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 s
ystem-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?
Gotham Girl Interrupted Page 10