Note: This post was originally published March 2, 2017.
So, do I have epilepsy or not?
Well, yeah. That’s why I’m here talking to you after all. I have stories about my seizures and what they’ve done. At the same time, I’m better controlled than many people with epilepsy. So what should I tell people about my epilepsy?
If I make too much of a big deal about it, people are constantly going to be shadowing me—wondering whether I’m having a seizure, always asking me how I’m feeling, checking in to make sure I’m stress-free and I’ve had enough sleep… I don’t want that. I don’t want to be given the kid-glove treatment. I don’t want to scare people into thinking that I’m always on the edge of a major medical event. Because I’m NOT. My seizures come a few times a year, not a few times a day. I work better, I live better, if people are living with their hands off me.
On the other hand, epilepsy does affect me. There are times when I have a seizure and can’t come in to work. If I have a late-night product rollout at work, I can’t be available in the evening, because I have to make up for the sleep I’ll lose. I can’t stay for ages at work, and a constant heavy workload does stress me out. I haven’t had a seizure at work for nearly twenty-five years—but that doesn’t mean I won’t. There might even be times I’ll have to give up driving and my work commute will get harder. So I can’t pretend I don’t have epilepsy.
How do I walk this tightrope? Where does the balance point come? Am I more like someone who has epilepsy, or someone who doesn’t?
I haven’t really thought hard about this, and I’d appreciate your comments. But I think… I think this is not the right way to put it. I’m not like someone who has epilepsy. I am someone who has epilepsy. People don’t need to constantly watch out for me, but I do need them to be aware that my life is different than most in many ways. My job, I guess, is to let people in on what it’s like to live my life. Then they can see that my epilepsy is sometimes a big deal to me, but not usually. If I can convince them of that, that’s when they can most understand, and accept, and help me. And that’s when I’ll be able to live my life the way I want to. The way I need to.
What are your thoughts?