Tuesday, March 30, 2010

This Unfolding

Rain courses down the living room window next to where I sit, typing these words by the grey light of a cloudy city day. I've always loved the rain, for some reason -- never complained about the afternoon thundershowers that so dominated my childhood summers in Colorado, even as the flashing lightening and deep booming echos startled my horses and put my swimming lessons on hold for the hour. And even today, with the mountains replaced by towering buildings and the frightened horses giving way to honking taxi cabs, I still find rain more beautiful than irritating. It's something about the peaceful rhythm of its fall from the heavens, or the eerie magic of a mist-filled skyline that does it to me, I guess. Or maybe it's just the confirmation of yet another cycle: water from the sky to the earth, the changing of the seasons, April (or late March) showers drifting slowly into the promise of May flowers...or so I'm told, anyway. There's just something about rain that makes me want to savor the moment.

Of course, it helps when that moment is warm and dry, filled with a cuddling shorkie after a hot bath and the anticipation of a late-night movie with my sister. It helps when that moment is a brief respite from the constant coughing, and comes in a hour where there are no treatments to be done, no more pills to swallow, no IVs to hook up until later tonight. It doesn't even hurt to have the moment fall in a rare space of "alone time" (sorry, Sampson, present company excluded) -- a place in time when my apartment is once again my own personal domain: my light, my shadows, my windows, my space.

My life.

It's weird for me sometimes to think of this space I'm moving through as a part of my life. There is so much language to the contrary: "my life is on hold," "waiting on the gift of life," "hoping to get my second chance," -- always waiting, hoping, wishing. There is a part of me that prefers to see myself as the person I was before all this started (wait, was there ever a "before" period? Or was it all just one seamless transition?), or the person I will perhaps become after this is all over. A part of me that would like to separate out this period of waiting and constant sickness as some sort of intermission -- a pause in between acts of the real show -- a time to visit the concession stand and stretch your legs until the main actress catches her breath and resumes the stage, her weaker, sicker understudy retired to the wings at last. There is definitely a part of me that would like to scrap this chapter -- just edit it all out until the page is gloriously, perfectly white again, and filled with the promise of any new story.

Yep, there is definitely that part of me.

But, weirdly enough, there is also a growing sense in my mind that this waiting is, in fact, not just a part of my life, but a MAJOR passage in my own personal journey. This is not an intermission, in other words, but perhaps a type of dramatic climax -- the moment when the plot comes together and the heroine finally comes to terms with something deeper than herself. Which sounds, of course, wonderfully dramatic and intriguing, but hardly suffices to tell the story of all the many moments that I have been living lately:

The moment when I was told I needed a transplant and I knew CF had won, in a sense, because it was taking my lungs from me.

The moment when I accepted that I needed a transplant and I knew CF had NOT won, in any sense, because it could never take my spirit from me.

The moment when I was told I could actually have a transplant and I knew gratitude and excitement and fear beyond any of my wildest emotional fantasies.

The moment(s) when I realized that no one has to start dying until they choose to stop living, and that one word doesn't have to define my entire existence, no matter how scary a concept it might represent.

The moment I was offered a chance at new breath from a stranger.

The moment I relinquished my chance at new breath into the chest of another stranger.

The moment I came back home to my shorkie and my family ordered (good) mexican food and my friends came over for an impromptu gathering that evening and I realized that I was okay, I was still breathing, and that I would live to see the next day and (hopefully) the next set of perfect lungs.

The moment I sat with my shorkie and watched the rain course down my living room window as I sat typing out a rambling message of what it's like to live in waiting, instead of waiting to live.

Recently I read a quote from a young psychologist who developed AIDS during the start of the epidemic. After learning his diagnosis, before he even told his friends, he wrote these words (taken from And the Band Played On, by Randy Shilts):

"It's important for me to keep a very close watch on this time. It would be so easy to think I'm not even going through this. It's an interesting time. I would not miss it for the world -- what it's like to go through this unfolding." -- Gary Walsh, 1983

Neither would I.


  1. This is so wonderful. All of it. I remember myself thinking some of these same things a few years ago as I sat in my pastor's office asking for healing. I told him I have felt my entire life like something big was going to happen to me, like I was standing on the edge of something amazing and I couldn't wait for it to finally become my reality! Within the next few days I realized, all of this time I have been waiting, when the big thing that is going to happen is now, it is life, MY life, I am living it day by day, adventure by adventure. I am breathing and walking and living and loving. This is my big thing. I know you have a big thing too Piper. I am still praying for your lungs. Please keep writing. Your words calm my anxiety on my future in this. It is comforting to hear your story because I know soon enough it will be my story as well. Hope the rain finds you well today, =)

  2. HI Piper,

    I justed uttered the same words in a therapy today "I feel like CF won".. It is comforting to know I am not the only one who feels that way! I tend to beat myself up thinking that I am giving in. Your post comforts me, Thank You for that!

    Think Pink!

    XO Kris

  3. This post means so much to me! Sometimes we feel more like the observer than the participant in all this. But this is a huge part of our life too, I agree!

  4. Piper, Taking things day by day is the best way to live for everyone. And I love tomorrows because I am constantly hoping that the right set of healthy lungs will come to you.
    Much love,

  5. Piper - You, Jess, and every other CFer I've met in this position have a depth to you that most can't fathom. Grace and wisdom are traits that often get lost in the shuffle. Not the case for any of you. Thanks for sharing those traits every time you write.

  6. "The moment(s) when I realized that no one has to start dying until they choose to stop living, and that one word doesn't have to define my entire existence, no matter how scary a concept it might represent."

    wow piper...that is exactly what i needed to hear tonight! such wisdom...I just saw on facebook that you got "the call" again not too long ago...I pray this time they're your lungs...
    Love Ya