The night before NSOP, I spent an entire dinner explaining a TED talk to my parents. I think that offers a kind of karmic explanation for the rest of the evening.
“I don’t get it,” Mum said, “of course a monkey would prefer a banana to 20 dollars?”
I began a sentence in reply. I wanted to say the word “monkey,” but the two syllables wouldn’t come out.
Around my mother and me, the trendy downtown restaurant continued to bustle, but we had frozen to a stop. I watched my mother’s expression turn from confusion to fear.
When I looked around again I was in an ambulance, a paramedic holding my arm. I’m not old enough to drink in this country and I drank some of my parents’ wine and now they’re checking my blood alcohol and I’m going to be deported after less than a week here.
Where had the time and space between the restaurant and the ambulance gone? I felt nauseous and confused. Maybe I said this aloud.
The rest of that evening—in fact, much of my first six months of university—is murky. It took me several days to notice that my chest was covered in bruises from where, as my parents later told me, a fellow restaurant patron had attempted CPR. I wasn’t quite able to picture the scene, and I had little energy to devote to trying. It was like I’d run a marathon, but I didn’t remember running it.
The day after the restaurant incident, my parents and I sat in my new neurologist’s office. The story at this point had become quite amusing to me. I even began spinning it over the phone to family and friends: I highlighted the pointless argument (typical me), my confusion in the ambulance, and how well I now felt.
That first meeting with my neurologist assured me that I had been right to build this breezy narrative. He was relaxed and joked easily with my parents, who seemed as shocked about the American health care system as about what we were now calling my seizure. “Seizure” didn’t faze me much either.
My mother had often told the story of the febrile seizure I’d had as a small child. I walked down the hallway toward her and suddenly stopped moving. My lips went blue. She rushed me to the hospital, but by the time we arrived I was laughing and running around the reception. She told the story with good humor, but there was a hint of reprimand in her tone as well.
Don’t do it again, though was the suggestion behind the laugh.
“Normally I would ask if there had been any learning difficulties,” the neurologist said, “but given where you’re about to start college, I don’t think that’s an issue.”
“Oh God,” I said, and looked at Mum. I was desperate for my parents to feel as at ease as I was, and bad jokes had become my weapon of choice. “That A minus last year finally makes sense.” I made the jokes apologetically, and when Mum laughed, she used that same tone of reprimand. I had done it again.
The doctor asked me what I remembered, and I spoke about trying to get the word out of my mouth. “She was very frustrated,” Mum said, “and then she couldn’t speak, and then she went all stiff, and her lips went blue… Was she breathing?”
“How long was she unresponsive?” the neurologist asked.
“About 15 minutes,” Dad said.
“Well she was definitely breathing,” the neurologist said, “otherwise she’d be dead.”
The tests were less than pleasant. I hadn’t slept all night in preparation for the electroencephalogram, during which I was allowed to finally sleep, albeit in a room full of machines. I was woken after 20 minutes, and we traveled elsewhere for the magnetic resonance imaging. A nurse injected dye into my arm, and I was placed inside one of those mammoth grey tunnels I’d only ever seen on Grey’s Anatomy. You know, just before the patient is told their runny nose is actually a symptom of a giant brain tumor and they have 12 hours to live.
Inside the MRI was even worse. It was too cold to be wearing only a hospital gown. The roof of the tunnel was far closer to my face than I’d expected, and just as the claustrophobia started setting in, the hammering began. I recalled the rules my neurologist had laid down for me the day before. Never swim alone. Stay away from bathtubs and the edges of subway platforms. I’m not allowed to take a bath ever again, I thought, and even though I’d always been more of a shower person anyway, I suddenly couldn’t stop crying.
The MRI dragged on, but I was so eager to never have to do it again that I kept my head perfectly still. I hoped, in my panic, that the tears wouldn’t interfere with the scan.
The tests came back “abnormal,” and I was pronounced “officially epileptic.” (A diagnosis or an excellent band name?) My seizures appeared to be induced by sleep deprivation and stress. My neurologist prescribed daily anti-seizure medication, and I started taking the pills my first week of college—pills which I would have to take for at least for the next four years.
I began to worry in earnest that my up-till-then relatively successful school career had been a fluke. I worried that I would walk into my first college class and be exposed, that my brain would turn out to be a deeply flawed operating system—maybe even more flawed than I had just discovered. I began Googling in that terrible, spiraling way. “Juvenile myoclonic epilepsy low IQ;” “Juvenile myoclonic epilepsy high IQ;” “Juvenile myoclonic epilepsy notable figures.” The only real answer I got was on that last search. Just Lil Wayne, it turns out.
My rental refrigerator was already in my dorm when I first arrived. I opened it and found a six-pack of Red Bull inside with a thank you note on it from the rental company. The sides of the Red Bull box featured a slogan: “No one wishes they had slept more in college.” I gave the drinks to a girl down the hall.
Halfway through the first semester, I dragged that same fridge down two floors to a new room. Residential Life was particularly chaotic that year and as a result, I now had one weekend to move from my single into a double with a stranger (“We maintain the right to move anyone at any time for any reason”). By 2 a.m. Monday morning, I’d moved all of my belongings but hadn’t had time to sort through the mound of stuff piled around my bed. My medication was lost among the mess, but I was too exhausted to find it before I fell asleep.
After classes the next day, while I tried to unpack, I became overwhelmed with nausea. I’d never felt so acutely sick. I went out into the hallway but suddenly didn’t feel that I could cross the ledge into the bathroom. I sat against the wall, and at some point, someone walked past and asked if I was okay. I nodded and waved them away. I remember crawling back over the threshold into my room because I couldn’t walk.
I wasn’t confused when I came to this time. There was an awful recognition in my limbs and my head. The next day, I apologised to my new roommate—I had a vague memory of ignoring her when I climbed into bed. I should have explained.
“Oh my God, that’s what happened. Yeah, I thought you were having like, a weird nap on the floor.”
I had one more grand mal seizure that year. Less than the seizures themselves, the fatigue that followed them became a semipermanent fixture of my life and still sits like a fog in my memory of first year. Just one seizure could put me behind on two weeks of work, and I felt that I was in permanent catch-up mode. I was constantly on the brink of falling asleep in my morning classes and missed half of the nighttime extracurriculars I’d signed up for. I was reticent to talk about it with anyone because what could they do? Being tired seemed to me neither a concrete nor a valid problem, and bringing it up could only inspire, at best, helplessness.
When I next went home, lots of friends and family asked about the epilepsy, and I gave them the fun story I’d crafted in the beginning, now bolstered by that quote from the roommate. I got laughs and I felt I was doing a good thing, making sure there was nothing burdensome about the story for other people.
One night, I was with my family, and I started telling “the funny story” again. Dad stopped me halfway through and looked me in the eye.
“We thought you were dead.”
I stopped talking. Of course they would have thought that. And not for a split second but for several minutes. Of course it had been easy for me to process this all as some kind of fun, edgy new part of my personal narrative; I hadn’t even been there.
One day the following summer, I was traveling by myself, and I hadn’t had a particularly pleasant day in transit. It was hot, the trains were slow, and my bag was too heavy for me to handle. By the time I arrived at my accommodation in the new town, I was covered in blisters and bruises, and I desperately needed to change.
I went into the bathroom and found the most beautiful tub I had ever seen. I slumped down, exhausted, and began to play with the taps. Absentmindedly, I put the plug in and poured in some of the soap in the jug next to me. I turned off the taps when the water level seemed appropriate for a toddler, surely too shallow to drown in. I undressed and climbed in, and for 10 minutes, couldn’t believe I’d never been a committed bathtub person. I quietly thought that if I were to drown, this wouldn’t be the worst place to die.
At least, it wouldn’t be the worst for me.
I jumped out of the tub like I’d been slapped and drained the water like I was removing evidence. I would learn how to truly enjoy showers.
Enjoy leafing through our fourth issue!