What is Awareness?

I know I haven’t posted anything new in awhile, and there’s no excuse for it. I just haven’t had much to say.

So I’ve been thinking a lot lately about epilepsy. I have had quite a few pretty nasty seizures in the last week or two. I also discussed with my doctor brain surgery, and decided that, if possible, I would like to pursue that course of action. When it comes to the surgery, I talk about it flippantly. “Guess what, I get to be part robot! They’re going to put wires in my brain. Maybe I should get a tattoo over my eye like Seven of Nine.” (If you don’t get that reference, watch Star Trek Voyager.) But the thing is, I’m not flippant at all. I’m not even sure why I’m so interested in telling people. My family knows about my decision, and my close friends, and for some reason I’ve decided to tell my coworkers. Considering that it’s still in the potential stage instead of being an absolute, I’m wondering why I’m even bothering.

The thing is, I’m scared to death. Maybe that’s why I want to talk about it so badly. I want people to know just how scary the thought of undergoing brain surgery is, even though I know they won’t understand it. I want people to know what I’m going through, even though it doesn’t apply to them. I want someone else, almost anyone else, to recognize that while they are driving to work, and making lattes, and living a normal life, I am struggling. I want someone to notice, even a fraction of a percent, that I’m struggling. So far, the only person who understands on my level is my husband, and well, since we live together, I think that’s a little expected.

So while the brain surgery is a big thing on my mind lately, I’ve been thinking about epilepsy in general. I’ve been thinking a lot about what it means to “raise awareness.” What does that even mean? People are either going to support you or they’re going to be completely clueless. Last week was March 26th, also known as Purple Day, to the epilepsy community. Some little girl in Canada decided she was going to start a movement of wearing purple every March 26th. It took, and it became an international thing. The fact that it even got out of her hometown is, in itself, an incredible feat. “Raising awareness” for something is incredibly difficult. What is awareness? I’ve spoken to our legislators, worked at the state fair, done a fundraising walk, and a small variety of other things, but I don’t think anything has legitimately raised awareness. The legislators don’t care about anything unless they have to vote on it. The people at the state fair are more interested by free pencils than they are about seizures. And the only people who contribute to a fundraising walk are close friends and family. No awareness is raised. None at all. The people who know about it know about it, and the people who don’t know don’t care.

You can raise awareness in theory. In theory, I would be a supporter of causes like Alzheimer’s, Cerebral Palsy, MS … any variety of things. But at the end of the day, the only thing I can say is “Alzheimer’s means memory loss.” I don’t really know anything at all. So what on earth can I possibly do to “raise awareness” for epilepsy? I had a huge outpouring of support on Purple Day. I had friends posting Facebook pictures and taking selfies of wearing purple. I wore purple and had a button on that said “Epilepsy Awareness.” But no one, no one who didn’t already have a stake in the game, even noticed. I did have one woman approach me at work, but it turns out her niece has epilepsy too.

So that brings me back to my question. What is awareness? How do I raise it? How do I get people, ordinary people, to care about something that doesn’t apply to them? But here’s the thing, it doesn’t apply to them now. It might in the future. If you’d have gone back and told me 10 years ago that I would have intractable epilepsy, I would have wondered what that was. But the thing is, it’s really common.
How many people were in your high school class? In mine, there were 96 people in my graduating class. I generally round up to 100 for convenience’s sake. When I graduated, no one had epilepsy (that I know of). In the next 50 years, 3 people probably will (myself being one of them). And get this, of those 100 people, at least 10 will have had a seizure. I know that statistics are boring, and they don’t really hit home. But sometimes those statistics apply to you. Sometimes, you’re the 3%. Someday, when you’re least expecting it, you could wake up in a hospital with no memory of the last hour, or day, or week, or even year, and wonder how you got there. Someday, maybe you’ll be watching your kid sleep, and when they wake up they’ll start seizing. No reason whatsoever. Someday, it could be you.

So maybe that’s what awareness means. Maybe awareness is finally figuring out that you aren’t the exception, and that one day some of these issues could actually apply to you. Whether it’s as severe as epilepsy or as trivial as a bad haircut, maybe one day you’ll realize that these things actually happen, to real people, and that you could be one of them. In the meantime, I’m going to become part robot.