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 befor
e 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.”
Gotham Girl Interrupted Page 9