Note: This post was originally published May 19, 2017.
Over the last not-quite-thirty years, my epilepsy has inspired a number of emotions in me. I’ve always been able to talk about it rationally, but how I’ve felt about it has been another thing altogether. At first, and for maybe five or six years, my predominant emotion was fear. I begged God, pleaded with him, not to give me another seizure. When I felt one coming on, I groaned my “No” and looked up to the heavens, hoping maybe this time it would pass.
That didn’t work so well. And after some years, I moved on to anger. Anger at my brain. Anger at the universe. At God. Why did it have to be me? I wondered. Why did I have to be the one to deal with the pills, testing, side effects, lack of driving, and on and on? I was upset even thinking about the possibility of having a seizure.
Of course that didn’t help the seizures either, or my overall happiness. And so after another few years, I arrived at the next stage: resignation. I decided to just say “It is what it is” to the universe, and let things happen. Funnily enough, that actually worked. I was less stressed about whether I’d get a seizure, and so I got fewer. I’ve had no generalized seizures in a dozen years, and I’ve had only a few focal seizures a year for as long as I can remember.
I had a seizure on March 20. Then another on April 24. Both were probably related to sleep issues. Both were focal seizures, but still. I’ve gone off driving. I’m really watching my sleep. I’m meticulously staying away from caffeine. And I’m angry again. I was doing so well. I was doing everything I was supposed to. This was UNDER CONTROL. Why me? Why now?
Rationally, of course, I know there aren’t really answers to these questions. Like I said, I’ve always been able to talk rationally about epilepsy. But DAMMIT DAMMIT DAMMIT. This is just not right. I feel like I can’t do anything anymore. Can’t drive, don’t feel completely comfortable with the idea of walking out by myself—I’ve even started cooking things on the back burner. Which, in turn, makes me feel … pretty much like everyone else who has epilepsy, right? Yeah, I guess. I’ve suddenly started running up against real limits again, and I don’t like it.
I guess anger has its uses. I don’t like it. But it does help me realize that I have epilepsy, and that (as my wife says) “This is serious business!” I’ll keep taking care of myself. I’ll do the six-month driving privilege suspension. I’ll keep sleeping safe, and cooking safe. That doesn’t mean I’ll like it, or be at peace with it. But I’ll do it.
Eventually, when I don’t need it anymore, I’ll probably lose the anger. But for now, I’ll be angry. I’ll be upset. And I’ll be safe.
Will I be well? As I’ve said before…