Don’t Ever Give Up

I grew up in Connecticut until I graduated high school. My whole life was spent in a small bubble consisting of my family, my church, and my private school. In 1997, which was the summer before 7th grade, I was diagnosed with epilepsy while on a family vacation. People in my “bubble” tried to pretend my seizures weren’t a concern, despite having them almost daily by the time I reached my junior year in high school. I was a 4.0 student who loved learning and sports. I loved music and dreamed of becoming a concert pianist. But, my seizures and medications changed that. I felt like a failure inside. I pretended to be happy and normal, and I ignored my epilepsy the best that I could, including not talking about it. Inside, however, it felt like the life I lived and loved was over.

A month before I graduated high school, I was expelled when I had a seizure in the “wrong place at the wrong time.” I was accused of faking it, lying about it, and being a disruption to our school. In college, I faced similar challenges, but I eventually graduated with a bachelor’s degree in counseling. I got married, got a job, was fired from that job, lived in a domestic violence shelter, and then divorced. I also dealt with the loss of my friend who was like a brother to me. He too had epilepsy. He committed suicide because of depression and brain damage that was a result of his epilepsy.

During this time in my life, I met — and later married — my current husband. The day he found out I had epilepsy, he immediately researched it. I knew right then he was a keeper! My husband has stood with me during the many changes in medications, seizures, multiple video-electroencephalography monitoring, other tests, two vagus nerve stimulation (VNS) surgeries and so much more. We’ve been together for nearly 13 years and are now living our best life in Colorado. He loves everything outdoorsy, and since I find that harder to do with my VNS, I learned how to cook, which was something I was never allowed to do after my diagnosis.

My husband and I are active in the epilepsy community through volunteering, reaching out to others with epilepsy, and educating those around us about seizures and epilepsy.

Despite being told in college I would never be able to teach, I have been teaching as an early childhood educator for more than 10 years. I have become very comfortable sharing my epilepsy story and the challenges I have faced, including discrimination in school and work, and ignorance from doctors. I also like to share about my successes in life, such as being empowered by my experience and reaching my goals. It’s been a long journey, but each part has helped me grow to the person I am today.

I joined epilepsy advocacy forums to stay hopeful and alive when I was first diagnosed. That’s where I met my now best friend and formed a support group with those I met. Without the support of the epilepsy community, I would have been completely alone, lost and depressed. There is still so much stigma and misunderstanding about epilepsy. Over the years, I’ve become empowered to advocate for myself and find opportunities to give back and to help educate others.