Lately, it’s felt like epilepsy has been knocking at my door again. And I’m terrified.
Over the past eight months, I’ve felt good. Really good. And I’ve lived my life accordingly. I’m probably the most fit I’ve ever been. I’ve traveled all over the world, I’ve gotten scuba certified, I’ve taken on new responsibilities in my professional career, I’m averaging 2 books read a month. Appreciating my health is an understatement.
But in the past week, on schedule with when I’d typically get the seizures (they stick to a schedule and I’ve tracked them since I first started having them even though I don’t anymore), I’ve had some moments that make me feel like it’s all coming back. There was that one conversation with a friend that, the next day when he brought it up, I had absolutely no idea what he was talking about. And that other moment when I hung up with my parents and then lost a couple minutes of awareness. They weren’t full auras but they were a reminder to stay on top of everything and make sure I’m prepared if they do happen again.
- Talk to my family: my actual family and my “family” of friends. My sister has been my savior in all of this. I’m out here in California and the rest of my family is back east. Her being with me through all of this made me feel less alone and less terrified. The people I spend the most time around, my climbing team, they weren’t around when I first had the seizures. They’re the people I’m going to need the support of most apart from my sister.
- Loop in my boss: I had to work from home when they were happening. Thank goodness he’s understanding, to get things organized so I can spend a couple days out of the office working from my couch.
- Pay attention to the calendar: be ready for them on the days they tend to sneak into my life.
- Get referrals (what a pain in the butt) for neurology appointments: Seriously, I had to jump through hoops to get them after my original neurologist retired.
Action plan is set. I have 1 month to get these things done and then it’s back to paying serious attention to my head and mood. Just writing all this down makes me feel dramatically better.
Honestly, I had actually intended to write about my fears in this piece - I spend a little time getting emotional earlier just thinking about everything that was going on and the “what ifs.” I let that direct an entire evening. “The unknown is coming, what do I do?” What do I do? Take the emotion out of it. Transform it into an obstacle or a challenge that I can overcome with the proper preparation. It feels less daunting and, really, less heartbreaking this way.
I don’t know what happens in a month but come hell or high water, I’m going to be ready for it.