I’ve had epilepsy for 16 years and I still don’t understand my body

I suppose I should be considered an expert. It’s been a part of my life for almost 16 years. Many days, I do feel like an expert, especially when I hear people talk to me about my disability, about my journey and tell me inaccurate information. Other days, when I feel out of my skin and my head, I still feel like I don’t understand what is going on in my own body. Shouldn’t I know by now? Shouldn’t I know how all of this will affect me?

I had my first seizure at 19 years old — and then my second.

I was then diagnosed with epilepsy. A brain tumor was causing those pesky little seizures, and it was hopeful that by removing it the seizures would stop.

Sixteen years later, I still have seizures.

It is my anniversary month: Nov. 30 will mark two years without a seizure. I still have seizures, but certainly not with any amount of frequency that others who live with epilepsy do. I know that.

I am lucky.

There is so much in the world of epilepsy that it would be almost impossible for me to be an expert, unless I went to medical school and specialized in neurology. There is just so much to know. I have complex partial seizures that are secondary to generalized tonic-clonic seizures. Basically, my seizures start small and finish big — and by big, I mean me unconscious on the floor, typically with some sort of injury.

The seizures never stopped. They didn’t stop even though I now have a hole in my head from where the tumor was. Naturally, the brain has trouble communicating with itself and may misfire — thus, seizures.

I am an expert in knowing I want the seizures to stop. To make them stop, I am on the best drug therapy regime I can be on. I manage my triggers as safely as humanly possible, without making myself crazy. Most importantly, I live my life.

There was a time I lived in fear of what might happen because of a seizure, but no more. My life is too short to worry about that.

I hope to share many more posts with you about my journey through life with epilepsy. Together we can create awareness and acceptance and promote epilepsy education.