Friday, March 8, 2013

The Best of Times

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way." -- A Tale of Two Cities

When I first read these lines in my high school English class, I remember being pretty ticked off. For starters, I was 100% sure that if I ever wrote a (run-on) sentence with that many commas my English teacher would promptly kick me out of the class. For another, I was also certain I was going to have to write an essay on the meaning of Charles Dickens' famous opening line, and I had absolutely no clue what that meaning might actually be. This line meant that I was immediately turned off by a book and an author that, as an English major and then a law student, I would find myself returning to over and over and over again. And yet, as many times as I read it, I never really understood that one long, annoying, contradictory, and admittedly brilliant first sentence. I pretty much decided Mr. Dickens must have suffered a slight case of multiple personality disorder and left it at that.

Until now, anyway.

Several hundred miles from where I sit right now, people are gathered together in a room at the CFF's annual Volunteer Leadership Conference. Sadly, infection-control rules and respect for my own health and that of my fellow CFers means that I can't be there with them in person. Instead, I spent yesterday having a bronchoscopy to determine the cause of a severe drop in my lung function over the past couple of months. I am now spending today with my puppy, watching the snow fall, hopped up on more steroids than a professional baseball player, and getting ready to start yet another course of hardcore antibiotic treatment to fight the ongoing pneumonia in my lungs. It is, I'm pretty certain, the kind of day I could spend feeling legitimately sorry for myself if that were my style, if for no other reason than I'm finding myself once again fighting an uphill battle against this obnoxious disease. If for no other reason than I wish with everything I've got to wish with that people with CF weren't limited by things like infection rules (necessary as they are) and bronchoscopies. If for no other reason than we haven't cured this damn disease yet, and quite frankly, it's been too long already. If for no other reason than it is winter, and according to Mr. Dickens that might just be reason enough.

But it's not.

This winter, the CFF is moving forward with a speed that, just years ago, would never have seemed possible. We have an end game in sight, and all we need to push us there is money -- and a little bit of magic. And magic, guys, well, the CF community has always had that in spades. More importantly, we have the people we need to lead us there -- and by that I hope you know I mean you. I mean all of us. Hearing from CFers participating in the conference safely via live stream makes me smile. Watching the internet fill with pictures of slides and real conversation about the future makes it even better.

Spring of hope, indeed.

I also just heard from my own doctor, who told me that although my current situation is frustrating, it is also super hopeful. Steroids, while obnoxious, stand a very good chance of knocking this thing out and returning to me the lung function I thought I had lost. This snow, which I thought was pretty much just useless bad weather, instead turned into a celebratory romp with my puppy as I watched him delight in turning himself into a wet, smelly, snow-covered mess that promptly curled up on my couch as soon as we got back inside. I don't mind one bit. I have meds to start, friends to visit, money to raise with the great folks from the Cystic Fibrosis Awareness Foundation, and a whole lot of life to live this weekend.

I'm a firm believer that patience is the hardest virtue out there. Being sick and waiting for the numbers to come back up, working hard and waiting for the science to be there, knowing the science and waiting for the drugs to help specific mutations, finding the drugs and then waiting for approval -- these are the most frustrating and the most hopeful situations I can imagine. They are the moments when we feel the most overwhelmed: with excitement, fear, happiness, urgency, and pretty much everything in between. They are the best of times, they are the worst of times. And we, beautiful people, are blessed enough to live in them, walk through them, and to write our own stories.

It is the season of Light. And we have everything before us.


  1. Yes, Yes, YES! You said it girl! Can I steal some of this for my Great Strides letter this year?

    1. Yes, of course! All original content on this blog (aside from personal photos and guest blogs or other linked work not owned by me) is fair game for CF fundraising and CF or transplant awareness. I just ask that you cite or link the source. Thanks for asking and more importantly: thanks for helping us reach a cure!

  2. Finding light in everything that you endure is such an amazing character trait to have Piper. No, you were not dealt the hand that you should have been, if not just because of CF, because of the "free" life that you have been deprived of after getting new lungs. All hopes are that the new lungs will grant you the life you've always dreamed of, even if it is trading one illness for another. That part of the story is never a guarantee.. none of us are guaranteed that perfect, happy ending. But in saying that, I see that if anyone on this planet could handle not getting that perfect, happy ending, it is you, and through you and your story, we all have inspiration that we didn't have before knowing you. You always say love and light to other people, and yes, that is the perfect choice of words to describe what you are and what you bring to those who know you! Thank you for always being that warm, positive voice for those of us in the CF/transplant community. We are all better off knowing you for sure! So Piper, love and light to YOU! Xo

  3. Piper, you are simply inspiring. Thank you so much for inspiring so many people who donate time and money to the CFF (believe me, I have heard about you a lot the past few days!). I hope that steroids make your numbers come back up and fast. Never before have I so desperately wanted to hang out with you, and the amazing other adults w/ CF out there... and at the very same time our infection guidelines get even stricter... CF never stops throwing the curveballs. I guess I should just be thankful that I share this disease with so many people I deeply admire. (you too, Christy!) <3 Kristin

  4. Piper: As a CF momma, you have me in tears with this post. I do believe now is the time for us to put down CF once and for all together. You give me so much hope for a world where my little girl (she's a teen now and would kill me for that!) will have a whole lifetime full of "Seasons of Light" to look forward to. You rock!
    Love and kisses,
    The Johnson Family

  5. Thank you for sharing. ~T, 03-9-2013

  6. Hi Piper,

    Beautiful, beautiful post. My sister Beth died 11 years ago (3/8/02) at a very young 29. This disease is so horrible but the grace by which you handle all your obstacles is just so admirable. You give hope to so many people. Our prayers are with YOU!