I’ve come to see Purple Day as an opportunity to spread epilepsy awareness, partially by reflecting on my personal epilepsy-related triumphs, challenges, etc.
In all three of these senses—triumphs, challenges, and etc.—this year has been, I’d say, my most interesting yet.
Since it’s Purple Day tomorrow (edit: actually the day after tomorrow, from the perspective of when I wrote this post; Purple Day is March 26, not March 25 as I had it in my calendar—I’m unbelievably scattered these days), and since I’m determined to keep this post super positive (while maintaining a good dose of realism, my academic and real-life speciality), I’ll start by acknowledging that whenever I manage to slow my whirling brain down enough to reflect on it, I realize that I’m proud of the fact that I’m afflicted by my greatest nemesis, epilepsy. Of course, I’d much rather not have it, and I’d much rather it didn’t exist, and I’m sorry that my family and friends have had to, and continue to have to, deal with how it affects me, but (cue stereotyped, but true, self-reflective statement) successfully navigating situations that even twenty-five-year-old me couldn’t have imagined herself in has ultimately made me a better, stronger (most of the time) person, albeit a grumpy one who’s waiting for an acquired brain injury program and complains almost every morning and night when she takes her meds.
That was all positive, right?
Really, though, I’ve made tremendous progress in many ways since last Purple Day rolled around. Although the outcome of my investigative surgery wasn’t ideal, if I hadn’t gone ahead with it, I would’ve always wondered if I was a candidate for the corrective procedure or not. My doctors now have much more information about my brain, I know that I’m a candidate for a vagus nerve stimulator, and I might be able to have corrective surgery sometime in the future, depending on how things evolve. I’ve received amazing care and amazing, and ongoing, support from family and friends. I’ve been learning not to focus on what I’m missing out on in life as I recover from my brain injury but to instead concentrate on what I’m gaining each day I manage to take care of myself—like, for example, a better appreciation for the little things, as well as for the big things that I should’ve more actively appreciated previously. In other words, I’m experiencing new levels of gratitude. Today, as I obsessively followed health care reform developments underway in the US, I was particularly thankful for the safety net of a system in which I don’t need to worry about my major medical expenses being covered. Having grown up here in Canada, I sometimes take for granted the fact that I live in a country that recognizes the need for publicly funded health care. My husband and I are, in two words, incredibly lucky.
But wait: the positivity’s only just begun! I’m also fortunate in other ways, epilepsy-wise. A case in point is how my seizure disorder has allowed me to meet many extraordinary people, whether through the epilepsy organization in my city, through the epilepsy group for young adults to which I belong, during hospital stays, or via this blog. Interacting with and observing the lives of others who are affected by seizures is frequently humbling and oftentimes educational, and the relationships that I’ve built with my friends in the epilepsy community are invaluable in ways that I find, in this moment, impossible to communicate.
So, Happy Purple Day. Though I’m not celebrating this year with an over-the-top purple theme party as I have in the past, I’ll mark the occasion, on March 26 (another edit after I realized how scatterbrained I am), in my own way. I hope that you do, too, and that you tell me how you commemorated it.