Thursday, September 15, 2011

You Probably Think This Blog is About You

Today I received a package in the mail, and when I opened it up I found a few copies of American Way Magazine, the official magazine of American Airlines, for those of you who keep your feet on the ground most of the time. (Take it from me: it's a great magazine for those of us who like to walk around with our heads in the clouds!) American is also the amazing sponsor of the AA Celebrity Ski event benefiting the CFF. And I have to be honest here, I knew this was coming, but it was still a huge delight to open the glossy pages and see this article:

The Fight of Their Lives

Wowza, right?

Okay, I'm not gonna lie: it's always fun to see yourself in print. That part of it was great, and I'd be a fraud if I didn't admit that I went squealing around my apartment and basically called/texted/emailed/sent-out- (lung friendly) smoke-signals-to every single person I knew to make sure everyone was reading this article. That was, truth be told, the very first thing I did when the darn thing hit my greedy little hands.

After my vanity died down a little bit though, I decided to sit down and actually read the article. So I opened a copy and started to digest the words, and the meaning, behind the story. I read about two of my very best friends from Colorado, my former neighbors who also have this disease and who are living amazing lives every single day despite its nasty grip on their routines. I read about their parents, two wonderful people I have known my entire life who would move mountains for their three daughters, and who actually do so in small ways all the time. I read about the love that family shares for each other, which came pouring off the pages in every sentence. I read about my own story. I remembered. I marveled at the way the article paints me -- paints all of us -- as brave, when most of the time I feel somewhat overwhelmed and fragile. I was flattered that someone would see us in that way. I was amazed that the words rang true and that I could suddenly, at some level, recognize that spirit within myself.

But most of all, guys, I was humbled.

It is no secret whatsoever that I am this community's biggest fan. Without sounding like more of a sap than I already do on a daily basis, I really love all of y'all. You guys inspire me. You encourage me. You remind me of why I'm here and why I'm still fighting -- why I will work to kick this crazy little monster's butt until the day it kicks mine. You make me think. You make me wonder. You make me crazy. You make me cry. And you make me laugh. More than all of that, though, you make me super-duper-uper proud. Every day, every minute, and every breath.

Which brings me to the thing that I like best about this article (other than the fact that I'm wearing SUNO in the pictures!). What I like most is that this article isn't really about me, after all. It isn't even about Sam and Libby, although it probably should be. And it isn't about CF, because goodness knows I'm not gonna let that bugger steal any of the spotlight. Nope, it isn't about any one of those thing, or at least not in exclusivity. Because this article, guys, is all about us.

If there's one thing I've learned from all of you guys out there it's that it takes a village. And preferably in an ideal world, that village would be chock full of thinkers, lovers, fighters, dreamers, learners, teachers, motivators, storytellers, writers, players, and doers. You guys embody that village for me, and that, without exaggeration, is the one and only reason I am still around to be featured in this story (or that I have the breath to shriek at its arrival!). I am alive quite literally because of the kindness of the beautiful souls who gave me these lungs, but it is equally because of my own village of friends, family, doctors, CFers, role models, confidants, CFF staff and volunteers, sponsors like American, and readers that I am even typing these words. Or, to put it another way, it's because of you.

What the article really gets at, from my perspective, is that people with CF are fighters. That we overcome challenges, and that more often than not we do it with a smile on our faces. It's about how we live each day of our lives with this disease, knowing it's there, understanding what it means, but still doing some pretty kick butt things while we're here. And that isn't, of course, a trait unique to CFers -- though it does seem pretty much rampant in the CF community so far as I can see. It's really about how any group can rally together and realize its strengths and its challenges through the individual and collective actions of its members. It's about how you, me, and all of us are finding new ways to live better even when things can seem a little crazy, overwhelming, or just downright hard. And, of course, it's about life. About living it, about embracing it, and about sharing it.

I think my favorite moment in reading the article was coming across the quote toward the end, where I said in a fit of inspiration that "I didn't want anyone using this disease as an excuse not to live life." I still believe that statement wholeheartedly, but I've also come to realize that the person I was talking to when I said was myself. And the community I have to thank for showing me that there is another, better way, is composed, in all honesty, of all of you. There is a better way to live with this disease, and more often than not, that way is simply to find your village(s) and to embrace them with everything you've got -- and then, if you're truly one of the lucky (and brave) ones, to learn to be yourself within that larger whole.

With love, light, and eternal gratitude to the village that sustains me always,



  1. as always, a beautiful post that brought me to *happy* tears. the article was amazing as well, what a story!

  2. What a great opportunity! They couldn't have featured a better cyster in our community :) GREAT quote by the way!

  3. Great article and blog!!!!

    I find that the more people I know with CF the stronger and braver I feel. They give me the courage to do what I need to do. To ask the questions I need to ask. And to do what I WANT to do.

  4. Love the quote too! What a great reminder for ALL of us. So cool you got to represent the community. Great job :)