Twenty Years with Epilepsy

Today is the 20-year anniversary of the first identified tonic clonic seizure I ever had. For the last twenty years, I have been epileptic, a person with epilepsy, a person with a seizure disorder. It’s kind of shocking to me even that it’s been twenty years. I try to think about where I will be in twenty years from now and it seems way too far away. I try to think about anything else from twenty years ago and there’s not specifically a whole lot. “…Baby One More Time” by Britney Spears was the top song that week. “Payback” with Mel Gibson was the top film.

In the last twenty years, I have experienced severe and minor injuries, endless medical testing, changing pharmaceuticals, discrimination, rejection and countless other challenges. I have been insecure, unsure and afraid. I have been told about the future that I would never be able to have because of being epileptic. I watched others grow up without epilepsy, without medical conditions and there were times I was resentful. How easy would life be if I didn’t have to worry about seizures? How much more could I do if I didn’t have the weight of being epileptic holding me down? Sometimes I’ve felt so lost I could have been an Alice in Wonderland quote “If you don’t know where you’re going, it doesn’t matter what road you take”. I certainly didn’t know where I was going twenty years ago.

It’s hard enough being a teenager, but then to add in the statements that I would never be able to live on my own, would always be at risk for injuries, likely wouldn’t finish high school, couldn’t travel, wouldn’t be able to work or being in an adult relationship, it’s hard to see beyond that. I have faced discrimination twenty years ago and in the present. I’ve had people who were so uncomfortable with knowing I had a permanent medical condition and could have a seizure unexpectedly that they chose not to be friends with me, employ me, date me. Their fear was stronger than the value they thought I offered.

And yet, not all those who wander are lost.

I have lived on my own. I have two university degrees. I am employed in a professional career. I have been in relationships. I have friends. In addition to those things: I have run three marathons. I have travelled internationally. I have spoken at conferences about my condition and experiences because people wanted to hear it. I’ve been in a magazine. Just a couple days ago, someone told me that they’ve registered for a race and I was the role model that got them to that place. I’ve had amazing feedback from this blog.

Maybe I don’t know what the measure is for everyone else on the things that make them feel successful or happy, but for me: I’ve pushed my body to be capable of running for hours. I’ve used my brain and worked for the two degrees. More importantly, someone heard my story and that motivated them. I have no idea if that’s just once, or it’s happened other times, but that on its own gives me happiness.

In the last twenty years, I’ve had (give or take) maybe a hundred seizures. But for the last 7,300 days (give or take), I have definitely been epileptic. Which is more than just seizures. And I’m okay with that. It hasn’t stopped me from making goals and reaching them. For the times I’ve been told I can’t do something, my response has been “yes I can”. And I’ve at least tried. There were so many roads I could have chosen to take, and while not every decision I’ve made has been perfect, if nothing else, I’m happy with the route I chose.

Here’s to the next twenty years, and beyond!

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