Meet the 2024 Scholars

"Describe a defining moment in your journey with CF that sparked personal growth or resilience. How did this experience affect you and what did you learn from this moment?"

I was very young when I realized the weight that certain words could carry. I distinctly remember going to the school nurse before lunch one day in elementary school to get some of my medications before eating. As I walked there, one of my classmates walked past me and asked why I always went to the nurse before I ate, to which I simply replied "I have a genetic disease and I need to get my meds." The kid quickly moved in the opposite direction, loudly proclaiming that I had a disease and he did not want to catch it. We couldn't have been older than eight, so the miscommunication was understandable, but that was when I first learned that CF had power over others. I knew, even at that age, that I was healthy and that my diagnosis was just a small part of who I was. The people around me, however, learned about it and suddenly that was all they saw in me, and that never felt right. Prior to this moment, Cystic Fibrosis was undoubtedly a big part of my life. I had to do daily medications and I was closer with my doctors at that age than most grown adults will ever be. These were all important aspects of who I was, but it was never my defining characteristic. After that day walking to the nurse's office in second grade, I knew the impact that came with Cystic Fibrosis. Even if that kid had run away from me out of a childish misunderstanding, I knew I needed to prove to others that I was not just the CF girl. This did not mean I needed to hide that part of myself because it is so crucial to my identity, but I also needed to show everyone what other terms I use to define who I am. As I got older, I became more aware of how my disease would affect others. I remember the first sleepovers where I would have to prepare my friend for the sight of me breathing into a nebulizer. At first, it felt awkward to navigate explaining CF to my friends. Part of me braced for the same reaction I had faced in elementary school every time. Time went on, however, and I became more and more comfortable speaking openly about my diagnosis. Even to this day, I feel a small amount of fear that someone will have a big reaction to this part of my life that is so normal in my mind. Despite this, I have begun to find joy in the fact that I can educate others about Cystic Fibrosis and my personal experience. I have come to love the moments when I can explain away people's fears about my health and show them that CF is just one small part of who I am.