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.
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.
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| Calvin during a tonic-clonic seizure |
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.
ReplyDeleteChristy-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.
ReplyDeletethanks to both of you for your loving words. proof that compassion does exist in the world. xo
ReplyDeleteHi, 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!
ReplyDelete