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.

xoxo,
Piper

Sam, I Am

I've spent some time (but not nearly enough) on this blog telling you all about how awesome my family is. In case you haven't quite caught on yet, I'm fairly certain that without their unflagging support I would be off living in a ditch in some highly desolate area, clutching my (evil) home PFT monitor in one hand and mumbling "I don't need no stinkin' lung transplant" over and over under my breath while attempting to borrow IV supplies from the friendly junkie down the way. An exciting career choice, sure, but not one that I feel would be particularly productive for me at this point in my life. Suffice it to say, then, that support systems are key when it comes to preparing for a double-lung transplant, and I'm happy to report that I have been blessed beyond measure in that department.

There is, however, one critical member of my team who really never receives (or asks for) much recognition. This is a guy who goes by many names (or, rather, many nicknames) and wears many hats in our household. He's on full-time cuddle and distraction duty, pulls his shift as personal exercise trainer, and makes it his personal mission to make sure I replace my Pari cups on time by periodically chewing the old ones into a slobbery mess of unrecognizable plastic -- purely for my benefit, of course. He's also the guy who officially reached adulthood this Sunday by celebrating his landmark second birthday. Congratulations, Sammybear. You've come a long way, baby.


Yep, it's beyond doubt that Sampson forms a key part of Team Piper, and I guess that's hardly surprising given his sweetness, loyalty, and, well, really, really soft fur. As a friend told me the other day, "happiness is a warm puppy." Agreed.


What is slightly surprising, though, is how this little man came to join my squad in the first place. In august of 2008, I had just recently completed the vast majority of my evaluation for transplant. Told by the tx team that I was too healthy to be immediately listed but would need to be followed closely, I returned home, started this blog, and began the long (and ongoing) process of teaching myself how to wait (or, as was the case at that point, how to wait to wait). I entered the transplant odyssey cautiously optimistic, but also very much aware that it was the start of a new stage in my disease and in my life. And it was most likely this awareness that caused my to put my plan to get a puppy on the back burner for the time being. Because surely, I reasoned, it's far better to wait until after the major surgery that can't be scheduled in advance (and the waiting for the major surgery that can't be scheduled in advance) to make a major life decision like adopting a dog. After all, timing is everything in this game, right?

Right.

Fast forward two months to October 2008. I spent a beautiful day tooling around the Museum of Modern Art with a close friend and, upon leaving, we happened to see a small shih-tzu and his owner hanging around on the sidewalk. This led to a conversation about my decision not to get a dog right away, and also to my emphatic declaration that, if I were to get a dog, it "would definitely not be a shih-tzu!" (As an aside, I don't mind admitting that I suffered for years from PSTSD (Post Shih-Tzu Stress Disorder) thanks to a very aggressive and deceptively named little terror called "Puppy.") I figured that my authoritative tone and mature stance on timing settled the issue pretty conclusively: no dog right now, and no shih-tzu ever.

I adopted Sampson, the shih-tzu mix, the next day.



Yes, really.

Turn out that while I was boldly daring to set the course for my own life (or at least insofar as furry companions were concerned), God and my sister had other plans. And these plans apparently involved waking me up from my Sunday afternoon nap to rush up to the West Village, where my sister had already found and fallen in love with the puppy she pre-emptively took to calling her "nephew." My role in this play, it seemed, was simple: show up, adopt the dog, and welcome into my life a new era of chaos, housebreaking, chewed up medical equipment, and unconditional love.

In the slightly over one and a half years since Sampson joined my family and my support squad, I've finished my transplant evaluation, battled a blood infection and a seriously ridiculous port-removal saga, been actively listed for transplant, waited nine months on the list (and counting!), had over 15 rounds of IV antibiotics, and survived several dry runs and one crazy "damp run" for new lungs -- all with my amazing doctors, my incredible family, my awesome friends, and my wonderful puppy by my side.


Wow.

It's been a long journey so far, and I have every reason to believe that will get even more intense before it's over, but it has also been worth every mangled neb cup, chewed through power cord, xopenex rocket inhalers, and every moment of life and breath in between.


Happy birthday Sampson-bear!

- Posted using BlogPress from my iPhone

Birthdays and Cliches

There's an old cliche that claims that the more things change, the more they stay the same. Like most overused sayings, this one has more or less lost its meaning, at least when it comes to my own life anyway. Whenever some kind soul attempted to impart this particular piece of seemingly outdated wisdom on me I would simply smile, nod, and do my best to politely conceal my internal eyeroll. Because really, change is change, right? No need to get overly philosophical about the whole thing.

Tonight we celebrated my beautiful mother's undisclosed-number birthday (hint: she's older than me, which makes her at least 29). We did this by inviting a few friends here in NYC to a small but lovely little birthday dinner. And it might be worth mentioning that this dinner was held at the same restaurant we celebrated her birthday at last year, which was also the day she came to New York for a short visit and ended up leaving behind (temporarily) her husband, home, dogs, friends, and job for what is now a year-long trip and counting -- all for her daughter who suddenly needed more help dealing with end-stage cystic fibrosis.

Um, yeah, talk about a celebration of love.

I don't brag about my family often enough on this blog, honestly. I mean, sure, I might mention my father's crazy antics that keep us all laughing whenever he visits, or the fact that he's now racked up enough frequent flyer miles between Colorado and New York to take us all on a much-deserved vacation when this is all over. And I know I occasionally make reference to my sister's amazing talent, or the fact that she somehow manages to keep us (mostly) grounded even when we're stuck listening to drunk men in the local ER. I even think that I've touched on how grateful I am to my mom, who lives with me, helps me with errands and IVs and the boundless energy of my puppy (who we joke views her as his personal nanny), and accompanies me to every single appointment, even if it just means waiting in the waiting room for moral support. I say these things, of course, but I never really feel like I say them enough.

There wasn't a whole lot I could do today to make mom's birthday extra special. I just recently started a new course of IVs, which of course means I have an infection, and I spent most of the day coughing or sleeping, and trying to rest up for tonight. But I was able to go with her last night to the bakery to pick out some cakes (yes, she got two -- and I dare anyone to claim she's not entitled, although truth be told both were small and to share). I was able to put on a nice dress, wash my hair and make myself look somewhat pretty, and I was able to go out to a dinner that was all about her, exactly as it should be. In the grand scheme of things these small gestures don't feel like all that much for someone who everyday helps make sure I can breathe, get appropriate exercise, and have everything else I need to live as normal a life as possible under the circumstances. I know I could never repay that gift in a million years, but I'm happy that for tonight at least we were able to show mom a small piece of how amazing she really is.

And as for my gift for the evening, I think it came the second I looked around the table (in the same beautiful dining room we sat in a year ago tonight in what would become my mother's official "welcome to New York" dinner) and saw old Colorado friends, new NY friends, my sister, and my mother enjoying an amazing meal worthy of a one year anniversary and a older-than-28 birthday. Because if I had to surmise this past year in one single word it would probably be "change." We have struggled to find our footing, to hold onto our optimism and our values, and to stay one step ahead of the disease that is slowly upending our lives. And we did it all only to come full circle -- back to love, back to celebration, and back to the simple sharing of an awesome meal and special day with friends.

The more things change, indeed.

- Posted using BlogPress from my iPhone

They Say It's Your Birthday

It's my birthday too!

Wow, so okay 28 years. 27 years and 46 weeks after I was diagnosed and a full 10 years longer than the projected life expectancy for CFers at that time. 17 years after I got my first horse for Christmas, 15 years after the first time someone I had a crush on kissed me (eep!), and 12 years after I first got my driver's license and started tearing up the streets of Colorado. 10 years after my senior prom and the year I left home to move across the country, and 7 years after my 21st birthday, which we won't even begin to discuss here (although I can't resist noting that it spanned two major US cities). 6 years since I graduated and left Atlanta for "The Big Apple" and 3 years since I graduated again and left law school for "The Real World." Nearly two years since I first heard the word "transplant" applied to my lungs and 1 year and 1 month since Sampson joined my family. In other words, 28 years full of crazy, chaotic, amazing, memorable, and sometimes just a little bit over-the-top experiences. And the only thing I have to say to all that is what I've already said: wow.

Birthdays are always amazing things, and while I don't mean to steal anyone else's thunder, I think they're even more special when you live with a chronic illness. It's such a cool tradition to celebrate life and the day that we came into this world, and of course this year I feel like it's even more significant somehow. The truth is, though, that it's not just the 27th of November that's worth celebrating -- all those plain old regular days that make up the rest of life are pretty damn amazing too, when you stop to think about it.

Hopefully at some point during this 28th year (most likely on one of those plain days that happens to fall in between the birthdays) I'll get a call for a kind of "rebirthday" that I know will change my life in some new and surprising and hopefully wonderful ways. I'm so grateful for the past, but I'm also really looking forward to the many things I plan to add to that list of "lifetime milestones" with my new lungs. Every day of every year, for hopefully a long time to come.

So happy birthday to my awesome body for sticking with me through all the nonsense, and happy birthday to my mind for not giving up and going wholly crazy through the madness. Most of all happy birthday to my spirit, for proving itself this year to be just about the most resilient thing since the Timex watch ("takes a licking . . . "). I can't wait to push the envelope even further and see what new ways we can come up with to get into trouble together -- and with 365 opportunities a year, I expect some pretty amazing things.

Okay so how many days is it until your birthday, and how are you going to celebrate?