Wednesday, September 15, 2010

"Unknown Cause"

I remember several years ago reading that in 80% of cases of people who have Epilepsy there is an "unknown cause". I remember thinking it was just ridiculous. How could only 20% of people with seizures know what was causing them and the other 80% be in the dark?

Last night, at a support group meeting, a mother of young boy with seizures asked me if it bothered me not knowing the cause of the seizures. I had not really been asked that before, but had thought about it and internalized it a lot over the years... wishing I was in the 20%. She asked if one would feel better knowing what was causing it.

There was a 3 to 4 year period of time after my diagnosis when I wondered what was causing them or what had happened to start them. I remember my mother asking the doctor in the hospital if "she" had caused it when I was born. Did she do something as a mother or did she do something during pregnancy or at birth that harmed me in any way. I was devastated to hear her ask the question. How could she possibly think this. I found it especially hard when her "baby" was sitting right in front of her and age 30 now.

The woman at the support group got me to thinking about things again last night. Does it bother me not to know the cause of the seizures? And I guess, truly, the answer is "yes". But I have gotten past that in my life. I have found a way to accept the situation. I have blindly accepted the situation without any hard evidence that points to any one thing in particular.

One of my first neurologists was such a strange man. Brilliant.. but strange. The best thing he ever did for me was to tell me to "move on... stop dwelling on things". I would bring him studies and information that I had found on the internet each time I'd have an appointment with him. I was looking at everything I could find that would tell me why I started to have seizures at the age of 30 out of the blue. It was upsetting to me at the time and everything I read led me in hundreds of different directions. He finally just said, "stop.. stop it right now... stop reading, stop looking.. and start accepting." It was hard to hear, but it was the best advice.

Every time I have an MRI I have a twinge of hope that maybe the technology has changed from last year to this year and the imaging will find something that has been there all along but has never been seen before. Each time, it fails to find anything significant or related to my seizures. When they first discovered the pituitary tumor in 2005, I felt a huge sense of relief. If that could be removed then the seizures would be gone. But the pituitary tumor is not the cause of the seizures and is unrelated.

I sympathize with people who are still struggling to find answers. I don't think you should ever give up trying to find all the pieces to the puzzle, but along the way you at some point need to also learn how to cope and how to accept things so that you can move on. I meet so many people that are so bitter and so upset and so angry. And these are people who have had seizures for years and years, sometimes 30 or 40 years. To live with that kind of bitterness for so long is not good.

My husband, having had a brain injury at a young age, also learned acceptance. And his family, along with him, had to learn that this is who he is now. There is a pre-TBI person or memory that some people have and then there is who he is today. What that person has and who they are will always be there, but what has happened to them and how they evolve because of it is what is important.

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