My First Seizure in 3 Years... And Accepting I Can't Control Epilepsy
Last updated: April 2023
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.
Since being diagnosed with epilepsy, has your memory been impacted?