Monday, December 7, 2009

True Confessions: Cystic Style

Okay, I have a confession to make. A big one, really, because for me to confess this means that I have to admit that I'm not always a really positive thinker, that sometimes things just come together and kind of overwhelm me. But I think I can admit that much to you guys, at least, since you've read about so many of my highs and lows of this rollercoaster we call "life with CF," and at least some of you have probably even experienced a few of those peaks and valleys for yourself. So I think I can trust you all with my dirty little secret, even if it means taking a deep breath and just admitting it.

I cried this morning.

I cried, and it wasn't so much for the people we've lost recently (although they have been on my mind, of course) or for the addition of another new CF machine into my household (although that kind of blows too, no pun intended), or even for the fact that I'm frustrated with waiting and with these constant infections. It really wasn't about any of those things, even though any one of them would have been a good enough reason to shed some tears. But it wasn't about that; it was just that I'm really, really, really scared right now. Scared about transplant and about the unknowns that come with it, scared about big things like the recovery and infection, scared about little things like leaving my puppy when I go to the hospital, and really just. plain. scared. About everything, I guess.

And so I cried.

I didn't cry much really (although maybe I should have - a long and hard emotional release might be exactly what I need right now). It was really just a couple drops of water, appearing like dewdrops out of thin air, then disappearing just as quickly as they touched the warm sunlight of my cheeks. Just a few short breaths to regain some of my composure, a few quick moments of sadness and fear followed by a comforting snuggle with an ever-willing Shorkie. A moment of darkness and then a return to some semblance of light, of trust, of peace.

I do trust that lungs will come for me at the right the time. I trust that this transplant is part of a larger plan laid out by a power far wiser than I am. I trust that I will recover and I've made lists of all the amazing things I plan to do after my transplant. I plan to live, and I plan to cherish every second and every breath.

That doesn't mean that I don't cry, though.

I guess nothing in life is ever certain, and some things we just can't really ever fully prepare ourselves for. I know so many beautiful, strong people (CF and non-CF) who have faced transplants and other obstacles with heads held high, backs to the wind, and collars turned up against the cold. They've faced these challenges and they've made their own roads, and I admire each and every one of them for their courage and their grace in the face of such frankly scary moments.

And yet maybe every single one of these wonderful people was, in fact, hiding in their hearts the secret of their last mini-cry. Of that one moment when things became a little too much for them, and their smile broke for just an instant, their strength wavered ever so slightly, and a few renegade tears escaped to run down their very beautiful, and very human, faces. Maybe.

As for me, all I know is that I cried. And that right now, in the aftermath of my tears, I'm still feeling kind of deflated and just a little numb. Maybe that means it's not the best time to be blogging, or maybe that makes it perfect. And maybe I'll cry again later, when this hits me again in some way. Or maybe I won't.

I guess it'll just be my little secret.


  1. Oh Piper...I wish I was closer so I could give you a hug and offer up my shoulder. I would do anything for a magic want to heal your lungs so that "transplant" wouldn't even be a thought on your radar. Since I don't have that wand, I offer you my prayer, my faith and my love. I send all those your way every day. I love you, cousin.

  2. I've made lists for after transplant too! Eva wrote on her blog the other day that transplant is just the stepping stone. But its a damn big stone! And I'm scared too of how everything will go. Thinking of you!

  3. I'm so sorry hon. I'm not yet at a point where I need a transplant I know that is in my future though and that scares me, but I can't say that I know what you mean. Not yet at least. You're a very strong woman and I'm praying for you cyster!
    God Bless

  4. Congrats, YOU ARE NORMAL. :) :) :)

    You are super strong and crying doesn't take that away.

    In fact, a good cry can be incredibly healthy for mind and body.

    I can't imagine how much stress this must be for you - I just honestly can't imagine being in your shoes.

    Hugs to you.


  5. Hey there, Piper - it's Amy. I think about your bravery - and your humor, and your intelligence, and your fabulous style - all the time these days. I don't want to say stay strong, because sometimes you need to cry. I don't want to say everything will be better soon, because "soon" is hard to define.

    I do want to say that there are lots of us out here thinking of you, catching those virtual teardrops when they fall. Thinking about your puppy. Thinking about how lucky we are to know you. And, here's to hoping, all those thoughts will become one big magical shoulder, and any tears will have a place to land.

  6. piper you write so amazingly. i always look forward to reading your blog...and your secret is safe with me! :)

  7. I remember it being hard to imagine the surgery and NEW lungs being inside me.. frankly, it was hard to think about... After almost 2 yrs of waiting, and yet another hemo, I got scared and nervous that lungs just might not come. I kept repeating that the right lungs will come when it is right. I believed it, I trusted it.. and even after tx, when I start to doubt things, I know in my heart, the right lungs are with me, as I know they will be for you. It's hard to imagine how all these things will come together, but that day, when you get the call, you will feel surrounded by love and a sense of adventure to take that plunge... and peace will be in your heart, I know it!

    Hugs cyster!

  8. Hi Piper, I can't say too much in the way of helpful comments. But I can understand where you're coming from and think it's OK to be scared. Sending some {{{hugs}}} your way. ~Juliet

  9. Piper,

    I've done way more than cry-- I had one melt-down during a hospitalization after I'd waited about a year for lungs. It lasted the better part of a day. I had never been so scared in my life than that moment and I still don't exactly know why it was then. But, I'm still waiting, after two years, and I am glad that I've had time to go through so many emotions and thoughts about this journey to get new lungs...I completely believe that we will get lungs, dear, but waiting is such a process. Ugh! I feel it.

    And sometimes, I do cry knowing that very few people, even me, can't really help or understand my fears. But I do take advantage of the many people, even my littlest son, who wants to help and be there for me. Maybe, that's all we can do, when we face such unknown and fight our disease so hard. On a completely different note, thank you for your blog. It is really a joy to read. Praying for you, Kerry

  10. Crying is the best release for pain.

    Hugs cyster