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Our Story

Posted Mar 23 2013 4:15pm
Last night I had dinner with some amazing people.

Four years ago, in 2009, I was lucky enough to meet and connect with another woman near to my age in New York who was also going through the transplant evaluation process. She and I shared a CF clinic, but of course patient interaction isn't encouraged in most clinical settings (cross-infection is a big no-no in the CF community, as most of you know), so we first connected online, through the CF2Chat forum.  And if this is starting to sound a little like a Match.com testimonial, please know that these forums are often a vital source of information and community for people with such a rare disease. At only 30,000 people in the United States, it's a pretty safe bet that some of us live in towns where there simply aren't any other CFers to connect with personally -- cross-infection protocol or no -- and being able to talk to someone else who knows what a PICC line is and has actually felt the effects of Redman's Syndrome firsthand is a totally validating experience. But, you know, I digress.

Through this initial lovely lady, I was able to connect with several other wonderful folks who were also waiting for lungs in our area (and one "grandma" of the group in that she was already a few years into her new lease on life). Over the past few years we've grown close and then even closer, enduring six double-lung transplants, one kidney transplant, several scares (from rejection to cancer to the need for intense life support), and the tragic passing of three close friends. We've helped plan each other's weddings, celebrated the birth of a new baby boy, cheered each other on in 10Ks, encouraged each other to keep pushing (keep going, keep going, keep going, blast it out!), prayed for each other, shared tips on healthy living post-transplant, brought each other care packages, and taken more silly pictures than I can count. We've eaten a lot of cupcakes. Seriously, there is not a cupcake in the Tri-State area that doesn't quiver with fear when we pass by. And, the truly incredible part about all of this is that we've done it all (or at least the vast majority of it) with a smile.

I decided to write this post because I wanted to tell my CF friends how much they mean to me, whether I know them in person or know them through this tangled web of folks we call the internet. I wanted to give a special shout out to our community: to its strength, its resilience, and even its sense of humor. I wanted, more than anything I think, to take a second out of my own life to pause and acknowledge how helpful -- how healing -- these relationships have been for me personally. And I wanted to do it publicly because I think we need that right now. Or I do, at least.

Look, cystic fibrosis is not my life. This blog got its name in part because I wanted to emphasize that CF is a part of me, but it's definitely not all there is. We've all heard some variation on that saying before, right? And yet, cystic fibrosis is always there, whether I like it or not. Having folks who understand that (I mean, who really understand it, in a way even my close friends and family really can't) is part of what allows me to live all the other super wonderful parts of my life without getting stuck. I honestly can't imagine any group other than my CF friends who could sit around swapping war stories ("and then when they pulled the chest tube I could actually feel the air!"), funny hospital stories ("remember that time the transport lady let go of my wheelchair on the ramp?!"), and uplifting stories ("I can't believe she's doing so well after all she went through last year!") and have it be quite so meaningful. As an aside, I also can't imagine another group where the person who said she has "no good medical stories" has had two major organ transplants. Bear in mind that none of us is above mid-30s in age. You just can't make this stuff up.

And we shouldn't have to. We've earned our scars, guys -- might as well wear them with pride.

I don't have any great insights to end this post with. There's no easy answer to the lingering questions of community vs. infection control, just like there's no easy answer to how much people with CF ought to choose to make our disease a part of our day-to-day lives (beyond the medical stuff, of course). I understand why these are real issues, and I've struggled with them personally as well. But I also know the beauty that has come into my life through the CF community -- near and far, in-person and online, happy and extraordinarily painful -- and I didn't feel I could let this day pass without just saying thanks.

Here's to us, beautiful people.
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