Epilepsy and the Importance of Community

Some of the young adults that I’ve been collaborating with since the epilepsy summit that I attended in DC in July 2014 met in Toronto this past weekend to discuss our progress, plan upcoming projects, and work on our current one. It was an engaging, intense, fulfilling few days, and for the first time in forever—well, probably since we were last together—I felt truly privileged to belong to the “seizure club.”

Thanks for having me as a member, guys. (But just a FYI: if I ever, by some miracle, figure out how to tame my rebellious neurons, I’m going for it. I assume I can still be involved/we can still be friends.)

I realized during one of the group discussions that I’m not used to spending much time with people who also live with epilepsy. Although I have super-supportive and empathetic family and friends, none of them have a seizure disorder, and if you don’t, I’m not sure it’s possible to understand in more than a superficial way what it’s like. It’s just one of those things. A good one, actually, if you reflect on it. But I still occasionally feel a sense of entirely self-imposed stigma within my own social network: the uncomfortable knowledge that I’m “different” (beyond my other weirdnesses). It was thus so, so nice to be surrounded by individuals who get it on a fundamental level.

I’m tearing up just thinking about it, and I’m in a public place and have mascara on, so I’ll cut this short. Bad planning, me. This is why I usually avoid feeling my feelings and don’t wear eye makeup.

What it comes down to is this: everyone needs a community—or communities, really. So far as epilepsy is concerned, I’ve found mine, and I couldn’t be more grateful.

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