This morning my husband and I woke up early (well, early for a Sunday) and went downtown to the starting point for the inaugural Purple Walk for Epilepsy, which took place in conjunction with BuskerFest in support of Epilepsy Toronto. Before continuing, I’ll say that Tristan Thompson, a famous NBA player, was there, and I was standing less than ten feet away from him for at least five minutes at a certain point. Brush with fame acknowledged, I can move on.
Epilepsy Toronto does amazing things for people in the GTA who live with epilepsy. When I was first diagnosed, I felt incredibly alone, and finding Epilepsy Toronto and the community there was a major relief, both in a practical sense—it provides great resources—and an emotional one. As I quickly discovered, I’m not the only person in the GTA with a seizure disorder.
I participated in the Purple Walk with a team that included three young women who’re also involved in the epilepsy advocacy project that’s evolved from the epilepsy summit that I attended in DC last July. We raised a significant amount of money, but if you want to donate, contact me! I’ll send you a link so you’ll know where to send your dollars, and I just might do something nice for you.
A few minutes after the walk began, something unexpected occurred: I started welling up. I’m a giant suck at the best of times, and this counted as among the best of times, really. Hundreds of people had come together to march down Queen St. East, motorists, streetcar drivers, and police officers were honking and cheering—the positive energy was palpable. As I walked with my husband, friends, and strangers, it struck me that epilepsy, for me, has meant a whole range of experiences. A few days ago, I was in the ER because my husband was scared enough to call 911; the fear—and reality—of seizures majorly disrupts my everyday life; and the side effects of the medications that I take have serious implications for how I function. And yet, as a result of the extremes, epilepsy has brought me closer to myself, to my husband, to important truths—that there are things I care more about than the number of articles I publish or how quickly I finish my dissertation, for example. It’s brought new opportunities (like this blog).
But let’s return to me in the midst of the sea of purple shirts in downtown Toronto five or so hours ago, trying to discretely dab the corner of my eyes while (happily) screaming as loudly as my lungs would allow. Sure, epilepsy has caused plenty of sad/frustrated/angry tears over the years. This morning, however, it was the source of these grateful ones.