My First Seizure in 3 Years... And Accepting I Can't Control Epilepsy
Epilepsy has been a part of my life since the age of 9 years old. Unfortunately, I often didn't know how to feel when a seizure would occur. It left me feeling isolated and wanting to not feel embarrassed about my epilepsy. So I went on a quest to eliminate the shame surrounding epilepsy.
And it worked. I could build a community and truly feel open with them. However, there are still times when I struggle.
Years between seizures
I went 3 years without seizures, and I thought they were gone. Then BOOM! They came back. I'm strong, but I still need the community to get through. Epilepsy is 1 thing I wish I could control.
One April morning, I was at my job and completely lost time. I was on a film set moving a chair and table outside. I was walking with a table and chair, but by the time I reached my destination, I did not have the table or the chair. And I had a black-out moment. I did not remember putting them down. As a result, I had to look for the table and chair (which I found).
This seizure scared me. I felt out of control. I had been getting little warnings from time to time, but it wasn't like this – it wasn't a seizure.
I'm having seizures again?
This was my first seizure in more than 3 years. I thought that maybe I was tired. I didn't sleep long the night before and had a coffee and sugar that morning. I kept having lapses in my memory as I was still at work. I texted my parents and told them, "Hey, I think I had a seizure." They replied in worry and told me to go home.
I felt like I was about to break down and cry, but I couldn't because I was at work. I had to hold it together. So, I texted my boss to see where she was. Then, I let her know what was going on, and that I was having seizures. She was very understanding and let me go home. Thankfully, we were working about 5 minutes from my house, so I took an Uber home.
When I got home, I got in bed and cried. I was still processing the fact that I had had my first seizure in 3 years. I was not able to accept it. I mentally did not want to go down that road again. I thought I was cured of epilepsy, but it's an ongoing journey. I cried myself to sleep that morning. I felt like I had let myself down.
We can't control our epilepsy
The one thing about epilepsy is that I cannot control it. It was like this seizure started, and I had to figure out how I would adjust my life. After I woke up later that evening, I began to map out how I could effectively live alone. I knew it would not be easy, but it was possible.
I knew I was not moving in with my parents again. Therefore, I had to build a community around me and take precautions for myself. Even though my seizures are active now I haven't given up on myself. I have chosen to live alone and not move in with my parents this time. As a precaution, I've reactivated my seizure alert watch and it alerts my family when I have a seizure.
Epilepsy isn't predictable. We can never call ourselves "cured." And we have to bravely accept what we cannot control while doing our best to manage what we can.
Has a companion ever accompanied you to a doctors visit?