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Running FOR something

August 17th, 2009

On September 27, 2009, I will be finishing a Half-Marathon run/walk in the Scotiabank Toronto Waterfront Marathon while raising funds for Epilepsy Toronto. Whether I run part of it, or walk all of it, doesn’t really matter. I’m going out there in support of Epilepsy Toronto and what they do.

As you may or may not know, I was diagnosed with Epilepsy a few days before my 21st birthday. I have bouts of partial-complex seizures that, while not harmful or even obvious to an observer, are disturbing and disruptive.

My seizures are far from what you might expect when you hear the term “Epilepsy”. I don’t convulse or lose consciousness. Instead, my seizures start with an aura of a kind; usually a smell like bacon and pancakes. (I know, weird, right?) And then, a metallic taste in the back of my mouth. I feel nauseous and just… well… wrong for about 60 seconds or so. After that wave of feeling passes, I’m back to normal, except a little more tired and feeling slightly out of place in the world.

When I was first diagnosed, I was terrified that it meant my life was over. After all, this is a pretty big and scary word when you only know what you hear in the media. I envisioned never being able to play nintendo, much less make a career of programming computers. I imagined needing a service animal (Cooper?) to help me cope with life. I anticipated never being able to drive on my own again.

Being diagnosed was all about fearing the freedoms I’d lose in my life.

As I worked through the list of anti-seizure drugs to find something that allowed me to physically get off the floor of my bedroom without falling over, I started to learn a few things about Epilepsy. And as I found a drug that made my life better rather than worse, I also learned one very important thing.

My life is not defined by this condition.

I didn’t have to stop doing the things I enjoyed. I didn’t have to change my decisions. I could still drive, provided my seizures stayed the same. I didn’t have to worry about losing my ability to think, to write, to learn, and to love.

In the past years, I’ve been almost entirely free of seizures. Whether it’s something I’ve more or less grown out of, no one knows. For an information junkie like me, it’s incredibly frustrating that despite all the neurologists and tests, no one has ever determined anything about the source, cause, or behavior of these seizures. I’ve been diagnosed strictly based on my descriptions of the episodes.

There’s a lot more information out there now for folks getting diagnosed with Epilepsy, or who suspect might have a seizure disorder. Organizations like Epilepsy Toronto do so much to help children and adults learn, get support, and live better lives.

Please support Epilepsy Toronto by pledging me for this event. Every little bit helps! If you care to pledge, please visit my sponsorship page. My goal for the event is $250CAD, but I’m hoping to raise what I can to help improve the lives of other folks living with Epilepsy.

Please sponsor me today!

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One Response to “Running FOR something”

  1. Sameer Vasta Says:

    Thanks for sharing this Amy. Wishing you tons of luck on the run.

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