11.18.2013

some of the best people i know

What are seizures like?
Will Calvin’s epilepsy ever be over?
What do you do when a newborn baby is having a seizure?
Are seizures like falling asleep?
How do you get epilepsy?


These were some of the questions that Mr. Shea’s fifth grade students asked me last Friday. I’d gone to visit the class, the one that Calvin does art with, to tell them a little bit about my boy and about epilepsy. As they sat around desks and on the floor at my feet, I told them how Calvin was born prematurely and missing part of his brain, which made things difficult for him to learn and which was likely the cause of his epilepsy. One student told me that her brother had seizures as a child. Another student said that his uncle has epilepsy and that despite taking medications he still suffers seizures.

As I sat in front of them, regarding their solemn faces, listening to their thoughtful questions, I realized something that I often forget: kids are some of the best people I know.

Through the wall we could hear Calvin’s muffled shrieking in the room next door, in his Life Skills class, but the kids didn’t seem to be fazed in the least. I told them about the antiepileptic drugs and their side effects and how they cause Calvin to be hyper. I told them that for 70% of epilepsy cases the cause is unknown and that more than a third of people with epilepsy don’t have their seizures controlled by medication. When they asked what a seizure was like, I explained that there are more than thirty kinds and I tried to describe some of the common ones, adding that during some seizures people can injure themselves when they fall and hit their heads and faces. “Seizures can be scary, but they’re not weird and they’re nothing to make fun of,” I stressed. “You wouldn’t make fun of someone who had cancer,” I said, “and it’s the same with epilepsy, it isn’t their fault.”

When I told the kids how many people have epilepsy—one in one-hundred—I pointed out how often times people hide it because they are afraid of how others will react, but that it is important to talk about it so that everyone learns that it is not rare, that it is serious and that there isn’t a cure.

After about thirty minutes the questions dwindled so Mr. Shea wrapped things up. His students applauded. “I should be clapping for you!” I said with a smile on my face as I joined their applause, adding how thankful I was for their kindness and acceptance of my boy, who really is the best person that I know.

photo by Michael Kolster

4 comments:

  1. Thank you, Christy. Leo came home from your meeting with that class so moved -- he choked up when he told us about Calvin's epilepsy and how everyone deserves kindness. You are a wonderful ambassador for Calvin and you are really making a difference.

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    1. thank you so much for sharing, LH. the kids were amazing. if you'd like to be added to my blog email (if you are not already) just let me know your email address. i think leo is making a difference, too.

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  2. Christy, these are the things that we remember long after elementary school. I always tell my sixth grade teacher that it was his interpretation of "To Kill A Mockingbird" that made me a sociology major, not anything more recent. Thanks for all your service to the epilepsy community.

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  3. You're the best -- over and over again.

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