“That’s What I Have!”

IMG_0911This afternoon my son’s first-grade teacher pulled me aside.  It was obvious there was something important she wanted to share with me.  I joined her in very close proximity and listened carefully to what she said.

In social studies today it came up that someone they were studying had epilepsy.  And without prompting, without a cue, and without missing a beat, Edgar announced–without shame and without fear–“Hey, that’s what I have!”

A simple declaration that for someone with epilepsy is anything but simple.

Edgar is young and may not be completely cognizant of the depth and reach of the stigma that still surrounds epilepsy and the people who live with this condition.  And ten years from now in a similar situation he may not make a similar statement with equal gusto.

But he might . . . because he did today and he was praised for it.

From the moment he was diagnosed, when we have encountered stigma, we have stood up to it, fought against it–vociferously, sometimes in his presence and other times in less overt ways.  I have always known we had to but now I see why.  It is the only hope of bringing out and subsequently banishing judgment and the resulting shame.

Edgar showed his world today there is no shame in having epilepsy.  And maybe his world learned from him.  Tomorrow, though, I suspect he will show the entire world; and something tells me he’s going to be hard to ignore.


3 thoughts on ““That’s What I Have!”

  1. As epilepsy has singled him out, he has singled out–singled out its positive aspects that make him a celebrity. Only he, and those with epilepsy can do that with full credibility. Yeah Edgar!!!

  2. Epilepsy is something he has, but not who he is. He is a brave soldier in the fight and advocacy for epilepsy. We need more advocates dispelling the myths and leading the charge. We are so happy you guys are fighters for the Matty Fund. Hooray, Edgar!

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