Siblings with Epilepsy
Benjamin and I during my Freshman year of college.
Early Beginnings:I was always my mom's fragile child. Ben was born at 8 pounds 14 ounces and was a healthy baby. I was 5 pounds 4 ounces, and required more attention. I broke my wrist a four, needed surgery for my sinuses at six, was diagnosed with childhood asthma at 8 and was always tired, sick, or getting over being sick. I was always underweight, fragile and iron deficient. My brother was healthy, strong and active. However, things seemed to turn a corner and settle down when I started school. I was healthy, playing soccer and thriving. So it felt like a major backslide when I started to have health issues in sixth grade. I was having petite photosensitive seizures every time I walked outside, saw light reflecting off the title in class, or saw the sun reflecting off the water. My eyes would flutter rapidly, and I would become temporarily disoriented. However, because we did grow up in such a small town, it took doctors almost a year to find out what was actually happening. By that time, I had been ridiculed by other kids and my mom had moved me to a different school with the hope of putting this behind us. The summer before I started sixth grade, I was put on medication and my seizures controlled. While the original medication they put me on caused me to be tired all the time, things were going well.
My sophomore year of high school I had my first grand mal seizure. I spent a day in the hospital, and then a few days at home recovering, and they switched my medication. This medication did not make me tired, but it made me not hungry. I lost weight, but that wasn't an unmanageable side effect. “If I hadn't lost my hearing, I wouldn't be where I am now. It forced me to maximize my own potential. I have to be better than the average person to succeed.” |
A Quick Introduction:My brother Benjamin Michael and I are twenty months apart. We've always been a year apart in school and each other's best friend, fiercest protectors, strictest competition and all-knowing confidant. We played sports together in high school, competed on the same Odyssey of the Mind and Mock Trial team, went to the same youth group, and had a lot of the same friends. We grew up in a small town where you didn't have to lock your doors at night, the neighbors knew your name, and families spent Sunday evenings watching T.V., eating dinner, and playing games after church. To date, Benjamin and I still have very similar mind sets about family bonds, congeniality, and morality. We live together, go to school together and do martial arts for no other reason then we grew up knowing how to depend on each other and trust each other. However, we also understand the need to have lives separate of each other, and we both spend significant time apart. But all that aside, we grew up close and I consider it one of the biggest blessings in my life on a daily basis. Honestly, I don't know how I would of survived, well life, without this guy.
Benjamin, I and our mom in 1999
College:The medicine worked well and I started college shortly after graduation. I worked a full time job, went to school, did homework, spent time with my boyfriend and did martial arts. I was busy and didn't register a change until my mom said something.
I went home in August of 2011 right before the semester was set to start. I had been tired and run down lately, and hadn't pay much attention to anything being different. One day I was in my room getting dressed and my mom called me from the kitchen, less than 50 ft away. The door was open, and the T.V. was on low, but I didn't respond. At first, my mom thought I was being a brat and ignoring her. For the remainder of my stay, situations like that continued to happen. My mom finally realized I wasn't ignoring her...I couldn't hear her. 
I was diagnosed with a sensorineural hearing loss, which meant the cilia (hair nerves) in my ear was irreversibly damaged.
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More Doctors, Less Answers:
By the time I went to the doctor later that month, I received shocking news. It was't temporary. It was permanent and degenerative. I had a hearing loss of 35 decibels. Simply put, I could no longer hear whispers. I could no longer hear soft noises or high pitch whistles. I was devastated. In a years time, I had lost 60 decibels of my hearing.Conversations, television shows, foot steps, birds singing and many other things were gone. I began to rely on speech reading, hearing aids, sign language, my residual hearing, and quite frankly, a lot of guessing.
Finally, the doctors had a reason. The medicine they had given me to keep me from having seizures, had built an auto-toxicity in my body, attacking my audio nerve. The audio nerve is located in the inner ear and transmits sound to the brain for it to interpret as sound. Mine was shot. The ultimatum came to this: Do I switch my medication and risk a seizure, or do I stay on my medication and lose more of my hearing. In the end, I switched medication and managed not to have a seizure. Since then, my hearing has level out, but it will never repair. I will forever have a hearing loss.
Finally, the doctors had a reason. The medicine they had given me to keep me from having seizures, had built an auto-toxicity in my body, attacking my audio nerve. The audio nerve is located in the inner ear and transmits sound to the brain for it to interpret as sound. Mine was shot. The ultimatum came to this: Do I switch my medication and risk a seizure, or do I stay on my medication and lose more of my hearing. In the end, I switched medication and managed not to have a seizure. Since then, my hearing has level out, but it will never repair. I will forever have a hearing loss.
Benjamin Michael after his most recent seizure. He broke his nose, lost his front teeth, split his lip, sliced open his head, and had to be hospitalized in a week.
Life Now.I'd be lying if I said life was the same. My brother has a good attitude and is determined to live his life as if everything is okay. He spends a lot of time with the family, his girlfriend, and involved in other activities. For now, he's had to give up martial arts, but he says he'll be back as soon as possible so we can get our black belts together. For me, it's harder. He is my best friend, and I would be lying to say that I'm not worried a lot of the time. If he doesn't answer the phone, I immediately think he's had a seizure and hurt. When I get calls from my mom, or his girlfriend, I am terrified that I am being told to go to the hospital because Ben's there again. I play the what if game a lot too. What if they don't find an answer? What if he loses his hearing because of his medicine? What if, what if, what if. But if nothing else, I've learned how close my brother and I are, and how close our family is. I've learned that there is nothing that can't be over come with love.
Currently, we are looking to taking Benjamin to the Mayo Clinic or Barrow Institute. The idea is a more specialized hospital may have an answer. Benjamin and I have also been entered into a study for siblings with seizures. Hopefully, what doctors can learn from us, will help others. But no matter, what happens, we will keep looking for answers. After all, family never gives up.
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And now for Benjamin...Enter 2013. My hearing loss has leveled out and I have accepted it and made accommodations. Life seem to be settling down and returning to the normal rhythm Then on March 21, my brother had a grand mal seizure. He gave himself a concussion, and began to throw up. Because he was so heavy and awkward, I couldn't roll him on his side and he stopped breathing. By the time the paramedics showed up, he was blue. They transported him to Saint Joseph's hospital, and after some testing and observations allowed me to take him home. It was just a fluke, afterall.
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