Chris cycled with us on the 3rd annual Gear up 4 CF ride from Vancouver to Jasper (1318km) in 10 days. Chris is an incredibly talented athlete who is living with Cystic Fibrosis. Chris is 28 years old, married and starting law school this fall.
Q) Why was Gear Up 4 CF important to you?
GearUp was important to me because it represents another year of focusing on maximizing my health. GearUp
was about preparing myself physically and being healthy enough to complete the ride. As for many of us, doing so took me almost an entire year.
I fight CF by setting goals that necessitate adherence to my treatment. Completing GearUp was one of those goals. I would not be able to bike up Rogers Pass, never mind going to law school or being a good husband if I did not do my physical therapy, nebulized treatments, and other medications.
Q) What role does athletics play in your daily life and management with CF?
The role of athletics has changed for me over the last ten years.
Running cross country and track in high school and college introduced me to setting personal goals-short term and long term. When I was younger, and racing competitively, I use to think that race day was the measure of success and if the goal was not achieved then the season was a failure.
Gradually, I learned that the process of setting goals (re: athletic pursuits) is more important than the actual outcome. Now I believe that the prize is the preparation and the training. The event/race is a celebration of taking care of myself and of successfully living with CF.
While the “big” stuff like being able to support my family, is of the highest importance, there is something about athletic goals that are particularly synergistic for me. The physical activity required to achieve them is of huge benefit to my lung health. Physical activity also helps me handle the low level stress that comes with living with a chronic disease. The payoff is instantaneous. There is nothing like completing a 100 mile training ride to show myself I am beating CF.
Q)What advice would you give to people with CF?
My advice to people with CF, particularly teens and young adults, would be to figure out what it is you want. What are your dreams? What do you want out of your life? The next piece of advice would be to ask yourself what its going to take to make it happen, make the plan, and do it. If you are working towards something, be it going to college and graduating, working full time, or biking the rockies, the time it takes every day to take care of yourself becomes a small price to pay.
This has to be a personal decision… I don’t think anyone other than the person with CF can decide that they are going to make the most out of what they have. This is particularly true for people with CF who struggle with adhering to their treatment routines.
Q) How did you come to realize the above?
It wasn’t a lightening bolt or anything like that. I came to realize that everyone is faced with challenges in their lives that are unpleasant to deal with, and I don’t think I’m all that unique. CF happens to be my challenge, and I’m going to deal with it. I’m not going to waste my time comparing my case of CF to what other people have to deal with, and I’m not going to feel badly for myself or expect others to feel badly for me. I’m going to get on with it.
Living with a potentially life shortening disease has also made me very purposeful in general, and I try very hard to figure out what I really want to achieve and what is really important to me, and act accordingly.
Q) Did you have a certain period in your life where you were frustrated and how did you handle it?
No, frustrated would be the wrong word. But dealing with CF is a learning process, and I wasn’t always as good at it as I am now. Through high school and college I didn’t really think about living with CF that much. I cared about running as fast as possible, and took my medications religiously to further that goal. I wasn’t very purposeful, it was just an acceptance of this is what I have to do every day, so I do it.
After college ended, the lack of the running team to get me out of the door, my move to Washington DC, and grad school all resulted in me exercising a lot less. I continued to do my treatments, but my lung function started declining slowly. It took a long time for me to accept that I was getting sicker, and that I had to change my attitude towards my self-care. My goal towards CF growing up had been to stay out of the hospital. I would do anything to avoid going in for IV treatments, and resisted them for years. It wasn’t until I couldn’t make it up three flights of stairs, and my lung function had dropped precipitously that I finally had my first IV “cleanout”.
Miraculously, I recovered virtually all of my lung function. I could feel the change immediately. Until that moment, I hadn’t realized how sick I had been (you can get very used to feeling bad). I feel like I was incredibly lucky, and felt like a fool for risking my health for so long. This caused a major self re-evaluation. My first goal became to maximize my health, realizing that ivs are a tool to be used to further that goal. I also recommitted to exercise, in part because I now felt well enough to do the things I loved doing. I have promised myself that I won’t let that ability slip away again.
Q) What would you advise parents who have a child with CF?
Don’t use CF as a crutch or excuse to keep your child from doing anything. Particularly if your child with CF is otherwise healthy or close to healthy, CF is not a reason not to do anything. Don’t let child think that they can’t do something because of CF.
I was raised believing I could do anything. CF was presented to me as my “normal.” If I wanted to go out and do xyz, I had to do my treatments. It takes a certain amount of ego to believe that you can beat CF and live a very full life with it, and that was encouraged.
Q) What do you think of the new treatments and research for CF?
There are some very exciting things going on in the research and drug development world. However, I don’t keep too close an eye on them… I am not expecting a silver bullet to come and cure CF any time soon, if ever. It is too difficult to pin all your hopes on a certain drug or certain timeline, only to find out that it doesn’t work. I have benefited greatly from CF drug development, and look forward to more treatments, but I focus on maintaining my lung function as much as possible with the tools I have, so that if/when something comes along I will be left with as much lung function as possible. And if that something never happens, I would have done well maximizing my health anyway.
I don’t understand the people who think that a “cure” is coming so they don’t have to take care of themselves right now.
Q) What is your next athletic goal?
In the short term, I would like to maintain my bike fitness through the fall by joining the UB cycling team (though I do not plan on racing), and finding a local Rochester NY club very soon after we move at the end of July.
In the longer term, I am planning to do another half-ironman triathlon next summer. I am also planning on doing next year’s lake placid loppet cross country ski race (though will only do the 25K version, and leave the 50k to my brother).
We wish you much luck Chris in your move and half-ironman!
