Op-ed: Epilepsy Awareness Month

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November used to be the month that just meant fall has officially arrived. 

 

March 28th used to be just an average day like any other and not one that symbolized anything.

 

Epilepsy used to be that disorder where some people would have seizures when exposed to flashing lights.

 

I never thought that November would mean the one month where I felt my condition was being heard, or the March 28 would make the beginning of what would be my battle with my own brain or that epilepsy would become a part of me, whether I liked it or not.

 

Things aren’t the same as they one were. Purple will always be a bittersweet color and my birthday month now has a sadness to it. This is the nature of epilepsy, it takes activities that are normal to other people- like feeling stress or seeing strobes or missing a snack- and makes it forever tainted. And for whatever reason, that’s just something I’ll have to live with now.

 

November is Epilepsy Awareness Month. It talks to everybody. It tells epileptics to have hope and non-epileptics to give us hope. It aims for research and funding and first-aid and the end of the condition. It paints social media pages with purple ribbons and links to donate to. It is here for 30 days and then it is over.

 

Over for you, but not for me.

 

I have to live with epilepsy, Not for 30 days, but for the rest of my days. I had to stop asking myself “why” and start asking “what now”? That’s really what Epilepsy Awareness Month is all about- what now? What can we do?

 

Maybe that means posting infographics on your Facebook. Maybe it means telling what you once thought epilepsy was compared to what you know about it now. For me, sometimes all it means is sharing my story. 

 

I have epilepsy. I went 18 years without having a seizure and now I can never go more than a month. Before I make my breakfast I take my pills and soon I’ll have to take ten of them a day. The upper left cabinet in the kitchen is a multi-colored, pharmaceutical graveyard of all my past medications that didn’t work. I am always trying to keep my balance on my thin tightrope, keeping myself away for the from the inevitable fall that are my seizures. Sometimes when I am alone and there is nothing else to think about I reflect on everything I just listed and feel a deep sadness. I mourn what I’ve lost and what I now have.

 

But most of the time it’s just another month.