For March, I asked my sister Lauren to write about how epilepsy has affected her life. I was blessed to have her by my side during my first two years at University of Dayton. Thank you for your continued support & donations!
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When I first heard that Hailey was planning on attending college at University of Dayton, I was floored. In my first two years at Dayton, UD had become like a second home to me — and having her there with me would only make it that much better. I wanted to make sure Dayton felt like her home away from home, too, so we always made time to have dinner together on campus or at Buffalo Wild Wings (plus attend the occasional party or two). I loved having her around, and it was comforting to know that the other was always close by whenever a bad day came along. However, that sense of calm was in for a rude awakening.
The day after the Super Bowl, I received a phone call from an unknown number. I didn’t answer, but a couple minutes later, a voicemail appeared. “Hi, this is Theresa from Miami Valley Hospital, I’m calling about your sister Hailey. She’s here at the hospital, and she’s very upset. It appears that she had a seizure in class. We’re running some labs and tests right now, but she really wants you here. We’ve tried to reach your parents, but weren’t able to. Please call the nurses’ station in the ER as soon as possible and ask for Theresa. Thank you.”
I burst into tears before the message was even over. A seizure? My sister? I ran into my kitchen sobbing, telling my roommate that I needed to drive to the hospital ASAP. She tried to calm me down, but I wouldn’t listen. All I knew was that Hailey was alone at the hospital being poked and prodded, and our parents were 3 hours away. She insisted on driving me, which was good because we encountered every possible roadblock and detour on Brown Street. Once I made it to the hospital and through security, I searched for Hailey’s room and rounded a corner to see her lying in a bed, mascara running down her face, hooked up to countless humming machines.
Check out Hailey's GoFundMe Page: https://gofund.me/ac41240b
“Hi,” was all I could choke out as I made my way to the chair beside her bed. She couldn’t even say anything through her tears. We hugged each other for what seemed like forever, and once we calmed ourselves, the nurse came to tell us what happened. Hailey had a grand mal seizure in her math class. She had undergone some testing, but each test came back normal. All I wanted to know was when I could take her home. “As soon as her blood sugar is back to normal, and after we have a consult with the neurologist on call. Have you reached your parents yet?” “No,” I solemnly replied. It was unusual that both of my parents weren’t answering their cell phones, and this only added to my panic. Not long after, my mom finally returned my nine calls.
“What’s going on? Something big must have happened with all these calls,” she said with an uplifting glint in her voice, as if she thought something exciting had happened. “Mom,” I choked, “Hailey had a seizure, we’re at the hospital.” The tone instantly changed. “What? No.” All positivity drained from my mom’s voice as she relayed what had happened to my dad. They left within 20 minutes of hearing the news, and another two hours after that Hailey was discharged from the hospital. My roommate and I set her up on the couch at my apartment, and I sat across from her, watching her unceasingly in case she had another seizure. But none came. After my parents finally arrived, we were a sad sight to see — each of us crying and desperately trying to grasp what was happening to her.
A lot changed after that. Her seizures returned every month and then more frequently. Any time I received a call from a number I didn’t know, I expected it to be the hospital or rescue squad letting me know that Hailey had another episode. One time, after she had a seizure in her room, I skipped class and drove to her dorm to ride with her in the ambulance to the hospital, only to come back hours later to a parking ticket that would take weeks to overturn. As months went on, we found some answers, but also more questions. The doctors kept upping her medications, saying that if she made it 6 months seizure-free, we might be in the clear. I always tried to put on a brave face when she had a seizure, but more often than not, I was a mess. As my parents held her in place, I would just cry knowing that each one reset her to zero, setting her even further back from the elusive 6-month mark.
It was important to be strong for her, but it could also be exhausting. I often had to drop everything to run to her side, and as much as I’d like to deny it, there were times when resentment began to creep in. Her seizures punctuated my college experience, from the three days of straight seizures she had just as I left to study abroad in London to the seizure she had on my graduation day as we packed up our house on Kiefaber. Yet every time another seizure struck, the frustration and resentment faded away, especially when her friends, roommates and classmates just didn’t understand. She could no longer drive and each seizure wiped her energy for days, as well as memories that she could never recover. One night, Hailey and I went out to dinner at Ladder 11 with my roommate, and as we reminisced about our recent trip to Disney, she suddenly burst into tears, unable to remember the funny stories or fond memories we were sharing.
Throughout all of this, I struggled with some health issues of my own. I had severe insomnia at the start of my senior year and started experiencing jarring disruptions to my field of vision. They would suddenly appear and disappear, leaving me alarmed and with my heart racing. They continued for months, resurfacing anywhere from a couple times a week to several times a day. I felt as though I was losing my mind, and whenever I tried to describe these episodes to anyone else, it sounded like I had. After mentioning them to a nurse, she said it sounded like these too could be seizures.
I was shocked. What were the chances of Hailey and I both developing two different forms of seizures months apart? After seeing Hailey’s epileptologist, he confirmed that these were simple partial seizures where I remained conscious and aware of my surroundings, but experienced changes to my vision. I started a seizure medication and the episodes slowly subsided. I considered myself lucky that my seizures were under control so quickly, but I also felt guilty that my much milder seizures were controlled while Hailey’s were not.
Despite the helplessness and fear that we all felt throughout Hailey’s ordeal, I have no doubt that our family is stronger and closer because of it. We were willing to do anything for her. After years of medication changes, insurance nightmares and frustrating setbacks, we’ve come out on the other side full of gratitude that she’s now celebrating 10 years healthy and seizure-free — something that at one point seemed impossible.
Empowering Epilepsy #empoweringepilepsy
Check out Hailey's GoFundMe Page: https://gofund.me/ac41240b
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