I knew at a very young age that I was different from other kids. I recognized that I missed school much more frequently than anyone else, whether it be for doctor appointments, being sick at home for more than a few days, being sick in the hospital, or needing at-home IVs. I recognized that I was out of breath quicker than other kids playing sports, and I was much smaller.
At home, all of it was normal. The loud vest, the hours of breathing treatments, the pills, the coughing fits -- it was all part of CF life, our life. I didn’t want to be different -- I tried very hard to hide it as much as possible. I wanted to be treated the same as everyone else -- from kids at school, from teammates, from the kids in the neighborhood.
I knew my secret was out when I had at-home IVs for two weeks in the spring of third grade. I mean, how could you miss it?! I had a lumpy sock sleeve pulled up over my arm, and I had to sit out from sports and gym class. It wasn’t the first time I’d had IVs or had to miss sports or gym. I’d been in the hospital several times by that age for more than a week at a time. But it was the first time I had to watch in-person from the sidelines. At 8 years old, I sat on the school steps as my classmates played in gym -- I don’t remember what they were playing, but I remember that I made a decision right then and there. I decided that I wouldn’t miss another gym class because of CF.
I decided I would do whatever treatments, take whatever medicine, do anything I needed to do to not let CF stop me from doing anything I love, anything I want to do in life -- I will do what I need to do, so I can do what I want to do.
There were other times when I couldn’t keep up, couldn’t do what I wanted to do -- when I needed a wheelchair on family vacations to get around the amusement park, when I sat out during sprints in baseball practice because I was already exhausted. There aren’t many examples, but those examples are fuel. Fuel to remember why I must do what I need to do, so that I can do what I want to do.
That decision for myself didn’t mean that all of a sudden, I wanted to do the hours of breathing treatments, take pills with every meal, or go to the doctor every few months (the list goes on) – none of us want to do that. But, I do it anyway. I do it because I want to play sports, I want to take road trips, I want to hang out with friends and family, I want to grow old with my wife, and I want to live. And I want to feel good and feel strong while I live. I have a responsibility to my younger self to do my treatments, take my pills, exercise, eat healthy, and sleep. And, I know I’ll feel a hell of a lot better physically if I do those things, than if I don’t.
Don’t get me wrong, I’ve had my share of slip-ups along the way -- didn’t do my treatments, didn’t take my pills, ate bad food, didn’t exercise -- all while running on little sleep. Do that long enough, and even non-CFers would feel like crap. For me those slip-ups lead to a collapsed lung, pneumonia, fungal and bacterial infections, bronchoscopy, and massive bleeds. This CF rollercoaster ultimately affected my ability to physically do the things I wanted to do.
I’ve had to ask myself many times if what I was doing was working. In the midst of a slip up, clearly the answer is no. It took brutal honesty for me to assess my choices and behavior and realize that my behavior caused my ride on the CF rollercoaster, and that it’s my responsibility to fix it. Years of “forgetting” to do my treatments or take my pills was a lie to myself -- I didn’t forget. I knew I had to do my treatments and take my pills. I made a choice not to. I had a ton of help and guidance along the way, but it’s not my doctors’ or my parents’ or anyone else’s fault that I didn’t do what I needed to do. I suffered the consequences of my actions and inaction.
The slip-ups -- every one of them -- were the wake-up calls I needed to get off the CF rollercoaster and onto a healthy, sustainable CF path. A wake-up call was what I needed to exercise consistency and discipline in my daily regimen. As someone with a chronic illness, the pursuit of health requires more of me. If I want to be physically capable to complete triathlons or go on walks with my wife -- and everything in between -- I need to train my body and lungs to do those things. I must do what I need to do, so I can do what I want to do.
Enter exercise -- what a magical treatment for CF. Although I had been active in organized and unorganized sports since grade school, my realization of the value of exercise for CF came in high school. I was at a friend’s house and I laughed at something and for the first time that I could remember, I didn’t have a coughing fit in the middle of laughing. I remember realizing in that moment that the only thing unique about my regimen and schedule at the time is that I was in the middle of wrestling season. This meant six days of exercise per week for three to four months. In that moment, I laughed and took deep breaths uninhibited. Sure, it may have been a fluke, but it wouldn’t have happened without the addition of exercise.
After wrestling ended that year, I continued to exercise on my own. I found it hard to motivate myself to exercise in adulthood without the competition of organized sports. In 2012 I signed up for my first sprint triathlon and learned to love the mental and physical challenge of endurance sports.
Now, I can’t talk exercise, and not talk about pulmonary function tests (PFTs). Ever since I was a kid, I’ve wanted to beat my PFTs from my last appointment -- and why not, it meant my lungs were getting healthier. It wasn’t until I was an adult that I came to the realization that if I want my PFTs to improve, then I need to do activity that simulates that kind of breathing. For me, endurance sports fit the bill perfectly.
I’m not saying everyone needs to do triathlons as their exercise, but I am saying that our bodies are very resilient, even those of us with CF bodies. And over time, our body responds to the demands put on it.
If you train (demand) your body to do triathlons, your endurance and strength will improve. If you sit around most of the day and do that for days or weeks or months, then your body won’t be very strong, and you’ll probably get tired with minimal activity. Set a physical goal, and train for it. If you want to do endurance sports, then do it. If you want to be able to walk down the block without getting tired, then do it. We all have to start somewhere, and it begins with the proverbial first step. Do it for yourself. Do it for your future.
My approach to CF might not work for everyone. But I know this -- it’s up to you to figure out the right approach for yourself, or your child. It’s up to you to be brutally honest with yourself about what works, and what doesn’t work. You might have slip-ups, and that’s OK. It’s up to you to not let slip-ups become a way of life. If you need help, seek it. We CFers are just as capable of doing and overcoming difficult things as anybody else. Your health is your responsibility and no one else’s. It’s up to you to do your treatments, take your pills, eat healthy food, sleep, and exercise -- no matter how much help we get along the way, no one can do those things for you. Do the things you know you need to do, so you can do the things you want to do. Do them like your life depends on them, because it does.