Hey! I have epilepsy. Sometimes, so do my characters.

One day I was hanging out in the hallway of the middle school with some other moms, waiting for all the sports practices to be over so we could shuttle our kids home.

These two other moms standing next to me were talking about diets and diabetes. They were both on Weight Watchers. One mom has lost tons of weight. The moms talked about the effect of weight on piercing private places and all this incredibly personal stuff.

Then they started talking about sugar and sugar substitutes (Splenda and aspartame).

One mom goes, “That aspartame. I stay away from that stuff. It makes the back of my throat feel funny. I think it does something to rats.”

So I say, “Aspartame gives me seizures.”

And I add, “So does coffee.”

I swear both their mouths dropped open and they both actually stopped talking, which was a big deal, because they NEVER stop talking. I love them. I love their talking, but yeah . . . they are super good at it.

And when their mouths dropped open, I realized: You can talk about your diabetes, your husband’s joy stick, your own special piercings, your kids’ bed wetting, but you can’t talk about epilepsy.

And, this just totally sucks.

Because, I’m someone who is really, really lucky. I know what makes me have seizures so I avoid those things (Truth Alert: It does suck to give up beautiful caffinated coffee and gum), but other people aren’t lucky at all.
About one person in every 26 will have epilepsy at some point in his/her life. And they don’t always have the choice of disclosure, and they just have the stigma.

So? What does this have to do with writing?

Lately, I’ve been thinking about the choices I made with Belle, the protagonist of Tips on Having a Gay (ex) Boyfriend. I made her a folk singer for important reasons. I also gave her seizures, the same kind of seizures I have, caused by the same thing.


Her epilepsy is not a part of the plot. It’s not a part of the character development. But it’s there.

And, no matter how bad my book is, or how good, or if anyone buys it, or doesn’t, or awards it won, I am really, really glad I made that choice for Belle.

Choices are important in our lives and in our books. It’s the choices we make that inform the people we are, and also inform the characters we right. That’s pretty cool.

Like Sparty says, choose to grow, be broad, celebrate your next choices, listen to some awesome tunes. Be the person, the writer, the character you want to be. No matter what stigmas hold you back. You’ve got this.



Author: carriejonesbooks

I am the NYT and internationally-bestselling author of children's books, which include the NEED series, FLYING series, TIME STOPPERS series, DEAR BULLY and other books. I like hedgehogs and puppies and warm places. I have none of these things in my life.

2 thoughts on “Hey! I have epilepsy. Sometimes, so do my characters.”

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