My name is Anna Hurley, I am 20 years old, a junior at Saint Michael’s College and a member of the field hockey team. I was diagnosed with epilepsy when I was 12 years old after having no previous symptoms or issues. The diagnosis came after a grand mal seizure that left me unable to speak, walk or react normally for several hours. I have learned so much since that day. My world, and that of those who love me changed dramatically. There are two ways to look at how my life has changed. One is to focus on the ‘can’t dos’ and the fears and the dangers and the feeling that you just don’t want to deal with it anymore. The other way is to focus on the good, on the blessings. I choose to focus on the good, but it is a choice that doesn’t always come easily and I need to remind myself to make it every day. I am blessed to have the support of family and friends who remind me about all that is good and encourage me to not be defined or controlled by what my mother calls ‘the monster under the bed.’ I am also fortunate in that I have been treated by an incredible medical team at Mass General Hospital. Dr. Thibert has never cautioned me about playing the sports that I love, all contact, all physical. Instead, from the very beginning he has encouraged me, only asking, ‘how was your season…how is the team?’ I am well aware that not everyone has the same support system that I do. My family has always viewed epilepsy as an opponent that we face together. Even though my mum’s first instinct was to cocoon me after my first seizure, she was the one that drove me to a hockey rink to scrimmage with the high school team. By ‘pushing the envelope’ and doing things that aren’t always easy, allows me to kick back at this ‘monster under the bed.’
Epilepsy affects approximately 50 million people worldwide. The disease itself frightens many people. Seizures aren’t pretty, they’re scary. Luckily, I’ve never seen one of mine. Epilepsy is one of those diseases or conditions that can be invisible. Unless you’ve seen me having a seizure you would think, ‘what’s the big deal, she’s fine.’ What you can’t see is that it is part of everything I do. For me to be safe, I can never swim alone, I shouldn’t ever climb a tree, I need to always stay very hydrated, to make sure I get enough sleep, and at 9:30 every night I take 6 massive pills that control my seizures. Epilepsy affects my short-term memory and therefore studying is different for me. You can’t see this, and that’s ok, because more than anything, I don’t want pity. I don’t need it. This is my fight and I know I’m not alone. BUT there are so many others out there who don’t have the ‘team’ that I have, who battle alone, who are paralyzed by fear, whose parents are paralyzed by that same fear. I am fortunate in that although my seizures are significant and basically leave me useless for the day they happen, I have only had 6 since being diagnosed. These seizures have dislocated my shoulder, fractured my nose and face and caused me to miss school, but worse they steal that time from me. I never know what has happened. It’s a terrible feeling to not recall where you were or what happened to your own body. Losing that control can make me feel so many things. Even though they are very well controlled, the fear never goes away. I am conscious of it on the field, in the classroom, in my home, wherever I am.
Perception. As with mental illness, perception can be deceiving. People who suffer from mental illness can look perfect on the outside. You can’t see the monsters they’re fighting but it doesn’t mean the fight isn’t real. People with seizures suffer physical injuries and often battle anxiety and depression. I understand that. There are days that I am angry because I have to wear a brace to play a game I love, because of an injury created by a seizure. There are days when I just don’t want to take those pills but know they keep me safe. There are days I’m just so tired, between the side affects of the medicine and the extra studying required because my memory is affected by my epilepsy. And then there are days when I just don’t want it anymore, I want it to end. But, that’s not my reality. My reality is that I agree with my mother: my epilepsy is a monster under the bed. It waits for me, it lives to hurt me and I am never free of it. That is the true perception. Think of something ugly and awful and vicious…that is epilepsy. As with most opponents, there is defense. Just like the goal I defend, just like the team I give everything to help win, I also have my own personal team. They are my family, my friends, my teammates, my coaches and my teachers. They remind me every day to find the good and to fight the bad.
I’ve written this because if there’s anyone out there who feels they are alone and need someone to talk to who knows what it’s like to fight monsters we can’t see. I am here. I will listen. I will understand. I will not judge. I will be part of your defense. Everyone needs one to remind them to kick back, to push, to not let the monster under the bed win.