Recently I met a number of people with CF who are just like me. They’re living active, full lives even though they have CF. I no longer feel alone, a statistical outlier, an aberration in the normal flow of things. When I found these people (rather, they found me) I felt like I had just joined the X-Men. These are mutants just like me, and together we are honing our superpowers to fight against the forces of evil.
And as I got to know them better it struck me – we’ve reached a turning point. We are the first generation of people with CF who are living long enough, and in large enough numbers, to learn how to successfully live with this disease as adults. We are living long enough to become really good at managing our disease, being our own guinea pigs as we figure out through trial and error what keeps us healthy and what tears us apart.
For the entirety of our childhoods the only advice we had to go on was that of doctors and scientists who could only theorize about what would keep us healthy. It was usually good advice and backed by the best research money could buy, driven by the dollars that our families and friends contributed. But we still didn’t have the guidance of anybody who had actually been there – who had lived it. And now, for the first time, our generation is finally able to survive – even thrive – in large enough numbers that we are discovering things that nobody has ever known.
We have seen our friends die – people who shared our experience and frustrations, who valiantly struggled against the disease and the bacteria that tore apart their lungs until they collapsed. Who bravely faced one or more lung transplants, and waited for what seemed an eternity for the call that meant a second chance at life. Who got to breathe fully, deeply, with healthy lungs that had never known disease, only to have their own bodies reject the very lungs that had saved them.
But since it falls unto my lot that I should rise and you should not
I’ll gently rise and I’ll softly call, ‘Goodnight, and joy be with you all.’
– from the Scottish & Irish folk song, The Parting Glass
I don’t know why I’m not like one of those unfortunate friends who died before they had the chance to fully flourish. Why I’m able to explore the world, to dance, to sing. And now, to have found so many others who are also thriving amidst the challenge. We’re running in marathons, climbing mountains, singing opera – doing things that our parents and our doctors never would have thought possible when we were born. Somehow we are living long and healthy lives even when everything around us says that our days should, by all rights, be numbered.
And most incredibly, we are living long enough to become truly good at things. To become experts in our fields, to have enough practice hours invested in our passions that we are no longer mere students or child prodigies, but able to genuinely contribute our skills, our knowledge, and our creations to the world. We are actively doing the impossible, and proving that we can do anything given the time and determination.
I’ve always had the heart of the explorer, a longing to see things that have never been seen before, discover things that have never yet been learned, and to pave the way for others who would follow in my footsteps. I’ll probably never get to set foot on a new world, but I see now that I’m already one of the generation of pioneers who are exploring undiscovered country. The next generation will have not only the benefit of better science and better medicine, but of our experience and firsthand knowledge of how to live successfully with this disease. We are the explorers. We are the ones learning and leading the way.
We are the pioneers.