Friday, December 3, 2010

An Open Letter to Everyone I Love

Dear Beautiful People:

Hi again, everyone. This is Piper -- your friend, family member, (ex-)girlfriend, acquaintance, classmate, peer, colleague, student, teacher, or enemy -- writing just to check in and send a little message via this vast cyberspace universe we call the internet. The thing is, I really want to reach out to all of you. I guess because I am, in some ways, someone you might not have met before. And I want you all to know who I am and where I am now...even as I'm still discovering it myself.

First of all, I have to lead with what is quickly becoming my standard catch-phrase: thank you. Thank you for all the times you slowed down to walk with me or drove your cars right up to the doorways of restaurants so I wouldn't have to cross the parking lot. Thank you for pausing the conversation while I coughed, and thank you equally as much for resuming it quickly without any awkward silence when I was finally finished. Thanks for putting up with the treatment machines that took up too much space in our dorm room. Thanks for being in videos for the CFF and for pledging donations to my Great Strides walks. Thank you to everyone who came with me to the doctor just to keep me company, ever. I know that wasn't fun for you, no matter what you said at the time. Thank you for offering me a shoulder to cry on and for not always expecting me to cry. Thank you a million and one times over for never saying "are you sure you can do THAT?" unless it was really, really, really necessary. Thanks for listening. Thank you for telling me I was pretty when I looked way too thin, and thanks for understanding that sometimes eating that extra helping is not so much a privilege: it's just one more chore out of way too many. Thank you for being with me and teaching me so so much more than I could ever repeat here -- from basics like how to ride a bike to more advanced stuff like all the words to "Gangsta's Paradise" by Coolio. Thanks for not teasing me that I once listened to Coolio. Thanks for dragging me to all those concerts I didn't want to go to and for making me see that electronica just might be a valid form of music...maybe. Thank you for all the lessons you have yet to bestow, of which I am quite positive there are many.

In other words, just thanks to everyone. You have enriched my life beyond measure.

To those I have ever fought with, I also want you to know that I'm sorry. It's taken me 29 years (and counting) to realize that only really simple questions have easy answers. "Where's the milk?" comes to mind, or maybe "what's the approximate distance in light years from here to the sun?" -- boring stuff like that. Most things worth asking ("what's the best approach to balancing the budget" or "how the heck does my dog continue to gain weight when he's been on a diet for like a year and he's supposed to be a shih-tzu/yorkie mix, for crying out loud?!") are a little more complicated. So I am sorry -- not for voicing my opinion but for any time when I might have made it seem like yours wasn't worth hearing as well. That's not a fun way to have a conversation, and it's something I'm trying to work on, I promise.

Okay, so that's out of the way. Now on to the more exciting stuff.

This past year has sucked. I can freely acknowledge that fact now, much as it pains me to admit that an entire year of my life was, generally speaking, not a whole lot of fun. And that is painful. I feel a little bit cheated, honestly. I liked where I was and where I was going before this whole house of cards collapsed on top of me, and sometimes it's tough to look around at the rubble and say "huh, well at least it wasn't made of heavy rocks." Don't get me wrong, I do try to be positive, but I'm also willing to be realistic from time to time. And I would say that having one single solitary month with zero IV antibiotics in the past two years is a little sucky. It just wasn't very enjoyable, despite individual moments that were, of course, major exceptions (and most of those were due to you guys anyway, so you already know about them).

Right now, though, as I sit pounding these keys way too late at night despite the fact that I need to get up pretty early tomorrow, life decidedly does not suck. Not even close. In fact, I would venture to say that life right now is the opposite of sucky (which, fyi, is totally not to say that it blows). I just finished another round of IV antibiotics tonight and, yes, I do admit that there are still a lot of health-related issues going on in my life. I dare say there might always be a lot of health-related issues going on in my life, though, so honestly I'm not too torn up about the drama right now. But the thing I want to stress is that I feel so profoundly and totally different than I did last December 3rd. I feel, well, I guess one word for it might be "changed." Another might be "really f-ing lucky." You know, whichever one works for you.

There are, of course, the obvious differences. I can breathe -- that's a pretty big one. I do not, for the most part, do "treatments" anymore, aside from IVs and some nebs, neither of which are permanent fixtures in my routine by any means. I don't remember the last time I coughed so hard I threw up, but I know it was at least 6 months ago. I look somewhat different, too, as I have more color and am at least creeping my way toward a healthier weight. Oh, and I sound like an entirely new person. My "cough" now actually makes me laugh, that's how pathetic it sounds to me after that CF monster cough. So there are some very noticeable changes, and I like that -- it shows people how incredible transplant really is, and the importance of oxygen for everything from HR to hair growth.

There are also other, more subtle changes. People don't stare at me in public anymore, which you might not have noticed anyway but believe me -- I did! My dog really likes to cuddle up really close to me, whereas my breathing used to actually make him nervous, which kind of shows how amazing animals are when you think about it. I can stay up this late typing and know that I'll be okay tomorrow, even if I am a bit tired. That one is huge. Oh, and then there's the fact that I feel like I'm a little bit stronger.

Yeah, I said it. Sorry.

Let me be clear: I do not in any way, shape, or form believe that one has to have a lung transplant to be a strong person. Nor do I believe that everyone who has had a lung transplant is somehow miraculously stronger than those who have never had to have a transplant, or had any health problems at all. Frankly, I've always joked that what doesn't kill you, um, doesn't kill you. Anything else is just a bonus. From my experience, people generally rise to the occasion because they have to, not because they're just that amazing. And I, for sure, am a perfect example of this general rule. Which is why I'm so excited about this change and why I feel the need to tell you about it here.

In case you were wondering, here's what I mean by stronger:

-I care a lot more about people other than myself, and I work harder to put myself in their shoes. People have shown me so much love, light, and strength this past year (and before) that if I really stopped to tally the score I'd probably have a nervous breakdown. So I don't do that, but I do try as hard as I can to remember that a little kindness goes a long, long way. I've seen what positivity can do in this world, and I'd rather be a part of that than working against it. I want to be someone people want to be around, and I definitely want to enjoy being around myself. It's an ongoing process, to be sure, but I think I'm making progress.

-I'm happier with who I am, period. No, not because I'm healthier (I am, but I'm still sorting through a lot of issues, so it's not quite like I'm "healthy" all the time). Not because I'm doing more productive things with my time (I am decidedly NOT doing more productive things with my time, much as I enjoy the things I am doing). I think it's because I just figure I fought hard enough to save myself, and others fought right there along with me, so I must be worth saving. I must be worth loving, because people do love me. Okay, that's fine. It doesn't make me amazing, it just makes me human, and that makes me good enough. I'll keep working on my flaws and I'll just try to laugh at it all as I go.

-I know what I can survive, and it's a lot. Frankly, I am one tough chick, no joke. And this is, to be honest, a little surprising to me. I always knew I was assertive to a point, but I rarely considered myself actually all that strong. Strong beliefs, strong opinions, strong body, strong intellect...okay, maybe at various points in my life. But strong as a person? Eh, I had my doubts sometimes. The difference is that now I know, with total certainty, that it is going to take a monsoon of epic (you hear me, Tom? EPIC) proportions to knock my boat out of the water. I'm sure things will still hurt me (and, quite frankly, I think that's good, as I would never want to get so hard that I couldn't get my feelings hurt), but I have all the faith in the world that I will keep sailing. And that, eventually, the seas will calm and I will be happy and whole again -- and maybe even stronger, to boot.

I owe some of these changes to God. I owe some to circumstances, however you believe those come about in our lives. I owe some of them to myself and to the resilient spirit that I now know I posses. And I owe a ton of these -- most, I would say -- to you guys. To the people who have influenced my life and guided my rudder every bit of the way, even if the lessons you taught weren't always what I wanted to learn.

All of which is just to say this: the me that I was, the me that I am now, and the me that I will always be adores you. All of you -- past, present, and future. And some things, at least, will never change.

With love, light, and endless gratitude,


  1. Interesting that you talk about strength. I've wondered recently if it brings on a new strength to be opened like a clamshell and wired back shut with big tubes coming out everywhere.

    I really can't imagine.

    Then I can imagine.

    It's quite odd like that, because each new thing we do is a shock to the system, yet we so quickly adjust like rockstars.

    I, for one, am glad you're still around.

  2. Wait Wait listened to coolio :) just kidding!

    Very well stated as always. I get so uncomfortable when people call me a hero or make statements to that effect. I think much like you said most people are a product of their environment. Our having CF and now our Transplants have shaped us greatly. I still often ask am I worthy, why me and not some young one who has so much more to offer the world. I would give my life in a second so that a little one could fulfill their goals and dreams. My friends and peers argue that I have been giving my whole life and will continue to do so, and that maybe is why I was chosen to continue on, some karmic reasoning but who knows. But I do know that I am grateful to have met our group of CFers and Txers (sorry to label) and that it is a real gift to be able to talk to people about things that you really don't have to fully explain because we know, we get it. Others try and some come close, but no one really gets it unless you go through it.

  3. Yep, you are one tough chick & I appreciate you whole-heartedly!

  4. LOVE this! Your words made me smile, laugh out loud followed by coughing, of course and cry. You rock Cyster! It's your life, live it up! xoxo

  5. whoa, our blog posts are kind of similar. i hadn't read yours yet when i mine . . . i just don't want you to think i am a copy cat.
    great post - i totally get what you mean ... and you are a totally tough chick!

  6. I have watched you grow from a child, face unbelievable challenges and then conquer one by one all of those that tried to disrupt in the most devastating ways. You have been an inspiration to both me and my family your entire life. Have a great holiday, I will be in New York in January, let's hook up.

    Jack "the Rocket Man" Williams

  7. I love this line:

    "From my experience, people generally rise to the occasion because they have to, not because they're just that amazing."

    That being said...You ARE a very tough chick. Moreover, based on the general consensus, our short -but meaningful-back and forths, and all the things I've read that you've written, I can say - without ever meeting Piper "live and in living color" - that you, my dear........are a very wonderful person. To me, that's better than amazing. :-)

    Love and light all the way from the moon and back to you, distant friend.

  8. You are still one of the best writers I have ever read...Thank you.


  9. Wow, Piper. Thank you. You say what I always think, hope, and believe, yet am afraid to express. We all have CF to blame yet embrace, because it is this disease. This killer of kids that allows some of us to become adults. CF, for me, has shaped me and who I am. And I feel it has for all of us diagnosed at a young age. Being labeled "sick" your whole childhood, adolescence, young adulthood. Robbed of a freedom of knowing what or who our true self was/is. It is this disease! And this disease creates people like you, Piper. And many other true and old souls. Once we understand that we understand ourselves. Thank you for your words....