I meant to write about Purple Day on, you know, Purple Day. But since it’s still Epilepsy Awareness Month, at least for a few more hours, it’s not too late to reflect on how starkly my attitude this year diverged from how I thought about/didn’t think about Purple Day in 2012, shortly after my official diagnosis.
I spent last March 26 in the Epilepsy Monitoring Unit at Toronto Western Hospital, where there was a conspicuous absence of Purple Day celebration or, for that matter, acknowledgement of its existence. No one from Epilepsy Toronto visited the unit, the nurses on duty didn’t break out their purple scrubs, none of the other patients seemed to know or care that events meant to raise awareness about epilepsy were taking place throughout the city. My own awareness of the particularities of the condition for which I was being hospitalized remained, in fact, pitifully low. If I had been allowed to leave bed, I might have benefited from the Purple Day information booth set up in the TWH lobby. Instead, it was a hospital day like all others, the monotony broken only by a block of rubbery oatmeal and a gelatinous blob of sweet and sour chicken.
Things have shifted significantly in the space of a year. We started to discuss the possibility of having a Purple Day party a month or so ago and, after a little hesitation on my part, went ahead with it. Between the intense purpleness, friends’ enthusiasm, and alcohol-fuelled body-painting, it ended up being, for lack of better words, pretty great. So great that the vast majority of the pictures aren’t blog-appropriate; understandably, my husband isn’t thrilled about the idea of pictures of his purple chest floating around the internet.
On Purple Day itself, I went to an Epilepsy Toronto event at the Elgin and Winter Garden Theatre Centre with an amazing friend. While chatting with her and other people I have met through epilepsy-related activities, it suddenly struck me—I am starting to become part of a community that really gets me, in which I can express my anxieties in a way that I normally can’t. The warmth with which this group has welcomed me is something to be grateful for, as is my non-epileptic friends’ acceptance of my alterity. And that, I guess, is what I realized this Purple Day: that epilepsy sucks, but that my life and relationships don’t have to.