Saturday, February 20, 2010

An Open Letter to My Entire CF Family

Dear fellow cystics and all those who love them:

Well, I guess the time has come for me to write this letter. To be honest, I've been putting it off, I think in part because I know it's going to be sappy. And I don't always love sappy. But I do love the truth, and I know that sometimes, tough as it is to admit, it takes a little sap to get us there. So, friends, here is my sap, my heart, and my truth:

I admire every. single. one. of. you.


I'm not kidding. I really do, although some in different ways than others, of course. If there is ONE thing that my time as a member of the CF community (both in real life and online) has taught me, it's that there is no ONE way to handle this disease. There is no foolproof approach, and there is no cystic (or CF family) who I have met that is not trying to live in the best way they know how. And for me, that is the very definition of admirable. So let me break this down for you just a little more:

To the 8 year old boy who just celebrated his 1 year lung transplant anniversary (and his phenomenal mother), you are amazing.

To the 32 year old woman who just got listed for transplant but still managed to find time this past year to get married, and to continue at her job despite huge obstacles, you are amazing.

To the 25 year old woman who works full time and is pursuing a masters in bioethics while balancing a rewarding family/social life and asking some really tough questions about CF, you are amazing.

To the 29 year old poet who seems sometimes to put my own soul into words, and the other 29 year old woman who just took a huge leap of faith in moving several states to pursue her own sense of adventure, you guys are not only neighbors now, but you're also both amazing.

To the 30 year old man who improved his own lung function by leaps and bounds (or should I say strides) through his dedication to exercise, and who is now using his gift to inspire other CFers, and who found time amongst it all to get engaged, you are amazing.

To the woman with CF on the transplant list in FL, who is moving to follow her dreams of new lungs, and who took the time to fold cranes for each of her fellow cystics on the waiting list, you are truly amazing.

To the young man who has severe cystic fibrosis coupled with another genetic disease, and to his mother who is unafraid to write honestly about their lives (the good and the bad), who clearly moves mountains to help her son drink in and enjoy every drop of life, you guys are nothing short of amazing.

To my friends who are "square pegs" and had to fight for their own CF diagnoses, who came to terms with CF at an age when the rest of us were already well-versed in its ups and downs, and who advocate for recognition and better treatment of "their CF," you guys are pretty darn amazing.

To my friends who are raising families, running 5ks, fighting their clinics to get the care they know they need, searching for love, getting married, starting new jobs, taking disability to focus on their health, trying out new treatments, going the extra mile (or 2), starting blogs to educate other CFers, and generally out there living, you are guessed it: amazing.

To my newfound friends at my own transplant center, who keep me laughing and smiling and who generally make it all bearable, not only do I owe you all a huge thank you, but wow, you're amazing!

And to my "transplant idols," whether you're there for me on the phone when I go through dry runs, or have a blog that I just can't get enough of, or showed me that it is indeed possible to run a half-marathon with transplanted lungs, well, I don't even think I can begin to say how amazing you guys are.

In short, I'm amazed by my fellow CFers. And I just want to say to all of you that I embrace your stories, your triumphs, your tragedies, and your lust for life. I will celebrate with you, cry with you, and proclaim your awesomeness from the rooftops if I have to, because I think you are what makes this disease worth fighting. You are the truth of this disease, the living proof of its blessings and its cruelty, and I am beyond grateful for the lesson.

It may be sappy, but that doesn't mean it's not real. Because the reality is that we're all just out there trying to find our own path through life, and breath.

With deepest admiration and respect,


  1. Thank you for making me cry at 8:30 on a Saturday morning!

    You amaze me too. Working like you do for as long as you did. I don't know how you did it. I admire you and I wanted to keep on working as long as I could until, maybe, I was told I needed to be listed. But I couldn't last that long and for that reason it made me admire you even more You are amazing too Piper and I love you!!!

  2. much love my friend, much love.

    Thinking of you............and your achromabastard and hoping he leaves you alone for a bit.

  3. I loved reading that open letter Piper. There are truly amazing people out there in the CF community!


  4. Wow Piper, that was AWESOME...and so are you :) I'm so glad in our CF community we all have eachother!

  5. Awww Piper! You're amazing!! One of my first blogging buddies!

  6. Well shoot now I'm crying and its all your fault! But its not a bad cry. Its one of friendship, and comeradery. People like you make this disease worth fighting. We really are a family, even though most of us have never met, and THAT is amazing too! (((HUGS)))

  7. How many Jess's you got reading this blog!? LOL!

  8. and bless YOU Piper for being one of the many blogs that I go to each day to find new and different ways of helping my son whose so sick from his severe CF...and for your constant encouragement, your bravery, your strength, your openness, your love and your understanding. we couldn't walk this journey alone...without you and the support of many other cf families and cystics!
    keep on the fight girl...we will too! you are such an inspiration to me!

  9. Something is to be said about this community we all belong to! I couldn't think of somewhere else I would rather belong... Always love reading your posts. Thanks Piper for being such an inspiration to so many and for just being you!


  10. Oh Piper, you are a gem of a writer. I love this post, because its inspiring, like you. And you're right, as usual, not enough can be said about the CF community--- rare and beautiful....yes, even the guys. I second the motion.....Cfers are amazing!

    Take care,

  11. Hi Piper and friends,
    Thanks for sharing your stories and thoughts, reminding us of the meaning of courage, patience and compassion.
    We're sending positive thoughts from the Emerald City.
    Love, Louise Stonington
    PS Your puppy might like to watch U-tube 'funny cats'.