Wednesday, August 11, 2010

Learning to Breathe

I used to lie awake at night sometimes just staring out the windows in my bedroom at the streetlights twinkling down on Greenwich St. and the steady stream of cars flowing up the West Side Highway. Minutes would tick by slowly as I waited for my mind to come down off its prednisone mania, or for the cough syrup I had taken (once again) in desperation to finally kick in enough for me to close my eyes. I would lie as still as I could, careful not to move lest I awake the monster in my chest, and pray for the lullaby of my oxygen concentrator to finally work its magic on my exhausted body. And then I would add an extra postscript, asking God to make sure that I would awake again in the morning. It was an afterthought that seemed to grow increasingly urgent with every passing night. Just please God, I begged, please let me rest -- and then let me try again tomorrow.

It seems like a lifetime ago that I lay awake attempting to bargain with my life. A lifetime since I stacked my pillows into a carefully crafted tower designed to allow me some degree of comfort while still keeping me more or less completely upright. (It never really worked, by the way -- I would awake more often than not curled over myself and sitting up cross-legged in an attempt to keep from gagging on the thick sludge blocking my air.) A lifetime since I grudgingly pried myself off the mattress and retrieved yet another paper cup from the kitchen as I powered up my Vest or the Frequencer, knowing that without yet another treatment there was no way I would get any rest at all. And a lifetime since I gasped oxygen in short breaths in between long coughing fits (I referred to it as "spasmatic" coughing -- it seemed the only term able capture the intensity and uncontrollable nature of those moments).

A lifetime.

Or, you know, two months. Which is more or less the same thing when you're just trying to survive.

In these past two months my life has completely changed . . . sort of. And I guess it's a little hard to explain what I even mean by that, so I'm afraid you'll have to forgive me if this seems a little strange. One thing is for certain though: it's been a very strange journey. So at least this post is honest, if nothing else.

In some ways I feel like a totally new person. Or rather, I guess, I feel like I suddenly have the freedom to be(come) the person I was always meant to be in the first place. I have energy that isn't used up by inhaling, exhaling, and coughing. I have time that isn't devoted to treatments. Mental space that is no longer filled up with concern over when the other shoe will drop. There are about 500,000 little changes in my life that add up to a huge difference. Yesterday, when my wonderful transplant doctor looked at me seriously and asked whether I was handling the time consuming new drug routine okay, my honest reaction was to think he was joking.

Because this isn't time consuming; time consuming is 4-6 hours a day plus whatever exercise and eating you can cram into the remainder plus that nap you have to take plus the IVs and the sterilizing and the pills and the emails with your doctor and whatever other issues you have going on that particular day.

And this isn't frustrating because this is healing; frustrating is doing everything right every single day without a single break and still watching your numbers slide downward in a slow race to the bottom while you desperately try and avoid the next infection and constantly beat yourself up for not doing more, not being healthier, not staying above water. That, beautiful friends, is frustrating.

This is, well...this is life.

But at the same time, he had a point, and he wasn't joking, obviously. There are things about this transition that are hard. There are new drugs to learn and new side effects to manage. There are changes to my body both inside and out that can be waaay more difficult to wrap my head around than I thought some of them would be. There is a new identity of sorts to be reconciled -- am I a sick person with healthy lungs, or a healthy person with some sinus/digestive/immune system issues, or both, or neither, or does it even really matter in the long run what we label ourselves? Why did I get this transplant anyway? What are my goals and how willing am I to compromise them if it means a few more years in this amazing life with these incredible people? How much do I owe the many, many indescribable souls who helped me along this journey? How much do I owe myself?

I don't have any answers, but I sure have a lot of really mind-blowing questions. And who knows, maybe some of the answers will come with time, or experience, or just by the grace of God.

In the meantime, though, I'm (re-)learning to breathe. By which I mean I'm re-learning to be patient (rather than simply be a patient, which is a very different thing), to trust, to be grateful, to be scared without being paralyzed, and to re-build the sometimes tenuous connection between myself and this crazy beautiful thing called living. And with every breath in -- with every deep inhalation that now floods my body -- I am reminded that my quest to discover this semi-new self that I have become and always was will never really be over.

So please, God, let me rest tonight -- and let me try again tomorrow.


  1. Ready to end frustration and ready to do life when the time comes. Do life Piper :)

  2. Piper, you have struck a nerve when you say you are not sure if you are a sick person with healthy lungs or a healthy person with various illnesses. For different reasons, I can totally relate to this inquiry. I still struggle at times with what it is or I am but what i have learned is to NOT let the disease or the issues define me. I just do life and when the disease and issues try to get in the way,I respect them but I do not save a spot on the dance card for them.
    You are doing so amazingly well. Can't wait to see you face-to-face
    Continued Godspeed......

  3. Amazing post Piper.

    I honestly can't imagine how hard this process has been but you have honestly handled it beautifully and you are just so inspiring and a truly beautiful person inside and out.

    I so hope you thrive in life with those awesome new lungs are yours!

  4. Piper, the sharing of your story through your beautiful writing is gift. You have once again moved me to tears. Thank you for sharing and thank you to God for the gift of your life and your presence in our lives. Much much love...

  5. It's like an identity crisis, Piper. I still don't know how to "label" myself!

  6. Piper, that was a stunning blog entry. Before tx you were so strong and determined and used to all the CF crap and your blog reflects your acceptance so gracefully. But now your freedom to let it just be what it was and to look back before ...tx now that you're after tx...

    Wow!! Your reflections on your life with end stage CF is totally gripping and bordering on frightening... Especially for us who aren't there yet. But as always I for one appreciate that you don't sugar coat things. Thank you for sharing that. I find your changing perspective truly fascinating. {{{hugs}}} ~Juliet

    PS - I figure the response (rather than FB) would not be lost in the shuffle and you'd see it. :) Plus I wanted to re-read your blog entry.

  7. Your insight is amazingly helpful and beautiful. Keep healing, keep breathing, keep learning all the new things left to learn. Life is frustrating, but it is beautiful too.

  8. piper, be thankful to god for your new lungs. be glad that you were able to get them.

  9. Hi Piper,

    Your entry reminded me of a comment my nurse said at an appointment the other day as we were trying to schedule the next appt around some traveling and such; "Life should get in the way of these appointments". Reminded me that I am not just a patient anymore. I have a full and free life to live! Enjoy and as always your writing is wonderful!


  10. Piper....just imagine 6 months from now when you're completely used to the new meds, the side effects have either worn off, don't bother you (like they do now), or your meds have been lowered (or stopped) so there is no side effects....just 10am and 10pm. Nothing else....

    ....then you realize (as I have) that your life can really start now. You can pursue any career or adventure, you won't be scared about the other shoe dropping (I worried about this for 4 or 5 months post TX). Your mind will be free to imagine. And then I can't wait to read your insights.

    Another great blog. Thank you for sharing your diary.

  11. thank you for constantly reminding all of us of how valuable each and every component of our bodies are.

  12. I love reading your blog!! Thank you for sharing your story. You are a very talented writer.

  13. Another great post that includes the full spectrum of post transplant life! Thank you for continuing to share and enjoy all these milestones. I don't mean to sound cliche but you REALLY are an inspiration to so many people, myself included! Thank you :-)

  14. wow, just wow. amazing thoughts :)

  15. Hello :)

    I found your blog on randomly about a month ago. I just wanted to thank you for writing. My boyfriend has CF and he has been battling a pretty nasty infection for the last 6 months. There are days when I feel very discouraged and frustrated. There are days when I'm not sure what to feel.

    I have found such comfort in the words that you write...and for that I want to say thank you.



  16. Wow. What a beautiful post. I can see that the transition IS strange... moving to a new life without leaving the first one... I feel like I've gone back in time to a younger version of me, without losing any of the wisdom from the struggle to live with bad CF lungs.