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.

Rob

1 comment:

Amanda Krzywonski said...

This post really speaks to me. I know the feelings of frustration and fear that come along with having Epilepsy. Never knowing when the next seizure will strike or if your new medication will fail you. I have tried almost all of the 20 seizure meds on the market at this moment and I too have recently been implanted with the VNS device. I am trying every possible way that I can to cure myself, because I believe there is a way. Society needs to be more aware of what Epilepsy is, and what to do if someone has a seizure. It's great that you are blogging about it because other people can read about your life and learn new things that could change their lives. I am also blogging about my life with Epilepsy at http://mandykrzywonski.blogspot.com
. I hope you will check it out and follow if you would like to. It's great to know that you're not alone in this world. God bless you.

Sincerely,
Amanda Krzywonski
(My Life as Mandy)