SECTIONS
What would you like to know?
Share this Story

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

the important stuff: i have a MS in recreational therapy and a BS in sociology. i enjoy working with children, yet have none of my own. i am fanatical about what i eat and where it comes from. i thrive on maintaining a healthy and active...

I was only 19 when I had my first seizure

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.

Comments
Follow Us

SheKnows Media ‐ Beauty and Style

Hot
New in Health & Wellness
Close

And you'll see personalized content just for you whenever you click the My Feed .

SheKnows is making some changes!