I Almost Forgot It’s Purple Day, and I’m Totally Fine with That

Once again, Purple Day almost slipped by without my noticing it. I caught it in the nick of the time, though, and here’s the blog post to prove it.

This has become a pattern: every year for several in a row, I’ve only remembered just before or a little after the fact that I’ve failed to mark the global day meant to bring awareness to the neurological disorder that’s shaped my life in unalterable, profound ways. The disorder I started this blog to write about, even if my focus has shifted to other things. Every year, I’ve cranked out a last-minute Purple Day–related entry justifying not throwing a purple theme party as I did when I was in the earlier stages of my epilepsy journey (man, do I hate that word, but I can’t think of a better one so will swallow the mouth vomit and leave it). This year, I’m doing the same.

When I reminded my husband this morning that it’s Purple Day, he asked what I wanted to do for it. “Probably nothing,” I replied. And that was the truth, but only part of it. I do want to do something, but that “something” is live my life and cross my fingers that I don’t have a seizure. Which is fair, I guess, but nonetheless elicits guilt since the whole point of an awareness day such as this is to increase awareness about the issue in question, not to pretend that it doesn’t exist. So let me be clear here: epilepsy very much exists. It’s very much a problem. It affects tens of millions of people and is misunderstood and stigmatized, and not enough research money is put into trying to find a cure for it. It can be tamed with medication and/or with surgery, but full freedom from seizures isn’t always possible. It isn’t for me.

I sometimes wonder if I’d be as grateful as I am for the better seizure control I’ve accomplished if it weren’t for the fact that epilepsy has almost killed me more times than I can count. It’s all relative, after all. Indeed, I don’t care much about the limitations it continues to impose since at least I’m no longer in and out of the hospital. Who am I, then, to complain that I can’t work or walk? Who am I to complain about the six anticonvulsants I take or the device implanted in my chest? Who am I to be a little resentful every time I run my fingers through my hair and hear the weird sound produced by my scratching the ridge of misshapen bone left from multiple craniotomies, an osseous madeleine transporting me back to months I wish I could delete from my memory?

I’ve been trying to strike a balance between being an advocate—for myself and for others with epilepsy—and having an identity separate from the one forced on me by dint of my seizures, and I’m slowing figuring that out. For a while, I was unconsciously distancing my neurologically healthier self from my epilepsy self, almost as a form of rebellion. Now, I’m inching my way to centre ground with the realization that I can be a person first while still being a person with epilepsy, if that makes sense. Today, on Purple Day, I can drink some chemical-purple grape Kool-Aid, which I genuinely love, make a donation to Epilepsy Toronto (hint, hint), and sew something purple without exhausting myself to the point of a seizure by planning an elaborate party. I’ve already celebrated by having a visit with a dear friend who by pure coincidence was decked out in purple, socks and all. (I’m wearing a sweater with a single stripe of purple, also by pure coincidence.)

And with that, I’ll hop on my (purple) wheelchair and head to the library, where I’ll spend the rest of the afternoon appreciating this fine Purple Day for what it is, but mostly for what it isn’t.