Oh, words. I love you; I use you; I constantly underestimate your power.
This morning I met with my new neurologist. I joked with the receptionist about how I’d graduated to the “adult” neurologist, because the last time I saw one, I was at Primary Children’s. It was long enough ago that I can’t remember my pediatric neurologist’s name, but I remember liking her. I’m a fan of my new neurologist, too, but I’m not a fan of the news she gave me. She corrected the words in the phrase I used to describe my medical history, and… to be honest, I’m still struggling to process it.
My parents and I thought I had epilepsy. But it turns out that was never true. I have epilepsy.
We thought I had epilepsy, but I had seizures. I’ve always had epilepsy.
Like cancer, they refer to epilepsy patients being “in remission” if they’re symptom-free for long enough. (If you’re curious, the criteria is 10 years with no seizures and no medication.) I learned another phrase today, too: “breakout seizure.” I can’t help but picture that being the seizure that blasts a hole through the prison wall so everyone else can escape and run amok all over Gotham City…. er, my brain.
Call me stupid, but I’d honestly been hoping to hear that the seizure on my flight was some fluke thing and wouldn’t happen again. I’d been crossing my fingers that I’d somehow be okay to drive. I imagined this episode would be a blip, something that forced me to take a month off to focus 100% on finishing the sequel to Donn’s Hill and that I’d look back on as a blessing in disguise.
Instead, now there’s a whole new reality. I have epilepsy. Whether it’s the same kind as during my childhood, whether it’s the same severity, whether I’ll need medication to control it… I don’t know. I’ll be having an EEG and an MRI so my doctor can answer those questions at my next appointment. It’s a process that’ll take a few months. Good thing I’m not constantly a tiny knot of anxiety and prone to worrying things to death, right?
In this new reality, I can’t drive Lyft. That makes things kind of tricky, so if you’re reading this and you happen to know anyone who needs part-time, remote assistance configuring software (especially CRM, EMR, or LMS applications), let me know! I also do interior formatting and cover layouts for books, data entry, and all sort of other computer-based magic.
But the good thing—the thing I’m trying to remind myself of every time I start crying (which means every 10 seconds or so)—is that I didn’t journey into this new reality alone. Almost every single great part of my life got to come with me. The couple of words that changed my perception of my epilepsy can’t take away the fun things I get to create and the awesome people I get to be around. They’re just part of the Road of Trials on my quest. Sure, if I’d written this story I would’ve gotten a sweet superpower by now, but one can always hope.
