Finding My Voice Through Sharing My Story

My seizures began when I was 23. I was just getting my feet wet in the working world, with many dreams ahead of me. I met my soon-to-be-husband, and we were planning our wedding when I was diagnosed. I had been having partial complex seizures for some time, not knowing what was happening. With my diagnosis, I had a reason for my bizarre Deja-vu sensations and the sense of being out of my own body. While helpful for defining my problem, I soon learned that a solution would prove challenging, if not impossible.

I was afraid to talk about epilepsy and to admit my diagnosis to myself or anyone else. I wanted it to be short-lived and easily treated. I was also terrified of when the next seizure would happen, which brought a whole new level of anxiety for me. My most horrifying moments were having seizures at work or on the bus, and to make matters worse, I sometimes lost bladder control. I would sit there dazed and soaking wet, wanting to escape my own body.

No matter what medications and combinations I tried, my seizures were never controlled. I had to give up some of my life dreams, and I quietly grieved the things that epilepsy stole from me. I was distressed to give up driving. My freedom and independence no longer existed. 

Mentally and emotionally, I needed encouragement beyond my husband, although he was always my biggest supporter. I sought out wise mentors and did a lot of journaling, which was very therapeutic. In time, I got better at asking for help, and I found my voice in dealing with my numerous medical hurdles. I was surprised and delighted to discover that when I shared my seizure burden, others were more apt to share their life struggles with me. 

I swore I would never consider brain surgery because it sounded so scary, but after several brain studies, I was told it could be life-changing. After 16 years of seizures, I boldly opted for a laser ablation in 2018. The surgery gave me a new lease on life! I wrote a memoir about my journey, called Seized and Driven. I have made a lot of new epilepsy friends because I shared my story.

Wherever you are on this journey, you must be your #1 fan! Ask for help and keep asking if you must, because you are worth it. There is always something new coming down the pipeline in neurology and epilepsy research, so that is a reason to keep hope alive. If your doctor isn’t providing enough answers, seek another opinion.

I volunteer with the Colorado Epilepsy Foundation for mentoring and community outreach. I also went to Washington, D.C. to be a part of the Epilepsy Foundation’s Teens Speak Up! and Public Policy Institute, which was amazing! I have been so glad to connect and share stories with people who have experienced the same trials as me. It’s been affirming and uplifting to share the heartaches and victories of our seizure journeys.