Mia’s Story

My journey with epilepsy began in 4th grade when I caught an awful case of Pertussis. After months of being sick, I finally recovered and was healthy again, but my health and my life took an unexpected turn. At 9 years old, I experienced my first seizure, though at the time we didn’t know what it was. My left side would tense up with a stabbing, burning feeling, giving me no control over my body or my ability to speak. With these episodes increasing, my parents and I became very worried about what they could be. These episodes started to become less and less frequent until they were dormant for a few months, but after contracting a bad case of Bronchitis, these episodes returned and haven’t stopped since. The episodes grew to become more and more painful. At one point, the frequency increased to an episode every 15 minutes. We visited doctor after doctor, none of whom could offer any explanations or answers to what these episodes were.

Fast forward to high school, and I was once again blindsided. Halfway through my freshman year, I had my first seizure in my sleep. To date, these seizures in my sleep are still the most terrifying things that I’ve ever experienced. They were incredibly violent and dangerous. I would kick the boards that held up my bunk bed out of their nails, slam my body into the wall, wake up screaming on the floor disoriented and in pain, wake up with blood on my shirt and chunks of my tongue on my pillow, and had no control over my body as it frantically and violently flung around. I had these seizures almost every night (sometimes multiple in a night), which left me physically, mentally, and emotionally exhausted every morning. After multiple EEGs, we found that my body wasn’t going through the entire REM cycle because every time I was about to enter REM sleep, my body would have a seizure. However, at this point, no doctor could figure out that these episodes were seizures, let alone how to help them. With this severe lack of sleep, normal, everyday things became increasingly difficult for me. I started to experience both short term and long term memory loss, difficulty focusing, and lethargy, so my grades began to suffer. This was one of the hardest things for me to cope with because I knew I was smarter than the grades I was getting. It was ridiculously frustrating to see my grades continually slip even though I didn’t change my work ethic. If anything, I was working three times as hard. My grades were no longer reflecting my intelligence, and it was devastating for me to accept this, especially when it came time to apply to colleges. The combination of physical, mental, and emotional exhaustion on top of my struggles with school took a great toll on my mental health.

I became depressed, struggled with serious self-harm, and lost my joy in living. The little things began to add up as well, such as the heartbreak of watching my little sister get her driver’s license when I was medically not allowed to get one, seeing my friends treat me differently after finding out about my medical condition and mental health issues, and the constant frustration of going to doctor after doctor, getting test after test done, and making no progress in getting a diagnosis or finding anything that helped. High school was the darkest time of my life, and I struggled every day to not give up on life. There was no one who could understand what I was going through, and I felt so lonely, lost, and confused.

Luckily, partway through my senior year, we found a medicine that stopped my nighttime seizures. I will forever be grateful for this medicine, and I owe my life to it. However, my daytime seizures were still a daily occurrence and what was wrong with me was still a mystery. Even though I lost all hope of finding a diagnosis, I learned to accept this, and my life started to take an upturn.

After over 10 years of tirelessly searching for an answer, I was diagnosed with epilepsy in August of 2019. Here I am today, a sophomore in college living my best life. I have been 3 years free of my nighttime seizures. Though I still struggle with my daytime seizures on a daily basis, I don’t let them stop me from reaching my goals. I’ve rediscovered happiness and will never let it slip away from my life again. I am accepting that I have epilepsy, and I want to make a change. I want to help raise awareness and break the stigma that surrounds epilepsy. One day I hope we can find a cure for epilepsy. Epilepsy does not define me, and while I still struggle with feelings of insecurity and embarrassment along with the constant fear of having a seizure during something important like a class presentation or graduation, my epilepsy has made me stronger. It has made me into the person I am today. I’m so blessed to have had such a supportive family along the way, and I will forever be thankful for my parents who never gave up on me. Living with epilepsy is far from easy, but all of us who have epilepsy should be proud of how strong we are to be able to live, fight, and succeed every day despite this disorder. Love and take pride in who you are.

Love,
Mia