I guess I would describe my epilepsy as stable, but not stable in a way, because something can always show up. There is never an end to it even though you have a diagnosis, because there is no cure. You deal with whatever comes your way and you're always on the road to recovery so to speak, except there is no recovery. And that’s what gets to me.
It was 6 years ago, in April 2012, when I had my first seizure. Totally random, never heard of anything like this before. I was woken up frantically in the middle of the night by my husband. I had a full blown convulsive seizure in bed and I was taken to a hospital. When you’re taken in that situation, as soon as you go to the hospital they take your license away by default. So that was done, my license was suspended and I couldn't drive anymore. This was the biggest problem for me because I was independent and career-focused.
I struggled for many years asking why. Why did I get this? I did a lot of testing - MRI’s and EEGs. I was in the epilepsy monitoring unit for 3 weeks and that’s when they determined I have temporal lobe epilepsy.
In January 2017, I was just shy of two years of being seizure free. I was so excited about it because I would get my license back. Well, my seizures came back and when that happened I was devastated because I knew I couldn't drive anymore.
I would say it’s only this last year that I’ve come to terms with having epilepsy. It’s no longer about why I have it, it’s about what can I do from here on.
Since April of 2017, I’ve taken some time off of work and I've noticed that the seizures have tapered off. I came to the understanding that something with my lifestyle and stressors had to change. As an HR manager, this was a big decision for me. I had a lot of people coming to me and telling me that what I was doing, taking time off for my health, is really groundbreaking in our industry. What I’m starting to do now is to talk about how you CAN work when you have epilepsy. You just need some accommodations to be made and have a flexible work environment.
I’ve had to face the facts that this is my new normal and figuring out how I can work with it. Once I embraced this, I was able to take time and find myself creatively. I started reading again, I did painting, pottery and stained glass. I have more energy for my daughter, I go to the gym, zumba class and experiment with cooking. I’m happy and although, not seizure free, taking time to work on my life with epilepsy feels like the best thing I ever did.
* stories have been condensed and edited