led to unusual electrical activity from being worn down by the device itself because I couldn't sleep in the damn thing. Lack of sleep was actually causing me to feel "seizury," with a buzzing hiss in my head and the feeling of a metal band tightening at my temples. So, it essentially confirmed what I already knew. Nothing in my life was triggering my seizures other than lack of sleep, which I would work on getting more of, and there would be no changes to my meds other than to increase them slightly. It wasn't at all the outcome I'd expected, but looking back now, it was the best I could hope for because robot-me finally got to be human-me just a little bit more. And after all those months of keeping things a secret, I could finally be a spaz and have it be okay for the time being. 10 Dostoyevsky's Addiction THE GALA INVITE READ "Love life. Hate epilepsy." The cause was completely worthy—to fund advanced research to cure epilepsy, but the slogan didn't sit right with me. It felt like an alt-right extremist rally against the condition. I couldn't help thinking that I don't want to hate epilepsy. Hate is too exhausting. If anything, I want to get along with it so that it stopped being such a bastard. That was the whole point, wasn't it? Maybe I wasn't being hopeful _enough._
Dostoyevsky loved his seizures. Leave it to the Russians to make seizures into something fabulous, to elevate them to an art form and a cathartic experience. This is a country where potatoes become vodka, beets become borscht, and Siberia becomes a vacation destination. Dostoyevsky's seizures always began with a bestial howl. There, in his drawing room, the writer would sit on the sofa talking with his sister-in-law. He might be in high, animated spirits chattering away when suddenly he'd go completely pale, lurch forward, and begin to fall. His wife would rush to his aid and notice a frightening change in his expression; suddenly there would be a fearful cry, a cry that had nothing human about it—and then he would fall into a grand mal seizure. I'm probably not the first person to say this, but the epilepsy narrative can be very _dark._ There are _way_ too many tales of woe. People need support for something so chronic, pervasive, and long term. Epilepsy is so much more than a seizure or fit. It steals moments, memories, whole childhoods, relationships, homes, job opportunities, and value from whole communities in that talented people find themselves housebound or unable to work or even stay out of the hospital. It's a shadow that follows without ceasing. It's the fear of being found out at work, of forgetting your medication, of becoming a shut-in. It's waking up to judgmental strangers. It's being written off as a drunk or a junkie. It's worried phone calls after midnight because you _didn't_ check in, even though you are forty-three years old.
I thought of a woman I'd seen outside my office, wrapped in a foil blanket—the kind they give you in the ER when you're in shock or being rescued from Mount Everest. It had just started to snow and her cardboard sign said, "Just out of hospital. I have severe seizures. Please help. Very cold." She had shoes but no socks. She was in her early thirties and didn't appear homeless or like she was on drugs. Was this how her story ended? From demonic possession to witchery to sexual deviancy—epilepsy brings some daring and destructive mythology with it. From being viewed as a genetic defective, someone who should never marry or have children, to being bullied, to horrifying stories of Nazis euthanizing or experimenting on epileptics during World War II, to stories of insti-tutio-naliz-ation in epileptic colonies, and to a beyond terrible narrative of a young woman being filmed by her partner while having a seizure during an intimate moment only to have the video end up on some awful website describing her seizure as a "literal death-gasm." There were too many narratives like these out there, online, where you didn't have someone like Dostoyevsky's wife rushing to catch him when he seized, to protect you from harm. A girl I'd come to know through one of my informal Spazzes-R-Us clubs had had a fit right as she was getting off the bus and people—in full view of the bus driver—moved her down the steps and just left her there on the street thrashing away.
Most of all, there seemed to be a whole tribe of lost souls, a vast archipelago of singular islands, each so conspicuously solitary as epilepsy varies so greatly from person to person. If you're anything like me, you _do try_ in the face of a diagnosis like this to find any small nugget, some tiny glimmer of goodness or upside to it. Don't get me wrong; I'm the farthest thing from Pollyanna. I could win the crown for Miss Thanatos. Still, where was the upside? Where was the happy-ish medium? The comedy of errors that ended with everything back together? Or at least in a steadier rhythm? Where was the wisdom that supposedly comes from staring mortality in the face? Did it all have to be so repeatedly and profoundly bleak? I don't know about you, but when faced with a crisis, I always look to history and my favorite role models for positive narrative outcomes. Most happy stories follow a common arc. Tragic stories have their own standard plot points as well, but most are not terribly original despite attempts to mix things up or flip the script.
I was so floored by my diagnosis that I became frantic for a different story. I would take any tale, any anecdote about how someone had cracked the code of their seizures with medication, surgery, or stories about who still managed to make a decent life after a diagnosis like this. Any story of "being okay" was a narrative to which I clung. Someone bearing witness to even one good thing before the potential descent into unyielding, biologically determined darkness was what I sought. I had to make it all mean something. I needed a more hopeful narrative because if I accepted the idea that I had this random brain disorder that somehow no one in my family had bothered to mention was in our DNA, and that would never get any better, then suddenly my sense of self, my ability to make worthwhile decisions and to grow into even a slightly less idiotic person, felt out of my reach, and any control over life was illusory at best. But when I gave my own pathetic, little sky-is-falling routine a momentary rest and looked at history, it seemed the club of known epileptics included an amazing class of creative thinkers, leaders, and even Olympians: from Da Vinci to Sir Isaac Newton, from Van Gogh to Michelangelo, from Harriet Tubman to Agatha Christie, from Emily Dickinson to Florence Griffith Joyner, from Lewis Carroll to Charles Dickens, and from Einstein to Prince. These were all people who would be amazing at the kind of nerdy dinner party I would so totally host.
The best of the bunch for me was Dostoyevsky who professed to fall in love with them, given the catharsis and creative exuberance he experienced leading up to them. Epileptic characters also feature prominently in his books and are believed to be based on his own experience. And while correlation is hardly causation, something in the narrative of these people made me believe that there was still a chance that life with epilepsy could be both highly creative and productive. In other words, I could let my seizures make life small or my brain's electric nature could be an opening to something greater. According to Dostoyevsky, most of his seizures took place in the evenings, when he was either alone or with his wife. However, there are accounts of incidents that happened during the day, in the presence of other colleagues, friends, and family. These seizures usually began with what he called an "ecstatic aura." Auras can vary greatly across different people and sometimes involve music, sounds, odors, lights, visual disturbances, or other hallucinations. For Dostoyevsky, these auras almost always led to a loss of vision, language, memory, and consciousness.
Literary critic and the writer's friend Nikolay Strakhov related that Dostoyevsky often told him that before the onset of an attack there were minutes during which he felt unbridled ecstasy. Addiction is a disease, but what happens when you become addicted to the disease or the disorder itself? Not merely the high but the whole? Do you become a manifestation of addiction squared in a kind of vicious cycle? It's hard to fathom the idea of anyone being addicted to cancer or diabetes, but Dostoyevsky seemed to crave his seizures. He wrote feverishly around them. I recognized that craving, energy fascination with the altered state of the epileptic. What could my seizures teach me? Could I leverage the creative fervency around them to do different or better work? 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 one, 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.
In any case, even on meds, apparently I still do a fair bit of crashing around when I'm at peak spaz, and it had become clear that our household needed a set of instructions to bring me back to human, to decrease the anxiety and help people feel like seasoned professionals around me during a fit. I decided they needed to be werewolf experts. Some people might take offense to animal metaphors or my likening epilepsy to lycanthropy, but when I was searching for an analogy, I needed pop culture on my side. Having a seizure does not make a person a monster, but it is a very _definite_ experience for those around you. The werewolf-cum-creature of the night concept was simply one way of framing it that worked for our household. We'd just endured the whole _Twilight_ saga, so it felt familiar and slightly more empowered and badass than other comparisons. Plus, historically speaking, there were clear rules and protocols to follow when it came to werewolves. We needed those cue cards front and center to diffuse the fear. So, multiple, laminated copies of the seizure to-do list and script for when Mom has a fit became the big project. The point was we needed something semipermanent and codified that would guide people around each event, especially since the werewolf can't speak for itself during the moment, which is almost always the case with me.
Now, according to werewolf lore found nearly everywhere on the Internet and in medieval Eastern Europe, there are three approved methods for curing a victim of werewolf-ism: Medicinally, usually via the use of wolfsbane, which sounds like a fun herb to try, right? Just kidding, _do not try this_ because I don't even really know what it is; I'm a New Yorker, not a botanist. Surgery—also very scary. Or exorcism, which could easily count as me writing this book. Aside from the obvious parallels one might draw with epilepsy treatments throughout history, there were other werewolf best practices that I thought might hold some value for our seizure emergency plan while making it easy to remember at a moment's notice: 1. _Love that fenced-in area._ Turn me on my side, clear any hazardous objects immediately surrounding me, but don't actively restrain me. This is a deal breaker as people who have seizures may exhibit absurd strength during a fit, and it's possible for you to get hurt or for the person seizing to hurt herself. Turning the person on her side also helps to prevent choking due to foaming at the mouth or heaving one's guts out. Wee. Good times.
2. _Watch the fangs._ Never put anything in the mouth of a person who is having a seizure. I promise I won't swallow my tongue. I might bite it, which is why you sometimes see blood foaming out of a seizing person's mouth. And while you want to be sure the person is still breathing, no one wants to lose a finger. 3. _Embrace the faux-fur, people._ Grab the nearest soft thing to protect the person's head, face, and teeth. If out in public, a coat folded up under the person's head works great. In our house, stuffed animals or fluffy couch cushions with washable covers have been the go-to. We also got a super-girly faux-fur rug for the living room that works well. The best invention I've ever heard of came by way of our neighbor Zach. It was a motion-sensing inflatable airbag helmet/collar originally invented for cyclists that you could wear around your neck. If it sensed you were about to fall in any direction, it would automatically inflate to protect your head and neck from breaking. Yes, such a thing actually exists. And given the state of my forty-something-year-old neck, this seemed like something to try, especially if I could accessorize it with glitter, a scarf, or a statement necklace.
4. _Even werewolves take a while to transform._ So, always time the seizure. If ever you needed an excuse for a new smart watch, having a spaz for a friend or family member is an awesome one. Until they really _do_ invent a Fitbit for the brain, timing a seizure is important for EMTs and doctors to know what to do next. If the seizure has gone on for more than five minutes, or if there are life-threatening injuries, breathing issues, severe lacerations, or a concussion, our household protocol is to call 911, preferably with an adult on hand. If it's a shorter seizure, I always liked to recover at home in my own bed, with my family and amid familiar surroundings—so I had a note that declined transport that could be used. The ambulance alone can run thousands of dollars in some cities, and I've always found the hospital to be the least restful place on the planet. Between the medical device beeping and chaos of other ER dramas unfolding, it does me in every time. Ambulances are also a problem in certain cities as landlords can evict a person if the emergency services team comes more than eight times to a single address. It's absurd and cruel to think about losing your house or apartment because your family called 911 to save your life, but this is why we need so much more research, accommodation, and advocacy for people with neuro-differences.
5. _Remind me who I am and who you are._ You know how in every movie about werewolves, there's always the scene between the wolf and his/her friend where it comes down to a moment when the friend is all "It's me! You _know_ me werewolf Alisa! We're besties—not beasties! I know you're still in there somewhere. Please, don't eat me!" It's the same with someone having a seizure. Chances are when I'm waking up from one I'll be frightened, be disoriented, and have zero memory of what's just happened. I may not understand where I am, who I am, or who you are. In fact, I may look at you like _you_ are the monster and be terrified. Remind people seizing that they are safe, who they are, who you are, that you've got them, and that everything is going to be okay. To keep talking calmly to the person is, I believe, the best possible thing you can do in the moment. But what if you're home alone? It may sound extreme, but I read about a woman who lived alone with severe epilepsy, and she actually spray-painted instructions all over the walls inside her house to remind herself of her full name, that she was home safe, and that she was loved so that when she woke up from every seizure, she could ward off the inimitable terror of having no memory. Her landlord must have been a saint. Still, the most important thing if you're ever having a seizure while alone is the ability to self-identify and recognize your immediate surroundings. Your recovery from the moment begins there.
If you've ever had a really bad hangover, just multiply it by a thousand-kajillion-million and add some miscellaneous injuries, deep shame, and despair and you'll have an inkling of what you might feel like after a seizure. Hearing a caring, steady chant upon waking, one that reminds me that I'm still _me_ (and not a wolf) and that everything is going to be okay makes such a difference every time. 6. _Keep an eye on the moon cycles._ I know it may sound all Stevie Nicks and Wiccan (not that there's anything wrong with that; witches are cool), but I mean this to simply say keep an eye on your own internal systems. If I know I'm going to have a seizure or if I sense one is on the horizon, I can sometimes prepare in advance not to terrify, embarrass, or injure myself. As I've mentioned, for me an aura can be anything from a shimmer to an electric current sensation to the feeling of a metal band tightening around my head, and in some cases, I can't tell if I'm moving forward or backward and so I feel both at once. It's more psychedelic than painful.
Admittedly, I do need to come up with a better code word for it to help alert people around me, but these days I usually tell people, "Sorry, I've got to 'werewolf' myself, people." The upshot is that I typically leave work early with the help of a friend, I go to bed with the requisite number of pillows (five or six), and I take some powerful emergency meds that I keep on hand that can help to ward off the onset of a seizure. This foresight, however disruptive to daily life, is the best way I can get myself to a safe place before things go down and reduce the drama for the people around me. I read about a man who had very short auras before sudden severe seizures. His mode of dealing was to lie down wherever he might be and bite down on the wallet that he always carried with him. He did this to protect his tongue before his seizures would start. I've been on the lookout for something to bite down on for a while because I do not want to use my wallet. As I mentioned earlier, it's attached to a big bag that I really, really like it and so that's one thing I categorically will not sacrifice to epilepsy.
7. _Remember: technically, the werewolf is only on the hook for manslaughter, not murder._ What this means is that in terms of the odd things you might say during a seizure, other spaz friends of mine have said extraordinary things before, during, and after their grand mals. One friend who was regaining consciousness after having a seizure on the trading floor of the investment bank where she worked told me she could not stop screaming, "Don't take me to jail!" as the paramedics carted her away on a gurney past shocked finance bros in suits. Oh, how they must have been shitting bricks. It may have been based on what she'd seen with other colleagues, but she was absolutely convinced in the moment that she was headed for the clink. All this is to say, reserve judgment, you good Samaritans out there. Confusion, disorientation, and straight-up terror are common after a seizure. I've been told I'm pretty funny coming out of an episode. Apparently, sometimes I know things I _never_ thought I knew, like obscure phone numbers. There have been other times in the aftermath of a seizure where I've thought, Holy hell! What do I really know that I didn't know I knew? Maybe I know karate? Or Portuguese? Doesn't that language have more than seven thousand irregular verbs? In this regard, my seizures somehow feel less regrettable. And there's a hope for better moves with martial arts for sure.
8. _A reminder for the werewolf minders._ It's important for the people helping the person having the seizure to take a breather. I generally sleep for two to three days after one—not everyone takes this long to recover. I think it may be that I use so many muscles in my body during each episode—plus, there may also be injuries. For the people helping me, it can be traumatic, seeing the transformation the person goes through from aura to seizure and to the postictal recovery. Seeing a loved one so profoundly helpless, vulnerable, and possibly hurt can make for major anxiety, depression, and PTSD. It's okay to take a break. You need to look after yourself in whatever form that best takes. For the person having or who's had a seizure, it's okay to be bummed if an ambulance was called during the event. Hopefully, they administered oxygen and gave you decent meds. Yes, it can lead to unanticipated medical bills, the loss of a driver's license (probably appropriate even if totally inconvenient), and all kinds of other daily life consequences, but _know_ that the people around you were probably doing the very best they could to keep you safe. Thank them. (Thank them with pie!)
To the wolf minder, it takes a while to process _experiencing_ a seizure on all sides, which is why giving you and your wolf some room to roam and breathe is key—all the while remembering that you are pack animals together and having each other's backs is key to improving quality of life and reducing fear around each event. 12 Everything in New York Is a Little Bit Broken (Part 2) LOOPING BACK TO "the big one" in 2015, Delia-the-neurologist—like my girlfriend Holly—was a feisty woman. I vaguely remember the argument between Walter (the head of the hospital's maxillofacial surgery program) and Delia. She was so small next to him. Her head only came up to his chest, but she was fearless and fierce. She was wagging her finger in his face and they were going at it. I couldn't make out exactly what they were saying as their voices had morphed back into Charlie Brown _mwaw–mwaw,_ but it was something about seizing on the operating table, how I would die or be terribly maimed and/or probably scare the poor band of impressionable surgical residents out of medicine altogether. They reminded me of two parents arguing over what to do with a troubled child. I felt the heat of their tempers flare, and I thought I saw them both glow orange in the haze of my room. That's when they took it outside and came to a compromise. I wasn't frightened or sad at this point. I think I was more just relieved that they'd found me and that they were working things out. Meanwhile, I faded back to black.
The surgery would go forward the next day at dawn. Making an incision up the right side of my face from the crown of my head down to my chin, they would peel my face off from my skull with the goal of rebuilding what was left of my lower jaw with pins and plates and then reattaching both sides to my upper jaw and head with rods, making any alignment adjustments arthroscopically, sewing up the fracture lacerations, and wiring me shut—all without severing my facial nerves—so that I might still be able to feel, taste, blink, and smile one day. My front teeth were gone, but my tongue was still in one piece. Teeth could come later. It's so strange now to think of myself as having been in so many pieces, like shattered china, but there I was. AS I WAS BEING WHEELED into the operating room, Walter's own jowly wizard face gave me confidence. I thought if anyone could put me back together, it would be this mad genius. With whatever drugs I was on, he looked just like the professor from _Back to the Future._ I fixed my thoughts on my daughters—just to hold them in my mind's eye for a second longer. They still had no idea about the extent of my injuries. In my head, I thought I heard David Byrne singing, "This is not my beautiful life..." but I think now it was just Walter humming. He hums when he works, I would come to find out over the next eighteen months and three more surgeries.
I thought back way to the last kiss I'd had with the man I'd been seeing, Pepé Le Pew. The person I _didn't_ want seeing me now, at least not until _I_ had seen me _first,_ but I was homesick for him. For that kiss, the scent and friction of his scruff. Did you know the second most-asked question on the Internet is how to kiss? Some writer somewhere must be quipping that the real question should be _how to kiss like you mean it._ I could feel that kiss, that future life receding from me now, folding in on itself like a dead star. You were too happy, said the cynic in me. That's why this was happening. I don't know how I got the words out before going under, but I asked Walter, "Do you think I'll ever be able be to kiss again?" And he didn't sugarcoat or make false promises. He simply said, "I don't know, kid. Everything in there is a little bit broken." I WASN'T GOING TO be able to _Life Is Beautiful_ my way out of this one. As the blurry forms of Holly's face resolved into focus, I could just make out her halo of strawberry-blonde hair. Her smile lines formed parentheses around her straight, white teeth. (Sigh...teeth!) Her little black glasses lay perched low on the bridge of her nose. I went to speak, just to ask how things went with the surgery, only to find myself seemingly sewn shut. Frantic, I searched the inside of my mouth with my tongue and felt the inner jagged remains of my front teeth, a crooked graveyard of tooth shards, but there was no opening for my tongue to slip through, no way to part my teeth or my lips, open my mouth, or make sound. I felt myself inhale sharply, loudly huffing through delicate nose hairs. There was no opening for words. I started to panic.
Inside my face and head everything felt oddly splintered. Like tiny tent poles, a dozen or more pins held the skin of my cheeks and chin away from my skull and face bones. The sound of my breathing echoed inside against my inner cheeks. I was like a huffing rhinoceros or a jowly Richard Nixon—take your pick. Holly leaned forward, sensing my anxiety, and spoke in hushed tones: "You're going to be okay. The surgery went well. You're okay. Just breathe through your nose. They had to wire you shut. Your jaw was in a spasm and pulling hard to the left. That's right. Breathe, _chica._ " I remembered, I remembered. I would need to be wired shut to heal, they'd told me. Everything was a little bit broken, so no talking. No solid food, only liquids. Good God, what was that smell? Everywhere around me now was the odor of briny, salty seawater, but with something extra. As a mother, I immediately recognized it. I'd inhaled the biting stench of a soaked dirty diaper. Holy crapdazzle, it was me! I had the worst morning breath in all the world. It smelled like I'd licked the subway and then let it fester in the New York City heat amid some raw sewage. These were not similes I could deal with at this time. I gestured to Holly for my pen and paper and slowly wrote, "Got a mint?" out in big block letters. Even wired shut, I figured I could at least fit that in between my cheek and gum. She laughed, "Let's see if we can get you some mouthwash, lovie" and went to track down the nurse.
I ran my fingers lightly over the puffy planes and new angles of my face. I willed myself not to panic as I felt the metal staples just under what had been my hairline. What I'd seen with epilepsy thus far was that the body could shift and change very quickly, so no crying yet. The pins in my midface area just under the skin of my cheeks felt like tiny dollhouse doorknobs. I didn't seem to have significant stitching on my face, which was a relief. I gazed around my room. There were paper signs stuck up on the wall above and beside my bed: FALL RISK, SEIZURE RISK, BROKEN JAW/FACE—all in urgent, black Sharpie. That must have been Ed's doing. He loves signs. The nurses seemed a tad frightened of me, but having seen my mummified selfies, I would probably be frightened too at this point. Epilepsy now had me squarely by the lady balls. The nurse came in with mouthwash and to explain the glorious clicker of pain management. A morphine drip with a remote control. Anytime the pain started to flare up, I could hit the clicker to make it go away. I hit the clicker three times to try it out. As I felt the opioid goodness flooding my system all the way to my neon-yellow gripper socks, I thought, _It takes a lot for me to blow out my hair, but I would so totally go out on a date with this robot-machine-thing. I could use one of these, but for my whole philosophical-emotional life, an existential pain-management clicker._ I hit it again. No wonder people liked drugs so much. This was like chasing Xanax with really good weed, chased with...chloroform. It was fantastic, even if I was Tutankhamun. (Know that I'm not making light of America's addiction to opioids, which is very serious; I'm just saying I relate.)
Holly returned with one of the young hot residents—Dr. Some-Italian-sounding-delicious-truffle-name—who checked my cranial staples. (Cut me some slack, I'd clicked three times. I was home.) He had such _great_ skin. And his hair! It was _ER_ -era George Clooney hair—clean, yet scruffily mussed, but there was no man bun on this millennial. I think if I could have smiled, I would have, but I couldn't move my face or much of anything at that point. However, when he left, apparently I grabbed Holly by her Prada tunic and tried to get out the words, "Holy hell, did you see that guy?" Except she said it came out sounding super loopy, so it took her a while to decipher, but she nevertheless concurred. But how could I break my whole face and still be so insistently shameless? What other things had I said or done? And _when_ was everything going to be a little _less_ broken? 13 Unspeakable "VUCK OFF, MARILYN. This _is_ my yoga," I told her. I love living in a city where the F-word is mandatory—even when I can't say it.
I'd been singing again for my speech therapy—even though I still felt wired shut. My nine-hundred-year-old neighbor Marilyn stood in the doorway preening her dust mop of a dog, Biscuit. I love pooches, but that poor animal always sounded like it was being kicked in the teeth, which did not bode well for my current facial/dental PTSD. She adored the little guy—so there was nothing to call the mayor about. Still, I felt zero guilt about being noisy or dropping the odd F-bomb or two. What can I say? Even in my wiser middle age, the inner tough-guy street rat that sometimes commandeers my frontal lobe is still convinced that swearing makes you stronger. On the other hand, there _are_ circumstances where all it does is terrify and trigger people. Right now, I needed to terrify and trigger Marilyn to go away. She was giving me _what-fer,_ as Ed would say. Marilyn was the kind of person who could always be heard whispering in the street to her dog, "No, you don't always get a cookie for doing the right thing. That's part of being an _adult._ " Something loud and insane was always afoot on the other side of the wall at Marilyn's: illegal construction, intense granny raves, the odd kidney transplant—something that always made the dust mop crazy with yipping. You never quite knew.
"Marilyn, I had to buy sniper headphones when you and Biscuit moved in, so you can't talk to me about noise." "You know, your speech is getting much better." It's true. It was. I'd been singing "The Way You Look Tonight." Before that I'd attempted to belt out Fiona Apple's "Criminal." I am not an especially good belter, but Fiona's lyrics seemed entirely appropriate given the police state of the city that day. The terror threat level was at chartreuse. Still, at this point, it was all about getting language back and I didn't care if Marilyn, her dog, or the terrorists heard me. In the hospital, on pain meds, I had hallucinated all kinds of gleeful things my teenaged daughters might say now that I was wired shut: "Oh my God, she can't talk. _This_ is the _best_! She can't nag me to wake up in the mornings anymore," Sophie would say. To which Olivia would reply, "She can't tell me to clean up my crafts or complain about all the glitter!" Then Sophie's eyes would widen and she would gasp, "She can never embarrass me at school functions ever again!"
Only to have Olivia knowingly chirp, "Oh, she'll find a way." "I really hope she stops wearing those stupid tank tops that say things like 'Organic' with a bean sprout and 'Reading Is Sexy.' Ooh! Do you think she'll just stop talking altogether?" Sophie wished out loud. With Olivia expressing her skepticism, "Hmmm...I don't think she can. Not without going even more bonkers than she already is." At one point, even our old nanny made an appearance and said something along the lines of, " _Aye, Dios mio,_ it's a miracle, Miss Olivia! God has answered our prayers!" In the middle of all this, coming to grips with not talking, I tried my hand at sign language and learned how to say things like, "I can hear you. I broke my face and so it's really painful to talk." I have to confess; there was something wildly satisfying about communicating this way. I was crazily frustrated inside my head and mostly expressionless face, so to be able to use my hands to emote felt great. A number of the signs are highly intuitive and vivid so they're completely easy to learn. The sign for the word _painful_ is two hands twisting knives into your ribs and the expression of agony. The problem was not enough people around me knew sign language to comprehend all but the most hyperbolic of charades. There was a period after coming home where I was always on the lookout for the signifiers of deaf culture, say on the subway. I would search for anyone who might understand me. With hearing aids getting smaller and smaller, not to mention miraculous cochlear implants, it was hard to tell who might be a fellow understanderer of ASL.
Technology would be my answer for the near term, I thought, testing out a finger sketching-spelling app on my iPad. Of course, it's still clunky as hell if you have terrible finger penmanship, which I did after all the drugs. Plus, I could see that people always felt they had suddenly been put on the spot and were being challenged to an impromptu game of Pictionary. Overall, the moms were the best at reading my looping iPad scrawled messages, but the net result was that my impatience to speak, coupled with their impatience to understand and correctly guess my words, just made for more impatience. I knew there were a number of iPad type-to-talk applications out there on the market. This was my next stop in moving toward communication. I downloaded several to figure out which was the most "human" feeling. I knew I had a great deal of communicating that I would need to do when applying for my upcoming disability claim. I also felt I needed to choose a voice that didn't sound like every car GPS or every virtual assistant out there. It needed to sound a little like me. I wanted a woman who was not too robotic, so no Siri, no Alexa, and I didn't want her to sound too posh. I wanted someone in the vein of a friendly British newscaster, and I was elated when I finally found her. She sounded just slightly less aristocratic than the BBC World Service's Sue Montgomery. I practiced typing out common phrases in the app to have them at the ready for public interactions. They were ordinary things like "please" and "thank you" and "Can you help me?" or "I'd like to order the——" or "I'm so sorry. I was in an accident and so I use assistive technology to speak."
I remember going to the disability office in Harlem and being so proud of myself as I pulled out my iPad to engage a giant prison-guard-looking-guy behind the desk to ask for help. I pressed play on my iPad after typing in my question and Sue Montgomery-me spoke politely to the guard. His face screwed up as he listened. "What's it saying? I can't understand..." He was shaking his head now. I hit replay and Sue Montgomery-me repeated the question, which I think was something absurdly basic like "Hi, I'm trying to find the disability department. Can you tell me which floor it's on?" "Look lady, I don't know what this is. Can you hear me?" He started talking really loudly now. I nodded yes and flashed my teeth to show my wiring. I also played Sue again, saying, "I can hear you. No need to shout. I just can't speak." "Lord, if I ain't seen it all," he sighed, handing me a clipboard and a pen. I wrote out my question in my crap penmanship, which he ultimately understood. So much for technology. It was also clear that even at the disability offices (at least this one), the staffers weren't necessarily used to applicants trying in earnest to adapt to new modes of communicating. I was back to pen and paper for most interactions.
I DON'T KNOW WHAT I WAS expecting four weeks later when they finally fully unwired my mug. For those first terrifying moments, I thought my lower jaw would fall right off my face onto the floor and roll out into Walter's disco-themed lobby. It was exactly the feeling you have when you almost drop your purse down a manhole in the city but instead you catch it just in the nick of time. My lower face muscles were like slippery, overcooked noodles. "Holy cats, I'm a slack-jawed yokel!" I said, except it actually came out as: "Hory cas! I'n uh sack jawd yoko!" "You're Yoko?" Walter eyed his nurse for an alternate translation. "Yoko Ono?" he guessed. "It-gun-fa-off!" I insisted, cradling my chin in my hands. It felt as if it was hanging by mere threads connected to a space just above my ears. This couldn't be right, I thought. And if it was, it was _terrible._ It was so unnerving and I sounded like I'd had ten martinis. My whole face was a broken marionette. "Your jaw? No, no! It's not going to fall off, you ridiculous girl."
"Ich ithh!" I said, panicked. "It won't. Take your hands away and just try to open and close slowly." I lowered my palms an inch away, still scared and not trusting. I let my mouth fall open slightly and then tried to bring my up teeth again. It was like doing a very slow pull up—only with my mouth. I felt my back teeth touch lightly and then slip slightly to the left. I still couldn't get my lips to meet and fully close. "Try again," he said calmly. Still holding my hands like a girl taking communion in church, I let my mouth fall open again, chin dropping, and Walter whipped out his tape measure to check the distance between my teeth. I could open about a half inch, but it felt like the Grand Canyon to me. I strained to do another chin-up. I could feel tears welling up. My lower jaw was shaking. As my back teeth came together, my upper and lower jawbones still felt like a pair of broken scissors with the blades misaligned and slipping crookedly past each other. "I'm telling you, it's _not_ going to fall off," Walter assured me.
"I owe...isss juss weir..." Translation: "I know, it's just weird." This was so different from the aphasia I'd had with all my other seizures. I'd had my inner monologue back for months now. There was no straining of my brain scrambling and searching for the right words or trying to figure out how to sequence them. I had that down. It was the physical _mechanics_ of speech and my mouth as an apparatus for communicating that I no longer had full command of. At first, every word I tried to speak came out like water, a formless puddle of loose, risky vowels. _R_ was probably the easiest noise to make before vowels. "Hello" came out _heyrro._ See you later became _Shee ew rater._ My tongue wasn't used to all the cavernous space it suddenly had to roam. Every thing tumbled out in overly rounded consonants and vowels. When frustrated, my words came out like scalpels with hard consonants erupting in singular, slicing cuts. I was a girl with Tourette's and a slightly inebriated slur. The most difficult sounds were any words with B, _F, V, P,_ and _S. Ms_ were tough too. I got a referral for speech therapy.
AFTER MONTHS OF REPEATING "Bjorn Borg brings bravado to Bavaria with Bjork..." and "Sally sells seashells..." I was advised to try singing. I'd been in choir in high school and college—although I was never very good. I could carry a tune as a soprano, but I lacked power. The thing is I've always wanted to be a torch singer with a powerful, soulful Patti LuPone–style lounge act. Because I'd also had considerable trouble with _m_ sounds, I'd been doing this absurd monster song from _The Muppet Show,_ the whole of which involved repeating "Manumanuh" to this chipper tune about a hundred times. I also practiced my super-villain laugh: "Mwah-hahahahahahah." The most important thing seemed to be to keep the set list ever evolving. I'd been doing exaggerated renditions of Tom Jones's "What's New Pussycat" around the house because it requires so many facial muscles and types of sounds from hard to soft. But I knew I needed to mix things up to keep the neighbors from going bonkers. There were multiple times, though, after being unwired by Walter, where my mouth and jaw would stop working altogether. Just like that, with very little warning, the muscles would abruptly freeze up and clamp shut. When this would happen I couldn't even speak in Hepburnese! What's it like to be mute in Manhattan—the city that never sleeps, the city that never stops talking, the city that's always irate? No one knows how to process you. They're expecting you to match and reciprocate their level of angst, and when you can't, things get ridiculous fast.
It happened without warning, on the subway. I was standing there holding my little square-inch section of the pole, trying not to be an inconsiderate manspreader. The train was already packed body-to-body by Forty-Second Street. Sandwiched between a Melania Trump drag queen and a nun, I was getting close to my stop when this very zaftig blind woman steps onto the train. She held her cane close to her person as her male companion stepped on beside her. They both lingered in the doorway—the only open space left in the packed car. My station was coming up and so I was trying to subtly make a move toward the door to indicate that I was getting off. I nudge and nudge and lower my head to push forward, but no one seems to get it. I try to speak in the blind woman's general direction, "Ggghuu..." but my mouth won't comply. It simply won't make the words "Getting off" or "Excuse me." The hard _G_ is a great, mostly closed-teeth sound, by the way. "What's happenin'?" The blind woman whispered up over shoulder to her friend, clearly sensing my agitation. "Is somebody tryin' to saying somethin'?"
As I wiggled and wiggled toward the now-open but still mostly blocked doors, her friend whispered "Not sure," zeroing in on me with a furrowed brow like I was a girl off her meds. Behind him, an ominous sign instructed New Yorkers sternly, "See Something. Say Something." Inside my head, the polite but still pushy-jerky girl was pleading now: Getting off! Excuse me! Pardon me? Hello??? How can you _not_ understand me? But my mouth was still not cooperating, so it was just saying, "Ecusss..." With the subway doors open, a few skinny bodies twisted and turned past the blind lady and her friend to make their escape. I made my own futile efforts but was still pressed up against Melania and couldn't move my arms. "Looks like she's trying to say something," the friend added. And I realized what they were expecting from me was a truly irritated, "Get the fuck out of the way, so people can get off!" But I could no longer do that sort of thing. I just didn't have it in me that day or most days. The doors closed. The train departed my stop. I resolved to get off next at Ninety-Sixth Street and walk back down, but I couldn't help but laugh at the situation. Here are two women, a blind one and a mute one, just trying to manage a single public interaction. Two people who needed to communicate in a clear and immediate way but couldn't: the blind woman and her friend were trying to translate my angst, meanwhile strangers were chuckling to themselves at the three of us—trying to give our misunderstanding some privacy. And I think now about how much the world needs to adapt for this. How we need to become translators for a broadening spectrum of difference and disability. The new motto needs to be, See something. Say something. But if you can't, subway charades are a perfectly acceptable way to bridge communication.
AS PART OF LEARNING how to smile again, there was a time where I would spend long stretches holding a pencil level between my teeth while doing everyday tasks like the dishes or vacuuming. I also had to say the word _pink_ a hundred or so times a day. It uses all the smile muscles. My hope was that in six months' time, I might look less like Johnny Depp always sneering. Without language, I was paying attention to the world in a new way. They say 70 percent of overall communication is nonverbal and dependent on facial gestures, but I still didn't even have those back yet. To be able to smile, even a little and more evenly across both sides of my face, would be a huge step. I also had to spend a fair amount of time each day pretending I was talking to a dog: "Who's a good boy? Who's a good boy?" I sounded so insanely exaggerated that even Marilyn asked if we'd gotten a new dog. It was ridiculous, but I needed that level of emotion and excitement to try to drive feeling back into my lips. I was missing being able to feel a kiss.
During the time when I was mostly mute, wouldn't you know it, _everyone_ would talk to me. I remember, I was trudging up Madison Avenue to the dentist in the freezing rain for what must have been my nine millionth root canal (that I still cannot afford) when a man came right up to me and said, "Can I just tell you, I _really_ like your boots!" The snarky jerk in my head replied, "Well then, I _clearly_ need to do some shopping because these boots are from Costco, mister. That's right, the brand is 'waterproof.' " But instead out loud all I said was, "Thank you," which actually came out as, "Hank hue." Then he launched into his pitch. He and his wife were living in a homeless shelter with a newborn baby. In my desire to be empathetic, I totally forgot that I still couldn't make the right faces. I could _only_ look either terrified or very cynical. I must have looked really scared because a cabbie stopped traffic on Madison and called out to me, "Hey, are you okay?! Is he bothering you?" And lo, in a voice that came out in my first fully formed intelligible words in months, I called back, "No, he just likes my footwear!"
Holy fuck! I sounded mostly like me for the first time since "the big one"! A total stranger's pretext of liking my mediocre boots had just given me back my words. I gave him my only dollar left in nickels—the housing situation in the city is really the worst—but it made me think more than ever about how we need to proceed thoughtfully, with compassion for those who are wired differently from how we are. You just never know who might turn out to be a pal. As I stood there in the doorway now with Marilyn and Biscuit, I heard myself and she was right. My speech was better. Then, she leaned forward and said, "You know, if you just put your top teeth on top of your bottom lip like you're a simpleton with buck teeth you will _totally_ nail the 'Fuck off.' " 14 Get Your Freak On TELLING THE PERSON you like or even love that you have epilepsy is hard, or at least it was for me. I could hear Loïc saying it now, in his very serious, very incredulous Frenchy voice: "Oh, but _mon amour_! You are a genetic _cauchemare_!" (French for nightmare.)
I knew I wasn't the girl for Loïc. Unless a doctor also surgically removed my conscience, it would be a mistake to get any more attached and not tell him. I'd gotten very good at hiding my epilepsy for a while. I hid both my pills and my auras. I swore everyone in life to secrecy, but I'd known it was only a matter of time before he either found out or I 'fessed up. We had met the year before, in 2014. He had never been married and still wanted kids. I already had two that I wasn't taking enough care of these days. I had to admit it: I _was_ a genetic nightmare. To be an already childish grown-up with epilepsy, possibly parenting a new child who might be predisposed to epilepsy, depression, and anxiety seemed unimaginably hard and unfair to both him and any subsequent people we might make. It was over. Even before seizures and epilepsy, dating had been hard enough. For one, I had never been good at reading social cues. I am a nerd, and if I had been born a boy, I would have probably fallen in with the _Dungeons and Dragons_ computer kids and been constantly bullied by the big, scary jocks. And even when I did manage to grow out of my awkward _Edward Scissorhands_ teen years and into my cuter, more grown-up face and self, I still had terrible luck dating.
Prime example: back in my midtwenties, I once went out on a blind date with an older guy who took me to see _Schindler's List._ I was just trying to say goodnight and totally ugly-crying in the doorway of my little West Village studio and telling him that I was too sad to ever see him again. Thank you for the sushi. Goodnight...sob, sob, sob. No, you can't come in. Besides, I'm not into the midlife crisis set. With marriage, I had never known such relief. Finally, no more telling your story to new people—you had your person, your favorite entertainment in all the world, you didn't even need to go anywhere or have any money. You could just stay home all day and have sex and play house. I would have lived in a tent with my first husband. Forget sushi. Forget _Schindler's List_. I had finally found a degree of nerd who complemented my exact degree of nerd. What's more...I believed in him, in his novel, his writing, and his brain to the nth degree. I believed in all his dreams. He just didn't believe in mine and that's not his fault at all. I think I would have divorced me too. I was a jerk. I'd been so frantic to save both girls from having anything but a normal, perfect life. During that time, my remodeling and redecorating took on a decidedly aggressive tone. I don't know how anyone put up with me. I scraped so much wallpaper and flipped so many houses, I am probably responsible for the US housing crash.
But dating as a single mother is even worse than dating as a never-married woman. Yes, you know a little more about the deal breakers, the things you can live with, things you absolutely cannot abide. But when you have children, you have so much at stake, so much to protect. You don't want to harm a single hair on their little emotional heads. You've already done that to a certain extent if you've split up and had to move and change schools. It's a lot for tiny, delicate hearts to process. I didn't want to inflict any more damage than had already been done. I decided to keep things "church and state" when it came to dating and the kids. My heart was broken. I couldn't conceive of life without my ex-husband. Maybe he was my life's big love and that was it. In my mind, we had been through too much together to throw it all away. Still, I knew I needed to heal and figure how we were going to be a _Gilmore Girls_ –style household, so the most important thing was to have rules. Here's what I came up with:
_No introductions._ I was not introducing them to anyone unless I absolutely knew he was a person who could go the distance. This would not be a Disney movie where the kids would be peeking out the upstairs window as Mom's new friend arrived to pick her up for a date. If I were going to be dating anyone ever again there would have to be a lot of vetting off-site. Background checks, references, lab work, and so on. I would meet the person at the restaurant in my own car. There would be no nightcaps. I didn't want my kids getting attached to anyone who wasn't anything but a friend. I didn't want there to be any male "friends" hanging around. It just seemed wrong. Plus, I know my children and they're rascals. I didn't want them scaring off any truly worthy candidates. That was my department. They still managed to one-up me on this front one time. I was on a date and they locked the nanny out of the house with her phone and told her she couldn't come back inside unless she called me and said to come home right that instant. Needless to say, I made my excuses and cut the dinner short.
_No overnight guests._ I'd decided on no grown-up sleepovers unless I ever met someone and things got super serious. If there were going to be trysts en route to getting shack-up-together serious, they would have to be at the prospective person's house and not at my house when my kids were around. It would be too nerve racking and confusing—at least until everyone was much older. Myself included. This sort of worked for a while. Then, it didn't—but that can come in another book. So, dating was already complicated enough without factoring in a chronic condition, especially when the SMMMs (smug, mean, married moms) already thought you wanted to bed their doughy, boring husbands. Trust me, we don't. I don't. So that was another rule. Only date the fully divorced, knowing that their standard line is, "She was crazy. I just couldn't take it anymore and I'm so lonely." No, no, no. This was already a bad narrative that rarely ended well for the woman. With the diagnosis and subsequent seizures, dating changed yet again. All the forums and articles I'd read about dating with a chronic condition said to wait to tell the person when there's a foundation established. The problem is that I am a _terrible_ liar. My face (at least before I broke it) showed every fib, every fab (this is a really _big_ lie), every half truth, every whole truth, and every well-intentioned white lie. Before epilepsy I would have made the worst spy. Every emotion just showed up, plain as day. But when it comes to dating with epilepsy, suddenly you feel like every potential relationship is beginning with a lie, like you're carrying around this deep, dark secret. You have this big, scary vulnerability that is your ultimate kryptonite. If you are a really crappy liar as I am and you happen to think you might really like the person, you just want to take your glasses off like Clark Kent longs to do with Lois Lane and confess right then that really you're a spaz. Hiding such a big thing can feel like such a massive omission on your transcript.
So, do you confess? Do you just come right out and spill the brain beans? What hints can you drop along the way that might lessen the impact, the crushing blow of the news? Maybe they could already tell? You don't have to necessarily adopt the persona of "Angry Ep Truther," even if you are a little that way. If you wait until you've established a baseline of mutual trust, where he (or she) has shared some information about himself of equal proportion, it doesn't have to be so bad—even if you are a genetic _cauchemare._ My diagnosis brought with it a sustained fatalism—the knowledge that I might not wake up if the next time I seized had an odd effect. I no longer clung to life as I used to, which was kind of a huge game changer for a chronic worrier. I reasoned that if I wasn't going to wake up, I might as well go out satisfied. I was a horny motherfucker with the impulse control of a toddler. Oh, the promiscuities! My forties should have been about fighting off decay and the slow, sordid demise of my fuckability, but I think less about this now. The whole face rebuilding, learning to speak again, and getting seizure-free has distracted me. Epilepsy had me so scared that I would never find love again, at least not on any consistent basis with a single person I could stand. I suppose I could grandly pronounce, "Behold me in all my glory as an old, whitey spinster!" but the thing of it is, all of it has added up to be the best douchebag detector ever: my epilepsy, my slightly shifted face. I've also come to a time of life where getting your "freak" on starts taking on a whole new meaning, in that it's about finding the equal freak to your freak, the person who refuses to behave in the same way you refuse to behave. It's more a partners in crime slow burn than any rush of infatuation.
Telling someone you have something chronic like epilepsy, someone you think you might love and who might love you, can feel like pulling off Grandma's nightcap and revealing that you're the wolf. The person might scream, and you very well might howl, revealing a perfectly crooked grin, whereupon the person might kiss you. Or flee. It happens. We are, after all, not our mates. It's tricky because in revealing yourself so personally on such a fundamental, molecular level, you immediately shove the person right into a very gray area, one that generally shuts most guys up. Yes, you've gone on several dates and maybe even accepted a gift, you've made out with the person, felt around each other's curves and contours. There's no way after you tell him (or her) you're a spaz (or fill in your blank) that his next move won't be personal. It definitely will be—because you took a risk and revealed your biggest vulnerability. If his next decision doesn't become specifically about you and wanting to understand more of what epilepsy means, he winds up looking like a super-shallow jerk. It's hard and awkward, because you just hope the person will be better than they sometimes are. Any relationship worth being in usually comes with some complexity and angst. Everyone has something they're grappling with even if it's not readily apparent. You may not have epilepsy, but you've got a racist granny or a jailbird brother-in-law. Don't be fooled. No one is not dealing with something at some point. And if the person does react negatively at first or feel betrayed, it's not to say they'll stay that way. People need to be taught how to see us, how to respond and live with us.
The person may have noticed from your house that you have something medical going on, some more complex backstory than you've let on. I once had a boyfriend who mistook me for poor because my bed was on the floor. It had nothing to do with solvency at the time and everything to do with worrying about falling out of bed midseizure/midsex. I slept on a frameless mattress and had only rounded, padded corners throughout my house. There is a deep, intransigent weirdness of simply being a woman with epilepsy, a person who is electric. Now there is always a third person in the room, in the bed, and at the table. Seizures, as with most things chronic, tend to bring on some degree of sexual chaos. You need to be willing to embrace total abjection—neither subject nor object—because you, the spaz, are something in the middle. It may turn you into the butt of someone's joke, but perhaps your true kink lies in tricking yourself into being vulnerable and open enough to the threesome that is you, your partner, and epilepsy. Then, suddenly, there you are, looking like you've been struck by lightning and are dying over your white wine spritzer. Everything can feel very high stakes. "What if you seize while we're in the middle of things? What do I do?" he might venture. "Does ardent love-making bring on this sort of thing?" he asks timidly. "What if I accidentally kill you?"
"You won't. And if you did, _I_ certainly won't have any idea about it. I'll be dead. If epilepsy kills me, it's on science to figure out. For my part, given how gorgeous my seizures can be, it might not be the worst way to go." Not everyone is up for an answer like that and so you end up having to get over a lot of relationships that never were, relationships you imagined going somewhere, because people are simply scared and seizures break all social contracts. But again, it's a great douchebag detector. Then there's the friend zone: we're so filled with longing as human beings. You just want to lie in the bed with someone, to feel close in a way you haven't in ages. Boys _always_ employ this line, so it's even more suspicious when it comes out of a girl's mouth. It is the line of every nice guy negotiating to spend the night, and then you find yourself making up excuses and half-seriously speaking in the patois of consent by referencing the respecting of boundaries and keeping your clothes on.
While I haven't had a tonic-clonic seizure in eighteen months, my brain will never be "normal." It will always control my life in ways other people can't even imagine. Anxiety in grocery stores and Martinson coffee is still a factor, but it doesn't define me as much anymore. It's no longer the first thing I tell workout buddies; friends can be around me for months before they notice or ask about my strange sleeping habits. I have made a religion of bedtime. It's simply the same rites with the same pills at the same time. Lack of sleep is probably my biggest seizure trigger. I still sleep more than anyone I know. It makes me boring, all these naps, but I no longer care what people think, so much. My condition and my meds are slowly becoming something people gradually realize about me rather than something I stress about them needing to know right at the get-go. I school them gently in a do–re–mi of to-dos should I ever have a seizure in their company. I tell them how my mind begins to float and swarm, like fireflies in a jar. It's a "shit's going to go down" panic that tells me to get to a safe place. A soft place. There's the shimmer and I'll feel like a current is rising up and passing through the top of my head, glowing, and flying out my eyes while I lie on the bed or the ground. "I'm buzzing," I'll say and then of course I'll be unsure how to follow up the phrase. What can I say to help the person understand? A shallow exhale of anxiety is what you have come to anticipate and expect. Sometimes I'm convinced that no other person will ever know my electric brain the way I do and that I'll always be on my own because of it.
But unless it's the right freak for my freakish self, maybe it's not so bad. In this way, love becomes terribly self-selecting. Those too afraid take themselves out of the equation. Those curious enough tend to stay. 15 I Feel Bad About My Face "OKAY, MS. JONES, now if you could just try to look as deformed as possible..." the nurse coached me from behind the camera as I gawped. "Oh, that's perfect!" The camera shutter clicked. "But...I didn't do anything!" "Oh, oh! Do that again!" More fervent shutter clicking. This was the most surreal photo shoot I'd ever been witness to. I attempted a full-scale Quasimodo expression by smiling with the part of my face that remained working—the area around the left corner of my lip and eye. Still, it was necessary if the insurance was going to cover the reconstructive procedures to retrofit the pieces of my face back together on a finer level and restore feeling. I'd been into the office for several meetings. My new boss in New York had recently all but told me that since the accident I was too ugly to come to client meetings. "They won't be comfortable doing business with you across the table" was, I believe, how he put it.
"I'm pretty sure you can't say that." I told him, in my best Waspy-Connecticut accent. "You're a contractor. I can say whatever I want," he shot back. And he was right. As a contract creative director, he could cancel my gig at any time for any reason he deemed appropriate. I had to get back to feeling and looking like the person whom people (even the jerks) recognized and knew. Still, I was so crazily down about the comment, I'd started half-jokingly referring to myself as a deformed girl in private. Ed had grown so irritated with me, he threatened to make a swear jar for my face. The rule was every time I mentioned how freakish, deformed, and/or asymmetrical I looked, I'd have to put a dollar in the jar—except by then I was almost totally out of money, so technically I would end up owing the jar, which we decided would make me even sadder. I really needed to return to work full time. More importantly, I needed to _feel_ like myself again. I still only had sensation from the very top of my cheeks up to my hairline.
The first weeks home from the hospital had not gone quite as I'd anticipated. For starters, I was really weak. Like seriously, old-cat-lady-with-a-walker weak. I shuffled around the apartment sucking down smoothies and finely pureed soups through a straw. I never seemed to be able to get enough calories into my person for everyday life, so I still slept fifteen hours daily. I think in my damaged aftermath I expected everything to go much faster and align with the pace of the city, especially now that I was back in my own bed. With the girls both away at school and at their dad's, the joint would be quiet and I would bounce back from this little crisis, I kept telling myself. Yes, I loved my little hovel of an apartment right next to the park with its overly large refrigerator, its floor-to-ceiling bookcases, and windows that opened out onto an overflowing jungle of a back garden. There was a green velvet chesterfield sofa that my friend Li helped me pick out, my striped overstuffed reading chair where I could lounge for hours, both legs hung over the arm. There were big chalkboards on the walls of the tiny kitchen for random ideas whenever they sprang up. Right in the heart of the 'hood, this apartment was ever so bright and calm in the back rooms. And there were so many birds. A symphony of finches and whippoorwills. Still, I nearly killed myself with a first post-op sneeze at home alone. The dust in the place was like a thick coat of frosting on Sophie's old turntable and all the surfaces, but I took comfort in the sameness of things, the small things that had _not_ changed. I'd been told the healing would be neither progressive nor linear. It would be an awkward slog of crawling an inch forward one day only to slip back five the next. One day my chin might feel like it was being stabbed with a dozen knives; the next day I might lose all sensation and be drooling like a Labrador. I just hadn't imagined it would be more than a few weeks, or as carnivalesque as it was turning out to be.
Initially, there was the "fate" phase of healing: the unavoidable, predestined, and decidedly monstrous facial swelling the doctors had warned me about. It happens in the wake of this type of surgery, where you first look like a helium-inflated cartoon of yourself. This set in for me just before I came home from the hospital, but it's one of those things where you tend to look like someone has taken your face off its scaffolding, rolled it out like a piecrust, reattached it at your hairline, and then blown it up like the Stay Puft Marshmallow Man. I studied myself constantly during those first days, keeping watch for any infinitesimal sign of improvement. Overall, my mug was vaguely triangle shaped. Between the cranial stiches, cuts, and bruises, I was full of random holes and irregular patterns. Then, as if by slow magic, my face started to shift like a Scooby-Doo villain mask deflating. It's the kind of thing where you just don't believe your body can actually make those kinds of wild, implausible Picasso-esque shapes. Originally, I had only thought that a mother's baby belly could grow to such a size. My mug was literally the elephant in the room. I felt so strikingly at odds with nature and so in contradiction with the rest of my skinny wimp of a frame. Yet somehow, my face, in growing against itself in order to heal, still managed to come up with all kinds of wacky geometry that was, in essence, _more me_ than me at the time. And so, as with birth, you just hope you have the requisite amount of chemicals, muscle memory, collagen and whatever-else hormones are needed to make everything you are seeing (and feeling) go back to the way it was before. (Please face, please?)
You might think the worst part of breaking your face is the surrealist swelling or the grotesquerie of stink that comes from not being able to brush the _insides_ of your teeth and tongue for a whole straight week at a time, or the fact that after a steady, monthlong diet of too-sweet smoothies and Jell-O cups, you hunger like a dying vampire for the taste, the texture, of salty medium-rare meat. I got so desperate one night, I thought, "Bitches gotta eat," so I ordered a bacon double cheeseburger from Jackson Hole on the Upper West Side, ground it to bits with a hand blender, and tried to suck it through a straw like some kind of mad beast with no real mouth to speak of. It was food torture porn of the worst kind. No, the worst, pettiest, most annoying bit was when the pressure bandages came off. It wasn't just that I was totally beaten up and still bearing stitches and cranial staples; it was that I had actually developed a massive zit underneath the bandages. And I hadn't even felt it coming. Without being able to feel my chin, I had no more _zitvoyance._ This had previously been one of my special powers: the uncanny clairvoyant ability to anticipate and fend off bouts of adult acne. Talk about adding insult to injury. _Not_ cool, body. I mean, I was already pretty torn up as it was. Give a girl a break, why don't you? Anyway, I immediately attacked that sucker with Neosporin cream; this is my only middle-aged acne wisdom that I bequeath to you all and I'm sure it's been proffered elsewhere on the Internet. (1) Don't ever break the skin. Don't squeeze things as, (a) that's gross, and (b) it just introduces infection. (2) Slather that cystic-zit-nightmare-about-to-happen in Neo cream—not the greasy clear stuff, the white cream. The next day, I usually find things have improved or gone away altogether.

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