Friday, May 31, 2013

On Playing the Tiles

It's the end of May, and also the end of National Cystic Fibrosis Awareness Month here in the states, but don't worry: we still have lots of Community Faces guest blogs to post. Because, after all, CF doesn't stop just because May is over -- and neither will we.

I was thinking the other day about what "awareness" means to me in and what it might mean to the other 69,999 people all around the world who struggle against this insidious little monster. Most people I meet on the streets today have some general idea of what I mean when I say I have CF, even if I do still get a lot of responses like "that's like asthma, right?" or even the occasional "oh, yeah, I think my my dad had that once." The visibility of our disease is increasing, especially with the buzz around new drugs like Kalydeco and the use of social media to help educate and inform more people about what CF is or why research is important. I have to admit, it's nice to see an option to donate to CF at the register of my local CVS or Party City, or to go into an ER these days and not have to be asked "when did you first catch cystic fibrosis?" by 75% of the staff. The proof's in the pudding, and we ARE making an impact. Awareness, it seems, is a beautiful thing.

Recently I read a book documenting the often hilarious underworld of competitive Scrabble. You know, the board game based on drawing tiles and forming words? Confession time: I'm kinda obsessed. In the book (which is called Word Freak and is a super fun read if you like journalistic nonfiction) the author notes that it's considered bad form at Scrabble tournaments to complain too much about the tiles you draw. Everyone has the same chances at drawing either a good or a bad rack, the author explains. The thing that separates great players from merely good ones is not what they draw, but how they play the letters once they have them.

I'm sure you see where I'm going with this.

Most people would probably assume that having CF means you drew a pretty shitty set of genetic tiles. In some ways, of course, they'd be right. I'm pretty sure that no one in their right mind would ever want to be born with a currently incurable disease that attacks two of the most basic and vital acts of survival: your ability to breathe and to digest food. I'm also fairly certain no one would willingly sign up for a disease that still kills children, that causes your body to literally drown itself in its own toxic goo, and that -- just when you think it's safe to let your guard down for just a single minute -- is constantly coming up with new and often super creative "secondary" issues to throw into its deadly mix. To be honest, when new parents reach into that letter bag, I doubt that any of them are hoping to pull out a "C" and an "F" for their children.

But sometimes it happens anyway, and then what? Then it's all about how you play the game.

CF awareness, to me, is about bringing other people in to play on our (winning) team. It's about reminding ourselves and the world that we are not beaten, not even broken down, and maybe just angry enough to push ourselves to play even harder. Seeing all the faces of kids and adults with CF filling my Facebook newsfeed during this month was a constant slap in the face about why I keep searching for newer and better moves to outsmart my opponent. Because what I am most aware of, personally, is that this is not a game we can afford to lose. These people -- myself, my friends, the kids I see at Great Strides and the parents I've comforted in waiting rooms -- are not "CF statistics." They are not the faces of this disease. They are the faces of themselves. Each and every one of the 70,000 of us worldwide is the face of a perfect creation, of a person with so much to offer the world besides just some vague notion of "awareness," of someone who is way more than just a CF patient.

That is the side of awareness I want to focus on. Forget the statistics for one second -- focus your eyes on a single face. Forget the monster in the darkness -- turn your face to see the amazing people standing in the light. These are the folks who learned long ago that they had better things to do than complain about their tiles. These are the people who are playing for their lives.

Turn your head. And help us win.


  1. Piper,

    My name is Katherine Miller and I've been following your blog for the past 4 years, laughing and crying all the way. You continue to inspire me and my adult daughter with CF through your gracious writing. This post just touched my momma heart. You are a true HEAD TURNER! Thank you and God bless.

    The Miller Family

  2. Piper, I'm a CF Momma too - I read thousands of posts but I LOVE this one. Thank you for all you do!