Justin

Sometimes I flail about randomly, my arms and legs awkwardly spasming as though I'm a puppet and the puppet master is tripping on acid.

Sometimes I disconnect from the world and stare off into the abyss, unable to speak although I can understand what any person says to me.

Both these things happen without me having any say in it at all.

It's alarming what little control I have over my body.

It's alarming what people see compared to what I see.

Epilepsy is the iceberg and the seizures are the tip of it. What people miss out on seeing are the altered senses, confusion, depression, dizziness, loss of awareness, loss of consciousness, loss of muscle control, repetitive movements, and worst of all, the exhaustion. All those components are living beneath the water, thriving inside me and waiting to creep to the surface when I'm most vulnerable.

I can't even begin to explain how complicated my situation is, but if I had to summarize my shitty life it'd go something like this: When I was ten-years-old, I had my first partial seizure – a moment of pure panic that dug its claws into my stomach until blood was seeping out. Mom and Dad figured it was an extreme panic attack, as did the family doctor, as did every single stupid fuck in the world around me. At the age of thirteen, my parents had a nasty divorce, one that required my mom and I to move from Cache Creek to West Kelowna. One year later, when I was playing hockey, I lost consciousness on the ice. Just fell right over and lost control of my body, according to what my mom said to me when I woke up an hour later in the ER. Then the doctor, with his greasy beard and thick-framed glasses, walked in and broke the news to me that I'd been sporting a brain tumour since birth that has been causing partial and now tonic-clonic seizures, and that it needed to be removed. By the time December came around, the tumour was removed and everything was looking good. But all good things come to an end. Exactly one month after the invasive surgery, both types of seizures returned to this prison I have to call my body thanks to the scar tissue in my brain. Since then, my life has been shit.

Now, at the age of seventeen, I'm stuck on a strict schedule of three different medications, not allowed to go near the steering wheel of a vehicle, prohibited from going anywhere alone, and trapped, trapped, trapped.

Epilepsy sucks. It is always present, even when under control medically. It is unwelcome, crippling, and limiting in more fucking ways than I can count, and when I'm exhausted or angry, I start to feel sorry for myself. I've never met another soul with the same chronic illness, and it gets lonely, which leads to depression.

Loneliness aside, what annoys me most is the strange taboo around epilepsy. I guess we've made some adequate improvements over the past hundred years – I have yet to be burned at the stake because I'm supposedly possessed by demons – but people are still agonizingly uncomfortable around me when I tell them I'm epileptic.

All in all, this shitty illness has ruptured my life in many, many ways. I barely know who I am anymore. I'm no longer that athletic boy who used to be the top player of his hockey team, could get any girl he wanted, had the confidence to do anything and everything.

I am the shell of a boy that I once was.

I am an introvert that prefers to keep my head down and count down the seconds until the day is over.

I am nothing more than a fucking waste that's filling up the empty space.

I used to wish that something would give – that things would turn around. But like I learned the hard way: Hope really does breed eternal misery. After being reminded of what happiness felt like, only to have it ripped away from me once more, I don't ever want to feel it again.

The simple fact of it is that my life sucks and I don't know why I'm bothering to live it. But for some reason, I keep going.

"Justin!" Mom calls from downstairs. "Have you taken your pills yet?"

I look down at the stupid container in my hand – the type that old people use for their pills so they can remember the days of the week. The container is plastic and blue and full of six pills per day. Three for today, considering I already choked down three of the chalky things this morning.

My feet sticking to the cold tile of the bathroom, I look into the mirror. My skin is paler than normal. My hair is a dead blond colour, styled in some weird-ass undercut with fringe. I've lost the muscles I used to have when I played hockey. The dark purple smudges beneath my sapphire eyes make me look like I'm one step away from becoming a walking corpse.

I'm a shell.

This body is a prison for my soul.

"Just taking them," I shout back, my voice wavering. I mentally curse. I try to hide how broken I feel from my mom. Having a kid that has epilepsy worries her enough because it makes me a liability. But adding in how shitty I feel 24/7? It would give her a heart attack. So I do my best to hide it. 

"Okay," she calls, her voice travelling up the stairs. "When you're finished with them, come downstairs so we can discuss school tomorrow."

I don't respond to her.

Though she gave me the choice of being homeschooled this year since the seizures have gotten worse over the past couple of months, I denied it and decided to go to the public high school. Perhaps it's because I'm new here and no one knows about my crippling illness. It's like my own personal tabula rasa– my own blank slate. Without anyone knowing me, I can wander through the shadows and keep myself hidden from everyone.

It's better than sitting at home and wallowing in nothing but my own poisonous thoughts.

Opening the Monday compartment, I extract the final three pills and pop them into my mouth. The chalkiness of them coats my tongue and a bitter taste seeps into my taste buds. As quick as I can, I turn on the tap and drink the water straight from it, swallowing the pills that have better control over my body than I ever will.

Wiping away the droplets of water that missed my mouth with the back of my hand, I shut off the tap and glance at my reflection one last time.

I am the boy no one can stand.

I am the wandering shadow that's been caught in a human suit that continuously glitches.

Pulling up the hood of my black hoodie, I flick the light switch and head downstairs, already dreading this conversation I'm going to be having with my mom.  

Step-by-step, I try to ignore the brokenness inside me.