One American Childhood

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This paper was originally written for my English Composition 101 course at Harrisburg Area Community College.

Everyone has had some sort of experience that was central to their development; for me, the experience was growing up with Cystic Fibrosis. What my family doctor originally thought was just a cold actually turned out to be something much more serious. Upon consultation with a specialist, my parents were told that I had a genetically inherited disease called "Cystic Fibrosis". I was diagnosed with CF at age four, and my life changed completely. I was immediately admitted to the hospital to receive X-Rays, blood tests, intravenous antibiotics, inhaled bronchodilators, and chest physiotherapy. They placed me in an oxygen tent, separated from the touch of my parents and family by a thick layer of plastic. My mother stayed with me all day and never left until after I was sound asleep. She didn't go home until 1:00 AM. She'd return before 6:00 AM, right before they woke me up for my morning treatments, thinking that I'd never realize that she had gone... The nurses didn't tell her until two weeks later that the therapists had been waking me up for treatments at 2:00 AM every morning. They told her that I had been spending most of the nights crying for her, not falling asleep until right before she arrived in the morning.

At the time, most children with Cystic Fibrosis didn't live much past the age of seven. My grandmother couldn't stand the thought of her first grandchild dying without seeing Disneyworld, so she took me there when I was five. We drove to HIA early in the morning. It was the first time that I ever woke up and was outside before it was light, and it was really strange. The only thing I remember about the flight is that I spent lots of time playing with the overhead lights and vents, and I visited each passenger in a four-seat radius proving to each of them that I could count to 100. I don't really remember too much about Disneyworld, either. Just a few blurry images of pirates, flying elephants, and a movie with Mickey Mouse in it. Even though I don't remember much, I'm sure I had a good time. I think my grandmother probably did, too.

Many years went by, and my condition remained stable. I hadn't had any more hospital stays, and I had no real problems. At one point, my doctor was even confident enough to take me off of all my medication, giving my body a break from the drugs. Except for the occasional coughing and shortness of breath, I was able to do anything that the other kids were able to do.

Then junior high came. The transition to junior high is difficult enough for most kids, but it's especially hard when you notice that the other kids are growing taller, while you are growing thinner. My nutritionist was aware of my concerns, and contacted the school nurse. An arrangement was set up so that I would leave class twice a day, once in the morning and again in the afternoon, to march down to the nurse's office to eat a snack. I literally had to eat four times as much food as the other kids just to maintain my weight, much less gain anything. At first everyone wondered where I was going twice a day, missing classes. I never told them, and I guess they all eventually lost interest.

I never really liked gym class. For many young students, gym class is a time for fun and games, but when I was a child gym class was the part of my day that I dreaded the most. I couldn't keep up with the other kids, and I couldn't play as roughly as they could. I was constantly short of breath, and I'd end up out of the game, waiting by the sidelines, coughing. By the time I was in ninth grade, my doctor decided that gym class was probably doing me more harm, physically and psychologically, than good. He called my guidance counselor to arrange for me to take study hall in place of gym class. That way, I could spend my time more productively, doing research in the library or completing homework assignments. It was this extra free time that gave me the opportunity to learn how to use one of the school's Macintosh computers. My knowledge of the Macintosh eventually paid off, qualifying me for a handsomely-paying part-time computer sales job at my first college; not to mention the fact that knowing how to use a computer efficiently really helps when trying to complete school work.

In college, I haven't had any problems with fitting in. If I hang out with the smokers and the pot heads, no one knows that I'm any different. A lot of them are skinny, and they all cough, too! I just have to remember to carry a lighter with me wherever I go. People assume that since I cough like I do, I must be a smoker!

If anyone asks about my breathing, I could always say that I have asthma. I use the same yellow and orange pocket inhaler that most asthmatics do, so that's not a problem. Other people think that I just have a cold. They never quite catch on that the cold never goes away. If you know what you're doing, it's easy to hide CF, especially in college where the people are less critical of you and don't watch your every move.

I'm 20 years old now. According to the current statistics, I have a 50% chance of living to see 21. My doctor knows that I'm not about to give up, and we're arranging a meeting with the transplant team at the University of Pittsburgh. It's about time to buy a new set of lungs and ditch the ones I have now. They are limiting my ability to have a productive life. If the surgery is successful, I'll be able to leave most of my problems behind. But best of all, I'll be a healthy and happy young man a few years from now, living to see 2047 (statistically).

What I have learned the most from my life-long experience is to keep positive and never give up. Even when a doctor tells you that the outlook is grim, keep pressing on. When things get tough at work or at school, you can see what is really important and take all the problems in stride. I live by these words, and so far, I've been beating the odds.

For more information about Cystic Fibrosis, click here.