My Life with Cystic Fibrosis (Tom)
June 5, 2021
My heart was beating rapidly and my lungs were breathing heavily as I made my last turn around the high school track for a mile race. I felt a gasp of relief as I headed straight towards the finish line and I ran with all my might to reach it in a flash. It’s funny to think that a few seconds after the race started, I was one of the trailing runners. Now, about 50 meters from the line, all the runners, save it be two, were trailing behind me. With all my effort exerted, I made it across the line in third place! Despite being in the heat of exhaustion, I could hear my friends cheering for me and I felt so much relief in enduring through a challenging mile race! I went over to my coach to see my time, and I couldn’t believe my eyes. Five minutes and 48 seconds, about two times faster than my mile run time average! Not bad for a guy like me who worked so hard for that event despite having a genetic disease, which might’ve made this race impossible: Cystic Fibrosis.
Many would say that living a life with a genetic disease such as Cystic Fibrosis is not worth living due to its hardships and the obstacles it brings upon a person and his or her family. However, after living my life with CF and dealing with the hardships it brings, I believe living a life even with the disease is still worth living. Despite all the hardships, my parents were able to find ways to treat my two brothers and me with CF. I was able to overcome the limits of my having the disease, and my life makes a difference to others. Sincerely, I do not know what it’s like to be a person without the disease. But with God’s grace, CF doesn’t feel like a major burden in my life.
In the beginning, I was born in a humble home in the city of Orem, Utah. What joy it was to my family when I came into the world, but how sorrowful it was for them when they soon found out that, like my brother before me, I was diagnosed with Cystic Fibrosis. However, that acknowledgement did not stand in the way of the love we have for one another. Miraculously, my parents learned a lot about CF and found a way to help mitigate it even before I came out of my mother’s womb.
A while after my brother, John, was born (three years earlier before me); my mother and father were confused when his weight decreased over time and was experiencing symptoms including a severe deficiency in Vitamin K. After these became acute problems, John had to be hospitalized for a time for his electrolytes to be back in balance. However, after conducting a sweat test and doing his genetic analysis, doctors diagnosed John with Cystic Fibrosis. My parents were shocked, even frightened, when they heard the news. They knew little about the disease and didn’t know ways to treat it except the given medical recommendation of putting him through standard CF care, which has downsides. After much consideration, they decided to not have him go through the standard care. They decided to find a better way for him, with or without help from doctors.
Even though my mother was not a professional medical doctor, she put in effort with her research abilities to search out possible ways to treat Cystic Fibrosis, and eventually found a way. Having been blessed by being a professor and having the skills of one, she spent time gathering sources and articles from doctors and their journals concerning CF treatment. Over time, after researching possible theories of treating the disease, she came across one possibly effective treatment that included the usage of a substance called Glutathione. After that finding, she dived deeper into the research of the usage of the substance, and found a lot of research findings backing up her hypothesis. Meanwhile, my father, who was skilled in art and landscape architecture, put in his own effort to dive deep into the research and helped pave a way for the publication of my mother’s hypothesis of the treatment. He attended conferences of CF researchers both in Europe and North America and presented Mom’s research. Few researchers volunteered to do clinical trials on her hypothesis, but Dr. Clark Bishop and Dr. Alfredo Visca undertook such research. Eventually, the approach has been backed by their trials and the results accepted for publication. With Glutathione and other medications Mom found to treat CF, she was able to better the health conditions of John and her then-future children with CF, including me and my younger brother.
It is sometimes hard to live with the routine of taking my medications and nebulizer treatments and going through occasional symptoms of Cystic Fibrosis, but I never let the fact of my having the disease discourage me from reaching my physical potential. For years during my childhood, I played various sports like baseball, soccer, basketball, and even ice hockey. Even though I didn’t do too well in those kinds of sports, they didn’t exhaust me much more than the ordinary players. Later in my early teen years, I took courage to run around a running track. It usually took me a little more than ten minutes to run a mile when I ran a timed mile for the first time. Over time, after seasons of running around tracks and through neighborhoods, through both hot and cold weather, and both in and out of school, I managed to endure long distance running and even speed up to about seven minutes per mile. Even though it can get really exhausting, I can still breathe easily and have a firm mindset while running, even with CF lungs. Furthermore, nowadays I can do personal exercises almost daily. Thus, after weeks and months of doing workouts at the gym and at home, my body became fit, healthy, and strong. So even with Cystic Fibrosis, I managed to work my way around it and adapt to it to achieve a healthy state of my body.
Furthermore, even with the disease, I live a wonderful life and I hope I help make the lives of others wonderful. Although it is a heavy burden for my parents to cover the treatments for my brothers and me, they love the three of us so dearly that they sacrifice so much for the maintenance of our health and our longer lives. Ever since I was born, I enjoyed making memories with my family. Not only that, but I also live a great life with friends that I have made in every phase of my life. Though some of them know that I have Cystic Fibrosis, they were amazed at how healthy and physically fit I am by working my way around the disease. And they loved me for who I am. And because of my family and friends, I want to be there for them always because I love them. Furthermore, having the knowledge of the Gospel of Jesus Christ made my burdens light even when facing trials in life. I know that through Him, I can do anything, even overcoming the effects of Cystic Fibrosis. With that, I have confidence that I will live a wonderful life and help make the lives of others wonderful.
In conclusion, even though having Cystic Fibrosis can be tough, life is still good. Because of my parents and their willingness to put in their efforts to find a way to treat the disease and sacrifice so much to treat my brothers and me, my brothers and I are still alive and living healthy lives. Because of being proactive in taking care of my body despite the disease, I became healthier and stronger. And because of my family, my friends, and the Gospel, life is wonderful and very worthwhile for me to live. Therefore, I look forward to the future with hope and optimism. Whether there will be a cure found for the disease one day or not, I will live my life to the fullest and even help others have hope. I thank God for the life He has given me and for His help in overcoming my weakness. I am grateful to be alive!