How to Find Hope

Recently, a colleague approached me and said, "Do you mind if I ask you something personal?"

"Not at all," I replied with a puzzled tone.

"Well, a friend of mine just adopted a two-year-old boy with Cystic Fibrosis. What sort of things does she have to look forward to, and what kind of things should she be doing?"

Hours of conversation and years of experiences flashed through my mind, but I knew why my colleague was asking me this question, and I knew what answers she needed to hear. I could have said that there may be bouts of hospitalization. I could have said that there will be times when all she can do is cry. I could have said that there will be hours of insurance calls. But I didn't. Those are things that come with the territory of any illness that must be "dealt" with. What this friend of a young parent needed was hope.

"There are plenty of things she can do now to ensure a happy child down the road," I replied. Here are some of my suggestions:

1. For the sanity of the family and the future relationships of the child, develop some networks of people in the same situation. Link them to this blog, visit any of the numerous websites I have listed at the bottom of the page, while in the waiting room, make friends with parents of CF children, and get involved with a local foundation. It's really nice to talk to parents who have been through everything already. Raising a CF child on your own is a monumental task that can take its toll on any family. I realize that doctors advise against CF patients mingling, but you cannot exchange colds and bacteria through the cell phone or the Web.
2. Get your child involved with sports and activities. Since the lungs are one of the most important organs for a person with CF, it is vital that they get a ton of exercise from their early years and on. Teach the child that exercise is important for everyone, but necessary for their survival. If you instill this at a young age, you will be less likely to have a resistant couch potato years down the road.
3. From being involved with sports and activities, children develop camaraderie and confidence, which is a key element in teenage survival. Parents want to be protective of their frail child; I understand this, but don't prevent a child from enjoying life because you are afraid that they might get hurt or break. I wish my mom and dad would have let me play football, but they thought that I was too small, so I played baseball instead. Not that I didn't love baseball, but most of my friends were playing peewee football and that created some dissonance between us.
4. Teach your child that they are different. Don't allow them to feel ashamed, but do not force them into the spotlight. Allow the child to develop a confidence about their disorder at their own pace. I didn't want people to know about my CF until I was fifteen years old. While in restaurants, Mom would slyly slide me my enzymes to avoid any curious onlookers. She had the best intentions, but that made it more difficult for me to nonchalantly take my pills when Mom wasn't around.
5. Finally, do not treat your child like they could keel over at any moment. Kids pick up on that type of behavior and begin to live like that. Don't be afraid to encourage and at times push your CF child. Many times I wanted to quit sports because coaches treated me differently, but Mom and Dad would not allow that to happen. I am a better and healthier person today because of their stoic motivation.

"Could I get your contact information and give it to her? I think she would really benefit from talking to someone who is doing so well with Cystic Fibrosis."

"You got a pen?"

~Scott

Being Different Is a Gift

Zenpep's Website

I am often asked what it's like taking a handful of pills (pancreatic enzymes) while in public. "How do you deal with all the stares and smirks?" people ask. At first, I was embarrassed. When I was younger, I would manage to sneak away from a group of friends so that I could take my pills, or I would just not take my pills and deal with the horrendous stomach ache in a few hours when I got home. I was always afraid of being viewed as different because as an adolescent, different is bad. Now that I am an adult, I am still wary of people watching me take fifteen pills with a single swig of soda, and I wonder what they are thinking...drug addict...poor, dying man...contagious...unfortunate. I am none of those things. I am different. That is good, and I'm about to tell you why.

Living with a conscious knowledge that people are watching you and judging is a terrible and frustrating way to live. I made the decision, early in life, that I liked who I was and the hand I was dealt. Sometime around eighth or ninth grade, I stopped hiding my disease and making up lies about it and started accepting Cystic Fibrosis as a way of life. This was a shock to the people who thought they knew me best. "You take what every time you eat? What is a nebulizer? So that's why you miss school once in a while? Thickened mucus cells...eww." I received a lot of attention when I came out of the darkness. I began to prefer attention over secrecy. At my high school, I became the resident expert on diseases and the star of many a research paper.

People did not view me as "the sick kid;" people viewed me as the kid who is a little bit different. I learned that different is only bad if you hide and deny your differences. If you celebrate your differences, everyone involved becomes educated and closer to you. Now, I never miss an opportunity to explain my disorder and its perils. Today, every one of my students has an in-depth knowledge of Cystic Fibrosis. They do not view their teacher as weak or weird; they view their teacher as a human being, a role model, who accepts challenges instead of running from them.

A student approaches: "Mr. Gibbons, I made brownies in foods lab today; do you have pills with you, or should I put this in some tupperware so you can take it home?"

From the back of the room, a different student shouts, "Hey Mr. G., if you have pills, you can take a drink of my water since you drank all of your Dr. Pepper."

Does that sound like an individual viewed as a contagious freak? If so, then that's perfectly fine with me. I used to not want to be treated differently because I was afraid of what others would think. Now, I want people to ask questions, and the ones who don't, well, it's their loss.

Embrace what you have been given. Cystic Fibrosis has shaped who I am, and I would not trade this disease to be "healthy." Healthy is a funny word; doctors use that word as a gauge for happiness and sadness. If they say that I am healthy, then my family is happy and I should be too. If they say I'm unhealthy, then everyone is concerned and I become a patient. Whether I'm using antibiotics for my recent lung infection or I'm sprinting down the basketball court without a single cough, I am happy. I am happy because I was born with a disease, and I learned that even though I can't always control my health, I refuse to allow this little, life-threatening, genetic disorder control me.

~Scott

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