For the fourth year in a row, I forgot that it was Purple Day until I checked my messages around noon and found multiple texts from supportive folks in my life who were more on top of it than I was.
If I didn’t know any better, I might worry that some emotional block were preventing me from acknowledging that epilepsy exists (despite my having an intractable form of it) or that I’d had a string of seizures that took me out of my head and into postictal land. Nope! I’m not in denial, and my seizures haven’t strayed from their predictable pattern. My failure to plan a purple party, attend a Purple Day event, wear purple, or write this post until the evening is attributable only to a busy week and my own obliviousness. And maybe to the paradigm-shifting revelation that I recently had and am somewhat embarrassed to admit but will for transparency’s sake: that I’m not sure purple is my favourite colour after all. I came to this realization when a new pal who doesn’t know my longstanding history with the hue told me that she was surprised I didn’t prefer blue and my reaction was relief. I have evolved. I felt so seen. Perhaps I’ll explore this in therapy.
In all honesty, though, there are likely some psychological processes at play here. I’m not ashamed to live with epilepsy—far from it. I am, however, very, very resistant to making it my identity. That might sound rich coming from someone who’s maintained a blog originally about epilepsy for the better part of a decade, but it’s true. There’s a reason I made a conscious decision to diversify the content I generate, and it isn’t because my seizures are fully under control; they’ve stuck around like that annoying acquaintance who hasn’t picked up on your not-so-subtle hints that you don’t want to be friends. At the end of the day, epilepsy is a real drag, to put it lightly, and I’d rather not give it a starring role in my life. I can opt to make my closet a sea of blue, but I can’t opt out of my seizures. Accelerated and innovative medical research is one of the very few generative-AI trains I might cautiously board if it led to a universal cure for this massively misunderstood and undertreated pain in my neck.
Given the number of epilepsy-related accounts that I follow on social media, it’s impressive that I managed to totally miss what’re jumping off the screen now that I’m looking for them: many, many awareness-spreading posts. Dozens of them. A field of lilac, of lavender, of all shades of the colour of the day. I’m happy to add my abbreviated contribution to the mix, but I’m also happy that I didn’t spend hours agonizing over it and that I won’t spend tonight tinting my mouth the unmistakable purple of grape Kool-Aid. Nonetheless, I encourage you to do your bit. Educate yourself; make a donation, preferably to Epilepsy Toronto; be angry that more dollars aren’t funnelled into improved outcomes for people living with epilepsy. I’ll do the same while celebrating my first cavity-free dental appointment since time immemorial and the fact that I instinctively grabbed a blue sweater from my closet this morning.
De Morbo Sacro: Life and/with Epilepsy 