Tuesday, January 24, 2012

The State of Our Union

Patients, Friends and Family, Doctors, members of the CF community, and my fellow humans:

During my term as author of this blog, I have been honored by the chance not only to share my story with you, but to share yours with the world. The voice of all of us as a single, powerful whole has always been, in my mind, the driving power behind these posts. And so, when I came to you in 2008 to write about my conflicting emotions over being evaluated for lung transplant, when I came back in 2009 to post about my joy and sorrow over being listed and my fear that I might not make it, when I came in 2010 to post about the agony of waiting, and when I came in 2011 to wonder at my life with new lungs, I did it all with the knowledge that I was sharing scenes of a battle that was never only mine to fight. I did it with the knowledge that there would always be someone here who would understand, and that I, in turn, would always strive to be there for others. I did it because I knew -- have known all along -- that this war might be a long one, with lots of rocky battlefields along its way, but that together, we would always claim victory.

So when I wrote about those moments, whether happy or sad, I wrote the words with hope. And when I wrote about the Cystic Fibrosis Foundation and the amazing drugs in our pipeline, I wrote those words with conviction. Because when I wrote about the need for US -- for you and for me and for everyone who can -- to take the lead in making our disease, our communities, and our world into something we can live with, I did so with utter and unwavering faith.

And now, it is my true honor and privilege to stand (sit) in front of you (or in front of your screen, anyway) and send out this message with every last bit of the hope, conviction, and faith that I would like to think has characterized this blog from the very beginning.


The state of our union is strong because even as more of our friends and loved ones continue to lose their lives to this disease every.single.day, we continue to fight, and we know that every angel only makes us that much stronger against this monster.

The state of our union is strong because we are leading the way in drug development for all genetic illnesses -- not just ours, but all of them. We are solving problems and searching for answers that others have deemed too challenging, and we are succeeding.

The state of our union is strong because we don't take no for an answer. Ever. And we never will.

The state of our union is strong because we come together in tragedy and in triumph. We know that neither one ever comes in isolation and we have learned that anything worth doing is going to come with pain. We don't need every second of every minute of every hour of our lives to go exactly as planned; we know that life is worth living just by virtue of being life itself.

The state of our union is strong because we celebrate it.

The state of our union is strong because we never forget who we're doing this for.

The state of our union is strong because we are seeing results. We have a new drug in front of the FDA right now that will probably change the face of this disease for ever. We've done that. But we're not stopping there, and we have new drugs already in testing, new partnership agreements already signed, and new dollars pledged for even better results in the future.

The state of our union is strong because unlike some people and some officials sitting on a certain hill in a certain district-that-shall-not-be-named, we are working for everyone. When we say "no CFer left behind" we mean it. And our officials in the DC/Bethesda area are actually doing what they promise. Yep, the state of our union is pretty unique in that way.

The state of our union is strong because the state of our union is up to us.

And we choose strength.
We choose to fight.
We choose to lead.
We choose not to take no for an answer
We choose to come together.
We choose celebrate and never forget.
We choose to work because we know we matter.
We choose us, and our choice is a cure.

If I could leave you with one final thought on this blog -- if I thought, as we CFers know all too well -- that I might not be here tomorrow and that this was the last sentence I would ever type, it would be this:

That you are all magical, and that I cannot envision what my life (short as it might have been) would have looked like without your help and support. That you have already made a difference. Yes, you. So never doubt that you can do it guys, because I have seen it too many times to stop believing now.

Look, if CF or politics or life itself have taught us anything, it's probably that things can change, and often do, on a dime. So why not put that dime to work for real change and reinvest it into the change you want it to be? And if not that, then why not use your other talents instead, because things can also change in heartbeat, in the blink of an eye, or even, sometimes, in a single breath.

And so it is with us. Each time I look at your emails, your FB posts, or your blogs, I am reminded that our union is stitched together by the common threads that bind us as CFers and as people. No one of us alone, as my dad likes to say, is strong enough to beat cystic fibrosis. No disease alone, however, is strong enough or could ever be strong enough to beat us. If we remember that simple truth, then no battles will ever defeat us, no tears will ever wash away our hope, and the state of our union will ALWAYS be strong.

With love, respect, and gratitude beyond measure,
Your fellow fighter


  1. Wow! Love this! Can I have permission to repost as part of my great strides walk message? Pretty please...;-)


  2. I hope my son will be as positive, intelligent, insightful and inspiring as you are Piper! Everything you have said here is so true, but hard to believe (or remember) sometimes. Thank you for you wisdom :0)Can I too have permission to use this passage to inspire the CF community in Australia?

  3. Piper,

    There are no words to express, as well as you have expressed,what an amazing story you have told, and the impact it has on me to read your words. I heard you speak at the MAX Fashion Show and I will never forget you. Thank you for opening up my eyes even more, and my thoughts and prayers are with you and all the other individuals afflicted with CF eagerly waiting for the cure to come. Healing and more healing are coming your way. You are awesome. Thank you for sharing.