Following that last statement many may be looking at me with a bit of a “what the” facial expression, while others may have already closed the viewing pane disregarding anything I have to say. Hopefully, not too many of you have left and for the few that have remained, allow me to explain. CF can be a brutal and time consuming disease, this is no secret, but you only have to let it be life consuming for you if YOU allow it to. I was diagnosed in 1980 in a time where CF treatment and prognosis was much bleaker, where treatments weren't nearly as effective and were a little sniffle stood to present an even bigger danger. That being said, when I was diagnosed this same advice of living a normal life was proffered on my parents and they took it to heart. As I grew up, I went to school with all the other kids my age. I played sports like hockey, baseball, soccer and cross country. I even went away on weekend trips on my own by the age of ten. My parents didn't have me do these things because it was easy or because they didn’t recognize the risks. Anyone who knows my parents know this is the furthest thing from the truth, heck my mom was a CF dietician for nearly a decade who saw daily the ugly side of this disease in the kids she treated. Matter of fact, as a parent myself, I can only imagine how hard it must have been to just let go and accept me doing all these things as opposed to protecting me from every little bug. They instead made the choice to simply deal with the result of allowing me to do these things the best they could. If I got sick, so be it, they would be strong and help me fight it as best they could. It is because of this parenting choice that I am a father, a husband, a college graduate, a person with a career and lastly and least importantly, a person with CF.
The other day, a young woman was minding her business walking along the sidewalk when a car lost control and killed her. This is without question a tragedy, but perfectly exemplifies my point. You can spend every waking moment fighting every bogeyman you know of letting it dominate your life ... and even succeed at knocking them all back, only to have something unexpected come out of left field and tap you on the shoulder telling you you're done.
Right now I'm in hospital after having surgery on my right lung to have a Cyst removed. This after having my lung collapse four times in the past 7 months. While this situation may have been exacerbated by my CF, it is something that could have happened to anyone and is completely unrelated to my CF. In fact a good friend of mine went through the same thing in her twenties. There is no amount of treatments or further precautions I could have taken to prevent this. My point is, still do all your treatments, don't ignore warning signs and don't do stupid things intentionally like drink the tap water in Mexico, but at the same time, live.
Perhaps the best way the CF Clinic could pose it is instead of living a normal life, live as normal a life as possible. I know it’s not easy advice, and you don’t have to take it, but please, just try. You or your child with CF will never regret it.