Sunday, October 14, 2012

On Speeches and Sampson

I took a long, wonderful walk around the city today. I have to admit to loving this Indian Summer weather, and I think Sampson is right there with me. He posed for this very regal looking shot on the Charles St. Pier over the Hudson River -- nose to the wind and eyes on the boats bobbing along through the current.

It was nice to be out walking in the sunshine, especially after last night's fantastic fundraiser for the Cystic Fibrosis Foundation. Most of you know that the CFF is a cause very near and dear to my heart (and even nearER and dearER to my lungs). Last night the fantastic Young Professional's Leadership Committee for our very own Greater NY Chapter held it's annual "Prom to Remember" event, and I was honored to be able to say a few words on behalf of myself, the Foundation, and all of the amazing, wonderful, blow-your-mind-style awesome 30,000 people living and breathing every day with CF. It was, in a word, epic.

It never gets old, speaking on behalf of and next to and together with all of you guys. It never feels stagnant or unimportant or run of the mill. The experience of being able to proclaim to an audience how great the CF community is and how far we've come in the last 60 years or so since the CFF's founding in 1955 is one that seems forever humbling for me, and I mean that in the best way possible. To know the CF community is to love it; to know the work of the CFF is to admire it; to know the beauty of coming together for a cause is to long for it. This is not a disease that requires any sort of "hard sell" to the audience. I simply open my mouth and share OUR stories, and the wonderful part just sort of takes care of itself.

But last night was important to me in a different way somehow and it wasn't just because some of my best friends in this city had a part in planning the event, or because I got to wear a costume that actually involved a wedding gown AND a tiara. Last night was different for me, I guess, because last night was one of the first times I've spoken about CF since my transplant when I felt truly vulnerable in terms of my own health. Last night was one of the few moments since receiving these perfect new lungs when I felt, well, I guess the right word is probably "uncertain," or maybe even "scared." Because right now I do feel a little bit scared, if I'm honest, and it's not a pleasant feeling to remember -- especially when it comes to breathing.

Before anyone gets too worried, though, let me say this: I am fine. I am dealing with some rejection and infection and drug level issues that are not the end of the world, but that are persistent and frustrating for me and my doctor. This makes them scary. It doesn't make them dire, by any stretch, but it does make them scary. There. I admitted it.

So the other night when I took the stage to talk about CF, I felt particularly vulnerable -- and that made me particularly grateful. I am particularly grateful right now for my kind doctor and wonderful medical team, who all seem to know the right balance between caution and courage. I am particularly grateful for my family and friends who organize, attend, and support events like the YPLC Prom, and who share my life whether I am feeling strong or weak or anywhere in between. And I am particularly grateful for the CF community as a whole for giving me 30,000 plus reasons NOT to feel alone in this journey through cystic fibrosis. Or, in other words, I am particularly grateful to each and every one of you. Everyday.

And if all else fails, I can always take a lesson from my wonderful dog: keep your face to the wind, follow the current, and always remember who's holding your leash.


  1. Piper, I read your blog often and have followed your journey. You inspire me, you motivate me, you educate me. We (yes all 30, 000 of us!) are lucky to have you and those like you who are out there and sharing your story. Thank you for being amazing:)

  2. Thank you for posting. I hope you get good news soon :-)

  3. Thinking of you today, Piper. I especially appreciate your sharing the uncertain and scary parts. There is power in acknowledging that stuff! Keep rocking. And dog walking!

  4. it's not a crime to admit that you're scared, even if the fear is not based on the fact that something is horrible but just persistent. changes scare us as humans, even though we face it so often. something like this is scary and frustrating, but you inspire us all by facing it head on, no regrets, putting 150% of everything into it. the point of battling cf is that it never ends, even when it feels like you should have a break. we're all here for you, and inspired by you.