Joseph A. Terbrack ALS Memorial Scholarship

When I was just four years old, my father passed away from ALS. At that age, I didn’t fully understand what ALS was, only that it was something serious. Something that was taking my dad away from me. I didn’t know how to cope with the magnitude of that loss, and the grief quickly turned into anger, confusion, and pain. I started acting out in any way I could, whether it was at school, on the bus, or at home. I was constantly getting sent to the principal’s office or written up for misbehavior. What I really wanted and what I really needed was for someone to understand that I was hurting and lost. Most of the kids around me didn’t understand. How could they? But some of my teachers did. They knew what I was going through, and they did their best to help me. Still, sympathy only goes so far, and as I got older, the expectation to “control myself” grew. So I did what I had to do; I adapted. I started learning how to recognize my emotions before they controlled me. I learned how to communicate what I was feeling instead of lashing out. I started understanding that the world wasn’t going to adjust for me so I had to adjust to it. That was one of the hardest lessons I’ve ever learned: life isn’t fair. No one is going to swoop in and save you. That realization forced me to grow up quickly, much faster than any child should have to. I had to become my own guide through a confusing and often painful world. Even now, I miss my dad every single day. There’s nothing I wouldn’t give to change the outcome of his diagnosis. But the truth is, his passing shaped me into the person I am today. If he were still here, I’m sure he’d expect me to have values like strength, responsibility, and compassion but I know they wouldn’t be so deeply embedded in me without this loss. Losing my father at such a young age gave me a high tolerance for emotional pain. Nothing I’ve experienced since has compared to the moment I came home from school and heard my mom crying at the kitchen table. I didn’t have to ask what had happened, I just knew. I felt it deep in my chest. That moment will never leave me. Growing up without a father also meant learning how to be independent. It meant figuring things out on my own, especially as I entered my teenage years and began facing challenges I wished I could ask him about. I also learned discipline early on. Helping my mom take care of the house, doing dishes and laundry so she could have just a moment to herself. These life lessons came from trauma, but they gave me purpose. I’ve learned how to care more deeply, how to be empathetic, and how to appreciate the fleeting moments we have with the people we love. Moving forward, I want to help others who are grieving or facing something similar. I want to be a source of strength and comfort for kids who feel alone, like I once did. Whether it’s through volunteering, advocacy, or simply being someone others can talk to. More than anything, I want to honor my father’s memory by making a difference in the lives of others.

The greatest challenge I have ever faced began in October of 2018 when my father arrived home from work and told me that he had been diagnosed with ALS. From then on, my life was forever changed. The four years that my father was sick affected me in numerous ways and taught me several things that have helped me grow into the person I am today. My father’s illness affected my life in several ways. First, it put me in charge of new and difficult tasks. While in the first few months my father was able to maintain a somewhat normal life, he eventually lost control of his limbs and was confined to a hospital bed in our living room. As his caretakers, my mother and I had to bathe him, take him to the bathroom, monitor his oxygen mask, and hand-feed him. These tasks grew increasingly difficult as my father’s sickness worsened, and there were several times when I had to care for him entirely on my own. In addition to these new and sometimes frightening tasks, ALS also affected my ability to connect with the outside world. We couldn’t go far in the fear that my father would need help in our absence. When we did manage to leave, I found myself dreading what my father’s condition would be when we came back home. It was a period of relentless work and anxiety for my family, but not everything was negative. While living with an ALS patient was terrifying, it did teach me some important lessons. Through my experience with ALS, I learned how to solve problems using a calm, rational approach. For example, early on in his illness, my father fell and hit his head. Unable to breathe or get up on his own, he frantically called for help. By remaining calm, we were able to lift my father to safety, while also ensuring that he was breathing properly. Living with ALS also taught me how to handle change. Each new stage of my father’s illness required my family to create new systems to care for him. While this caused frustration and anger at first, we eventually became accustomed to adjusting our lives. Communication became essential, and we often came together as a family to discuss possible changes that would be occurring in the future. There were times when we felt afraid and unsure, but it was during those times that I learned how to overcome my fears and trust that, with hard work and determination, my family could make it through any trial we faced. Living with an ALS patient taught me many things that have helped me to mature into a young woman. While there were times of sadness and difficulty, I was able to work through them with my family at my side. Two weeks after my father died I had a dream about him. In the dream I was nine years old again, standing on stage at my very first dance competition. When I looked out into the crowd, I saw my father. He lifted his arms and shouted: “I am proud of you!” Because of my struggles with ALS, I have hope for a brighter future- not only to make myself proud, but also to make my father proud. I want to earn a degree in history so that I can educate others about the history of diseases such as ALS. I hope that by educating others about the past, we will be able to improve upon the future, and hopefully find a cure for this terrible disease.

Saying my family background affects the way I see the world is a huge understatement. You see, my father was diagnosed with ALS 7.5 years ago. My dad has always been the one person on Earth I am closest to. When I was younger, he tried shielding me from how sick he was and how sick he would become. In our society, where technology is so readily available, it did not take long for me to discover the average lifespan for someone with ALS is 2-5 years. I do not think most kids have to live knowing their father will likely not be there when the graduate from high school. We start thinking about our wedding day as little girls. Unlike my peers though, I in high school often thought about how my dad would not be there to walk me down the isle. In addition to looking to the future, I have had to deal with the present. My dad is the most outgoing and athletic man I have ever known. Thanks to his influence, I am a runner. We actually used to run together almost every day. Ove time though, he has lost the ability to speak, use his arms and hands, dress himself, feed himself, sleep without assistance from a breathing machine, or walk without fear of falling and hitting his head. So yes, my family background has definitely affected the way I see the world. It has at times made me angry and sad. I am ashamed to have at times hoped and prayed for a normal life. While I try helping him with feedings, getting dressed, and other things he needs, the truth of the matter though is that he helps me more than I help him. He has done that by somehow always staying positive and demonstrating a strong faith in God. He has taught me life can be cruel and does not always work out like you planned, but you have to focus on and celebrate the blessings in your life rather than allowing yourself to be drowned by the negative things experienced in life. If I am ever blessed to have a son, there is little doubt he will share my father’s name of David. Despite the cards life deals me, I hope to have a similar perspective on life and hope to teach him how to navigate it much the way my dad taught me. In regards to how I plan to make a difference in my field of study, I plan on majoring in Biological Sciences before moving on to study Physical Therapy at MUSC. My dad’s influence of physical activity and sport certainly plays a role in what I plan to do. More so though is the indirect influence of watching his body decline. I saw how much physical therapy helped him and want to myself help once strong / healthy people regain some mobility, pride, and quality of life. While I do not ever think I can match my father’s mental strength, he can live on through me as I work to make a difference in the world.