My Story: Mary

 My high school rowing club was known for our lightweight 4+ boat. Every lightweight rower and coxswain wanted to be in that boat. During my sophomore and junior year of high school, I watched our lightweight 4+ win Youth Nationals for two consecutive years. I desperately wanted to be the coxswain in that boat.

By my senior year, I was chosen to be the coxswain in the lightweight 4+. Two of the rowers were twins who I had been best friends with and went to school since I was a toddler. I also went to elementary school and high school with the other two rowers. We were extremely close, and so winning nationals wasn’t something we wanted to do for ourselves but for each other. Outside of practicing six days a week, I studied my recorded coxswain calls, drafted several race plans, and obsessed over everything under my control as a coxswain. I was prepared for anything to happen.

All the while, I started experiencing what I called “episodes.” I would hear or see something that would trigger a montage of visions or images that were all unexplainably connected, a weird sense of déjà vu. Whatever triggered the montage would then be added to the stream of images the next time I experienced an episode. I would become nauseous and dizzy, my head would pound, and I would lose focus on whatever was in front of me. Some of these episodes would last seconds and others would last minutes. I would proceed to barely remember anything that happened during these episodes. I would have an entire conversation with someone and then be unable to recall a single word of what the other person said. My entire high school graduation day was a blur.

When I explained these episodes to other people, I sounded crazy. Everyone gets déjà vu and the other symptoms can be explained by dehydration and stress. I decided that they were nothing because there was too much pressure and too much at stake for them to actually be something. Giving in and listening to these symptoms was not an option.

During our senior spring, we were unstoppable and only went one race without winning. By the time we got to nationals in Sarasota, Florida, we knew we were going to win. We flew by the quarter and semi-finals. As we were warming up for the final, I started experiencing an episode. I convinced myself it was just nerves because we were about to be the best in the nation. As we approached the start, the referee kept asking for me to respond. My bow seat turned around and asked, “Mary, are you okay?” Another ref yelled: “She is having a seizure. My brother has epilepsy.” I looked down at my body and realized I had no control. Everything went black, and I woke up in the ambulance.

Thinking that I was dying, the rowers raced with our men’s coxswain. As tears ran down their face, they crossed the finish line second in the nation.

The episodes/mini seizures and the grand mal seizure at the start of the race were caused by a benign brain tumor located in my right temporal lobe. It was the same type of tumor that caused my mom’s and cousin’s strokes: a genetic disorder called a cavernous hemangioma. It was a ticking time bomb that was threatening permanent brain damage, and so three and half weeks before starting my freshman year at Notre Dame, I had brain surgery to remove the tumor.

Everything was fine. The surgery was a success, and my doctors permitted me to attend Notre Dame and start practicing after seven weeks of recovery. I knew everything was fine, but mentally I could not move forward. Nationals constantly occupied my thoughts. I didn’t see the point of working hard to achieve anything ever again. I spent years training to become the best in the nation, and it was taken away in a matter of minutes. I blamed myself for not listening to the early signs of the tumor, and not being a national champion was the fault of my own. I felt powerless. I still have tumors in my brain, so why try to accomplish something when one of the tumors could act up again? I lived in constant fear that I was going to have another seizure. Every time I got back in the boat I thought: “Is this the day I have another seizure?” I treated a second grand mal seizure as certainty I would inevitably have to face.

I didn’t express this because I wanted everyone at Notre Dame to see me the way I was before the seizure: a bubbly, optimistic, and determined person. I refused to acknowledge that I was mentally defeated and lacked any drive. I wanted to be mentally okay, but I wasn’t. So, I put up a façade and pretended as if the thought of seizing didn’t occupy my thoughts.

At the end of my freshman year, I approached the start of the ACC grand final and thought: “It might happen again. I could have a seizure at any moment.” We crossed the finish line and placed third at ACCs in the second varsity eight. It was an accomplishment that I did not foresee happening during my first year as a coxswain at Notre Dame.

Nationals and having another seizure still crosses my mind, but it no longer looms over me as it did freshman year. I reconciled two facts in order for this to happen. First, working hard towards something does not guarantee an aspired accomplishment. Second, another grand mal seizure is also not guaranteed. I am not entirely sure what it took for me to accept those facts and stop living in fear of having another seizure, but I think hearing the stories of others helped me. It made me realize that most of the people around me also have something they fear each day. It was not something I had to face alone and learning that got me to where I am at today.