Given that today is Purple Day, I thought this was an apropos time to discuss the beast that put me in this situation. The cause of this blog. The reason my husband is no more. What killed Bryan. Should I continue, or are we good? Good. The answer is Sudden Unexpected Death in Epilepsy (SUDEP). Never heard of it? Neither had I, or any other member of his family, friends, acquaintances, coworkers, the lady at the deli counter, the guy who always grunts at the gym, or your Starbucks barista for that matter. And that’s messed up. I’m sure you’re familiar with the concept of “raising awareness” for worthy causes, but the fact that something that kills 1 in 1,000 people with epilepsy, and that 50 million people worldwide suffer from epilepsy, needs awareness raising, really chaps my ass.
So what is Purple Day, you ask? WELL, glad you asked! It’s “an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness.” Their ultimate goal, and now mine, is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone.
The fact that I had absolutely no idea why Bryan’s heart would just stop and he’d keel over never to be conscious again just proves there’s chaos in the universe. In the days and weeks after he passed, I’d think back to his last appointments with his neurologist as they talked about adjusting his medication, and the litany of possible side effects she* rattled off like we were at a basic brunch and she was listing all the regretful bangs of her life. One thing she never said was SUDEP. Perhaps SUDEP was her “Chad”…the bang so shameful and embarrassing that she can’t utter it ever…or at least until the HPV he gave her clears up. “Fuck you Chad [SUDEP]!” That’s how I had to rationalize it anyway. Because my only other thoughts were of sending her a letter expounding upon all the ways she is either at best totally inept at her job, or at worst criminally negligent. And then maybe sending said letter in an envelope filled with a suspicious white powder (Hint: GLUTEN!). But, I’ve come to learn that this code of silence is widespread among doctors, and especially egregious in the United States. All the best and most proactive research is coming out of the United Kingdom, so check them out, especially the SUDEP Action network.
It only makes sense that the land that gave us Harry Potter, spots(?) of tea, Posh Spice, The Office**, and has universal health care would be ahead of us on this. So, I’m turning my rage into action and doing my part to tell Bryan’s story, raise awareness and funds so that perhaps one of the 50 million people on this old earth of ours with epilepsy might be empowered to make the most informed health care decisions for his or her self. So in summation, check yo’self before yo wreck yo’self [translation: check out these informative links, let friends and family with epilepsy know about SUDEP, and perhaps consider making a donation!].
*Her name is Dr. Brenda George in Fort Collins, CO. I wouldn’t fight you if you gave her a shitty Yelp Review. J/K! (not really)
**I know, I know, that was the original, but the American Office WAS way better. U-S-A! U-S-A!
the wittiest widow 