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

Writ On Water

I was 19 years old and a sophomore in college when I first "discovered" poetry. I had, of course, read poems before -- I even had a few go-to verses and a budding obsession with TS Eliot that had taken root the first time my dad handed me a copy of "The Book of Practical Cats" -- but I was still, as a general rule, not someone you might expect to find sitting under a tree with a volume of Shelley or draped over some basement couch with the beat poets. I preferred stories, like with plots and characters and all that silly stuff, and I was loath to tackle any poem longer than two or three stanzas as a general rule. Poetry was, to put it mildly, my road less traveled.

Dramatic as it sounds, all that changed instantly the moment I walked through the door of my Romantic Poetry Seminar and cracked open that first page of John Keats. Two lines into A Song of Opposites I went from a skeptical student to a dedicated disciple. Shelley, Byron, Wordsworth, Coleridge, Blake: I loved all of them wildly, but my heart still belonged to that young English poet who so famously penned the words "Beauty is truth, truth beauty -- that is all/ Ye know on earth, and all ye need to know." (Ode on a Grecian Urn)

A few years later, when I visited Rome, I made a point of stopping by Keats' apartment, which he shared with the Shelleys (Mary and Percy, both of course famous in their own rights). This is also the place where Keats ultimately died -- after his entire family died of TB and he himself also caught it, he came to Italy for the air, which was thought to be better than the cold, wet British climate. Keats passed away at age 26 after a far-too-short career and a far-too-long battle with chronic respiratory illness, from which he knew he would eventually die. I consider this to be a great loss, not only for the genius of his art, but for the fact that he was both brave enough to keep writing in the face of his own pain and even death, and scared enough to let that shine through in his poems. He was honest and playful, and he created beauty out of an extremely painful truth, all of which led me to leave his apartment and make a special pilgrimage to his gravesite in the Protestant Cemetery not far away. And it was there that I first read these words:

Here Lies One Whose Name Was Writ On Water.

Keats wrote this himself, and asked for it to be placed on his gravestone. I won't get into the interpretations of this by historians or literature scholars (which are varied), nor the additional words added by Keats' friends after his death. What I will say is that these words struck me extremely hard as a person, as a poet (or, at the very least, a poetry reader), and as a patient. To think that this young man, so careful and talented with words, chose to leave on his grave a personal message of impermanence, of the fleeting nature of life and the return to the same glossy surface when we're done, is almost unbearably sad. To think that he found such a gorgeous image to express his heartache and that he made not only his art, but also his life and even his gravestone a poem is beyond inspiring. Even tragedy has its sparkle.

Alas, I am not John Keats, and I can find no such lyrics for my own sense of loss this weekend. Two gorgeous souls, one of whom I was honored and blessed to call a very close personal friend and both of whom were a huge part of my life here in NY and at my transplant center, have moved on from this life into whatever comes next. They were also close friends, and I truly hope that they are together now laughing and taking silly pictures. Tina and Tom, you were and are two of the most beautiful souls I have ever had the privilege of knowing. I will miss your wit, your love, your sarcasm, your funny faces, and your insights. Thank you for the cupcakes, and the laughter, and really amazing conversations. I love you always.

And as I look out now over the lights reflected in the Hudson River, I know that we may all very well be simply "writ on water," but that doesn't make us shine any less brightly.

Take Your Time

Don't you just love those moments/minutes/hours/days when you know you have something you want (or need) to say, but you have no idea how to actually express it? I'm sure you all know what I mean; it's that desperate feeling of being without the right words (or actions, or images, or whatever floats your individual boat) to get across the emotion you want to convey. It's a sense of being unable to communicate with those around you and therefore setting yourself up for misunderstanding or isolation. In short, it's what I imagine drowning must feel like -- or pretty darn close anyway.

Lucky for me, I don't find myself rendered speechless very often. This in and of itself is probably both a blessing and a curse (depending on who you ask), but it at the very least saves me the discomfort that goes along with unexpressed emotion. And in a world as intense as that of chronic illness, hospitals, and shortened life expectancies, being able to lay it all out there even if it seems melodramatic or overly intense is, quite frankly, not the worst flaw I could have inherited. (And yes, Daddy, I'm looking at you.)

But, like all rules, there are exceptions. I am, for example, not good at any conversation I perceive as overly needy. I'm not great at letting people know when they're frustrating me BEFORE the proverbial shit hits the fan. And I'm not a huge fan of dealing with things that I find super scary or truly, deeply uncomfortable. In those situations, I tend to turn either to humor or to simple avoidance. It's easier for me to do a very brief or generalized acknowledgment of something harsh than for me to really go the distance and express how bad or overwhelming the situation really is. And, this, unfortunately, is NOT the best trait to have inherited in terms of illness and life. In fact, it's something I really need to work on, and I plan to give it a solid effort in the year to come.

So here goes nothing, right? Or rather, here goes everything...

According to the banner at the top of this blog, I write about "Life, Lung Transplant, and Cystic Fibrosis...and Everything In Between." Quite honestly, though, I consider this blog about Life, more than anything -- it's just that "My Life" in particular, happens to involve a whole lot of CF with a hefty dose of transplant thrown in for good measure. Or at least that's the situation right now, and that was the impetus for starting this blog in the first place.

But the simple fact is that any blog about CF and lung transplant (and indeed about life, for that matter) also needs to include something that's not quite as fun as miraculous near-misses, great doctors, an abundance of expensive drugs that I feel privileged to use despite their side effects, and stories about lives reclaimed. And I honestly feel strongly that I would be remiss to head into 2011 without acknowledging that, and without sending out -- if only from a distance -- my support to the many members of our community who are facing the harsh reality of CF that, sadly, brings to a close all those other crazy beautiful miracles.

This all came to a head a few days ago, as I struggled valiantly with my move (read: fell into an infection-induced stupor on the floor of my new room while my mom sorted boxes and furniture). As part of the joys of moving, I was somewhat distracted and less involved in any and all things CF-related for a few days, something I generally consider good for my sanity anyway. Unfortunately, I was also less likely to email people within the community who wrote me through FaceBook or the blog. And I know that sort of thing happens, but it's not my favorite thing to have happen -- especially when someone emails me about her fears with getting listed for transplant and I know that I have to leave it for a few days. That just kind of sucks, even if it is inevitable from time to time.

What sucks more, though, is that when such a thing happens in the CF community, the person isn't always around when you finally get your act together. And the truly heartbreaking reality is that you might find yourself remembering a young woman who was amazingly brave in the face of failing health and other challenges, who looked incredibly cute in the pictures she took to document her fight (all wearing the lung shirt that you and your sister designed), and who had always been nothing short of an inspiration in her several previous emails to you. You might just find yourself sitting baffled at the computer, wondering how just a few days could make such a huge difference -- and knowing that there but for the grace of God go all of us when it comes to this deadly disease.

So please excuse that this post isn't a particularly happy one. Those moments still exist in this world, and I think it's super important to share them. Actually, truth be told, I think CFers are pretty remarkable in our collective determination to look on the bright side. And Summer, you were a perfect example of that. But as a self-proclaimed hippie and a woman of faith, I know you'd also agree that there is, no doubt, "a time to dance, a time to mourn...and a time to every purpose under Heaven."

And beyond it, as well.

Stranger than Fiction

hi everyone.

i'm awake and at home - discharged directly from the ICU around 10 am this morning after coming in from the OR around 2:15 am. i will try and explain what happened (although it's hard for me to wrap my own head around, i fully admit!), but please keep in mind that much of this is what lawyers call "hearsay" -- meaning i heard it from someone who heard it from someone else, and possibly the line goes back even further. suffice it to say that it went more or less kind of sort of like this:

the harvest team had already examined the lungs and was ready for the operation, and the lungs were very close by to columbia so i had to be put out before transport so i could be ready by the time they arrived. donor hospital made a last minute decision to allow the liver harvest team to resection the liver FIRST (contrary to most every hospital which allows lungs and heart to come out first). somehow i still got put under b/c the liver operation was supposed to take less than an hour. liver operation took 4 hours during which time the lungs (and i believe the heart) were lost due to no O2/blood, or possibly b/c of debris or a clot from the liver.

they don't know all of what happened. after it all the lungs never even made it to columbia. one doctor said he believed that it was the first time in 15 years someone at col pres has been put out only to NOT receive their lungs. almost everyone who treated me was crying. i awoke and asked if i got new lungs and they very gently told me no -- after that i was so confused i don't really remember much. i know i asked for my family and was told they were on their way. i know i felt a very weird sense of disbelief and numbness. i think i was just so focused on breathing at that point too that nothing else even really registered.

i'm still confused. i trust god and know that this must have been right, but how? and at the same time, i have NO FEAR about this surgery anymore. is that weird? it's also true. i've done my part. i've made it all the way to the OR and i've endured it all and i've felt that moment of being put under ready to give up my lungs and receive new life. true, it didn't work out as planned, but i also know that i did it. the parts that were in my control, at least. and that's all i can ask of myself, so i know i can do it again.

** NOTE: PLEASE understand that this experience is crazy out of the ordinary -- even bordering on the absurd. although i recognize transplant for the deeply personal and individual decision that it is, please think long and hard before allowing a fluke like this one to put you off of the concept. if i had to go through all of this twice over to get new lungs, i would. i am happy to correspond with anyone who wants to talk about this, and contact info is to the left.**

so here's what i know:
1) i still have my CF lungs -- and NEVER, EVER let ANYONE tell you that CF lungs aren't amazing. because mine survived intubation and general anesthesia at a time when their work should have been over, and they RECOVERED enough to let me come off the vent (apparently without any incident) and make it home. thank you, lungs. i will miss you when our time together is over!

2) i have a transplant team willing to refuse bad lungs even at the last moment, and to face me and look me in the eye to tell me their decision. they are compassionate, caring, competent, and -- above all -- discriminating when it comes to PERFECT lungs. i am so grateful that the first (cognizant) words that i said to my surgeon were "thank you for not giving me bad lungs." he laughed and shook my hand. i was serious.

3) i have a CF doctor with enough insight to get me on the list and to make all this happen when i am still strong enough to endure all these dry runs and even this -- the ultimate in "damp runs" as i am calling it. again, forever grateful. i will always, always be an advocate of working hard to delay transplant, however i will also always shout from the rooftops the importance of going into this process STRONG and not too sick or emotionally fragile to function. this is without a doubt the biggest challenge of my life, and to be able to continue to live through it, and live with it, is a blessing beyond words.

4) i have tiffany christensen's book sick girl speaks, which is the ONLY point of reference i have found to date of a similar experience. i am so grateful to her for putting her experience out there for others. i thought about it and told my mom her story as i recovered in the ICU this morning.

5) i have faith. god is in control of when i get lungs. the universe is unfolding exactly as it should.

6) i have so much light from all of you. i love you all. thank you.

Love (And Other Serious Side Effects)

In 28 years of dealing with CF, I think I've finally gotten pretty used to the concept of prescription drugs and the interactions they often have with my body. In fact, I would say I'm about one prescription refill away from deserving an honorary advanced degree in pharmacology. My medicine cabinet quite literally runneth over, and I'm not expecting that to change anytime soon. Certainly not with transplant, that's for sure.

Yep, I've dealt with the prednisone munchies and albuterol jitters. I've had sun poisoning because of cipro, vomiting after ceftaz, and fevers when faced with zosyn. I was lucky enough to have my tinnitus resolve after just a few weeks off tobra altogether and my kidney function eventually bounced back after the polymyxin, as did my iron and magnesium levels. I don't have a rash or bruising from the blood thinners anymore, and I'm pretty sure that whole oral thrush incident brought on by general antibiotic use is now a thing of the past. Oh, and that whole raspy (whoops, I mean "sexy") CF voice thing from all the inhaled meds? Yep, got that one too.

I'm kind of a side effect junkie, when you think about it.

When I first started dealing with all my prescriptions and refills as an adult I was always super into reading those little print outs that they put in the bag to tell you about all your drugs. Okay, so maybe not for the obvious meds I had been on forever like Pancrease (which, by the way, lists stomach pain as its most common side effect, making it clearly one of the more ironic meds out there) or even Pulmozyme, but definitely with the "newer" drugs like Prednisone and certain antibiotics. I knew which meds were best taken with food, which meds were likely to cause headaches or blood sugar spikes, and which meds meant I had to stay out of the sun at ALL costs.

Not that any of it really mattered, of course, since I had to take the drugs anyway. That's another great part of having CF -- you can educate yourself all you want on potential side effects, but unless something is causing hemo, bronchospasm, or serious allergic reactions, you're not likely to get the go ahead to cross it off your routine. And this makes sense, because really at the end of the day being able to clear the lung goo is more important than the sound of your voice, reducing inflammation trumps the desire to get to sleep at a reasonable hour, and fighting pseudomonas matters a whole lot more than that perfect summer tan. It's not rocket science or self-torture; it's just that the benefits outweigh the costs.

Recently the CF community has lost a lot of wonderful people, all of whom will be missed dearly. It seems like the past couple of weeks have been particularly tough, and to be frank about it all, it sucks. To find a group of people to connect and share information with about CF is such a gift. To then lose members of that family, their spaces left open like missing pieces of a beautiful jigsaw puzzle, is a heart-wrenching experience, to put it mildly. The passing of a friend, or of multiple friends as is (sadly) the case in this instance, from the same disease you're fighting can send you reeling. The side effects of a million strong drugs put together could hardly come close to matching the feeling of having to say, once again, "breathe easy, my friend."

And yet, none of us seems willing to call it quits. There are plenty of opportunities to do so, to shut down our blogs or erase the forums from our browser's memory, to just sign off with a simple "okay, enough, I'm done. I don't need to know anyone else with CF and I don't need to suffer another loss. Thanks for the laughs and the memories guys, but I'm out." And I can only guess that the reason we don't just throw up our hands is that the friendship, the support, and the strong sense of mutual understanding between CFers is a benefit that quite simply outweighs all the potential for loss, pain, and even fear when someone moves on in his or her journey away from this world. In other words, we stay for one very simple reason:

It's worth it.

Cystics don't come with a warning label or an expiration date. There's no handy little print out given to you when you meet a fellow cyster or fibro that spells it all out in clear and simple English.

Warning: PLEASE USE WITH CAUTION as contains mutated genes and may cause deeper understanding of oneself and one's condition, a tendency to share common concerns or medical issues, empathy, and laughing that lead to coughing fits. Other side effects might include friendship, community, and even love.

A serious side effect indeed, but I for one am definitely not giving up my prescription.