Friday, July 23, 2010

An Open Letter to the World at Large

Dear World:

Thank you so much for your concern. No, really, I mean it. Thank you for calling and writing and sending love across the wires, and for just generally caring enough to stick around. And most of all, thank you for loving me enough to keep asking me how I'm doing and wanting updates on my progress. I am truly humbled by your support.

And since I seem to have trouble expressing myself these days, let me try to answer your collective question as best I can. Because one of the most difficult things in the world right now is the answer to that oh-so-deceptively complicated query: how are you, really?

Honestly, I am alive. I am living as best as I can with whatever comes my way, be that something as wonderful as increased PFT numbers or something as frustrating as steroids or diabetes. I am happy and grateful. I am scared and overwhelmed. I am delighted by the little wonders of life and angered by the setbacks. I am as much a walking contradiction within a single self as Emerson could ever have imagined; I, too, contain multitudes. I am excited for the future with my new lungs and somewhat saddened by the loss of part of my physical self. I am ready. I am still, in some ways, waiting. I am intensely human.

I am not, however, perfect. Especially right now, in this period of transition, I find small frustrations difficult to swallow (no pun intended, for those familiar with the post-transplant routine) and I am sometimes a bit of a pill myself. I am frustrating to my doctors and way more flighty than I used to be -- where the heck did my amazing memory go, anyway? I am not always happy, despite the breath that fills my body, nor am I always 100% fair, to myself or to others. These drugs and these situations play with my mood and my ability to process it all in the way I would like. I am on a burst of very high-dose steroids, and I'm living by the old adage that if you can't say something nice, you should probably just shut up. Which means I am, at this point in time, fairly quiet. You're welcome.

I wish I were better at all of this. I wish I could magically just make up my mind to be all of the good things I was before I ran headfirst into the wall of end-stage lung disease, only stronger, smarter, and more enlightened. I wish I could say that illness has somehow transformed me into a person with all the ironic wit of David Sedaris, all the righteous strength of Martin Luther King, and all the radiant peace of Mother Theresa (minus, of course, the dead part for those last two). Most of all I wish I could just make these past few years easier on everyone by becoming some sort of miracle patient and erasing all the fear and grief and uncertainty. I wish I could do all that AND save the world AND look really fantastic doing it (okay, so I'm still a little vain -- did I mention I'm human?), but instead I'm slowly coming to the understanding that I'll just have to settle for acceptance of myself, flaws and all. Someday.

Which I guess is the real answer to that overarching question, after all. How am I? Well, I'm getting there. I'm thoroughly relishing the journey along the way, even the parts I don't honestly enjoy.

And somewhere, in this whole messy, ecstatic, scary, ridiculous, melodramatic mindfuck of a miracle, is life -- or at least I'm fairly certain that's the case. And that fact, come what may, is always something worth celebrating.



  1. I have this itching feeling that I need to bookmark lots of your posts.. this one screaming it as well.. for when I get to your point post transplant. You're an utter genius of telling it like it is and compelling us to love you for who you are.. even when we don't even know you! Bless you.

    p.s. this feels like a terrible time to ask this.. but I ordered a second round of shirts at one point and am unsure if they are on their way. No rush honestly. Just curious. Michelle Matta

  2. Hang in there Piper! The world loves you and is behind you every step of the way. I know I'm cheering you on fro the sidelines! Go, Piper, Go! You can do it!

  3. I check in on your blog when I see there has been a new post. I don't post a lot; but I'm checking in and reading. I'm still sending you my thoughts and prayers...

  4. Mommafirst (Heather)July 23, 2010 at 9:34 PM

    I've been worried about you, with no update for so long. I'm sorry you are struggling. I can't imagine that replacing your lungs for new ones is an easy time, physically or emotionally. Hang in there, its all so new. I have no advice, but do know that I'm watching and wishing you the best.

  5. Piper,
    What you are feeling is the normal no one talks about: you aren't grateful because you hurt too badly, and you feel fat and ugly to boot. You thought you would be ecstatic, but you are depessed. You thought you could handle anything as long as you could breathe, but this new routine is freaking you out. Trust me, you will normalize, and this transplant life will be as familiar as the cf skin you wore before, only much more pleasant. Honestly, the firt six months are crap, but each day is slightly better than the last. You will get there.

    Duke lung tx April 9, 2009

  6. I have been following your blog for some time and find it very inspiring. Your honest, forthcoming and articulate writing captivate my interest. Thank you for sharing your story/life with us all. I too was concerned this week because there was no regular update for some time. I am glad to know that in general all is OK and you are adjusting to your new normal. I hope everything continues on well for you and we will certainly continue to "listen" to your story and keep you in our thoughts and prayers. Thankyou. Ross.

  7. Stay strong, you know you have supporters and people looking up to you all over the country, and maybe even world! Always sending positive vibes your way :)

  8. Even super heros have bad days.

    Hoping there are good days or at least moments mixed with the challenges. Remember they're challenges. It's just that some days we just want normal.??

    Love ya and thinking of you daily.

    Thanks for the post!

  9. Wondered where you'd been. Thanks for coming back. It's always great to read your blog both for the writing and for the honest experience of having CF pre and post TX. Keep being honest and I'll still keep reading even if you're not farting butterflies :) Thanks a ton. Steph

  10. Heidi Karn BarkerJuly 24, 2010 at 10:22 AM


    There was a moment about four and a half weeks after my transplant where I discovered that a potentially terrible bacteria had settled itself in my new lungs. Despite my constant dependence on knowing that God would take care of me through the whole ordeal, I found myself crying, and sobbing "Why would God do this now?" Sounds kind of cheesy now, but at the time, I meant it and was questioning everything. Of course, I got over it, turns out I didn't have the bug, (literally, thank God) and I felt terrible for doubting.

    So, I understand what you're feeling and can only say to just keep planning, hoping and looking towards the future. That's what got me through each day during those times.

    And, because I have enough prescription drugs to ever consider those which are recreational, I wanted to share something I read the other day about getting high naturally. :) In the magazine Good, an article recommends holding the right nostril shut while breathing deeply through the left. Do this 30 times and it should result in a natural high. Haven't tried it myself yet, but who knows? Just thought it'd be a nice way to exercise those new lungs of yours.

    Have a wonderful day!

  11. Remember one thing...this is a process. It takes time for you body to feel comfortable again. It takes time for your memory to come back. It takes time for your concentration to come back. It is living in a brand new takes time to adjust. You are doing great! Much love! Your memory WILL come back, by the way...I promise.

  12. In all the change, challenges and frustration you still manage to find such beautiful words. Thank you, I find you so inspiring.