10.24.2011

video clip

The video at the top right of this blog is of Calvin having a tonic-clonic (grand mal) seizure. The clip is three minutes long, but is missing the first 30 to 60 seconds of his seizure. I was trying to pry him out of his johnny-jump-up after I saw that he was having what’s called a partial seizure. I knew, by the color of his face and his odd, twitching grimace, that he was going to roll right into a big, bad convulsive one, which I was able to film.

Several months ago I decided to make the video public on You Tube, aiming to show the world the horrors of epilepsy, which few seem to know or understand. The first comment I received was from someone called Diddyalice:

why record thats just nasty

Followed by another comment by MegaShaff who added:

This is horrible. How can you record your kids doing this man?

I winced at such unkind, ignorant comments, bristled at the blatant examples of what I’d come to know as the stigma, misunderstanding and fear of epilepsy but that I hadn’t yet experienced in such a way. Michael suggested I pull the video from public view so as to spare my hurt feelings. “No,” I spouted, “this is an opportunity to educate,” and so I sat down to compose a reply to each. I wrote:

open your mind. don't pass judgment. the seizures are nasty, not the recording. i want to show the world how bad epilepsy is so that people DO SOMETHING ABOUT IT AND FIND A CURE.

And then:

if you don't have a kid with epilepsy i imagine you can't begin to understand a lot of things.


Since writing that I’ve received only kind, compassionate messages from unknown viewers. Perhaps sharing the video and my thoughts on epilepsy—as I'd like to believe—is making a difference. You can too.

Calvin during a tonic-clonic seizure

4 comments:

  1. Even after watching my own son suffer 100's and 1,000's of seizures of all different varieties, I still can't watch a child seize without it bringing tears to my eyes. I used to talk Sterling through every seizure too. I hope one day your little guy finds freedom from this awful beast.

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  2. Christy-I can completely see why you posted this, and why the cruel comments could injure so. I watch it and my heart breaks for you and for Calvin. It's hard to believe that such a devastating illness receives so little attention, yet harms to very many people.

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  3. thanks to both of you for your loving words. proof that compassion does exist in the world. xo

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  4. Hi, my name is Heather Jackson and I faciliate the Turn the White House Purple for Epilepsy page on facebook. www.facebook.com/turnthewhitehousepurple I AM WITH YOU IN THE FIGHT!

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