Journeywork

As most of you familiar with this blog probably already know, I am not a poet.

I am, at various times and places, a student, a server, and a storyteller. I am a somewhat rebellious patient and a somewhat competent doctor at the same time. I am tall and I laugh a lot. I am often very loud and outgoing, aside from the times when I am extremely quiet and observant of others. I recently had a doctor actually ask me if I was flipping him off in his own office (I wasn't) -- and I'm pretty sure he was only half kidding. I am giving, crazy, driven, successful, frustrating, somewhat pretentious, spoiled, intelligent, and prone to calling people out for their interesting quirks and/or contradictions. I am equally prone to being called out. I love things that are simple, I crave intensity, and one super bright color or perfect expression will stop me dead in my tracks. I, my friends, am all these things, but still I am no poet.

And every time I forget this precious nugget of self-awareness I end up with something like this:

Roses are red
But my lips are all blue
How 'bout some lungs, God?
I think I'll take two.

(I store my Pulitizer in the kitchen, by the way. I just don't like to brag.)

And yet, despite my inability to actually WRITE a coherent verse, I also have to admit that I am a HUGE fan of the stuff. From my girlhood crushes on Keats and Eliot to the many obsessions that have come along the way, I just can't shake the fact that sometimes these abstract figures with their untouchable magic typewriters, these wizards or words and viceroys of verse, these (ugh) POETS with their faded type and clusters of glued-on glitter are, in all fairness, really, really smart people. Like, for example, when one of them manages to find these words within her pen:

One day you finally knew
What you had to do, and began (Mary Oliver)

When I started the process of living my life independently with CF, I was terrified. As I took on more and more responsibility for my disease, my potential for error increased, and so did my fear. There were mistakes, there were triumphs, and there were moments of such intense emotion that I actually made the girl in the dorm room down the hall (that one who cried for two days when she got a B instead of an A on some silly calculus exam?) look normal. In short, I was a child (or at least an adolescent, which is probably even more terrifying) and, although I was willing to help myself, I'm the first to admit that I wasn't always great at figuring out how to do so.

And when, in January of 2008, my beloved CF doctor sat me down per usual on a rubbery exam table mattress and, instead of asking to feel my belly and listen to my cough, she instead looked me straight in the eye and referred me for transplant evaluation later that year, I shook her hand, walked calmly out of the office, and promptly lost all composure next to a street vendor on 168th street. To say that I was frightened would be and understatement, as would the words "confused" and surprised. I didn't know heads or tails about this new situation, and so I wandered forward, brimming with questions and desperate for any sort of foothold.

But it wasn't until I got my double lung transplant in 2010 that I ran smack up against a wall that was, for me personally, one of the most difficult challenges yet: living life as a transplant patient in a way that still allows me to live life as, well, Piper -- the not-so-poetic but otherwise somewhat interesting woman and blogwriter you've all come to know and tolerate. And, since I was pretty sure living like me included living MY LIFE (as in setting the ultimate goal of return to work, travel, and some form of "normalcy" whenever it's actually feasible), I have to admit that I was, at least initially, a little thrown by the many restrictions brought on by immuno-suppression, the obstacles to full recovery, and the continued close follow-up by my dedicated care team. I can't be sure of what I was really expecting, but I think it mint have been something like "here's your new lungs, now have fun in Paris!" truth be told, my story's been a little more "here's your new lungs, see you back here in a week." It's not anyone's fault or anyone's error, but it is a situation where, once again, I find myself up against something in the health world that is harder than I expected.

The truth is, though, that there is never just "one day", as Ms. Oliver's words might have us believe, when we know exactly how to begin forever. There are, instead, many small beginnings along the way, each of which brings us closer to our goals, and carries us further from the fear and confusion in which we began.

When I was young, I realized I didn't have to ignore CF or become CF, but that I could just be me, with CF and a whole lot of other stuff, and be okay. I can't even tell you how badly I needed the wake up call, but I began the process. Throug that, I learned that I have intrinsic value and deserve recognition for a lot more than being a patient, and that some recognition for being a member of the CF community was okay too,

In my mid-20s, I realized I needed an outlet to deal with this whole transplant process and I created this blog. I needed to do it, so I began, at which point I learned that I can write, that sometimes I can even write well, and that I'm so far from special I can barely stand it. People get double-lug transplants all the time, and I plan to be around to see that success rate skyrocket.

And now, facing 30 with CF and the lungs of a beautiful stranger, I've come to learn that there is once again life beyond the medical. I've come to accept my fears (past and present) as valid. I've come to appreciate that simply having a transplant does not make me stronger, wiser, or kinder than any other human being. I've come to the amused conclusion that I know more about life wi chronic illness than my wonderful doctor. I've also learned that I often don't know as much as I like to think I do, in medicine or pretty much anything else. I'm in the process of learning that's okay. I need it -- oh God, do I need it -- and if nothing else, I have begun.

I am, I hope, far from finished in my beginnings.

There's a lovely part of her poem where Oliver, herself, begins her mastery. Having given us the encouragement to leap, she continues with an almost irresistible promise:

But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do --
determined to save
the only life you could save.
(The Journey)

Safe journeys, every one of us.