Throughout these posts, you’ve probably noticed that Genevieve and I are having fun with all of this hike training. We are meeting new people and discovering leg muscles that we haven’t seen in at least a decade. Genevieve’s knee recovery has also seen great progress.
All of this is a huge win and personal accomplishment for each of us. But that’s not the only thing at core of this event to us. We are hiking with purpose; We are hiking for CF.
The mission of the Cystic Fibrosis Foundation has a special meaning in our family. Meg’s 24 year-old “little” brother (Genevieve’s cousin) is a patient. We asked him to put into words what CF means to him.
Hi, my name is Chase. I’m 24 years old, a consultant at a non-profit organization in Atlanta, a freelance writer, a graduate of Vanderbilt University, a music lover, and someone who enjoys the beach more than just about anything else. In fact, I’ll be in the car headed to Florida in just a few hours. Oh… and I have cystic fibrosis.
There is so much else going on in my life that I rarely delve into the details of my illness. When someone new asks me to talk about myself, the disease doesn’t even cross my mind. Writing about it is a new task for me, and it’s a little uncomfortable. That’s not because I’m embarrassed or private about it, but I just don’t have much practice explaining it. I feel extremely fortunate to say that.
As medical research and practices continue to progress, there are more and more cystic fibrosis patients like me. Today, I believe more people know about cystic fibrosis than ever before, not just from tragedy, but because many CF patients are beginning to flourish in the regular world. Still, it’s really the luck of the draw, considering the incredible complexity of genetics and environmental factors. I vaguely recognize that my health condition could decline suddenly and unexpectedly, and I am very aware that I will begin to experience more severe symptoms as I age.
But for right now, what is cystic fibrosis to me? It’s a burden that consumes a considerable amount of time and energy, not to mention the overwhelming prescription and hospital expenses. It’s something that has forced me to always have my guard up, wary of any health threats.
Cystic fibrosis also means anxiety. Every two to three months, I have a check-up with my fantastic medical team: a pulmonologist, a gastroenterologist, and a respiratory therapist. I keep my calendar marked, and as the appointment approaches, my nerves tighten. How will I do on the pulmonary functions test? What potentially life-threatening bacteria could the doctors find in my lungs? Will I have to go on antibiotics? Will I have to go to the hospital?
Within the past three years, the answer to that last question has become “yes” more often than before. Likewise, the time I spend doing morning, afternoon, and evening breathing treatments with a nebulizer and ThAIRapy Vest continues to increase as my doctors and I work to overcome the growing scar tissue in my lungs from over two decades of chronic bacterial infections. Every year, I have to take more vitamins throughout the day and more digestive enzymes before meals. Altogether, it can become a pretty exhausting equation. Sometimes, it seems like an uphill battle and a terribly unfair and undeserved sentence.
The flip side of the coin is that I’m still getting to experience life as a young adult. After two years of various part time positions, I will be starting full time work in one month. That means I will finally be able to afford a move out of my parents’ house! My next clinic appointment is approaching, but I’m more focused on job preparation and orientation and finding an apartment and a roommate. As I mentioned earlier, I get to go on a vacation with my friends in just a few hours, and while none of them will be waking up to use a nebulizer in the morning or popping six to eight pills before each meal, I won’t miss a single opportunity to have just as much fun as everyone else.
There’s a sweeter side to cystic fibrosis. Somehow, that stress, anxiety, and fatigue become appreciation. Most 24-year-olds I know don’t realize just what a blessing each new day is. I know my life has and will have some terrible health struggles, and my life will probably be cut short by the disease. Somehow, that means that every new opportunity in life – professional, personal, or otherwise – is that much more valuable. It may sound strange, but cystic fibrosis isn’t just a burden. It is also a blessing.
My life and continued health have only been possible through the near-miraculous efforts and successes of the medical community, the Cystic Fibrosis Foundation, and a great deal of hard work and prayer from family, friends, and myself. I will continue to rely on all of that in the future. I love what the Virginia Chapter of the Cystic Fibrosis Foundation has come up with. The Xtreme Hike mirrors the uphill battle I mentioned earlier, but the journey – and its rewards – will definitely be sweet.
Please visit our Fundraising sites and help us reach our goal to raise $5,000 for Cystic Fibrosis! Thank you for your support.