So I rearranged the top header of this blog a bit. It's the first time ever this blog has had anything other than text at the top. Let me explain.
The image now in the header is the lotus flower, taken directly from a plate I purchased in Turkey right before I got listed for new lungs. At the time, I wrote a post entitled "Love Among the Lotus Flowers" -- somewhat of a play on Robert Browning's "Love Among the Ruins", which you should totally check out if you're so inclined. He's way more eloquent than I am, but I digress.
Anyway, when I purchased the plate from which this image is taken, the Turkish painter who made these plates by hand pointed out to me that the lotus was highly significant in his town's culture. He told me about the way this particular flower lives in water, folding itself up at night and reopening each morning with the sun in a type of symbolic rebirth. At the time I was suffering both from undiagnosed sepsis from a port-a-cath infection (and about to come home to the scariest hospitalization of my life to date, hands down) and from a severe case of preemptive nostalgia. I was acutely aware that this trip to Turkey would be my last "vacation" at all (and certainly my last time in Europe) with the lungs I was born with. I thought about it constantly, in fact: "this is the last time MY lungs will get on an airplane"; "this is the last time MY lungs will visit Europe"; "this is the last time MY lungs will get spit on by a camel" (oh yeah, it happened). Basically it was just one weird string of "this is the last time..." moments. And of course, underlying all of that premature sense of loss was the unspoken addition to my "last time" statements, which was my own unacknowledged awareness that Turkey might well have been MY last family vacation, my LAST visit to Europe, MY last chance to pretend for a few days at least that everything was totally fine. I wasn't focused on that, of course -- in true Piper style I decided to transfer all of that emotion onto something replaceable like, oh, say a vital organ -- but that sense of urgency was definitely there, and I was searching for signs throughout the trip to help reassure myself that all these potential changes in my life, those acknowledged and those best left unspoken, were going to be okay.
The story about the lotus flower jumped out at me as probably the best darn "sign" I could have hoped for. Here was a story of rebirth and healing, combined with a flower known throughout several cultures as a symbol of good luck. The colors on the actual plate are vibrant and alive, and the attention to detail in the painting makes me wish I had enough patience to master that kind of skill. It is truly a work of art for which, in my case at least, the overinflated tourist price seemed like a completely fair bargain.
In the two years since bringing home my precious lotus flower, I have come to a couple of conclusions. The first of these is that having new lungs does not mean that I will never again be "Piper" in the way I feared. True, I lost a part of myself, and think I'll always miss it on some level, however rotten it was to live with. And also true that I was lucky. I was able to release my old lungs into the world outside of myself and welcome in a new (to me) gorgeous pair without some of the scary complications that can, in reality, go along with that. But the end result, I'm happy to say, is that I feel like myself, again. And also that I feel like myself, for maybe the first time. I feel like I'm able to fully access the person I was before my surgery (both my strengths and my weaknesses, my virtues and my vices seem well enough and alive in this new, renewed self of mine), but I am also able to do things that would never have been possible with my CF lungs. Simple things. Even silly thing, really, like lying flat on my back on laughing extra hard at someone's joke and not stopping until I darn well feel like it. I've realized that letting go does not always mean losing one's connections to the past, or to the future.
I've also learned that there's more to life than symbols and signs, though I don't doubt that they can be helpful, and even necessary. They were for me, after all. One glance through my sketch pad from my pre-transplant waiting period shows multiple depictions of the lotus, all in different colors and sizes and intensities. I'm glad I had that image to hold on to, for sure. Looking back at all of that, I can still appreciate the lotus for all that it was in my life during a difficult period, and for all that it is now -- which is to say a very pretty plate. I can remember my conversation with that lovely Turkish man and artist and I can smile, knowing that he and I shared something of value that he might not have even known he was offering when he made his highly effective sales pitch. I wonder now what I would say if I could take Donor Bob on a trip and go back to that workshop, find the new plate of the same general design that I am sure replaced my own, and sit there pondering the real meaning of rebirth: replacement breathing on replacement; old eyes staring at a new rendition of a familiar depiction; old design impressing itself upon a new pair of lungs set inside a familiar body.
This blog, like everything else in my life right now and hopefully always, is a constantly evolving feature. As I move from a world of documenting my journey waiting for new lungs, to a world of documenting the joys, sorrows, fears, and triumphs of living with them, and through to a world of documenting life not beyond transplant -- not ever beyond transplant, or beyond any other part of my personal history -- but life with transplant, I thought it was time, perhaps, for one more sign. So I offer you the lotus flower, its colors slightly faded from a journey across cultures, oceans, time, and body parts, to symbolize not only rebirth and second chances, but the fragility, beauty, mystery, and downright miracles that can sometimes come from learning how to let go within the darkness.
And how to blossom with the sunshine.
About Me
- Piper
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
Monday, September 19, 2011
Thursday, September 15, 2011
You Probably Think This Blog is About You
Today I received a package in the mail, and when I opened it up I found a few copies of American Way Magazine, the official magazine of American Airlines, for those of you who keep your feet on the ground most of the time. (Take it from me: it's a great magazine for those of us who like to walk around with our heads in the clouds!) American is also the amazing sponsor of the AA Celebrity Ski event benefiting the CFF. And I have to be honest here, I knew this was coming, but it was still a huge delight to open the glossy pages and see this article:
The Fight of Their Lives
Wowza, right?
Okay, I'm not gonna lie: it's always fun to see yourself in print. That part of it was great, and I'd be a fraud if I didn't admit that I went squealing around my apartment and basically called/texted/emailed/sent-out- (lung friendly) smoke-signals-to every single person I knew to make sure everyone was reading this article. That was, truth be told, the very first thing I did when the darn thing hit my greedy little hands.
After my vanity died down a little bit though, I decided to sit down and actually read the article. So I opened a copy and started to digest the words, and the meaning, behind the story. I read about two of my very best friends from Colorado, my former neighbors who also have this disease and who are living amazing lives every single day despite its nasty grip on their routines. I read about their parents, two wonderful people I have known my entire life who would move mountains for their three daughters, and who actually do so in small ways all the time. I read about the love that family shares for each other, which came pouring off the pages in every sentence. I read about my own story. I remembered. I marveled at the way the article paints me -- paints all of us -- as brave, when most of the time I feel somewhat overwhelmed and fragile. I was flattered that someone would see us in that way. I was amazed that the words rang true and that I could suddenly, at some level, recognize that spirit within myself.
But most of all, guys, I was humbled.
It is no secret whatsoever that I am this community's biggest fan. Without sounding like more of a sap than I already do on a daily basis, I really love all of y'all. You guys inspire me. You encourage me. You remind me of why I'm here and why I'm still fighting -- why I will work to kick this crazy little monster's butt until the day it kicks mine. You make me think. You make me wonder. You make me crazy. You make me cry. And you make me laugh. More than all of that, though, you make me super-duper-uper proud. Every day, every minute, and every breath.
Which brings me to the thing that I like best about this article (other than the fact that I'm wearing SUNO in the pictures!). What I like most is that this article isn't really about me, after all. It isn't even about Sam and Libby, although it probably should be. And it isn't about CF, because goodness knows I'm not gonna let that bugger steal any of the spotlight. Nope, it isn't about any one of those thing, or at least not in exclusivity. Because this article, guys, is all about us.
If there's one thing I've learned from all of you guys out there it's that it takes a village. And preferably in an ideal world, that village would be chock full of thinkers, lovers, fighters, dreamers, learners, teachers, motivators, storytellers, writers, players, and doers. You guys embody that village for me, and that, without exaggeration, is the one and only reason I am still around to be featured in this story (or that I have the breath to shriek at its arrival!). I am alive quite literally because of the kindness of the beautiful souls who gave me these lungs, but it is equally because of my own village of friends, family, doctors, CFers, role models, confidants, CFF staff and volunteers, sponsors like American, and readers that I am even typing these words. Or, to put it another way, it's because of you.
What the article really gets at, from my perspective, is that people with CF are fighters. That we overcome challenges, and that more often than not we do it with a smile on our faces. It's about how we live each day of our lives with this disease, knowing it's there, understanding what it means, but still doing some pretty kick butt things while we're here. And that isn't, of course, a trait unique to CFers -- though it does seem pretty much rampant in the CF community so far as I can see. It's really about how any group can rally together and realize its strengths and its challenges through the individual and collective actions of its members. It's about how you, me, and all of us are finding new ways to live better even when things can seem a little crazy, overwhelming, or just downright hard. And, of course, it's about life. About living it, about embracing it, and about sharing it.
I think my favorite moment in reading the article was coming across the quote toward the end, where I said in a fit of inspiration that "I didn't want anyone using this disease as an excuse not to live life." I still believe that statement wholeheartedly, but I've also come to realize that the person I was talking to when I said was myself. And the community I have to thank for showing me that there is another, better way, is composed, in all honesty, of all of you. There is a better way to live with this disease, and more often than not, that way is simply to find your village(s) and to embrace them with everything you've got -- and then, if you're truly one of the lucky (and brave) ones, to learn to be yourself within that larger whole.
With love, light, and eternal gratitude to the village that sustains me always,
xoxo,
Piper
The Fight of Their Lives
Wowza, right?
Okay, I'm not gonna lie: it's always fun to see yourself in print. That part of it was great, and I'd be a fraud if I didn't admit that I went squealing around my apartment and basically called/texted/emailed/sent-out- (lung friendly) smoke-signals-to every single person I knew to make sure everyone was reading this article. That was, truth be told, the very first thing I did when the darn thing hit my greedy little hands.
After my vanity died down a little bit though, I decided to sit down and actually read the article. So I opened a copy and started to digest the words, and the meaning, behind the story. I read about two of my very best friends from Colorado, my former neighbors who also have this disease and who are living amazing lives every single day despite its nasty grip on their routines. I read about their parents, two wonderful people I have known my entire life who would move mountains for their three daughters, and who actually do so in small ways all the time. I read about the love that family shares for each other, which came pouring off the pages in every sentence. I read about my own story. I remembered. I marveled at the way the article paints me -- paints all of us -- as brave, when most of the time I feel somewhat overwhelmed and fragile. I was flattered that someone would see us in that way. I was amazed that the words rang true and that I could suddenly, at some level, recognize that spirit within myself.
But most of all, guys, I was humbled.
It is no secret whatsoever that I am this community's biggest fan. Without sounding like more of a sap than I already do on a daily basis, I really love all of y'all. You guys inspire me. You encourage me. You remind me of why I'm here and why I'm still fighting -- why I will work to kick this crazy little monster's butt until the day it kicks mine. You make me think. You make me wonder. You make me crazy. You make me cry. And you make me laugh. More than all of that, though, you make me super-duper-uper proud. Every day, every minute, and every breath.
Which brings me to the thing that I like best about this article (other than the fact that I'm wearing SUNO in the pictures!). What I like most is that this article isn't really about me, after all. It isn't even about Sam and Libby, although it probably should be. And it isn't about CF, because goodness knows I'm not gonna let that bugger steal any of the spotlight. Nope, it isn't about any one of those thing, or at least not in exclusivity. Because this article, guys, is all about us.
If there's one thing I've learned from all of you guys out there it's that it takes a village. And preferably in an ideal world, that village would be chock full of thinkers, lovers, fighters, dreamers, learners, teachers, motivators, storytellers, writers, players, and doers. You guys embody that village for me, and that, without exaggeration, is the one and only reason I am still around to be featured in this story (or that I have the breath to shriek at its arrival!). I am alive quite literally because of the kindness of the beautiful souls who gave me these lungs, but it is equally because of my own village of friends, family, doctors, CFers, role models, confidants, CFF staff and volunteers, sponsors like American, and readers that I am even typing these words. Or, to put it another way, it's because of you.
What the article really gets at, from my perspective, is that people with CF are fighters. That we overcome challenges, and that more often than not we do it with a smile on our faces. It's about how we live each day of our lives with this disease, knowing it's there, understanding what it means, but still doing some pretty kick butt things while we're here. And that isn't, of course, a trait unique to CFers -- though it does seem pretty much rampant in the CF community so far as I can see. It's really about how any group can rally together and realize its strengths and its challenges through the individual and collective actions of its members. It's about how you, me, and all of us are finding new ways to live better even when things can seem a little crazy, overwhelming, or just downright hard. And, of course, it's about life. About living it, about embracing it, and about sharing it.
I think my favorite moment in reading the article was coming across the quote toward the end, where I said in a fit of inspiration that "I didn't want anyone using this disease as an excuse not to live life." I still believe that statement wholeheartedly, but I've also come to realize that the person I was talking to when I said was myself. And the community I have to thank for showing me that there is another, better way, is composed, in all honesty, of all of you. There is a better way to live with this disease, and more often than not, that way is simply to find your village(s) and to embrace them with everything you've got -- and then, if you're truly one of the lucky (and brave) ones, to learn to be yourself within that larger whole.
With love, light, and eternal gratitude to the village that sustains me always,
xoxo,
Piper
Tuesday, August 30, 2011
Back to School
I received an awesome email today.
Our good friends and great CF supporters over at Abbott Pharmaceuticals have announced their winners for the 2011 CFCareForward Thriving Student Scholarship. The winners (both undergraduates and graduates) will each receive a $2,500 scholarship to continue reaching their educational goals and kicking CF's butt. And, as far as I'm concerned, that's actually some of the best news ever, for a couple of reasons:
1) I know several of the winners in both categories, and I can say with absolute certainty that they are truly deserving of this prize. Congratulations to all of you from the bottom of my heart!
2) These wonderful students and students-to-be are now eligible for an even bigger prize of $19,000. Better yet, WE (as in all the members of the CF community, including every single one of you) get to decide the winners of this extra bonus prize! One Thriving Undergraduate and one Thriving Graduate Student will be selected from among the general winners, and it's up to us to help make that selection.
It's my honor to write about this contest and to support the truly awesome winners of this scholarship. As some of you might know, education is hugely important to me. The CF community is hugely important to me. Making sure that each and every person -- regardless of circumstances, physical traits, disease status, or other so-called "disability" -- knows that he or she is capable of achieving amazing things is unbelievably, incredibly, and (I'll say it again) HUGELY important to me. The fact that these CFers are out there pushing themselves mentally and physically to achieve their educational goals is both inspiring and brave. The fact that you and I have the chance to help them in this pursuit is just the icing on Abbott's already very generous cake.
Please take a moment to visit the CFCareForward Scholarship Home Page and read up on all of these phenomenal individuals. Then do your part and cast your vote for one undergraduate and one graduate student to win the Thriving Student prize of $19,000 toward their educational goals. The contest will remain open until September 30, 2011. You can vote in one of three simple ways:
A heartfelt thanks to Abbott Pharmaceuticals for their continued dedication to bettering the lives of CFers through treatment, education, support, and exceptional programs like this one, as well as to all those who applied for the 2011 CFCareForward Scholarship.
Lots of love, light, and learning to all of you, beautiful people.
Our good friends and great CF supporters over at Abbott Pharmaceuticals have announced their winners for the 2011 CFCareForward Thriving Student Scholarship. The winners (both undergraduates and graduates) will each receive a $2,500 scholarship to continue reaching their educational goals and kicking CF's butt. And, as far as I'm concerned, that's actually some of the best news ever, for a couple of reasons:
1) I know several of the winners in both categories, and I can say with absolute certainty that they are truly deserving of this prize. Congratulations to all of you from the bottom of my heart!
2) These wonderful students and students-to-be are now eligible for an even bigger prize of $19,000. Better yet, WE (as in all the members of the CF community, including every single one of you) get to decide the winners of this extra bonus prize! One Thriving Undergraduate and one Thriving Graduate Student will be selected from among the general winners, and it's up to us to help make that selection.
It's my honor to write about this contest and to support the truly awesome winners of this scholarship. As some of you might know, education is hugely important to me. The CF community is hugely important to me. Making sure that each and every person -- regardless of circumstances, physical traits, disease status, or other so-called "disability" -- knows that he or she is capable of achieving amazing things is unbelievably, incredibly, and (I'll say it again) HUGELY important to me. The fact that these CFers are out there pushing themselves mentally and physically to achieve their educational goals is both inspiring and brave. The fact that you and I have the chance to help them in this pursuit is just the icing on Abbott's already very generous cake.
Please take a moment to visit the CFCareForward Scholarship Home Page and read up on all of these phenomenal individuals. Then do your part and cast your vote for one undergraduate and one graduate student to win the Thriving Student prize of $19,000 toward their educational goals. The contest will remain open until September 30, 2011. You can vote in one of three simple ways:
- Online at www.CFCareForwardScholarship.
com - By text message at 30364
- Via toll-free phone numbers at: 1-888-305-9808 (Thriving Undergraduate Student) and 1-888-306-9683 (Thriving Graduate Student)
A heartfelt thanks to Abbott Pharmaceuticals for their continued dedication to bettering the lives of CFers through treatment, education, support, and exceptional programs like this one, as well as to all those who applied for the 2011 CFCareForward Scholarship.
Lots of love, light, and learning to all of you, beautiful people.
Monday, August 22, 2011
A Brief Letter to a Wonderful Soul
To my beautiful cousin:
I'm not exactly sure I know how to this write this. After all, I'm sure you understand that the one thing my life experience growing up never taught me to be ready for was the death of my so-called "healthy" peers, friends, loved ones, and family members. If I had been asked at ten years old what I would say to you after your passing at 29, I would have thought they had the roles reversed. I would have been ready for the question the other way around -- would have probably been somewhat blase about it all and even curious to hear your answer -- but I would never have guessed that it would ever come down to this. To me sitting here, writing this, and you somewhere out there, hopefully receiving it. Which is why I have to be honest here: this is not something I planned on, and it is not something I know how to do well.
I'm not sure how to say goodbye to someone I hadn't seen in so long, for example, but who I thought about literally more often than some of the people I talk to on a regular basis. It doesn't seem fair that after all that time apart we should have denied at least some form of a reunion here on earth, especially when I consider the fact that I talked about you to so many people. Seriously, dude, you should have heard how much I bragged about you to people you had never even met. You would have laughed at me, I know it. Would have smiled at the thought of me strutting around the manicured quads of my southern university, stopping to tell pretty much anyone who would listen about how my awesome cousin back in California gave his class graduation speech in sign language. Would have thought it was amusing how the simple fact of knowing (and being related to) you made me interested in learning more about the deaf community. Would hopefully have been touched by the fact that I felt connected to you, even across so many miles and so many memories. Would certainly have enjoyed the fact that I could never again watch "Seinfeld" without thinking of you.
I don't like having to let you go, dude. I don't like thinking of you as not here. I know how much you were loved and how much you did with your short life, and I just wish it could have longer. But I guess in this sense, at least, I am prepared. Because one thing I do know, cousin, is that life is sometimes way too short, and that being a great person, having a lot to offer, making a huge impression on everyone you meet -- none of that is insurance against unfairness. So I know better, by now at least, than to spend too much time wishing that you were still here, or that I could simply hop a plane to reconnect and erase the lifetime's worth of experiences between us. I know instead that I have to wish you well on the next part of your journey, whatever that entails, and that I have to send my love with even more strength and energy now to reach you. But I also know that it is worth it. I know that where you are is peaceful, and I know that you deserve every single little bit of that, and so much more.
For what it's worth, my friend, I don't think I could ever go long without thinking of the laughs and the lessons and the light you gave to me. Like the fact that there is so much out there beyond CF that we have to fight -- that there are so many other things that can take a life too young, and that there is no such thing as competitive suffering. We are all in this together, regardless of circumstances, and I will never, ever forget that.
Most importantly, though, I want to thank you for helping to show me that there are many types of beauty in this world, just as there are many different ways to express it. Thanks for showing me that sometimes obstacles in the traditional sense are no obstacles at all, but simply the things that make us special. And thanks for proving time and time again that true communication between two people goes way deeper than just the words we speak or the way we choose to hear them. If I could do one for thing for you it would be this: that I will promise to stick it out down here for as long as I possibly can, and that I will carry your message with me for anyone who will listen, however they happen to do so.
And if I have to be at least a small part of your continued life down here for just a little while, well, then you can be my ears up there. Because it might not be the way that anyone would have imagined this picture looking 29 years out, but I promise you this, dear cousin:
It will be beautiful.
With all my love and gratitude,
Piper
I'm not exactly sure I know how to this write this. After all, I'm sure you understand that the one thing my life experience growing up never taught me to be ready for was the death of my so-called "healthy" peers, friends, loved ones, and family members. If I had been asked at ten years old what I would say to you after your passing at 29, I would have thought they had the roles reversed. I would have been ready for the question the other way around -- would have probably been somewhat blase about it all and even curious to hear your answer -- but I would never have guessed that it would ever come down to this. To me sitting here, writing this, and you somewhere out there, hopefully receiving it. Which is why I have to be honest here: this is not something I planned on, and it is not something I know how to do well.
I'm not sure how to say goodbye to someone I hadn't seen in so long, for example, but who I thought about literally more often than some of the people I talk to on a regular basis. It doesn't seem fair that after all that time apart we should have denied at least some form of a reunion here on earth, especially when I consider the fact that I talked about you to so many people. Seriously, dude, you should have heard how much I bragged about you to people you had never even met. You would have laughed at me, I know it. Would have smiled at the thought of me strutting around the manicured quads of my southern university, stopping to tell pretty much anyone who would listen about how my awesome cousin back in California gave his class graduation speech in sign language. Would have thought it was amusing how the simple fact of knowing (and being related to) you made me interested in learning more about the deaf community. Would hopefully have been touched by the fact that I felt connected to you, even across so many miles and so many memories. Would certainly have enjoyed the fact that I could never again watch "Seinfeld" without thinking of you.
I don't like having to let you go, dude. I don't like thinking of you as not here. I know how much you were loved and how much you did with your short life, and I just wish it could have longer. But I guess in this sense, at least, I am prepared. Because one thing I do know, cousin, is that life is sometimes way too short, and that being a great person, having a lot to offer, making a huge impression on everyone you meet -- none of that is insurance against unfairness. So I know better, by now at least, than to spend too much time wishing that you were still here, or that I could simply hop a plane to reconnect and erase the lifetime's worth of experiences between us. I know instead that I have to wish you well on the next part of your journey, whatever that entails, and that I have to send my love with even more strength and energy now to reach you. But I also know that it is worth it. I know that where you are is peaceful, and I know that you deserve every single little bit of that, and so much more.
For what it's worth, my friend, I don't think I could ever go long without thinking of the laughs and the lessons and the light you gave to me. Like the fact that there is so much out there beyond CF that we have to fight -- that there are so many other things that can take a life too young, and that there is no such thing as competitive suffering. We are all in this together, regardless of circumstances, and I will never, ever forget that.
Most importantly, though, I want to thank you for helping to show me that there are many types of beauty in this world, just as there are many different ways to express it. Thanks for showing me that sometimes obstacles in the traditional sense are no obstacles at all, but simply the things that make us special. And thanks for proving time and time again that true communication between two people goes way deeper than just the words we speak or the way we choose to hear them. If I could do one for thing for you it would be this: that I will promise to stick it out down here for as long as I possibly can, and that I will carry your message with me for anyone who will listen, however they happen to do so.
And if I have to be at least a small part of your continued life down here for just a little while, well, then you can be my ears up there. Because it might not be the way that anyone would have imagined this picture looking 29 years out, but I promise you this, dear cousin:
It will be beautiful.
With all my love and gratitude,
Piper
Friday, August 19, 2011
Be Unbroken
On the evening of June 11th, 2010, I sat munching on a three-course dinner at a four-star NYC restaurant with my mother, father, and sister. The food was wonderful and easy to swallow; it was just too bad the same couldn't be said for the mood or the conversation. My family was, to put it mildly, a little bit distressed. A couple of days earlier we had received some disheartening news from one my doctors, and I was fairly certain that we were in for at least another month or two on the waiting list for new lungs. Another month or two of keeping my life "on hold", of living with ravaged lungs, of seeing the stress and worry in my loved ones' eyes. Another month of two of gasping for breath. Another month or two of hoping for a miracle...and of praying for survival.
Um, yeah, did I mention we were just a teeny, tiny bit upset that night?
Of course, many of you know the rest of the story from that evening. You know the part about how, just as our check arrived, my phone started to ring and the tell-tale number flashed up on my caller ID. You might have heard about how we rushed out the door of the restaurant, my dad sprinting for the nearest cab, my mom already on her phone to some of our nearest and dearest. And you may even remember the pictures of all 4 of us sitting in the admissions waiting room at my hospital, proudly displaying our "new lungs" t-shirts and looking pretty stunned to be there. We were jaded from too many dry runs and near misses, and we were none of us exactly sure what to expect that evening. That we would end up "meeting" my beloved Donor Bob in the early hours of June 12th, 2010, was almost more than we would have ever dared hope.
Yes, many of you know the story because we were blessed to have so many wonderful followers out there from so many different walks of life. Then again, you might not know quite as much about that evening as you think you do. Because the part of the story that you might not have heard is how much I cried.
As soon as I got the call I ran down to the bathroom of the restaurant and locked myself inside, where I quickly turned on the sink to make some background noise. I knew my family was waiting for me outside the door, so I made it quick. I looked straight in the mirror, saw the terrified, overwhelmed, exhausted face staring back at me -- and burst into tears. Not because of what I saw there, but because I knew I would likely never see that face again. I cried, in other words, not for the miraculous blessing I was about to receive, but for the wonderful thing (and yes, my lungs were wonderful, in their own way) that I was giving up. I cried for the part of myself that I was losing.
My father recently had a discussion with a wonderful CF doctor that my family has known and trusted for years and years and years. (Note the number there: I put in three because I'm almost 30 -- yikes! Who'd have thunk that, right?) This highly trained physician and researcher mentioned to dad that, at least in his experience, most transplant patients have an emotional element to their surgery that isn't really addressed or spoken of, or at least not super often. He compared it to the PTSD often seen in people returning from conflict or war -- basically the sense of having been changed by the experience, and the crises of faith or identity that can sometimes go hand-in-hand with an important and life-altering event. I'm sure there's a more technical description for all of that (and PS, if you have one, please share it!), but for my purposes here it's enough to know that it can simply be hard, on a lot of levels.
My first conscious thought after surgery was that this was going to be difficult. It wasn't so much the physical pain that was a problem -- I expected all of that, and more -- but the strange feeling I had of suddenly being out of control. As silly as it sounds, I had an immediate sense of "missing" my old lungs. They were little brats by the end there, sure, but they were brats that I knew how to discipline, knew how to coddle, and knew how to live with. All the new medicines and machines and doctors and surroundings confused me, even after I came out of my ICU madness (and for the record I was pretty bad in there -- they really shouldn't let people with law degrees get major surgery). For a long time after the operation I had a very unsettling tendency to burst into tears at random moments. And sure, probably a fair amount of that emotion was drug-induced or pain-related, of course, but I think there was something more to it as well. Weird as it is to admit, and certainly to type and record here for the duration of this blog, I think I felt a little, well...I guess the word would be lost. People around me were celebrating, they were grateful, they were "done." They wanted me to talk about how much better I felt, and how happy I was, and in a way all of that was completely reasonable. But there was also another part of it for me. I felt like maybe there was going to be more to this whole transplant thing than simply learning how to breathe again and then just getting on with it. Or, to put it another way, I suddenly realized that it wasn't going to be all "hey, cool, new lungs, new breath, new life. Bye, mom, and have fun back in Colorado! Thanks for the prayers, everyone. See you all when I win my Nobel Prize!"
Um, yeah, not so much.
Don't get me wrong, guys. I don't want anyone to misread my message here as a major Debbie Downer moment. I am thrilled and grateful beyond my wildest dreams to have been given this chance at life with new lungs. I am firmly and completely in support of transplant, for those who think it's the right choice for them, and I am 100% certain that I made the right choice. I love and respect my doctors, trust that I am getting awesome follow-up care, and count my lucky stars daily for all the support I received (and continue to receive) from all of the beautiful people in my life. To say I am blessed would be like calling the Empire State Building "tall" -- it just doesn't do the real thing justice.
That said, I was really intrigued when my dad told me about this doctor's perspective. He knows what he's doing, and he's worked with a lot of different CF patients of various ages. His observations about stress, trauma, and transplant certainly won't hold true in every case, of course, but I think I'm ready to admit that they really did ring true for me. Despite all the wonder and the beauty and the blessings and the crazy awesome stressful happy unfuckingbelievable madness of my story, I think it's fair to say that there is a little something of me that I still think of as missing. It's maybe just something that I am learning, however slowly and however different it may end up looking, to rebuild.
And so tomorrow night my wonderful Godmother is taking me out for a small celebration, to ring in 14 months of this new(ish) existence in style and to toast the start of new things. Although I am still on IV antibiotics and still struggling with certain aspects of this process, I am also starting -- again, however slowly -- to face my own reflection, even if it looks just a tiny bit different now. And as part of that moment, we will go back to the restaurant where it all started. Or maybe where it all ended, depending on your perspective. Because I want to go back there. Because I need to find my way back, no matter how corny or dramatic it sounds. Because I am ready to move forward -- whatever that means. And because I am always, eternally and forever, beyond grateful.
For all of it.
Um, yeah, did I mention we were just a teeny, tiny bit upset that night?
Of course, many of you know the rest of the story from that evening. You know the part about how, just as our check arrived, my phone started to ring and the tell-tale number flashed up on my caller ID. You might have heard about how we rushed out the door of the restaurant, my dad sprinting for the nearest cab, my mom already on her phone to some of our nearest and dearest. And you may even remember the pictures of all 4 of us sitting in the admissions waiting room at my hospital, proudly displaying our "new lungs" t-shirts and looking pretty stunned to be there. We were jaded from too many dry runs and near misses, and we were none of us exactly sure what to expect that evening. That we would end up "meeting" my beloved Donor Bob in the early hours of June 12th, 2010, was almost more than we would have ever dared hope.
Yes, many of you know the story because we were blessed to have so many wonderful followers out there from so many different walks of life. Then again, you might not know quite as much about that evening as you think you do. Because the part of the story that you might not have heard is how much I cried.
As soon as I got the call I ran down to the bathroom of the restaurant and locked myself inside, where I quickly turned on the sink to make some background noise. I knew my family was waiting for me outside the door, so I made it quick. I looked straight in the mirror, saw the terrified, overwhelmed, exhausted face staring back at me -- and burst into tears. Not because of what I saw there, but because I knew I would likely never see that face again. I cried, in other words, not for the miraculous blessing I was about to receive, but for the wonderful thing (and yes, my lungs were wonderful, in their own way) that I was giving up. I cried for the part of myself that I was losing.
My father recently had a discussion with a wonderful CF doctor that my family has known and trusted for years and years and years. (Note the number there: I put in three because I'm almost 30 -- yikes! Who'd have thunk that, right?) This highly trained physician and researcher mentioned to dad that, at least in his experience, most transplant patients have an emotional element to their surgery that isn't really addressed or spoken of, or at least not super often. He compared it to the PTSD often seen in people returning from conflict or war -- basically the sense of having been changed by the experience, and the crises of faith or identity that can sometimes go hand-in-hand with an important and life-altering event. I'm sure there's a more technical description for all of that (and PS, if you have one, please share it!), but for my purposes here it's enough to know that it can simply be hard, on a lot of levels.
My first conscious thought after surgery was that this was going to be difficult. It wasn't so much the physical pain that was a problem -- I expected all of that, and more -- but the strange feeling I had of suddenly being out of control. As silly as it sounds, I had an immediate sense of "missing" my old lungs. They were little brats by the end there, sure, but they were brats that I knew how to discipline, knew how to coddle, and knew how to live with. All the new medicines and machines and doctors and surroundings confused me, even after I came out of my ICU madness (and for the record I was pretty bad in there -- they really shouldn't let people with law degrees get major surgery). For a long time after the operation I had a very unsettling tendency to burst into tears at random moments. And sure, probably a fair amount of that emotion was drug-induced or pain-related, of course, but I think there was something more to it as well. Weird as it is to admit, and certainly to type and record here for the duration of this blog, I think I felt a little, well...I guess the word would be lost. People around me were celebrating, they were grateful, they were "done." They wanted me to talk about how much better I felt, and how happy I was, and in a way all of that was completely reasonable. But there was also another part of it for me. I felt like maybe there was going to be more to this whole transplant thing than simply learning how to breathe again and then just getting on with it. Or, to put it another way, I suddenly realized that it wasn't going to be all "hey, cool, new lungs, new breath, new life. Bye, mom, and have fun back in Colorado! Thanks for the prayers, everyone. See you all when I win my Nobel Prize!"
Um, yeah, not so much.
Don't get me wrong, guys. I don't want anyone to misread my message here as a major Debbie Downer moment. I am thrilled and grateful beyond my wildest dreams to have been given this chance at life with new lungs. I am firmly and completely in support of transplant, for those who think it's the right choice for them, and I am 100% certain that I made the right choice. I love and respect my doctors, trust that I am getting awesome follow-up care, and count my lucky stars daily for all the support I received (and continue to receive) from all of the beautiful people in my life. To say I am blessed would be like calling the Empire State Building "tall" -- it just doesn't do the real thing justice.
That said, I was really intrigued when my dad told me about this doctor's perspective. He knows what he's doing, and he's worked with a lot of different CF patients of various ages. His observations about stress, trauma, and transplant certainly won't hold true in every case, of course, but I think I'm ready to admit that they really did ring true for me. Despite all the wonder and the beauty and the blessings and the crazy awesome stressful happy unfuckingbelievable madness of my story, I think it's fair to say that there is a little something of me that I still think of as missing. It's maybe just something that I am learning, however slowly and however different it may end up looking, to rebuild.
And so tomorrow night my wonderful Godmother is taking me out for a small celebration, to ring in 14 months of this new(ish) existence in style and to toast the start of new things. Although I am still on IV antibiotics and still struggling with certain aspects of this process, I am also starting -- again, however slowly -- to face my own reflection, even if it looks just a tiny bit different now. And as part of that moment, we will go back to the restaurant where it all started. Or maybe where it all ended, depending on your perspective. Because I want to go back there. Because I need to find my way back, no matter how corny or dramatic it sounds. Because I am ready to move forward -- whatever that means. And because I am always, eternally and forever, beyond grateful.
For all of it.
Friday, July 29, 2011
Top (CF) Chef
Just about everyone who knows me will vouch for three major things about my personality:
1) I rarely, if ever, cook anything edible other than, say, the occasional bowl of cereal or, when I'm feeling super gourmet, some sort of random stir-fry/5th-grade-science-fair experiment hybrid involving pretty much every single ingredient that happens to be in my kitchen at that moment;
2) That the aforementioned lack of culinary skills does not in any way, shape, or form dissuade me from religiously watching just about every cooking show known to man, often DVRing the episodes and re-watching them later (as if the results of the show might have changed?), plate of take-out Chinese food in hand; and
3) That I have been, at times, known to be just a little, tiny, teensy bit competitive . . . although this one is somewhat up for debate. (And I WILL win that debate, I promise.)
All of which combined led me to literally squeal with excitement when I recently received an email from our good friends over at Abbott Pharmaceuticals. Turns out that the makers of Creon (you know, the drug that allows so many of us to eat all that yummy food in the first place) are sponsoring a new program called CFChef. And in my opinion, not a moment too soon.
CFChef is designed to help people with CF meet the intense and sometimes challenging dietary requirements of living with this disease. According to Abbott, the program (which can be found at www.Chef4CF.com) is there to serve both as an educational resource for patients and families as well as a sounding board for the sharing of information and recipes. Awesome.
So where's the fun part?
Turns out CFChef is celebrating its new launch by hosting a CF recipes contest. Now I want you all to close your eyes. Imagine your favorite Top Chef/Iron Chef/Food Network Star. Imagine s/he was cooking a meal for a CF audience and needed your help. You have 30 minutes and a mystery basket filled with dried pasta, brazil nuts, gas-station beef jerky, and ScandiShake powder (chocolate OR vanilla, just because I'm feeling generous). Your time starts...NOW!
Okay, maybe not.
But the contest DOES start now, and the rules are relatively simple. Just go to www.Chef4CF.com and enter your favorite CF recipe before Sept. 28, 2011. The top four winning recipes will be selected by a panel of experts including:
-Suzanne Michel, CF dietitian
-Boomer Esiason, Former NFL Quarterback, TV Personality, and CF Dad
-Michael Symon, Food Network "Iron Chef" (ohmigod, ohmigod, ohmigod!)
-Ali Christensen, CF Patient and "America's Got Talent" Contestant (Not to mention all-around sweetheart, as I had the honor of meeting her and her equally talented sister this year at the CFF's Volunteer Leadership Conference)
Tell me you're not super excited already. Go ahead, try and say it with a straight face.
Personally, I'm not much of a chef (and my recipe for "Piper's Special Stir-Fry Surprise" is just waaay too top secret to leak out onto the internet), but you can bet that I'll be encouraging my friends and family to enter! I'm also super excited to see (and to try!) some of the recipes that I know all my brilliant, beautiful Breathheads are going to submit. And if sharing and helping out the CF community while gaining personal glory isn't enough motivation for you, ask yourself when else in your life you're likely to have a chance to submit a recipe to a healthcare professional, a sport's star, a singer, AND AN IRON CHEF all at the same time? Yeah, that's what I thought.
Seriously though guys, this is an awesome chance to help out your fellow CFers, strut your stuff, AND have some fun in a program sponsored by one of the CFF's major corporate partners. What more could you honestly ask for?
So here's to community, cooking, creativity, calories, and, above all, to curing CF. Happy cooking, y'all!
1) I rarely, if ever, cook anything edible other than, say, the occasional bowl of cereal or, when I'm feeling super gourmet, some sort of random stir-fry/5th-grade-science-fair experiment hybrid involving pretty much every single ingredient that happens to be in my kitchen at that moment;
2) That the aforementioned lack of culinary skills does not in any way, shape, or form dissuade me from religiously watching just about every cooking show known to man, often DVRing the episodes and re-watching them later (as if the results of the show might have changed?), plate of take-out Chinese food in hand; and
3) That I have been, at times, known to be just a little, tiny, teensy bit competitive . . . although this one is somewhat up for debate. (And I WILL win that debate, I promise.)
All of which combined led me to literally squeal with excitement when I recently received an email from our good friends over at Abbott Pharmaceuticals. Turns out that the makers of Creon (you know, the drug that allows so many of us to eat all that yummy food in the first place) are sponsoring a new program called CFChef. And in my opinion, not a moment too soon.
CFChef is designed to help people with CF meet the intense and sometimes challenging dietary requirements of living with this disease. According to Abbott, the program (which can be found at www.Chef4CF.com) is there to serve both as an educational resource for patients and families as well as a sounding board for the sharing of information and recipes. Awesome.
So where's the fun part?
Turns out CFChef is celebrating its new launch by hosting a CF recipes contest. Now I want you all to close your eyes. Imagine your favorite Top Chef/Iron Chef/Food Network Star. Imagine s/he was cooking a meal for a CF audience and needed your help. You have 30 minutes and a mystery basket filled with dried pasta, brazil nuts, gas-station beef jerky, and ScandiShake powder (chocolate OR vanilla, just because I'm feeling generous). Your time starts...NOW!
Okay, maybe not.
But the contest DOES start now, and the rules are relatively simple. Just go to www.Chef4CF.com and enter your favorite CF recipe before Sept. 28, 2011. The top four winning recipes will be selected by a panel of experts including:
-Suzanne Michel, CF dietitian
-Boomer Esiason, Former NFL Quarterback, TV Personality, and CF Dad
-Michael Symon, Food Network "Iron Chef" (ohmigod, ohmigod, ohmigod!)
-Ali Christensen, CF Patient and "America's Got Talent" Contestant (Not to mention all-around sweetheart, as I had the honor of meeting her and her equally talented sister this year at the CFF's Volunteer Leadership Conference)
Tell me you're not super excited already. Go ahead, try and say it with a straight face.
Personally, I'm not much of a chef (and my recipe for "Piper's Special Stir-Fry Surprise" is just waaay too top secret to leak out onto the internet), but you can bet that I'll be encouraging my friends and family to enter! I'm also super excited to see (and to try!) some of the recipes that I know all my brilliant, beautiful Breathheads are going to submit. And if sharing and helping out the CF community while gaining personal glory isn't enough motivation for you, ask yourself when else in your life you're likely to have a chance to submit a recipe to a healthcare professional, a sport's star, a singer, AND AN IRON CHEF all at the same time? Yeah, that's what I thought.
Seriously though guys, this is an awesome chance to help out your fellow CFers, strut your stuff, AND have some fun in a program sponsored by one of the CFF's major corporate partners. What more could you honestly ask for?
So here's to community, cooking, creativity, calories, and, above all, to curing CF. Happy cooking, y'all!
Thursday, July 28, 2011
**Blogger Challenge: Personal Disease Perspectives**
I recently got asked a question by a CFer who was worried about her upcoming evaluation for lung transplant. She wrote me a very thoughtful and articulate email about the subject in which she noted that she did her vest 2-3 times every single day, took every enzyme and pill exactly as prescribed, and worked out 3-4 days a week on average despite her steadily dropping lung function and ever more frequent lung infections. She also noted that she sees her doctor at least monthly and goes on IVs every 3 weeks or so, during which time she carefully schedules her infusions to be exactly 8 hours apart and makes sure to follow any additional treatment instructions (such as extra rest or spacing out her calcium from her cipro) that her doctor might recommend. She follows a detailed dietary supplement plan worked out in consultation with her nutritionist and, in her own words, she "tries very hard not to let [her] mind make excuses for any lapses in [her] responsibilities to [her] body." She told me all of this, and then she posed a simple question: "Should I be worried that the lung transplant team at my hospital will decide I'm not a good enough candidate for lung transplant?"
Wow.
Faced with this sort of question, my first reaction was exactly what I hope all of yours was too, meaning that I basically just sat there staring at the email in shock and then started to re-read it to figure out what part of the puzzle I must be missing. "Good enough candidate" was her exact term, and for the life of me I couldn't understand why she was questioning herself like that. After all, the entire message leading up to that point was basically a textbook description of the perfect patient, someone both mentally and physically committed to fighting her disease and maximizing her chances for survival even in the face of some pretty tough obstacles. I thought surely she must have some other underlying health issue or random skeleton in her closet (did she smoke? was she secretly selling her antibiotics on the black market?) that she wasn't telling me about. Otherwise why would she possibly be worried that her transplant team would reject her? What would drive a diligent, motivated, and obviously smart young woman into a crises of confidence so severe that she was, essentially, wondering whether a panel of doctors would deem her "good enough" for a life-saving procedure?
So I asked her.
Turns out this young lady was worried not because of her compliance record or her past medical history or anything else having to do with her behavior either as a person or as a patient. She was worried precisely because, as she put it, "I keep reading stories about how people saved themselves through exercise, compliance, and changing behavior. I feel like I've tried everything, but my FEV1 is in the toilet and it keeps sinking lower even when I do everything I'm supposed to do. How do I know the doctors even believe me at this point that I'm trying my hardest to make things better? How do I even know I'm not missing something?"
Okay, I'm gonna say it again: wow.
The moment I read those words, I started crying. I feel like this young woman summed up perfectly the frustration, self-doubt, and fear that a lot of CFers unfortunately feel when they suddenly start to lose control over their health. CF is a crazy disease in that it is controllable, to a point, through proactive care, self-responsibility, and treatment. But that whole "to a point" caveat is where things start to get tricky, because for some people the "point" seems to be around 90% control, whereas for others it seems to hover much lower. We're all pretty used to hearing that each CF case is different and that genetics, compliance, environment, and lots of other factors all play into our personal progression with the disease. But what about the fact that even two people with the exact same mutations, same FEV1, same bacteria, and same exercise program can still experience different results? How do we account for that in a medical system that, understandably enough, has to quantify things like Lung Allocation Scores and the risk of non-compliance after transplant based on general assumptions like "people with a 45% FEV1 are less sick than people with 29%" or "these treatments work, therefore patients who take them appropriately and as directed should see improvement"?
I think this email also struck a personal chord with me because of my own recent experience post-transplant. It's weird, I feel like I've been relatively healthy, but I'm also not blind: I can see that most people at my center don't seem to spend nearly as much time on IVs or fighting weirdly yo-yo like PFTs as I do. And if I'm 100% honest, hand on heart, I'd also have to admit that I've had a few "what the heck am I doing wrong?!" moments -- times when I have literally freaked out at myself for the perceived "sin" of getting another infection, or having a low prograf level, or not blowing hard enough during the testing. I actually had one moment when a PFT tech asked me if I understood the proper technique for the test and I very nearly forgot that I've had close to 30 years experience with this stuff before I stammered out a meek little "um, I'm pretty sure I know how to do it."
For those of us who might be dubbed "crazy control freaks" by others (I personally prefer the term "highly motivated, results-oriented individuals who might admittedly be somewhat crazy"), accepting that there are parts of our bodies that might not be 100% cooperative is challenging, to say the least. We have faith in the power of individual action, and when it fails we feel judged and inadequate. For others who are good at grasping the uncertainty of life with a progressive, chronic illness, the challenge might instead lie in keeping a sense of personal responsibility in the face of what seems like an invincible enemy. There's judgment there also (probably as much by the control group as anything), as well as a sense of powerlessness. Oddly enough, both of these approaches can eventually lead to the same point: a deep-set fear that our disease is in charge, and that nothing we do will ever be "good enough" to stop it. In the worst case scenario, both approaches might even cause actual non-compliance, with patients adopting the mindset that nothing we can do as individuals actually matters when it comes to fighting CF. (And yes, I know this from personal experience. I spent a good part of my teenage years convinced that if I couldn't fully control every single aspect of my CF then I was failing and should more or less just stop trying. I'm embarrassed to admit how long it took me to snap out of that trap.)
This is somewhat of an oversimplification, of course. As lifelong patients, most of us will fall into both camps at some point or another, switching sides seamlessly as we get older, or sicker, or go through different life phases -- or even adopting different views for different issues (those who might be hardcore when it comes to doing treatments, for example, but nonchalant about the power of exercise). It's more of a spectrum than a true dichotomy, in that sense, with a whole lot of middle ground in between the two extremes.
So since I couldn't really answer the question (well, sort of -- I did write that I would personally go down there and tell off her transplant team if they dared decide that she isn't "good enough" for new lungs), I've decided to put it to a panel of experts in an official "Matter of Life and Breath Blogger Challenge: Personal Disease Perspectives Edition." Here are the rules of the game:
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.
2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.
3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.
4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.
5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.
Much love, light, and healthy debate to all of you, beautiful people.
Wow.
Faced with this sort of question, my first reaction was exactly what I hope all of yours was too, meaning that I basically just sat there staring at the email in shock and then started to re-read it to figure out what part of the puzzle I must be missing. "Good enough candidate" was her exact term, and for the life of me I couldn't understand why she was questioning herself like that. After all, the entire message leading up to that point was basically a textbook description of the perfect patient, someone both mentally and physically committed to fighting her disease and maximizing her chances for survival even in the face of some pretty tough obstacles. I thought surely she must have some other underlying health issue or random skeleton in her closet (did she smoke? was she secretly selling her antibiotics on the black market?) that she wasn't telling me about. Otherwise why would she possibly be worried that her transplant team would reject her? What would drive a diligent, motivated, and obviously smart young woman into a crises of confidence so severe that she was, essentially, wondering whether a panel of doctors would deem her "good enough" for a life-saving procedure?
So I asked her.
Turns out this young lady was worried not because of her compliance record or her past medical history or anything else having to do with her behavior either as a person or as a patient. She was worried precisely because, as she put it, "I keep reading stories about how people saved themselves through exercise, compliance, and changing behavior. I feel like I've tried everything, but my FEV1 is in the toilet and it keeps sinking lower even when I do everything I'm supposed to do. How do I know the doctors even believe me at this point that I'm trying my hardest to make things better? How do I even know I'm not missing something?"
Okay, I'm gonna say it again: wow.
The moment I read those words, I started crying. I feel like this young woman summed up perfectly the frustration, self-doubt, and fear that a lot of CFers unfortunately feel when they suddenly start to lose control over their health. CF is a crazy disease in that it is controllable, to a point, through proactive care, self-responsibility, and treatment. But that whole "to a point" caveat is where things start to get tricky, because for some people the "point" seems to be around 90% control, whereas for others it seems to hover much lower. We're all pretty used to hearing that each CF case is different and that genetics, compliance, environment, and lots of other factors all play into our personal progression with the disease. But what about the fact that even two people with the exact same mutations, same FEV1, same bacteria, and same exercise program can still experience different results? How do we account for that in a medical system that, understandably enough, has to quantify things like Lung Allocation Scores and the risk of non-compliance after transplant based on general assumptions like "people with a 45% FEV1 are less sick than people with 29%" or "these treatments work, therefore patients who take them appropriately and as directed should see improvement"?
I think this email also struck a personal chord with me because of my own recent experience post-transplant. It's weird, I feel like I've been relatively healthy, but I'm also not blind: I can see that most people at my center don't seem to spend nearly as much time on IVs or fighting weirdly yo-yo like PFTs as I do. And if I'm 100% honest, hand on heart, I'd also have to admit that I've had a few "what the heck am I doing wrong?!" moments -- times when I have literally freaked out at myself for the perceived "sin" of getting another infection, or having a low prograf level, or not blowing hard enough during the testing. I actually had one moment when a PFT tech asked me if I understood the proper technique for the test and I very nearly forgot that I've had close to 30 years experience with this stuff before I stammered out a meek little "um, I'm pretty sure I know how to do it."
For those of us who might be dubbed "crazy control freaks" by others (I personally prefer the term "highly motivated, results-oriented individuals who might admittedly be somewhat crazy"), accepting that there are parts of our bodies that might not be 100% cooperative is challenging, to say the least. We have faith in the power of individual action, and when it fails we feel judged and inadequate. For others who are good at grasping the uncertainty of life with a progressive, chronic illness, the challenge might instead lie in keeping a sense of personal responsibility in the face of what seems like an invincible enemy. There's judgment there also (probably as much by the control group as anything), as well as a sense of powerlessness. Oddly enough, both of these approaches can eventually lead to the same point: a deep-set fear that our disease is in charge, and that nothing we do will ever be "good enough" to stop it. In the worst case scenario, both approaches might even cause actual non-compliance, with patients adopting the mindset that nothing we can do as individuals actually matters when it comes to fighting CF. (And yes, I know this from personal experience. I spent a good part of my teenage years convinced that if I couldn't fully control every single aspect of my CF then I was failing and should more or less just stop trying. I'm embarrassed to admit how long it took me to snap out of that trap.)
This is somewhat of an oversimplification, of course. As lifelong patients, most of us will fall into both camps at some point or another, switching sides seamlessly as we get older, or sicker, or go through different life phases -- or even adopting different views for different issues (those who might be hardcore when it comes to doing treatments, for example, but nonchalant about the power of exercise). It's more of a spectrum than a true dichotomy, in that sense, with a whole lot of middle ground in between the two extremes.
So since I couldn't really answer the question (well, sort of -- I did write that I would personally go down there and tell off her transplant team if they dared decide that she isn't "good enough" for new lungs), I've decided to put it to a panel of experts in an official "Matter of Life and Breath Blogger Challenge: Personal Disease Perspectives Edition." Here are the rules of the game:
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.
2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.
3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.
4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.
5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.
Much love, light, and healthy debate to all of you, beautiful people.
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