Today I spoke with someone who had never met someone with epilepsy. The amount of questions he had were staggering. Things that I had assumed everyone knew. Assumptions that I now know were dangerous things to make. He was asking simple questions about auras, who can and can't drive, what to do if someone is having a seizure if there is anything that he can do at all.
When I was considering his questions, I thought back to when I was first diagnosed with epilepsy, trying to remember how much I knew. It turns out I knew just about as much as he did. I think many people with epilepsy get so used to how things are, that it becomes common knowledge to them. We go on through life with these things and they become usual. Those closest to us get familiar with them as well. When this happens it is easy to assume that everyone knows these things.
However, the general public is still clueless. I think it has to do with most people feel uncomfortable talking about this subject in general. Most people who do not live with epilepsy don't have anyone to ask. On the other side, those who do live with epilepsy are often times uncomfortable talking about it. I know I am. This blog is one way I can step out of my comfort zone and communicate with the world about epilepsy. I have always been much better at expressing myself through the written word than out loud. I'm also a bit more brave behind a keyboard than face to face.
I will continue running this blog for as long as I can for this reason. I also opened up an open question on the subreddit r/AMA, started a subreddit of my own, and spoke to a few friends a couple days ago about it. I don't go out of my way to bring it up in a conversation. I'm not really that type of person. But I don't avoid it as a topic any longer. If it comes up, I'll own it and answer any questions someone has.
I encourage you all to do the same. Maybe start up your own open questions on the internet where you can answer people's curiosities. Educating the public is a real responsibility of ours. I wouldn't go so far as to start handing out neurological advice, as I am not a neurologist. But simple explanations and "what to do's" are infinitely worthwhile. While they may seem simple to us, they will fill in some really large blanks that exist in the minds of others.