headerphoto

Point of View

Running Together: Cystic Fibrosis, Community, and the Race to a Cure
by Piper Beatty

If you had told me two years ago that I would be sitting here – coffee mug in hand and with no oxygen tank in sight – I would have called it wishful thinking.  Back then, at just 28 years old, cystic fibrosis was slowly destroying my lungs and wreaking havoc on the rest of my body, to the point where lung transplant had become my only hope for survival.  After so many years of fighting the disease – which my friends and I often refer to as our “little monster” because of its constant presence in our lives – I was tired, sick, and more than a little scared.  What I was not, however, was defeated.  Rallying what little breath and energy I had left, I turned my attention to the one place I knew I could find strength, encouragement, and support during the transplant process: the CF community.

It may sound like a strange thing to say, but some of my strongest memories of CF are actually good ones.  Diagnosed at only six weeks old back in 1981, I and my family have been active runners in the race for a cure basically from the word go, and we’ve been lucky enough to meet some wonderful people along the course.  I remember cutting the ribbon to start my local Great Strides walk at just 8 years old, looking around and realizing, for the first time, how many people were there with me, ready to take steps that would eventually lead to better treatments, longer life expectancies, and more opportunities to really LIVE with CF for myself and so many others like me.

It was, even at that early age, a humbling and inspiring moment for me.  It is also why, in June 2010, I strapped on my oxygen tank and my walking shoes and went out to join my friends and community members at the Manhattan Great Strides walk – failing lungs and all.  To me, the chance to walk for a cure even at that late stage of my disease was a chance to show CF once and for all that it would never walk all over me or anyone else.  Together, my fellow walkers and I would always cross the finish line in triumph, no matter how much cystic fibrosis tried to cheat us out of that.  Just one week after that walk, I got the call saying new lungs were available for my transplant.  Crossing the finish line in triumph, indeed.

Not long after my transplant I wrote the following message to CF on my blog, A Matter of Life and Breath:

Dear Cystic Fibrosis:

Well, here we are again, little monster.  You’re still hard at work terrorizing the lives of me, my friends, and the over 30,000 other people living with CF in the U.S. alone and we’re still hard at work to wipe you off the planet.  It is, as always, a race to the finish between you and me: a full-on sprint down a very twisted race course to see which one of us can finally beat out the other one and claim the final victory.  But let me just tell you something, CF, from myself and from everyone else who’s in this race against you:

You don't stand a chance.

Nope, sorry, not kidding.  I absolutely mean it.  And as proof I've spent the last couple of weekends at events that have raised literally hundreds of thousands of dollars to eradicate your presence.  I've stood next to friends and family members who have lost a loved one and who are still so dedicated to kicking your butt.  I've watched in awe as one small child took her place in the center of a huge group photograph -- her future as bright as the smiles on her team members' faces.  I've seen people walk in the rain, people walking with strollers, people dressed in costume, and people coming together in mutual love, hope, and celebration.

All of this, CF, is not because of you at all.  It is despite you.  It is not because you make us sick, but that we are strong despite your efforts.  It is not because you rip apart our community, but the way we rally despite these great losses.  It is not because we have no faith, but that we are hopeful despite your nasty tricks.  And it is not because you weaken our spirit.  It is that we will always be the bigger, faster, and more determined team -- despite it all.  And I hate to tell it you, little monster, but if the heart, soul, and dedication that I've seen these past few weeks alone is any indication, you're in way over your head with this one.

And unlike the rest of us, CF, you are running alone.

Sincerely,
Piper