Looking at the calendar, I’m reminded it’s been a stressful month. Many of the days when I should have been at school are marked with a yellow highlighter. The semester is ending and I’m under pressure and scrambling to catch up. I’ve missed my Creative Writing class almost every week.
Today I don’t need my highlighter because it has been seizure free.
The First One
I was 8 years old, playing, laughing and showing off. I was attempting a backflip off the monkey bars during recess. If I remember right, it started well. And then I –
“Are you afraid of us?” a man’s voice asked me. It came from nowhere in particular, and behind me, then near my ear. My eyes were closed. My body was warm, very warm. Someone was holding me. I was in someone’s lap. Blink. Blink. I saw an oxygen mask, a hand, a blue sleeve, a button. I tried to look down but dizziness overtook me and I started to fall forwards. Black boots.
“No…” I managed.
“Okay then sweetheart, I’m just going to hold this oxygen mask up to your face then. It won’t hurt. Okay?”
The Principal of the school called my mom and said, “Your daughter is not responding.”
On the ambulance ride from my elementary school in Tsawwassen to Vancouver General Hospital, my mom and I held hands in joint fear and confusion. I cried. I twisted but was strapped into the stretcher. My grip was so tight that I pulled the tendon in my mom’s thumb.
I am Afraid of Mustard
It was hot dog day at school: One of the best days of the year. No packed lunch. I remember filling out the order form weeks before. One hot dog, one chocolate milk, one doughnut.
Lunchtime had arrived. The sweet aroma of boiled wieners! Grade three kids with sticky fingers were scrambling for ketchup packs. Laughter. A boy whose name I can’t remember opened his bun, took the wiener out, filled it with mustard, put the wiener back in and held the whole mess as close to my face as he could before he squished the bun closed into a bright yellow glob. Mustard oozed out in all directions. If his intention was to gross me out, which is often the intention of eight-year old boys, it worked. If his intention was to scare me, I think it backfired. It was probably just coincidence, but I ended up having another seizure.
I fell to the floor. My teacher ran to me. Lifted me. My shirt came right up and all the girls giggled – the boys were deadly quiet. More sirens.
Eggs and Jellies
I was sent to BC Children’s Hospital and given a private room. I had a large window beside my bed and I looked out of it constantly. I remember cars driving, people walking, and trees blowing. I watched the door too, for my parents, for my friends, for nurses or doctors. I almost always had someone by my side, but when I didn’t, I waited.
My dad came to see me early one morning.
“You’re going to have a test done today called an EEG.” He reached to help me off the bed, but I was already off and at his feet.
“An egg?” My eyes were full of curiosity.
“No, no. E-E-G, not ‘egg’. It’s pretty simple, they attach some wires to your head and then they see what’s going on in that noggin of yours.” My curiosity quickly turned to fear. Eggs I understood, this I did not.
Soon after, I sat in a chair as the EEG technician measured the circumference of my head. With a red pencil crayon he made markings all over it. I winced. My dad smiled and nodded to reassure me. When I noticed a blue control box with wires coming out of it, I remembered what he had told me earlier. I started to tremble with concern. The technician felt the vibrations in my little body.
“Don’t worry about those, I’m just going to put a little glue on them, kind of like the glue you use at school, fun stuff that’s all, and then I’ll stick them on, but when we’re done they’ll wash right out. Even better, you’ll be lying down and you won’t even see them! Sound okay?” I nodded.
The EEG was underway. On a table, a big machine, much like a polygraph, was measuring the neurons in my brain that the technician had targeted with the wires. Waves of paper with ink peaks and valleys on them fell to the floor. The needles moved up and down. Up and down.
I couldn’t understand EEG test results, but later that day my parents came in with a neurologist. It was time for the “You have Epilepsy talk.” More important to me, though, was that I was finally able to go home.
After dinner my mom held an enormous orange gel capsule and stared at it bewildered. It was my first anti-seizure medication — Ethosuximide.
“Let’s not call them pills, okay?” She sounded optimistic, and asked me for suggestions.
“It looks like a jelly bean to me.” The name stuck.
The next problem was swallowing such an enormous thing. My mom encouraged me to try to take as much time as I needed. Waste as many as I needed. Do the best I could.
I put the jelly in my mouth and took a sip of cold water. It wouldn’t go down. I promptly bit down hard. The inner guts of the capsule spewed into my mouth and down my throat. Battery acid, rotten oranges, sour cream. I instantly threw up into the kitchen sink.
I learned to swallow pills that night.
Happy 13th Birthday
The neurologist had given the order! It was time to try taking me off the jellies. Maybe I’d outgrown the seizures.
My life had already returned to normal. I played basketball, was on the volleyball team, had crushes on several different boys, went rollerblading (always with a helmet to appease my mom), kept a diary, and jumped on the trampoline. I did kid things and I took jellies. I was ready for the jellies to leave the equation.
My family and I spent the first few jelly-free days waiting for a seizure. The next few we relaxed a little and after the second week we were back to the doctor’s.
“I can’t believe it. She has even more energy now! Can you put her back on them?” my mom said, laughing.
The doctor gave me a pat on the shoulder. “So she’s doing great. That’s so good to hear. There’s really no need to come back unless, well, let’s not go there.” He escorted us out of his office. I waved goodbye. Goodbye forever. Goodbye!
Starbucks and Mr. BIGs
My sister was on to me — after having nearly two seizure-free years, I was having them again, but so far I had kept it between my friends at school and myself. My parents did see something different about me, but they confused it with me being a goofy 15-year old artsy daydreamer. Really, I was having absence seizures. They only lasted five, maybe 10 seconds, but I’d stare off, eyes glazed over, pulling absently at my hair. That’s an automatism – I’d read about it in one of my mom’s medical encyclopedias.
I had a seizure at the kitchen table during dinner one night. I was telling my dad a story about my project in drafting class. I was the only girl in the class and –
I dropped off mid-sentence. When the zoning out ended and I came back, I saw my sister eyeing me from across the table. I kept my eyes locked on hers and shook my head just slightly to tell her, “No.”
I heard my dad say, “What happened? You have a slow processor chip.” I thought, what a jerk, if he only knew, but I couldn’t tell him. I didn’t want to have epilepsy again and denying it seemed to hold off the diagnosis.
Later, I found Jenn upstairs in her bedroom and produced a Mr. Big bar that I’d bought earlier from the high school vending machine.
“Just don’t tell, okay?” I held it out to her waiting hand, but didn’t let go until she agreed. An alliance had been forged.
Although three years younger, my sister was smart and business-minded. What started out as Mr. Big bars as a means of buying her off, something I could easily afford by delving into my summertime job savings, quickly turned into Starbucks drinks. I suppose I also upped the ante. A few seizures here and there multiplied into upwards of hundreds a day.
Soon my parents were also questioning me relentlessly about my zoning out. I made excuse after excuse. I was tired. I had a headache. I was thinking hard about something else. I was daydreaming. Their concern never ceased – neither did my lies.
You Do The Math
I passed my driving exam, I graduated. I worked, bought a car, and got accepted into the Architecture and Building Engineering Technology program at the British Columbia Institute of Technology. I made the 45-minute drive through rush hour traffic Monday through Friday every semester for a year. I loved school. I designed. I drew. I designed some more. I drew some more. I stayed at my drafting table until well after dark. One day security came and told me they had to lock up the building and I realized six hours had passed by like one. I had found my passion. The engineering part was harder, the math kept my brain sharp, and I could feel folds in my forehead forming as I pressed on, question after question, seizure after seizure.
One night, driving home from school after a long day of classes, I had a seizure and found myself stopped in the middle of the road with the car in reverse. I was near home on a quiet street, but for the first time I was scared.
Even I couldn’t deny I needed help. I made an appointment with my family doctor. When my parents asked what it was about, I told them I’d hurt my wrist drafting. It was a silly lie, but for some reason it came easier than the truth.
I took my best friend to the appointment. I explained my “zoning out” experiences and it didn’t take long for my doctor to say the words I knew were coming. “It sounds like you are having seizures to me.”
The Dark Side
I tried several cocktails of anti-seizure medications. I broke out into rashes. I hallucinated. I became manic. I gained weight, I lost weight. My hands shook. I couldn’t concentrate, and my memory was gone. I couldn’t understand my math homework. Some days I could barely read.
My neurologist spent months switching my medication in order to find the right one, and the right dose to control my seizures. In the meantime, I’d fallen into a deep depression.
I dropped-out of school.
My sister came into my room one morning while I was sleeping. Startled awake, I asked if I was late for class.
“You aren’t in school anymore, remember?” she said, a hint of sadness in her voice.
I stayed in my bedroom alone for days and played Tetris. My only goal was to beat my own high score.
My mom encouraged me to come out and talk. I had told her everything but she was still confused.
“Why didn’t you tell us earlier?” I had no answer. Maybe I wished they had seen seen through my lies and taken me to the doctor ages ago when I didn’t have the courage to do it myself. I was afraid. I may have been older but I was still a scared little girl.
In time, my seizures were finally controlled – at a cost. The side effects hampered my ability to do math and I was never able to return to the architecture program at BCIT.
“Control” is a word I use cautiously, because for anyone with epilepsy, there are triggers that can still bring on a seizure despite medication. My personal nemesis is lack of sleep. Stress is a very close second, with poor diet a distant third. I constantly have to keep these things in check or I will seize.
When I was 24, my family relocated from the mainland to Vancouver Island. The move was nerve-wracking, but it was the best thing that ever happened to me. I instantly felt at peace with the slower pace and the natural beauty that my new home had to offer.
Soon I started to feel well enough to attend Vancouver Island University and pursue a new goal: Creative writing. Going to school again invigorated my spirit. I had a renewed energy for learning.
The best part was I met my husband, Tom, on campus. We started dating, and were married three years later.
Catch Me if You Can
My husband learned the hard way that when school got stressful, my medication stopped doing its job.
Early in our relationship I got some pretty bad bruises from some nasty falls. My neurologist was boggled by exactly what kind of seizure I was having this time and the medication changes started again. In the meantime, Tom learned what to look for. A distant look in my eyes, a slowing of my speech, and stranger things: I’d pick up animals. When I tried to pick up our 60-pound dog at the dog park my husband was alerted and ran to me. He put his arms around me, and moments later I collapsed into them, unconscious.
Once Tom learned these signals, he began to catch me on my way down to the ground. If I seized alone, I would fall to the ground and wake up in Nanaimo General Hospital’s Emergency Department. After a phone call from the attending nurse, my husband would arrive and we’d hold hands until I felt the fog of the seizure lift from my brain.
It’s Not Who I Am
I used to call my pills “jellies,” I used to call seizures “zoning out,” I denied having seizures, and then when I finally accepted the fact that I had seizures, I denied having epilepsy. Now, 22 years after my first seizure, I can finally, comfortably say, “I have epilepsy.” But I can also say that I have a loving husband. I have two cats and a dog. I have a loving family, I know just about everything there is to know about architecture and engineering despite not having a degree, I have an irrational fear of mustard, I love life, and oh, I have a sister who owes me about a thousand dollars worth of Starbucks drinks – oh, how she used me.
Katelyn interviews Tom: