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I saw a tunnel, then an uncooked chicken breast, a dull light and then pale pink fuzz – like insulation that had lost its bright candy colour. I was experiencing an aura. Up until that point, I thought an aura was something a psychic would decipher for $20. Apparently, it’s also the feeling you have before you experience a seizure.
We were celebrating my birthday that night and my mom had just brought out a chocolate cake with whipped cream dripping down the sides and sparklers on top. I swayed to the off-key tune of happy birthday and sliced into the cake with the type of wish that you make when you’re 23.
I was living at home with my parents while working at my first job in advertising. Every night, I would come home to my childhood bedroom with its purple walls and windows flecked with glitter paint.
After the birthday festivities wrapped up, I went upstairs to my bedroom. All of a sudden, I was on the ground with two paramedics standing above me.
“Hi, Hannah. Do you know where you are?”
My thoughts felt slow, like honey stuck at the bottom of the jar that couldn’t make it out.
“I don’t think I can remember. What happened? What’s happening?”
My mom said it sounded like someone had been jumping up and down. When she came upstairs, I was on the ground with my limbs stiffening and foam spilling out of my mouth. The seizure had lasted one minute and 30 seconds – the average time it takes to do a magic trick or change a light bulb. Also the time it took my dad to call 9-1-1 when you think that your child is dying.
The paramedics took me to the closest hospital. I lay in the ER for a few hours. After a few hours, I got some blood tests done.
“Everything looks fine. You’re good to go home and get some rest.”
I did some Googling and found that 1 in 10 people will have a single seizure in their lifetime. Maybe I’m that one person. Maybe this is my one time. A friend told me that her uncle had a seizure in his 20s and never had one again. A colleague of mine collapsed on his first day of work and doctors said that it was a seizure. It seemed like everyone had seizures. I soothed myself with hearsay.
When you have a seizure, you’re often advised to see a neurologist, which sounded like a fancy doctor that I didn’t need because I was sure that I was going to be the 1 in 10 people that only had one seizure in their life.
I went anyway. I lifted myself onto the stiff white tissue paper on the doctor’s table and waited for him to come in. The room smelled antiseptic, like a roll of gauze soaked in alcohol. When he walked in, he didn’t look me in the eye and exchanged no hellos or how are you’s. He flipped through my chart.
“All right, so you’ve had a seizure.”
He went on to briefly explain what a seizure was and what happens if I do have more than one. The things in life that I can’t do. And then, he got straight down to death.
“You know, if you keep having seizures and you don’t take medication, there is a risk of death. There’s a condition called SUDEP. That stands for sudden death in epilepsy and your risk is higher if your seizures aren’t controlled by medication. It’s like riding a bike without a helmet. You could have an accident and die without that helmet. So you’ll probably have to take medication.”
My throat felt tight. Medication? Death? A confusing bike analogy? I didn’t even have epilepsy.
I walked out of that appointment and started to cry in the waiting room. As I was about to leave, the woman working at the front desk came over and apologized.
“This is not the first time,” she paused, “he has made someone upset. You can call this number to report it.” She handed me a card.
I was diagnosed with epilepsy three months after that night of off-key singing and throwaway wish-making.
Since then, I’ve spent more time than I’d like in doctors’ offices, I’ve bitten my tongue until it was bruised and bloody and I’ve taken time off of work as my brain struggled to get my short-term memory back.
I experience tonic-clonic seizures, the type where you go unconscious and your limbs stiffen and shake. That means I can’t drive. I shouldn’t swim alone. Riding a bike alone is a risk. So is standing too close to the road and cooking alone. But I am certainly not alone. On this planet, 50 million people have a form of epilepsy, according to the World Health Organization.
Epilepsy is a chronic and unpredictable condition that doesn’t care if you have a big presentation tomorrow or a flight to catch. It doesn’t care if you’re in your childhood bedroom or standing on a street corner with no one to catch you before you hit the pavement. It’s an unexpected guest that shows up and sometimes never leaves.
I often read articles about people who have endured illness or trauma and emerged as a stronger, more resilient person. I’m envious of those people. I can imagine that takes an incredible amount of courage. After six years of living with epilepsy, I can’t say that I’ve become a tough-as-nails type of person. I will go on a walk with you and I might start crying or maybe I will cancel that walk because I just finished crying at home. I am basically the human equivalent of overripe fruit – soft and easily bruised. But, that is what I’ve come to appreciate most about my epilepsy. It has allowed me to sink so deeply into my feelings and bring others there with me. Friendships have never felt so honest and my relationship with myself has never felt so intimate. I guess I’ve found some unexpected strength in my softness.
I have a scar on my right calf from a seizure where I scraped my leg. It’s two dots with what looks like a mouth curled upward below them. A smiling face or a menacing grin? Every time I get out of the shower I see the scar and it reminds me of my seizures, like a souvenir. But lately, I’ve tried to see it differently. It’s not there to remind me of the fear that comes with epilepsy. It’s a reminder of all the happiness that can come in the in-between moments: when you’re on a walk, swimming with someone watching or when you’re cutting into your birthday cake.
Hannah Newport lives in Toronto.
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