I am proud to have been selected as a member of the EFMNY Epilepsy Road Warrior team for the 2024 NYC Marathon! As many of you know, our lives changed in September 2022. What seemed to be a casual and relaxing Saturday night quickly turned when I was suddenly awoken by the feeling of the bed shaking and Marissa was convulsing next to me. At that time, Marissa had no prior medical history of any seizures, so this was surprising to us and our families. After weeks of testing, scans, and doctor’s appointments, Marissa was officially diagnosed with epilepsy and what she had experienced was a tonic-clonic seizure. This marked the beginning of a difficult journey for both of us. We discovered Marissa had been having seizures for years without ever knowing what they were. What she thought to be hormones or migraines were, in fact, focal seizures. These types of seizures don’t fit the image that comes to most people’s minds when they think about epilepsy and seizures..
A little over a year and a half later, we are still working with Marissa’s neurologist to find the correct medication and dosage of the medications to help Marissa remain seizure-free. Epilepsy is not just seizures that result in somebody convulsing and losing consciousness. There are many types of seizures, some that can even happen when a person is awake and alert. They can include memory loss, mood swings, and forgetfulness. There is always that anxiety of not knowing whether I am having just a headache or experiencing another seizure. Is this from the medication, or just stress? There is so much more to this disease than what people see and read. It truly affects every part of your daily life.
The reason I chose to run this marathon is to fundraise to help raise awareness of epilepsy. The struggle of training and pushing my body to limits I never thought possible is nothing compared to the perseverance and courage I have seen Marissa display every day since her diagnosis. She does not let her disease define her. Running the NYC Marathon is nothing compared to the marathon that Marissa has endured over this last year and a half. She has learned to live with her diagnosis and is doing everything in her control to be the epilepsy warrior that she is. In the grand scheme of things, we are very fortunate that Marissa has been able to face this life challenge with a huge support team; many are not. Marissa is still able to drive, work, and live a normal life as best as she can- many cannot. This is why I aim to raise a minimum of $3,500 to advance research and treatment for epilepsy. Thank you for taking the time to read our story, and please consider donating or at least sharing my fundraising page. We appreciate, and love you all! Marissa, I can never say enough how much I admire your courage and strength; you are truly the definition of an epilepsy warrior. We love you!
