Tuesday, June 9, 2009

As I have mentioned before I do have epilepsy. I deal with people, when I'm working, who have epilepsy. I don't find it very easy. I'm trying to understand what my problem really is. I know I have epilepsy, I know that epilepsy is not, in and of itself, a bad thing. I don't really have a hard time telling others about my epilepsy. I just have an aversion to "epilepsy" in a general sense.

Sometimes I feel that it might have something to do with the fact that my brother had one seizure when he was about 12 or thirteen and I was 8 or 9. He had the seizure when he was lying in bed with me. We were on a vacation in North or South Carolina (I think) and in the middle of the night he had a grand-mal (or tonic-clonic) seizure. It scared the s_ _ _ out of me. We went to the ER and while I was sitting in the car seat next to him I didn't want to touch him, or even sit in the same spot as he had sat, because I might catch whatever disease he might have. Nothing was ever mentioned about whether or not he had epilepsy or any of the things that we should be careful about if or when he had another seizure. We were, my parents and I, very naive about the whole thing. This was about 40 years ago. Nobody really knew much about epilepsy at that time.

I didn't have epilepsy at that time. Later on when I was about 15 or so I had my first seizure. I, however, was blessed/stuck with epilepsy. And, subsequently have had many seizures. Including two brain operations, a Vagal Nerve Stimulator , and many medications.

For now I refuse any more operations of any kind (I've had my VNS turned off). I also won't take any medication that has a side effect of weight gain. You should have seen me 13 or 14 years ago.

Maybe that's where my aversion comes from. I'm not sure. It's something I need to work on.


Monday, December 8, 2008

Friday Night

Hi All,

I lost my password for my other blog which was titled "Let Me Say This..." I'm not very computer literate so this is my best solution.

I had a seizure on Friday night at a handball tournament. I've had epilepsy for 35 years and I always think I'm past caring much about what other people think of my seizures or my epilepsy in general. There was a second day of the tournament and I went to that also. I really had to force myself a little to go. I can't say I was embarrassed to return to "ground zero," but I certainly felt uncomfortable. I know everybody was fine with my seizure. Apparently there was a nurse who helped me out at the tournament and all people who saw me the next day were very understanding. But I still felt funny. Not embarrassed but... Well I guess its hard to put into words exactly how I felt.

I hope there will be people who read this blog and respond. I'd rather not be a "voice in the wilderness."

Best of Regards,