Me

I have been living with Cystic Fibrosis (CF) since I was two years old; I wasn't diagnosed until I was two years old. I guess that's when my whole world changed, but at two years old, my world was still beginning, so I didn't know the difference. In that, I believe that I am fortunate. I never knew what it was like to not get debilitating stomach aches after eating. I never knew what it was like to not have a cold go to my lungs and last for weeks or months. I never knew what it was like to not be treated differently. Using a breathing machine (nebulizer) twice a day, taking enzymes during every meal, having mom and dad rhythmically pound on my back and chest daily (chest pt's), and, most significant of all, people treating me like I was a fragile doll that could break at any moment, that is all I knew of life. That was life. I was a prisoner in Plato's allegorical cave.

I didn't realize that I was different from other kids until my first day of kindergarten; in a sense, I was allowed to venture into the light for the fist time. A teacher walked up to me and told me that it was time to go to the nurse's office to take my medicine. The other kids, being only five years old, didn't understand, which made it necessary for me to make up my own explanation for why I had to leave the lunch room every day and why I couldn't eat snacks during class unless I first went to the nurse.

For several years, I hid who I was and the disease that I carried. I was a pariah; I was a freak, an outcast, but I was only these things in my mind. I wanted desperately to be like every other kid. Eventually, the time came when kids figured things out, and after hiding my identity for nearly eight years, I owed my middle-school friends an explanation. It was an explanation that I had been giving adults for years. My friends did not understand the technical lingo of thickened mucus cells, a scarred pancreas, bacteria in my lungs, and losing too much salt. "It's like asthma but with stomach aches," I repeated to each friend. That explanation held the dogs off for the time being. I knew more questions would follow, but I would deal with that when the time came. For now, I was still normal in their eyes.

As years passed, friends found out that my life expectancy was eighteen years old, outdated information thanks to poor research skills on their part. Girlfriends turned away assuming that a future with me was a future of hospitals and loneliness. Bosses gave me fewer hours, not wanting my overworked body and impending demise on their consciences. Fears that my future was limited raced through my mind. Questions like: why try hard in school if I'll never see a career or even college graduation; why work hard in a relationship if I won't live long enough to raise my own children or even get married; why keep in touch with friends and family if my looming death is only going to cause them heartache; why, why, why?

Today, I am a twenty-nine year old high school English teacher with a Master's degree in literature. I am applying to graduate schools in order to pursue a PhD in composition and rhetoric and best of all, I am getting married to a wonderful woman on September 4, 2011. I have dozens of close friends and family located throughout the country. I don't have to rely on mom and dad; I'm making it on my own, taking care of myself. I am successful. My journey was long and harsh; my journey is not finished.

I am using this blog as an outlet and a source of hope for others who suffer from a chronic illness. Children and adults can benefit from my experiences and enduring hardships. I'm making it. So can you, so can your friends, so can your significant other. Please feel free to share your thoughts and reactions.

~Scott