“I had my first seizure on my 23rd birthday. I’d graduated university and was looking to the future with the kind of optimism only someone in their twenties can summon. We had a party at my parents’ house. A magical evening of cake and celebration, conversation and song. Finally, I retreated to the purple paint and glitter of my childhood bedroom, happy and exhausted. The next thing I knew, I was on the floor with paramedics surrounding me.
The first neurologist I saw made me cry. He made no attempt to reassure me, just tried to scare me into taking it seriously. If it was epilepsy, he said, it could kill me. And so, when an MRI confirmed the diagnosis, I found myself confronting my mortality for the first time.
I had just started casually dating this guy from work, Matt, and I texted him when I got the news. He dropped what he was doing and came to me. We walked and talked for hours and he just listened to me vent and catastrophize and cry. He was such a calming presence when I needed it most. It made me want to imagine a future together. But now that future terrified me.
I was starting my career, dating this incredible guy, living in an apartment with friends. But then at night, I would sneak back to my parents’ house and crawl into my mom’s bed. My seizures always come at night and I was so fearful of sleeping alone. I was reaching for all of these adult things, but then literally sleeping scared in my mom’s bed like a child.
I wish I could say the fear was unfounded. There have been periods where my medication and lifestyle are just right and I’ll go years without a seizure. But when the seizures return, and they always do, all the old fear comes back too.
I’m happy to report, though, that life does go on. I live with epilepsy, but I live a life beyond what I’d allowed myself to imagine all those years ago. I think about the future a lot these days. It’s not with the blind optimism of a 23-year-old, but it’s not with dread, either. And when I crawl into bed, always half-wondering if tonight is the night the seizures return, it’s not my mom who’s waiting under the covers. It’s my husband, Matt. In sickness and in health.”
