At the age of 12, my life was different than other girls my age. I wasn't sleeping over friends' houses, I wasn't out playing soccer. I was at home suffering violent seizures. Like more than 2 million other people in the U.S., I have epilepsy. Despite how many of us are there are, so many people don't understand epilepsy. It can be hard to explain what it's like to live with seizures to someone who has never experienced one.
When I was first diagnosed with epilepsy, I was prescribed multiple medications to try and keep the seizures to a minimum, however, the seizures continued for the next four years, at least one per month. To make matters worse, I was also experiencing many side effects from the medication, often feeling depressed and unable to concentrate. My school work started to suffer as well as my social life. I was often unable to do things I loved, or see my friends.
My twin sister, Sadie, also has a form of epilepsy. It's been helpful to have someone understand what I experience in my day-to-day life, but my seizures have always been more frequent and severe than Sadie's. A lot of times I would experience a sensation that let me know a seizure was about to occur, but often they came without warning making it really difficult for me to feel comfortable in public. I was always afraid -- of when the next seizure would come, and what my classmates and friends would think.
I learned that I am part of the two-thirds of people who have the type of epilepsy that doesn't respond well to medication. It wasn't until I learned about a small pacemaker-like device for the brain that I finally had hope for the future. I underwent surgery to be implanted with VNS Therapy in June 2011, when I was 16. Although nervous at first, I was willing to try anything that would help me to regain control of my life.
The treatment has been life-changing for me. Today I'm on very few medications, and I am nearly free of seizures. Since being implanted, I have been able to start living life like I had always wanted to. Since I no longer worry so much about my seizures, I feel comfortable talking to people all day and just being myself. I started a new job at a hotel near my home where I'm working the front desk.
I also have been able to explore my love of art, and I spend much of my spare time painting and learning about ceramics. I'm currently in my senior year of high school and am taking AP art. Our teacher asked us to choose a concentration for our work, and right I away I knew I would focus on epilepsy. The emotions and experiences I've had from living with seizures have inspired some of the pieces I am most proud of. I will be starting college in the fall, and it is my dream to one day teach art to kids.
Later this month, I will be attending my senior prom and graduating from high school. But it was just about a year ago that I attended my junior prom, and epilepsy stole the experience from me. The strobe lights that are usually at school dances were a seizure trigger for me. After an unsuccessful attempt at having the strobe lights removed, I went to the dance, but spent most of the night in the bathroom out of fear that I would have a seizure.
But the experience showed me how people can help. With the support of a few friends, I was able to organize a public dance party for 40 of my closest friends that we held in our local park -- without strobe lights. That dance allowed me to experience something I had never been able to before, and gave me hope.
The night of my junior prom, I felt alone, and scared. This year, I hope I'll just be focused on my friends and having a good time. I used to think about my epilepsy all the time, every single day. But now, I no longer feel afraid.
I know that there are so many other people who still feel isolated by epilepsy. Aside from my art, writing is another dream I want to pursue and I hope that by sharing my story, I can let others know they aren't alone.
Check back here for frequent updates on my story and to hear about how my prom and graduation went! I can't wait.