On Saturday, we went to Toronto Island with friends for a fun summer afternoon break from the city because even when times are tough, we’re the kind of people who’re able to leave our troubles behind and enjoy the respite of beach life for a few hours *foreshadowing*.
I should begin by stating that I’m glad that we went and that I genuinely had a good time, mostly. It’s not the island’s fault that my brain is functioning at less-than-optimal levels these days, and I have no one to blame for how I navigated the neurological situation in which I found myself but, you know, myself.
By the time we disembarked the ferry, got to the beach, and lay down our towels, my brain was sending me some pretty clear signals that all was not fine in seizure land. But it was all good because if I’ve learned anything from life, it’s that if I ignore problems, they’ll eventually go away. (I kid, I kid.)
When everyone else got in the water to cool off, I stayed on shore to read and eat those Babybel rounds that I only purchase on special occasions, such as when I feel sorry for myself and know that peeling wax from an unsatisfying quantity of cheese will make everything marginally better. (I had decided in advance that I wouldn’t swim since it makes my husband really nervous, even if he pretends that he’s totally cool with it, bless his heart. Plus I do recognize that there are drowning-related safety concerns when my seizures are particularly out of control, and I don’t always behave like a total idiot.) It was while working on my second—or maybe third—Babybel and watching my life partner and friends splash in the waters of Lake Ontario that I had a partial seizure.
When I’m a certain level of postictal and trying to hide it, I feel like I assume a teenager who snuck a drink from his/her parents’ liquor cabinet and, now a little intoxicated, is unexpectedly forced to attend a family function must. Desperate and sure that everyone knows my secret, I slur my words a bit, try extra hard to make sure that my sentences are coherent, and pray that I’m not exposed as the impostor I am.
I made it through the rest of the afternoon without anyone figuring out what had happened. I chalked this up as a victory, though maybe I shouldn’t have. I don’t know why my instinct is to hide public seizures from friends, even friends who know that I have epilepsy and have shown no (outwards) signs of being embarrassed by it, but it’s happened more than once, and it’s arguably not in my best interests so far as my health is concerned, especially since my seizures often cluster. My suspicion is that I’m afraid of spoiling other people’s fun and being seen as a party pooper and then gradually being invited out less and less, thereby becoming a social pariah, but that’s just a hunch.
At the TTC station, we hugged our friends goodbye before getting on different trains. At that moment, I realized that I didn’t know who they were. I mean, I knew, in a vague sense, that I knew them, but if you’d asked me in that moment for their names, I couldn’t have told you. Yet there I was, smiling and embracing them, performing my role in this social interaction even though I was profoundly uncomfortable. For whatever reason, I found the idea weirdly upsetting. I still do, actually.
Maybe I’ll eat some more Babybel and reflect on how I can better approach future postictal adventures. Or maybe I’ll just eat the Babybel.
De Morbo Sacro: Life and/with Epilepsy 