Living with Epilepsy, an extreme sport

The brain has its own superpower. In some people it handles that power differently; becomes overwhelmed and shares the power with other parts of the body into jerking- some people call these seizures, if it’s recurrent enough, you’ll get the tag called Epilepsy.

When I was 16, I got an early Christmas present, a diagnosis more loaded than the freshly baked turkey that became a tradition at our home. I spent the holidays on a ward with other people who had the same wishes as me; to go home, to sleep in their own bed, to be healed of whatever ‘untasty’ meal we’ve been dished out. We’ve all been dubbed strong and resilient but there are days where we don’t feel that way.

Living with Epilepsy is an extreme sport, you never know when you can have an episode and as much as you train for it, the bigger opponent which is your triggers are always watching from the shadows to pounce when you least expect it. For me, it is strobe lights or lights that blink too quickly in transition.

About a year ago, I woke up in a hospital gown and unzipped pants; had an “Ah ha” moment. My mouth coated in breakfast. I remembered not being alone when it happened. Felt my body not remembering itself. It had happened again. My epilepsy was active. I’m not sure what hurt more, the revealing of my near-death experience or my count to 8 months was all messed up or the reminder of not being “normal”. I spent 6 days in the hospital. Some days were harder than some.

Epilepsy is a giant; it brings its entire army out. Besides the seizures, we’re subjected to mental health illnesses such as depression and anxiety. What’s hard about that is that emotional stress is also a trigger and so you can see the domino effect. Taking medication; anti-epileptic drugs, can help to reduce seizure activity but the million side effects can place you between a rock and a hard place.

Living with epilepsy can be uncomfortable if there’s no support or love. It does get hard and heart-breaking sometimes, when you have to stand in party and turn away from the unexpected strobe lights or close your eyes into void when police vehicles pass with siren lights twirling or having to explain every time you’re offered a drink because “No” is always too much of a huge bolus to swallow.

I’ve seen and experienced first-hand what it is like for people around you to not be aware of how to deal with an epileptic. I’ve woken up on tables and someone trying to force my locked jaw open with a spoon. These practices are very common because persons aren’t sensitized to know how seizure first aid works.

My biggest fear is traveling and experiencing a seizure and no one knows what to do. I’ve started walking around with the first aid tools printed in paper in my pocket in the hope that someone will read it. 

Epilepsy is not a death sentence but being in the wrong place, with no one who knows how to treat can be that; your life is literally in someone else’s hands. Sometimes it is easy to think when a thing does not affect you then it doesn’t exist but everyone with a brain can experience a seizure because it is a brain thing. It wouldn’t hurt to learn or share a post. We can all make each other well.

If you know someone who has epilepsy, the best thing you can do for them is to just be there. The worst thing you can do is treat them as if they’re incapable of functioning as a regular human being because they are. Some tasks might be challenging but we can get it done. We’re limitless and strong and resilient, it just takes time to be well and whole- but we’d get there.

Epilepsy isn’t a demonic condition. Epilepsy isn’t a myth, I am not the product of a fallen angel. Epilepsy isn’t a part of my CV. Epilepsy doesn’t impair me from completing tasks to the best of my ability. Epilepsy doesn’t make me special.

Ashlee Burnett

Writer. Poet. Teaching Artist. Digital Marketing Officer

Co-founder B Communications

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