I blinked. My world shook. I looked into the eyes of a stranger and asked “How did I get here?”
Epilepsy. It came into my life from a fall nearly 9 years ago. One might think I would be used to it by now. Not so. I’m thankful for the quieter years when my seizures were, for the most part, controlled by medication. I lived in a world shaded from the truth that epilepsy changes your life forever. I’m glad I had those years in the shade, but I have walked out into the sun now and I do not like it.
In the last two months I have had two grand mal seizures. Both times I was alone on a sidewalk. The first time I was caught off guard and had no time to react and have the scars to prove it. The second time I had about 10 seconds to know I was in bad trouble. All I could think was SAVE THE HEAD and I moved to the grass and dropped to my hands and knees. I never want a staple gun smashed into my head ever again. I successfully saved my head. But I found myself looking into the eyes of a stranger once again and asking “How did I get here?” Again, another gentle voice told me I had a seizure. Best I recall I thought something like, oh @&^%$#. I don’t remember much after that. It is weird that each time I have a brief memory with an EMT and then I lose an hour or so and pick back up when things are calmer and I’m settled in the ER. Settled in the ER, now that is an oxymoron if ever there was one!
It is all overwhelming. I just didn’t realize how my life would change. I didn’t realize how the lives of my family would have to change so much. I don’t know how to adjust so quickly. I want to go back into the happy shade of controlled seizures. I don’t like the sunny side of seizures at all. After the first seizure I was counting down until I could drive again. I just thought it was a fluke and I didn’t expect another one. After the second seizure, I realized it was more than a fluke. Now we are dealing with more than just small breakthrough seizures where I maintain consciousness. The driving clock reset yet again. I quit counting down. It feels so far in the distance. I don’t worry about driving. I just want to be seizure free. You see, there is no cure for epilepsy. There is coping, by means of medication or surgery, but there is no cure. People with seizures, people with epilepsy; we face the dreaded “pre-existing condition” and the grind of brain changing chemicals everyday. This is my life, and 9 years later, I just NOW realize it.
I am thankful, don’t misunderstand. I am blessed in ways that can not be measured, but I live under some element of fear everyday. I have to think through where I am going and “what if?” I am just like everyone else and wish we knew that everything would be ok. That isn’t reality though. So I have to plan ahead. My husband needs to work nearby just in case that number he doesn’t know shows up on his cell phone and the caller says “Mr. Campbell?” He knows without the caller saying anything else this is not Publisher’s Clearing House calling. I don’t like that he gets those calls. I don’t like that when my son comes home and I’m not here, he instinctively texts us asking where we are. I don’t like that fear can transcend generations. I have watched the fear of my seizures pass through four generations of my family now. The fear makes me mad. Then I circle back around to being mad at epilepsy all over again. I see how people who don’t know much about epilepsy talk about it and it upsets me. I want to be understood. I want to educate them, but sometimes I get tired of trying to teach people to be accepting. Sometimes it is just easier to be quiet and hide.
I don’t know how I got here. I don’t know why I’m here. I don’t know when it will be better. I know I am not supposed to be afraid, but I am. I know I am not supposed to worry, but I do. I know I am not supposed to ask why, but I do. Normal is such an abstract idea, I am not looking for normal. Furthermore I have had too many concussions to remember what our normal was. I just want to feel safe. I want to blink and for my world to never shake again. I want that for me and I want that for our family. Is that so wrong?
© Copyright Gatewood Campbell, January 2014