What does it mean to have Cystic Fibrosis? I can tell you from a medical standpoint that it means you’re sick. You have sticky mucus that gets infected and sometimes suffocates you. It causes you to be malnourished and underweight. It will most likely be your cause of death, if you make it long enough. I can also tell you from a patient stance that it makes you a warrior. It pushes you to fight for your life when everyone else around you doesn’t have to. It makes your life more difficult but provides strength in your life that only you will understand. My life with CF makes me tough: just like everyone else who is graced with this vicious disease.
People like to comment on my positive attitude more than anything else and I don’t think that’s a coincidence. Now to counteract that statement, I do continually put myself down with this disease; It’s easy to do. Let’s face it. Not being able to sleep because you’re constantly choking. Having to sit in the middle of a sidewalk of a big city just because you’re winded, or the stares you get from coughing up that gross mucus in public. It absolutely sucks. But it’s also life; life isn’t supposed to be easy. It’s true we have it worse than maybe our friends or family members. Yet, everyone has their demons they face. That is the first thing I tell myself whenever I think “why me?” You see, it’s okay to vent. To be upset and angry. To maybe throw a fit here and there. It’s also important to remember that if it weren’t for this—it would probably be something else. At least I can come to terms of it and at least I can be prepared for the worst while still hoping for the best.
A tough obstacle I get from living with cystic fibrosis is the constant reminder that I’m sick. When I was growing up with the disease, no one could tell I had it. I used to run track, play field hockey, do normal things a kid/teenager could do without the burdens of a cough. Then I entered college and a few years after my first year is when this disease began to catch up to me. I noticed that morning runs were becoming harder. Hospital visits became more frequent. Calling my doctor and asking for various antibiotics became normal. Currently, my lung function has really struggled to stay up.
I get very sick every few weeks and have made it to the hospital about every two months. I can’t run at all anymore, standing for extended periods of time has become something I struggle with. I feel physically and mentally exhausted all the time. My chest hurts every time I seem to try and breathe. Sometimes I wonder where I’ll be even 5 years from now. How much more difficult will my life get? When I ponder these thoughts, I think of those around me who are caring for me and choosing to be in my life while stand by my side through all of it. I also think of all the amazing endeavors I’ve accomplished. I have climbed mountains, practiced yoga, traveled to new parts of the world. I never imagined I’d see and do all of these spectacular things in life. It makes me so grateful I’ve been able to obtain such beautiful memories.
You see, Cystic Fibrosis is not just a timeline of life expectancy, it’s also a timeline of living with what life you have left. The thoughts of that someday I may not be able to travel anymore or physically endure a hike around a national forest— is what keeps me going now. Not building a career or starting a family to settle down. No, I want to explore every bit of this world while I can appreciate it.
This is really the only good part of Cystic Fibrosis I can think of. It makes me live more fearlessly. Physically and mentally this disease can tear you apart, but it’s how you look at the trivial things in your life that make it okay. Those little gracious moments of conquering something you thought you couldn’t. Or, being able to smile instead of breaking down in tears. This disease makes us warriors. I hope anybody who is reading this can think the same because you CAN do anything you want in this world.
You just have to push yourself and breathe through the challenges and never forget how truly strong you are.