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My Brother with Cystic Fibrosis
I learned what fear was when my older brother was diagnosed with a lung disease called Cystic Fibrosis. We were working at the New York State Fair that week, which meant we were away from home. Everything was so sudden, frantic, and unsettled. No one familiar was in my dorm, I was away from my family, and I cried alone at night. Fear feels like someone switched off the reality switch, and you can only think about the worst, what will happen, not what is happening.
Looking back, the fear my family experienced was unnecessary. It’s funny how things just become routine, normal. Like if they didn’t happen, what would our lives be like? “Did you take your Creon?” we ask him before every meal. “Nasal Rinse?” we ask him when he wakes up, and then again before he goes to bed. The thumping of his percussion in the evening is what tells me dinner will be ready in forty-five minutes.
Cystic Fibrosis affects the lungs and pancreas. My brother has to take Creon because he doesn’t produce enough enzymes to digest food. He has to eat 3000-3500 calories a day because he has trouble gaining and maintaining his weight because of his disease. He has to use a percussion jacket twice a day that thumps against his chest to keep mucous out of his lungs. He inhales salt solutions because he sweats out his bodies’ natural salt. His least favorite is the nasal rinse, which clears his nose of mucous and helps prevent nasal polyps. He does all of this every day, and takes his disease seriously.
My brother is a runner. He is amazing at playing guitar and is learning piano. He is a photographer and picture editor. He knows a lot about electronics, and if our family has a problem with a computer, he’s there to help. He can beat me in arm wrestling and doesn’t mind gloating. My brother is taking college courses as a freshman in high school. This, his life, is unaffected by the fact that he has a disease.
To me, my brother is an inspiration. Despite being young, he is so responsible and mature, and I think sometimes he doesn’t realize that. He has so much going on in his life, and he still has time for his daily brotherly tortures toward me. My brother is someone I can trust and Cystic Fibrosis will never, ever, take that away. A disease is heartbreaking. For my brother, it’s a journey, and he’s getting stronger along the way.
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