It took me a long time to understand why epilepsy entered my world after being seizure-free for the first 19 years of my life. Truthfully, I spent a lot of years asking myself, why me? I was bitter at first about my epilepsy for quite some time. My bitterness was due in part to the loneliness I was experiencing. I didn’t have the same resources back then that are available today. I felt so misunderstood; however, I went on as if everything was ok. Frankly, I didn’t want to talk about it. The narrative was, ‘Jen has epilepsy, but we don’t talk about it.’ Honestly, that was my fault. I was embarrassed. I didn’t understand the first thing about epilepsy or even know the basics of seizure first aid. It silenced me.
It was not until I hit rock bottom in 2017 while attempting to manage my epilepsy on my own that it forced me to reach out. I needed more support beyond my family and friends. It was the best decision of my life. Not only did I get the help I needed, but I also found my purpose in life. For many years I felt that epilepsy stole a part of me, but now I realize it helped define me. When I began sharing my journey of living with epilepsy, I never imagined the impact on other people’s lives. My goal was to share my experiences so that others could learn from my mistakes. Once I realized that my fellow peers appreciated my sharing, I opened up even more. Messages of gratitude from young women, mothers, and caregivers started trickling into my inbox. Little did I know that my vulnerability was my strength. I gave others hope, a chance to see life living with epilepsy from a whole new perspective.
Here we are almost 20 years later, and I finally realize that I was born to use my voice for those living with epilepsy. I went from being Jennifer, who didn’t want to talk about her epilepsy, to Jennifer, who publicly shares her journey and is now a Board Member for the Epilepsy Foundation of NorCal. Although my peer sharing intentions have changed over time, today, I do it for the community. I speak up for the people who reach out because they feel lonely. I speak up for the mom who reaches out in gratitude for giving her peace of mind, believing now that it’s going to be ok. I speak up for you because I never want anyone to feel lonely or embarrassed like I did. I share to inspire, to bring hope, to cheer, and to educate. As scary as living with epilepsy can be, I don’t fear it anymore, knowing that I have a community of people who understands me. I can proudly say, I no longer feel alone nor embarrassed. I am now confident and hopeful, and my goal is that others feel the same.