Saturday, November 26, 2011

The Big 3-"Oh! What a Ride!"

On the eve of my thirtieth birthday . . .

To My Family:

As an English major, a sometimes speaker, and a sort of writer, I'd like to believe that there are words for every experience, and for every emotion. What can I say to all you then but this: thank you, ever and always, for proving me wrong. Some things -- some people -- are quite simply beyond all words.

All of you are, individually and collectively, the most amazing, most inspiring, wisest, kindest, and funniest people I know. Thank you for the jokes that you have told, the strength that you have shown, and the love that you have given so freely and unconditionally. When asked recently what small advice I could offer to a new family struggling to raise a child with CF, I replied with the simple truth that I have learned from a lifetime spent watching all of you: that if we can all be proud of one another in our successes, and still manage to believe in each other in our failures, then we can move mountains -- even if it isn't always easy.

Most of all, thank you for making each and every day for the past three decades a gift and a privilege and a life worth fighting for. You taught me to to wonder, to ask, to explore, and to act. And then you taught me how to do it in style.

I admire you.
I love you.

I breathe you.

To My Friends:

A very smart guy once told me that, if given the choice, he'd rather collect friends than years in his lifetime. And as I approach thirty years of those wonderful, magical things called friendships, I think I'm finally able to appreciate what he meant. Because years themselves in exclusivity are hardly worth noticing. It's the people you meet in the minutes and the hours -- the ones who help you fill the days -- that truly matter.

Each and every one of you, whether you've been a part of my life for twenty-plus years or twenty-plus minutes, is a reason to smile. I'm so beyond grateful for the privilege of meeting y'all, for the chance to share in everything from late-night sleepovers to college-age drama to present-day, well . . . adventures.

It's been a hell of a ride so far, guys, and all the more so for having you each along for it. For all the extra years in my life now, however long that might be, I'm most excited for the chance to keep on sharing them with you.

To My Doctors, Past and Present:

I'm not quite sure how to go about thanking a group with which I've had such a complicated relationship. We've certainly been through a lot together, after all. Like a good made-for-TV movie, y'all have made me laugh, you've made me cry, you've made me roll my eyes, and you've made me want to simply walk away. Most importantly though, you've been the reason, more than anything, that I am able to believe in happily ever after. So here it is, after thirty years of sarcasm, challenge, and maybe just a hint of well-deserved teasing: thank you.

Thank you for the procedures and the medicines and the appointments that I never really wanted to go to until I needed them, and then they couldn't happen fast enough. Thanks for being patient with a sometimes impatient patient who admittedly hates to go in-patient. Thanks for talking to me and, even more so, for listening to me. Thanks for giving the best advice you knew to give, even when I didn't want to hear it. Thanks for not believing my bullshit. Thanks more than anything for always believing my truth. Thanks for admitting when you've been wrong and thanks for never rubbing it in my face when I was. Thanks for locking me up, for letting me go, and thanks, most of all, for never losing sight of my humanity -- or for allowing me to lose sight of myself.

Thank you, in short, for everything.

To The CFF:

Thank you, thank you, thank you, thank you. No, seriously guys: THANK YOU.

And last but not least . . .

To My Beloved Donor Bob:

So here we are about to turn thirty, dude. It's weird enough to do it once, so I can't imagine what it must be like to do it twice. But then again, you've always seemed to me to be exceptional. And believe me, I don't say that often about someone whom, when truth be told, I've never even met.

I think it was Aristotle who once said that true friendship is a single soul in two bodies. A single mind inhabiting two lives. It's easy to see why he said this -- the deep bond that comes from shared purpose, shared experience, and shared emotion across two lives and two existences is, without a doubt, a special thing. And finding other people with whom to share your life is, undeniably, an act worthy of even the most flowery language and classical, philosophical cliches.

But what about two entirely separate souls who meet somehow, through fate or God or just the sheer force of human kindness (to the extent we believe, of course, that those are separate things at all), and merge together to support one body? What of the moment when two purposes, two sets of experiences, two lifetime's worth of emotions, meet to engage in the single bodily act of existence -- to continue one life through the graciousness of another? What then, Aristotle? What's your fancy Greek metaphor for THAT awesomeness, huh?

Donor Bob, we may never meet in the traditional sense -- may never share a laugh or a handshake or even just a casual passing smile on the street -- but I promise from here on out to share my life, my body, and my existence with you, just as you have shared so willingly with me. I promise to think on you often, to live by your example of kindness (especially to strangers, which is always harder), and to laugh as much as I can for both of us. I promise to always be grateful for your gift without forgetting that I was, am, and will always be, a life worth saving. I promise to relax into our shared complexity as much as possible, and to spend as much time as I can in living, and not just in existing. You are not my soul, you are not my body, but you are, and always will be, my friend.

With love, thanks, and million moments left to go for all of you, beautiful people.


Saturday, November 5, 2011

The Puzzle People

Okay, before I get started here today, I want to make a very special introduction. This, beautiful breathheads, is my friend Allison. I'm sure some of you already know her, and for those who don't (yet), Allison is the gorgeous woman I wrote about a few months back when we discovered she was in need of a new kidney thanks to the anti-rejection meds she's been taking since her double-lung transplant. Several of you stepped up in a way that was nothing short of breathtaking and offered to get tested. Well, I'm delighted to announce that Ms. Allison has found her donor and is now chronicling the story of her journey to transplant #2 on her wonderful blog: "Life, Coffee, and Second Hand Organs." Please check it out and send her light on this fabulous new adventure. As I pointed out to her, she's well on her way to being like 1/3 of the way CF free: now she just needs a liver, pancreas, sinus, trachea, and intestinal transplant and we'll be good to go. Any offers?

Good luck, Alli-Cat. Your friends, and especially your "cysters", are cheering you on every second. And a huge shout out as well to your gorgeous friend and donor. We could not be more grateful.

For those of you who wrote in asking, no, needing a second organ isn't uncommon in CF transplants. Other than a lung retransplant as treatment for chronic rejection, kidneys seem to be at the top of the list when it comes to second "second chances." This is because the drugs taken for the original transplant are super hard on the kidneys, particularly prograf. Most people with lung transplants take two anti-rejection drugs: prograf and something else. The "something else" varies quite a bit, but the prograf is almost universal. And because lungs have a higher rate of rejection than other organs, we take quite a lot of the stuff. Add to that the fact that many post-transplant patients (particularly CFers, who still harbor infections and other grossness in our sinuses and the rest of our bodies) spend at least some of their life after surgery on heavy-duty IV antibiotics that can also be rough on the kidneys, and you're well on your way to understanding why this isn't exactly a strange situation. Some CFers and transplantees, of course, can also require other "second" organs. My friends Patti, Gary, and Laura have all had double-lung/liver transplants because of CF, while other diseases require heart/lung transplants. There's even extreme cases like this amazing woman, who is pretty much a walking testament to organ donation at this point.

For me, I think the further I get down this crazy journey with borrowed organs, the more in awe I become of the whole process. I remember when my pediatric CF doc first sat me down and told me that "every person with CF will eventually need a lung transplant." I thought he was nutso, frankly -- not because I didn't believe him that all people with CF would eventually reach end-stage, but because I just couldn't imagine the prospect of going to sleep and waking up with a my chest. My initial response was something along the lines of "hey, this isn't Frankenstein, dude. People don't just go 'til they're worn out and then replace the parts, do they?" And for years that's what transplant remained for me: this somewhat obscure process that all my doctors were talking about, but that seemed way too science-fictiony for me to ever imagine actually happening.

When I went on the list, of course, that attitude started changing. For one thing, that was when I started meeting other post-transplantees in earnest. Because confession time: up until about 2007, I was very active in the CF world from the standpoint of speaking for the CFF, participating in studies, and fundraising. I was far less active, however, in the actual CF community, mostly because I didn't really see how we could help each other. In an ironic way, transplant not only gave me the actual gift of life in the literal sense, but it also gave me a much deeper understanding of the more indirect gifts of living that we all give each other every day. It brought me closer to a community of people that I cherish and value now beyond all reason, it bound my pre-existing community of family and friends even tighter together, and it offered me a glimpse into the way one soul (or a whole collection of souls, in some cases) can choose to save another simply by making a choice and taking an action -- even if you never get to actually meet the person (or people) you're saving.

I'm approaching 30 now and (thankfully) still on my first second set of organs. I hope to keep Bob around for a very long time, and I also hope to keep it to just the two of us for as long as possible. But even as I write those words and give a little chuckle, I know I'm blessed to be a part of what just might be the world's largest "truth is stranger than science fiction" novel ever written. All of the recipients, the donors, the will-be donors, the family and friends who have given life through their grief, and all those who have seen a loved one saved by a miracle are testaments (and in my case, a living, BREATHING testament) to the power of human action and the amazing results that can grow out of one simple choice to make a difference. Better yet, we are proof positive of the fact that humans are humans; that at the end of the day we are all unique, all individuals, and -- at least in some ways -- all interchangeable. I once heard us called "the puzzle people" somewhere, and I loved it. Because what better way to show how we all fit together, even as we all have our own place?

Congratulations, Allison! I'm looking forward to knowing the new parts of you that will emerge from this latest adventure, and to (re)discovering the you we've always loved.

And to her wonderful donor: our gratitude is beyond words. You are quite literally a part of us now, and we couldn't be happier. Thank you so much for helping to complete our beautiful puzzle.