Role Models One at a Time

My aunt sent me a link to this riveting, important confessional essay this morning.  I opened it and read every word–three times–while my son slept upstairs.

In the last year since Edgar’s diagnosis I have been on a quest to find not only descriptions of what it feels like to experience a seizure but also what life for people who have epilepsy looks like–how they cope with the still-rampant stigma, the stigma that lingers despite all the education, despite all the advocacy.

And here was the executive director of a major news organization putting it all out there, including a photograph of her beautiful face in the throes of an EEG.

IMG_3533Edgar has been seizure-free for a little over a year; but as anyone who has epilepsy or is a caregiver to someone with epilepsy knows, seizure-free in this moment does not mean seizure-free in the next.  We live in and appreciate the present but always expect–and not always in the backs of our minds–that another seizure is on the horizon.  It’s just a matter of when.  And for Edgar, mornings have always been a challenge: The transition from sleeping to waking triggered many seizures in his tiny 40-pound body.

And here I was, in those frightening moments I experience every Monday through Friday morning right before I have to wake my son reading an essay that I believe has the power to change the world.

I write about my son’s epilepsy for the same reason Maya Schenwar wrote her piece–to destigmatize this condition, to show what it looks like, in our case, in a little boy, in a family you know or who reminds you of someone you know.  I do this for him because I cannot sit back and simply assume, because he is young, that life will better for him in another decade or two, that people’s thinking will evolve on its own.  Because it won’t.  Not without serious effort.

Yet I do not have epilepsy.  My child does.  So, I can only write what I observe, what I feel, what he communicates, what he chooses to reveal.  I would like to believe that if I had epilepsy I would write about it with equal fervor.  I would like to believe it, but I can’t say for certain.  The same thoughts that float through the minds of others who have epilepsy would probably float through mine:  Will this scare people away?  Will a potential employer not want to hire me?  Will someone equate this with another condition that has nothing to do with epilepsy?  Are people going to look differently at me?  Feel sorry for me?  Not going to want to get in a car with me?

When I woke my son this morning, I carried him downstairs as I still often do as he emerges from his slumber.  When I knew he was cognizant of my words, I lifted his still-drowsy face to mine and said: “Edgar, I just read an article written by a woman who is the director of a big, important publication, and she has epilepsy.  She wrote all about it so people could learn about it.  What do you think about that?”  And he said, “That’s awesome.  I want to do that, too.”

And because Maya Schenwar did so, I now know that my son can and will “do that too.”  He has a role model in Maya Shenwar, and I couldn’t be more grateful.


2 thoughts on “Role Models One at a Time

  1. Having a role model is as significant as being one.
    Edgar already is a model; yet, his potential in his “helpful” DNA gene is inestimable.

  2. Thankyou for this link to a great article. its great that your little boy has someone to support him to find his way and help learn to understand his health. Stigma is a big problem with epilepsy but i am a strong beliver that the more people who talk about it the more understanding and acceptance will come. keep up the good work!

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