Ready for some epilepsy real talk?
Doesn’t matter: the beauty of maintaining my own little corner of the internet is that I can write about (almost?) whatever I want, I’m in an honest mood, and you can stop reading and go listen to This American Life whenever you decide that visualizing me having a seizure on the floor of a bathroom—yes, maybe even yours!—is too much. I won’t judge you, primarily because I have no idea that you clicked your way to this nugget of probably-TMI, which I present to you mostly in the interest of epilepsy awareness, I swear, in the first place. (Really, I won’t judge. Go listen to TAL. This week’s episode is super good/fascinating/depressing.) I would, however, suggest that when it comes to discussing chronic illness, pushing past discomfort can be incredibly productive—although I’m usually less likely to make this argument when the person uncomfortable is me, so take that as you will.
Bathroom seizures. They’re a thing. At least, they’re a “thing” in the sense that I coined an admirably blunt term for something that I started experiencing because of a self-preservation-y habit that I somehow developed.
When I enter a space in which I’ll spend more than an hour or so, I almost immediately scan the premises and plan a seizure escape route. Not a route for fleeing the seizure itself—those misfiring neurons are crafty little buggers, and I’ve learned that once an aura strikes, resistance is futile—but a strategy for avoiding the public gaze so that I can have my seizure in privacy (or in the presence of a loved one “in the know,” if such a person happens to be available and willing/not weirded out by the prospect).
Nine times out of ten, it involves a bathroom. What can you do.
Bathroom seizures aren’t so bad when they’re in non–public facilities. Off the top of my head, I can think of four occasions on which I excused myself during a social gathering at a friend’s place, went as quickly as I could to the washroom, found a towel to lie down on, waited for the inevitable, whether a partial or a generalized seizure, then rested until I was in a reasonable enough state to, depending on what’d transpired, rejoin the festivities or get home.
Yeah, I’m aware that curling up on a bathroom floor is suboptimal, but so is epilepsy, and I’m willing to trust that my friends are comparatively clean people. Not that I have any choice but to trust that. Friends, use this as extra incentive to keep your bathroom clean! Or don’t, but you never know when a person with epilepsy’s going to require the use of your bathroom floor for seizure purposes, and providing an appropriately hygienic surface is only polite. I’m 99% positive that that was in a “Miss Manners” column that I missed.
As you might imagine, bathroom seizures become more difficult/traumatizing when they take place in public restrooms. One word: stalls. I mean, I could add so many more words—so, so many more words—but that would involve reviving memories that are, frankly, a little painful. At the risk of sounding dramatic, having a convulsive seizure in a not-so-spotless stall in the restroom of a grungy bar doesn’t rank high up there on the list of life events that I’m eager to re-experience. Boiled cauliflower with Parmesan cheese on our back deck, last year’s pop hits to set the mood? Yep. Several chapters of The Oxford Handbook of Fascism followed by a run in the sweltering Toronto summer heat? That sounds pretty appealing, actually. (Truly.) This, not so much, and so I’ll let you use your imagination and relive the ordeal yourself. Go ahead and relive the cauliflower too, while you’re at it.
One day, I’ll look back at “that time I had uncontrolled epilepsy” and be like, “whoa, I can’t believe that I had convulsive seizures on the floor of bathrooms and thought that it was kind of normal.” For now, I’ll probably keep seeking out bathrooms when I detect an aura while out and about and get a little panicky because I realize that there’s a chance that a roomful of people might see me in full-on seizure mode. Sometimes it’s a matter of weighing the pros and the cons and making split-minute decisions, whether or not they make real sense or not.
And sometimes it’s a matter of hoping that at some point, you won’t have to make such decisions anymore.
De Morbo Sacro: Life and/with Epilepsy 
“And sometimes it’s a matter of hoping that at some point, you won’t have to make such decisions anymore.” That day will come. 🙂
In the meantime, though, while reading this post, I did a mental checklist of our bathroom accessories, and towels are there, in addition to a floor that was just mopped (but it might smell like dog now). We’re ready for every aspect of the Kathleen we love!
Thanks for your frankness, always.
You’re the best.