I don’t have the time or energy to write a long post, but it’s Purple Day, twenty-four hours dedicated to epilepsy awareness, so I owe it to myself and to this blog to remind you that epilepsy exists, it sucks, and lots of people live with it—including me (surprise).
In other words, let’s all wear purple and educate ourselves and others about what is, as the World Health Organization confirms, “the most common serious brain disorder worldwide”!
In past years, I’ve thrown some pretty over-the-top Purple Day parties. Last year, I spent Purple Day in the hospital. This year, I’m celebrating at home by purchasing expensive purple sweatpants online and instructing my husband to buy me purple tulips (we’re trying to limit my exposure, otherwise I’d do it myself #pandemic). My seizures are more controlled than they were twelve months ago, but I’m recovering from some recent scares, the first of which landed me in the ER overnight and the second of which caused me to be admitted for two days with phenytoin toxicity. A low-key Purple Day it is.
Living with seizures can be unpredictable, terrifying, and frustrating. It’s forced me to reprioritize, refocus, and change. I’m not proud to admit it, but I’m frequently angry that I have them.
Still, though, I’m grateful—for the resources that are available to me, for my willingness and increasing ability to adapt and accept what my reality is, for what I can do and how I can contribute, and, most of all, for the people who support me. Purple Day should also be about thanking the caregivers, the ambulance-callers, the cheerleaders, and, of course, the friends who listen, who laugh off nonsensical postictal text messages littered with weird emoji 🤦🏻♀️, and who’re going to wear something purple today because it’s Purple Day and I want them to.