What It's Like to Have a Seizure

What’s it like to have a seizure? It’s often the first question people ask when they find out I have epilepsy and I always feel like I’m the least aware of what happens before, during and after my seizures.

Epilepsy and seizures affect people very differently, so I won’t assume I know what it’s like for everyone, but this the best way I can describe my experience.

It feels like paranoia. Like everyone in the room knows something that you don’t. Something about you that you can’t hide - but you also can’t understand.

It feels like stress. Suddenly all the things you were worried about a minute ago vanishes from your mind and everything is consumed by this….feeling. No. Sensation.

It feels like helplessness. You can’t stop it from coming. Even when you really really want to. It’s never a convenient time to have a seizure. In an elevator full of strangers? No thank you. When you’re about to go to work at an airport when you’re in your flight attendant uniform? Not the best. While swimming across a lake? Ok, this is bad…

It’s darkness. And a complete loss of control.

It’s confusion.

It’s chaos.

It feels like betrayal. Your body betraying your mind. Your body betraying you.

Then it’s pain. A mix between your worst flu’s body-aches, the day after a killer work-out’s muscle-aches, falling down a flight of stairs, and a full bottle of wine’s worth of hangover-headache.

It feels like embarrassment. You know you shouldn’t be embarrassed, but you are. It’s normal.

And sometimes it feels like guilt. Guilt of the stress, anxiety and sadness you put on your family and friends. You know it scares them. But it scares you too and they wouldn’t want you to feel guilty about it.

Oh yeah, it’s frustration. Frustration that you’re different. And that some people don’t understand. Frustration over the reaction that people can have. Frustration at a loss of independence because I value my driver’s license like Canada values the Stanley Cup or whatever that hockey trophy thing is. I want it. It’s mine, and I want it.

But then, it feels like relief. Relief that you’re ok. You’re ok.

You’re still alive and that’s awesome. And when it happens again, you might not be ready for it, but if you make it out alive again, it will make for a great story at parties.

-Carole