Matt’s Story

By: Matt

I had my first grand mal seizure when I was 12.

My brother found me seizing after I fell off of the top bunk of our bunk bed and I was taken by ambulance to the hospital. I remember waking up in the ambulance confused and gasping for breath. After passing out again, I woke up in the hospital room and was lucid enough to feel embarrassed about the nurse stripping my soiled clothes and placing a gown on me. A certain amount of naivety cushioned the experience, but I remember feeling bothered as I caught curious stares at my body hooked up to a portable EEG machine. I tried to hide in my hospital room as much as [Matt and Family] possible to deny my status as a neurological hospital patient. Most of all, I remember my parents’ concern and how my little brother was afraid of me. My parents and I left the hospital relieved as all of the neurological testing indicated a lack of brain damage.

Over the course of about a year, I was put on a number of anti-seizure drugs. One after the other, however, the drugs failed to stop the grand mal seizures from occurring or resulted in extreme side effects. One medication caused a miserable fever that scared me. I wasn’t overly self aware, but I remember having a difficult time regulating my emotions and I was worried about being able to be a normal person when I got older. Eventually we found an effective treatment, which consisted of me taking a dozen pills every day. After an extended period of time without epilepsy symptoms, the doctor concluded that my seizures were likely due to developmental processes during puberty and would not persist as I aged. As I progressed through high school, I was weaned off of the medication without issue, and I thought my experience with epilepsy was behind me.

I went to Harvard to play football, but after a physical revealed neurological issues (my smile was asymmetric), I was asked to undergo further testing to reveal the status of my epilepsy. After determining that it was still present, my coaches, family, doctors and I made the decision that I would stop playing football. I was a passionate about the sport, and retirement was difficult for me. I felt victimized by the disorder, as it barred me from the passionate pursuit that I loved.

However, as so many times is the case, when one door closes, another opens. With the extra time I gained from not playing sports, I honed my academic focus and discovered my classroom passion. I was drawn to neurobiology and neurogenetics through researching what my new anti-seizure drugs did to my brain. After a few neuro classes and lectures, I knew that I was hooked. I loaded my schedule and joined the Dr. Matthew Anderson lab at Harvard Medical School, which focuses on genetic models of epilepsy and autism.

Through learning about the brain in the classroom and laboratory setting, I made the decision to follow a path toward becoming a Neurologist. I hope to facilitate better care for those with neurological disorders by applying my experiences in receiving care. Also, I someday hope to run a lab that focuses on integrating basic science research with a clinical understanding of epilepsy toward developing therapeutic strategies for the disorder.

Having epilepsy has, in many ways, defined my past, present, and future. Though the disabling aspects of epilepsy deflected my path away from playing college football, the mechanistic and scientific aspects of the disorder focused my new path, and charged me with a burning passion to better understand the disease. I am uncertain of how epilepsy will influence my future, but it gives me hope that CURE is dedicated to asking the question “How can we cure epilepsy?”