Wednesday, January 20, 2010

Stream of Consciousness Post #1

it's 2:30 in the morning and still no call tonight. or this morning. i've managed to convince myself that the call will come at 2 am, probably because someone i know had a dry run around that time in the morning. but i had two dry runs and they both came in the afternoon. does that mean i count other people's experiences as more real than my own? and what is real anyway, when you're waiting, suspended, not moving, in line? take a number and have a seat, oxygen machine is to your left and bathrooms are down the hall -- transplant is the ultimate waiting room.

i'm not even sure what i'm waiting for honestly. lungs, of course, but what does that mean? what will they feel like inside my body? will i miss my old lungs? feel like a part of me is lost? will the new lungs miss their old body as well? will they be homesick inside the foreign country of my chest, suspended from my airways, breathing in my oxygen, surrounded by cells that would kill them if they weren't so high on immuno-suppressants? it doesn't exactly sound like my idea of a fun vacation, much less a permanent move. but they'll like their new home, like me, surely -- they have to. come on, everybody likes me, right? just remember to trust and to be grateful. second chance at life. second chance at breathing. first chance with healthy lungs. last chance . . . ?

so many "lasts" in my life right now. last time my old lungs will ever leave the united states. last time i was home in colorado, among the mountains with the lungs that were born there. last day at work. last time i'm gonna cry about any of this, i promise. last time i'm gonna ask how long this waiting can possibly last. probably not the last time i'm gonna have to remind myself that i'm trying.

trying to live for today and plan for tomorrow. trying to ignore the hurt and worry in everyone's voices, the whispered conversations on the phone. trying to pretend like i understand everything, that i get what's happening to me and why. trying to just live and laugh and love and be with my puppy and keep up with my friends and not ruin my relationships because sometimes i just don't have the energy to respond to all those emails or the phone calls or even the voicemails and i'm sorry, i'm sorry, i'm so very, very sorry. trying to be upbeat and optimistic and trying not to let anything get me down, then trying to be kind to myself and really feel my emotions, even the negative ones. trying to breathe. trying to breathe. trying to just. fucking. breathe. already.

i just want the phone to ring. or not. maybe not. not yet, not tonight. but i do, i know i do. i'm ready for this, i need this. i'm just scared. everyone gets scared, they told me that. it's normal. i'm normal. except for the ways that i'm not, of course, which are really the most important things right now. transplant isn't normal. being 28 and being on the lung transplant list is not normal. but it's normal for us, normal in our world. i fit right in among the abnormal people, anyway.

it's nice to have a place.

2:53 now. 53 minutes from when i should have gotten the call and time to say goodnight.
goodnight CF, goodnight blog.
goodnight new york and goodnight dog.
goodnight treatments and O2.
goodnight, goodnight to all of you.


  1. I don't know you too well, but big hug from me too!

    It must be really hard to not focus on the transplant 24/7. I know it's hard for me and I just started this process.

    I know what you mean about not wanting to rehash everything with everybody and withdrawing from friends and such, but they will understand. When your through this and on the mend you will patch it all up, no doubt.

  2. hugs from all of us, piper. we love you!
    the ottawa beattys

  3. At this point in our lives, writing is probably one of the few cathartic things of the few things we still CAN do. And what a catharsis it is. It's too hard to be positive and upbeat all the time, knowing full well that if you let yourself really get down, failing to survive is inherent, but at the same time, ignoring your emotions, denying them, also means failure.

    It's a tightrope we walk, a fine balance, wobbly at times...all the time..but fuck if you don't do it beautifully.

    Thank you for sharing this blog. Your words could be my words.

  4. I totally know what you mean Piper l have been writing very similar things on my blog. i think the waiting game is the worest part of this transplant process.

  5. You will NOT miss your old lungs, I promise. It will be weird, but you will be happy! I got my call at about 12:30 AM. So, 2 AM sounds good to me! It was funny too because my sister, who lived at home at the time, was a bartender and used to call late sometimes if she was not going to be home etc. Well, THAT night, THAT call, I just KNEW! I knew when that phone rang what it was. I don't know how, but I woke up and I just KNEW! Sure enough, it was my call! Hang in there Cyster! Praying for you and keeping you in my thoughts daily.

  6. Hugs to you, and congrats on a fabulous stream of consciousness post- good to get your thoughts out there in whatever sloppy old way they come out!!