Merridee Hays

Regional Ambassador

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Epilepsy has been a way of life for me. I had a horrific, high fever ear infection when I was about nine months old.  It was up to 107 degrees Fahrenheit when I was already in the hospital and my parents were asked to leave the room.  The incredible doctors were able to get my fever down, but they weren't sure what damage may have been done.  Due to the scar tissue, I began having seizures.  Eventually they became mostly controlled due to medication trials and errors.  However, there was always a fear growing up, and even into my adult years, about “what if.”  I held myself back from things and I was always embarrassed about being epileptic.  I used to be active with sports and had a lot of energy as a kid, but was always insecure about seizures. I never talked about epilepsy with anyone because I wanted to be “normal.”  I couldn’t get my driver’s license like others my age, due to seizures.  For a teenager, that is a BIG deal too!  Driving is so convenient that it is hard for others to realize how fortunate it is to be able to drive. Even driving to the grocery store is such a privilege. 

When I was in college, I started running as a hobby. For some reason, I enjoyed the peace and running up hills. I finally decided that I would run a marathon someday. I ran many 5K and 10K races, but never put in the time, perseverance, and hard work that it takes to train for a marathon.  I attended a training group and decided that the mileage schedule was crazy!  I continued running for fun, but still had a hidden desire in the back of my mind for running 26.2 miles. I also had a fear of epilepsy, and what could happen if I had a seizure while on a long run. As I got older, my seizures were no longer controlled.  My five and three-year old sons had to know how to call their dad and 911 when I had a seizure.  I felt like their child.  I despaired about them being responsible and taking care of me when we were alone.   I could no longer drive, take a bath, or even run by myself.  Having a seizure while on a run was a huge fear of mine.  I believe that people with epilepsy put off a lot of simple, everyday activities that we normally overlook in life.  

At the age of 37, my neurologist gave up on how to control my seizures.  It was very disheartening.  Nevertheless, I had a seizure one day at work that changed my life.  A customer saw me and how bad it was.  She returned a few days later and told me about an epileptologist in our area.  I was in shock!   I never even knew that they existed!  After almost a year of testing to see if I was an operable candidate, I was accepted for the temporal lobectomy.  After my surgery, and being seizure free for a while, I no longer let that fear take control of my life and goals.  I have had challenges with my memory due to the years of seizures and from the surgery, but I have learned to accept who I am in every aspect.  I decided to physically start focusing on my marathon dream, and a mission to make people see the capabilities that I have, even with epilepsy.  Since then, I have done numerous runs with the Athletes vs Epilepsy an initiative of the Epilepsy Foundation. I have raised thousands of dollars to make people aware of the adversity that those with seizures experience. 

I have conquered 9 marathons since 2013, and have been placed at the top of numerous runs for my age group.  I have also set a great example for my two sons, who are also runners and get involved in any runs that are for epilepsy.   I have run the hardest road marathons in the U.S.  on both the East and West coasts. I have qualified for the 2018 Boston Marathon with many minutes to spare. 

I am no longer scared of the route that I have ahead of me, and I no longer regret the path that I have behind me.