Updated: Aug 26
I’ve come to realize that telling my story about epilepsy is twofold. In addition to raising awareness for a cause that is close to my head and heart, it is also a cathartic experience for me. For many years, I defined myself as an epileptic chained to my medical bracelet, prescriptions, and pill box. While I will admit now that I probably should have talked to a counselor or therapist (Mom, you were right), I came to accept my diagnosis in my own time. Rather than being defined by epilepsy or as an epileptic, I now see that it is a small part of who I am. This story is not just about me, but also the people who provided me with so much love when I needed it most.
I loved high school – when given the choice between high school and college, most people would opt for college, but not me. I thrived in high school, but college was a slightly different story. You would have thought I was disarming a bomb when it came time to make my college decision, but I finally chose the University of Dayton. It already felt like home after visiting my sister, Lauren, during her first 2 years there. My first semester was not without its bumps; despite academic success, I faced bullies and for the first time my confidence and spirit were hampered. In spite of these problems, I pushed through and was prepared to face my second semester in a new light.
My first seizure was on February 6, 2012. It was the day after the Super Bowl, which I had spent with my sister, Lauren, and her roommate, Kaitlyn. I was in calculus class, and the next thing I knew I was staring at the ceiling with an oxygen mask on. My first thought was, “I can’t believe I passed out! How embarrassing!” But then a student EMT quickly asked, “Hailey, have you ever had a seizure before?” After I let out a shocked cry the EMT said, “I know it’s scary.” But did she actually know? From what I later heard, I gave the whole class a scare, especially my professor and the Chinese exchange student who sat next to me. As they strapped me to the gurney, I squirmed, trying to pull the oxygen mask off and gasping between tears. As a side note, I don’t understand why oxygen masks make you feel like you’re suffocating when they’re supposed to help you breathe?
Check out Hailey's GoFundMe Page: https://gofund.me/ac41240b
At the hospital, all I could do was cry and wait. When a nurse finally pulled back the curtain to reveal Lauren walking in, we both welled up with tears at the sight of each other. I have always looked up to Lauren and we have always been extremely, close but having her at the hospital felt like being rescued and brought me peace. I have no other recollection of my hospital trip until we reached the exit. Kaitlyn was waiting in her bright yellow SUV to take us back to campus. As I got in, she handed me tortilla chips and corn salsa, saying “I know how much you liked it last night.” I started crying again and then quickly dug into the chips. My parents rushed down to Dayton, and we were referred to a local neurologist. We came out of the appointment relieved after being told that everyone gets one “freebie” seizure, and this was mine! Or so we thought…
Four weeks after my first seizure, I developed a bad headache on my way to English. I walked into class with no recollection of where I was supposed to sit and ended up in the wrong seat. As class started, I could hear my professor talking but couldn’t see her, repeatedly asking my classmate (who I didn’t usually sit next to) where she was. I went to the hospital again but left with no answers.
Like clockwork, exactly four weeks later, I had another tonic-clonic seizure. Unfortunately, not only did this event put me in the hospital but it also earned Lauren a citation for surpassing the 30-minute parking limit outside my dorm. At this point the math was starting to add up, and my neurologist requested I undergo a “walking EEG” for 3 days. (What every college student wants to wear on campus!) The results showed nothing, but at least we had a mysterious timetable to work from. And, as luck would have it, my next seizure was “scheduled” for spring exam week. You likely won’t have the opportunity to tell a professor, “I’m scheduled to have a seizure tomorrow and I may need to push back my exam,” but mine took it surprisingly well. My parents were in town to monitor me, and the day progressed normally until my “alarm clock” went off that evening. This one happened at the University of Dayton Courtyard Marriott, where the staff was practically family, taking care of my parents and me. We were particularly fond of John and Lorretta on the waitstaff who always brought me hot chocolate. They learned our story and knew that each time my parents were in town was likely a bad sign, but they went above and beyond to keep our chins up. After recovering from this episode, I finished my exams and was done with my freshman year. At this point my neurologist referred me to an epileptologist at Ohio State. Things were about to get serious.
Shortly after getting home from school, Lauren left to study abroad and my seizures began occurring more frequently. The first one occurred in the evening and lasted longer than any of my prior episodes. My parents reached out to Ohio State, and we were told to get an EEG immediately. I slept in the car as we drove from hospital to hospital, unable to find an ER that could perform an EEG. The next morning, we drove directly to Columbus where I entered OSU’s Epilepsy Monitoring Unit (EMU). After 3 days of sleep deprivation, strobe lights, tilt tests, and EEGs, I came out seizure-less and answerless. They said that stress, lack of sleep, and alcohol can all induce seizures – the college student trifecta. At this point, my doctor started me on Keppra and continued to increase the dose as the seizures continued.
That summer provided me with a lot of highs and lows. I could no longer drive, my mattress was on the ground to avoid falls, I slept with baby monitors and later learned my mom often slept on the floor outside my door and I chipped off half of my front tooth after having a seizure in the bathroom and falling into the side of the toilet. (Yes, you read that correctly.) That same summer also provided me with the support system I needed. I began volunteering with our local theater company as they produced Little Women. Many of my high school friends were members of the cast, crew, and pit, and it was the piece of normalcy that I needed. I felt embarrassed anytime my mom would leave me because she would find a trustworthy person and explain what to do if I had a seizure. One day this role was handed to my friend Connor who, without missing a beat said, “Come on Hailey, carpe diem! You know? Seize the day!” It was the laugh that we so desperately needed.
The rest of the summer was spent with my mom and dad. Going swimming wasn’t an option, so we spent our days driving to different parks, taking walks, and swinging at the Waite Elementary playground. I can’t even begin to thank my mom and dad for their love over the last 29 years. Coming out of a seizure is one of the most vulnerable positions you can be in and on many occasions, I awoke to their calm voices holding my hand, ensuring me that we would make it through because, “We’re the Thorns.”
Going into my sophomore year, my seizures weren’t controlled but they were now nocturnal and less aggressive. To my parents’ relief, one of my suitemates was also a member of the student med squad. From day one of my seizures, my mom began what is now known as “The Binder.” It’s a 2-inch green binder containing typed details of every seizure, medication, and doctors’ appointment. I bring up “The Binder” because I often recall freshman year as the hardest point throughout college, but after review, I was reminded about times throughout my sophomore year that were just as trying. As my seizures continued, my doses increased, exceeding the recommended maximum dose for Keppra. My main side effect was drowsiness and, after adding Zoloft to curb depression I was experiencing, I began sleeping nearly 16 hours per day. Doses and medications changed, I became a “functioning” person again and my seizures were beginning to weaken. I will admit that after a rough end to my freshman year, I just wanted to be a “true college student” and should have taken better care of myself sophomore year.
Going into junior year, the seizures had subsided, and I could finally drive again. I ran an Epilepsy Foundation Half Marathon on my 6-month seizure free date, finally regaining a lot of my freedom, until December 21, 2013. But that is a story for another time… Empowering Epilepsy #empoweringepilepsy
Check out Hailey's GoFundMe Page: https://gofund.me/ac41240b