THE FRUSTRATED EPILEPTIC.
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One of the Purple People.

3/26/2019

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I don’t really like the color purple.

I know that’s not a super popular opinion, especially when I live in the land of Viking football and Purple Rain, but I’m not much of a fan of the color. I never have been, not even in my tween years when all my friends were obsessed with it.

Instead, I’ve always always loved green, the color of life and vitality and fresh growth, the color of new beginnings. Green is a color of hope and revival.

Purple, to me, has always been a color of sadness and endings--it is the color that the sky turns after the sun abandons the landscape. It’s the color of wine and overindulgence, of too much. It’s the color of battle, of ripe bruises and freshly healed scars.

So it’s fitting that this color, which represents such hardness and difficulty for me, is the color of the epilepsy awareness movement, a movement I am part of, whether I want to be or not.

It’s March 26.

It’s Purple Day, and I am one of the Purple People.

I only know a handful of epileptics personally: a student at the school where I used to teach, an old friend, my adopted daughter’s biological mother, and, most recently, one of my drama students.

I’ve had an almost instant connection with each of these people because we share something that others just can’t understand: the humiliation and helplessness that follow a seizure, the hijacking of any best-laid plans you made for your own life, the disappointment with the limitations that epilepsy presses upon you, the medications and side-effects, the ever-present fear of an episode.

Because of my epilepsy, I don’t teach anymore. But I did inherit the local school drama program from my dad, so I still get to work with kids.

One of those kids just happens to have epilepsy.

Last Saturday, her mom came up to me after practice and said, “Thank you. Thank you for showing my daughter that it is possible to live with epilepsy. Thank you for being an example to her, for showing her that she can still do things, that she doesn’t have to be limited by her disability.”

Her words stunned me.

During the last five years, I’ve endured a pretty major crisis of identity that has been a direct result of my epilepsy.

I had not considered myself to be any sort of role model. In fact, I was concerned that I had become the exact opposite, because I wasn’t “succeeding” in the way I thought I needed to be. I always assumed that when people looked at me, they only saw wasted potential. I assumed they would look at me and think, She could be doing so much more with her life. When I look at my own life, I think those things. And I when I do think those things, I get bitter and resentful and embarrassed and angry that my brain just can’t do what it used to do.

Inheriting that drama program was a gift: it was a way for me to work with kids without the full-time commitment of a teaching contract. But I had so often thought of it as my Plan B. I love it, but it isn’t teaching.

It’s Plan B.

But that woman’s daughter is watching me.

Her epileptic daughter is watching an epileptic director create, and there’s hope in that.

There is hope in watching someone navigate a terrifying terrain ahead of you, in watching them survive it.

She was right: I can still do things. Maybe not the same things in the same way I could before my diagnosis, but I can still do things.

I had never considered the possibility that kids who also struggled with epilepsy might be watching me and paying attention to the ways I manage this condition, looking to me for cues about how to live well with this disorder. These kids aren’t judging me. They aren’t looking at me and wondering why I haven’t done more with my life. They look at me and see hope.

“This has been really good for my daughter,” she told me.

And it has been good for me, too.

So today I wear purple for the scars and the bruises, for the overindulgence, for the sadness and the endings. I wear purple to remember and honor the past.

But tomorrow, I will wear green.

​

1 Comment
Lea Lynn Nowak
3/27/2019 05:25:17 pm

Love it. GO GREEN !!!

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