I still remember the moment I first heard the word used about me. It wasn’t even a diagnosis, more like an offhand remark. Something along the lines of, “Didn’t you know? After brain surgery, this can happen.” At the time, I tried to brush it off, not to let it burrow too deep into my mind and start taking hold.
But when, still recovering from the surgery, I learned that I wouldn’t be allowed to drive for a long time, that really hit me hard. That thought was impossible to sweep under any kind of imaginary rug. It started gnawing at me right away, dragging with it a suffocating self-pity that can almost crush a person. No driving? With two little kids? Kindergarten, baby swimming, everyday errands?
The final blow came with the pill organizer. At thirty-three, I started sorting out my weekly medication so I wouldn’t forget how much to take and when. “The fear of epilepsy washed over me right away, but the feeling of actually being a patient never took hold.” Even after more than ten years, taking the medication hasn’t become routine. The organizer is indispensable. Supposedly I should feel lucky because other people are on far higher doses. But who cares about other people? I don’t want to have epilepsy. I don’t want to actually tick a box at the dentist that basically says I’m defective in the head.
I haven’t had a seizure in years, yet it still hangs over me. Right now my circumstances mean I don’t have to worry, but that could change at any time. Pretending not to think about it doesn’t make it go away.
And then, of course, there are moments when I remember that I’m still among the luckier ones. My daughter has coeliac disease, and I always tell her: be glad that’s “all” you’ve got. With a bit of planning, it’s manageable. I usually mention life-threatening allergies as an example.
Today my teenage son went through the second round of his very first facial treatment. Since he’d said the first one was the most painful experience of his life, I treated him to a frappé latte afterwards — one of the most delicious things in the world.
We were walking back to the car with our drinks when we passed a woman in a wheelchair, not much older than me. I had noticed her earlier, on our way to the harbor for our well-deserved coffee treat, but I hadn’t paid much attention. On the way back, though, I couldn’t help but see how motionless she sat there, her chair pushed up against the wall. I have no idea what her story is, but it was obvious that in that moment she had switched herself off, waiting to be moved. The sun wasn’t beating down on her; clearly she’d been left in a safe spot, and she didn’t look neglected either. And yet it made me stop and think. It reminded me how easy I have it, being able to go anywhere, anytime, at whatever pace I choose. Yes, my twelve-year-old pill organizer may be waiting for me every morning and evening, but I’m still the one who walks over, opens it, and swallows the little tablets crouching inside. And when I think about it, maybe I can be grateful after all that I “only” have epilepsy — because even so, I have more freedom than I ever thought I did.