I've accepted that I have epilepsy. There have been a few times that I've been ready to punch a wall because of it, but I get over it. I think it's others that have the problem accepting it.
I have a horrible memory. When someone tells me about something that happened they'll get upset that I don't remember it. I never remembered it happening so I guess you could say that I never got upset that I forgot it? Sometimes I do but other times it can be nice and funny to hear about the stuff. I'm always asking the same questions over and over again, I never remembered asking them the first time, and they'll get mad that it just doesn't stick up there.
I'm not the one who sees me have the seizures either, it's others. So I don't know what it's like to watch me lay there, shake, drool, slur my speech and all the other things. Their also the ones who have to call 911, watch me go away in the ambulance to the hospital, sometimes stay there and are scared to death that I'm not going to come out of this seizure.
My family's scared to death to leave me alone in public. They always say that they're afraid I'm going to have a seizure and wonder out the door and go who knows where. Recently I needed to run into a store and pick up something. My dad, who is actually the best at having me have my freedom (if that's the right way to describe it), was taking me and he had several other things that he needed to run around and do in a short amount of time for his business . It took some haggling, telling him I wouldn't have a seizure and run away over and over again, but I finally convinced him to just drop me off at the store, go do one or two of the things he needed to do then come back and get me. He must have flew doing these things because he was back just as I got in the check out line. When I told my mom about this she just about threw a fit! I bet my dad really heard it from her when he got home that day!
I was talking to my aunt, who's in her 90s, recently. I was telling her what some of my seizures were like. She told me that I shouldn't be going up and down the stairs, taking a shower, cooking and several other things when I'm alone. I told her I'm fine doing these, I do try to stay away from the stove I've had some bad experiences, but she still didn't think it was a good idea.
When I meet someone I don't put out my hand and say "Hi, I'm Valerie and I have epilepsy, how are you doing?" If someone will ask something like where I work, drive or what ever else that would deal with having epilepsy, I'll tell them that I don't because I have epilepsy. There have been a few times when I've told someone that I have epilepsy their eyes will get really big, pull their hand away and actually take a step or two away from me as though I'm going to drop to the floor and start shaking like crazy any minute. Who knows, they might even think they can catch it? Other times I'll hear "Oh, my friend/family member has epilepsy too" and we'll just go on talking. This is really nice.
Almost everything that people see and know about epilepsy and seizures is on tv and what are those seizures like? People shaking. Heck in The Exorcist (I believe that's the movie) the girl is thought to be possessed by the devil and that's why she's shaking like crazy, not because she has epilepsy and she's having a seizure. People need to know that there are more types of seizures than complex partials. I think that some people might believe that all people with epilepsy have seizures every five minutes!
If there was more knowledge out there about epilepsy I think things would be quite different.
