Say When

One of the things that I, and most people with chronic illness, struggle with is the question of "when to say when?" Oh, wait, scratch that. I guess I should have said that one of the problems that pretty much every.single.person. in the world struggles with is "when to say when?" Seriously, let's just call a spade a spade and admit that this one's a universal brain teaser: all of us wonder how much is too much, and when enough is enough. And if we're really lucky, a few of us might actually come up with the "right" answer (or, you know, right for us, anyway) every so often. It's a little process that my friend Charlie and I like to call "whenning!"

Sorry.

Lately I've felt all sorts of pressure in this area, not gonna lie. It's something I've learned to live with, of course, but that doesn't necessarily make me an expert. When I was a child, for example, I was told not to horseback ride (I ended up competing internationally in showjumping), I was told to slow down and take college in several years (did it in 4 with multiple majors), and I was told there were a lot of really good places for me to live -- just so long as it wasn't a stuffy apartment in a gigantic city. Awesome.

I don't say any of the above to brag, by the way. If anything, looking at that list (and noting the countless examples I could have used as well), I'm a little embarrassed by my own stubbornness. And yes, before anyone keels over from the sheer obviousness of that statement, let me be the first to admit that I, Piper, am sometimes just a tiny bit on the stubborn side. Only rarely though, because the rest of the time I'm just flat out super stubborn. Let's just say it's part of my charm.

The thing is, I've recently had the privilege of talking with a lot of CFers and CF parents through this blog and other mediums, and the most common questions I get (besides the "what would you do differently if you could do it all again?" zinger, which is a whole 'nother blog to say the least) all have to do with the "when/when" question.

If my CF child seems a little lethargic but not overtly sick, when do I push him to get up and be active and when is it okay for him to stay home from school and rest a little longer?

If my kid needs to gain weight, when do I push him to eat and when is it okay for him to just tell me he's full and leave the table?

If I have some sort of really important or exciting event coming up, but I know it might run me down and make me more likely to get sick, when is it okay to choose "life" over CF for a day or two and when is that just asking for trouble? And how do I do that maybe just a little bit without being totally reckless about it?

If my heart is truly telling me to do something that I know my doctors won't approve of, but which for one reason or another means the world to me, when do I stand up and assert myself as a person, and when do I need to just bow my head and listen as a patient?

When do I know it's time to bite the bullet and go see that transplant team my CF doctor's been blabbering on about at clinic, and when is it okay (even beneficial) to believe that my lungs are magical and this scarring is totally gonna clear up tomorrow if I just push a little harder?

And, of course, my personal favorite,

If I really truly super duper honestly and cross my heart adore my job and can't imagine doing anything except what I'm doing and worked really really really hard to get here but know that it's really taking a toll on my lungs and body, when do I know the time has come to choose my physical health over my mental health? And once I DO make that extremely tough decision, when do I know if it might be safe to start crawling my way back or trying out something new, even if I just got put BACK on IVs for the 8 billionth time in the last 3 years and am now facing 2 weeks of polymyxin with a side order of sinus surgery?!?!

You know, not that I have a personal connection to any of these questions or anything. I just really enjoy detailed hypotheticals, is all.

Unfortunately, most of the time I don't have any answers, which just leaves me standing before an expectant parent (or staring blankly at a wordless reply email) and wondering whether I could casually pull the fire alarm as a way to change the subject -- though something tells me that wouldn't work too well in an electronic communication. Because, the thing is, I don't actually know what your (or your child's) limits are. I don't. I have no idea whether you're making the "right" decision by keeping him home from his best friend's birthday because that kid down the street has the sniffles, or if adding that biology course is a "good idea" or just an unnecessary risk for an English major. I can't tell you whether to get a dog because some people are allergic and some dogs bite, or whether to live in a big city because some places in the city are decidedly dirty but on the other hand you'll probably have access to great health care. What I can do, though, is be open about MY experiences, and admit that I've done both those things, risky or not, and I'm still breathing.

Since the transplant, my personal questions have changed a little bit, but they're still very much a part of my life. As an immunocompromised person, I risk infection every time I step out the door, but for the most part I still keep stepping. On the other hand, I now find myself "saying when" sometimes when before, with my CF lungs, I probably wouldn't have batted an eyelash (yes, NYC subway system, I'm looking at you on this one). Also -- and I'll admit that this one's a kicker for me -- I don't understand nearly as much about life with CF after transplantation as I did about life with CF before transplantation. I don't know when I can insist that the random pseudo they found in my bronch probably isn't a big deal and anyway I've got big plans for the night, doc, and when I should just suck it up, smile as graciously as possible, and check myself into that darn hospital I love so much. I don't yet know how big the risks are and (far more importantly), I don't yet really know my "new" body and how it will react to all this stuff I put it through. And, yes, for those of you keeping track, that's multiple times in the very same post that I have admitted that I just don't know. I'll just hang out here while you all go alert the media.

I guess the point I'm trying to make is that I'm not sure there is a "right" answer in some of the more complicated "when/when" situations. Sometimes there's a right choice in the moment (the choice, for example, to grab life by the horns and go for it) that might not in fact be the right choice in the long run. Or there's a choice that might be right for your health, but not so much right for your sense of yourself as a person, and your personal life goals. And sometimes the "wrong" choice (to put yourself through rigorous schooling for a stressful job) turns out to be right when you end up with killer insurance and awesome sick leave or disability policies.

Most of the time with these types of decisions you're not going to please everyone involved, but you are going to have to live (and hopefully make your peace with) the results. Which is why when people ask me that other question -- the "what would you do differently?" monster -- my usual answer is that I would probably do it all a lot differently, if I knew then what I know now.

And then I just thank God that I didn't.

Writer's Block, and Other Blessings

So if you come to this page with any sort of regularity (or even if you just stop by every once in a while to check in on Sampson), you may have noticed that there has been a distinct lack of blogging going on around here lately. And this alone wouldn't really concern me if it weren't for the simple fact that, well, it's a BLOG after all, so the act of actually BLOGGING is more or less central to the whole idea. Which of course leads to what will from now on be known as "BadBlogger Syndrome" (or BS, for short): a crippling condition that makes one increasingly unable to form a coherent written sentence.

Or, to put it another way, I've had a SERIOUS case of writer's block. Hey, just one more illness for my collection, right? Add it to the list, boys.

Being a good patient, of course, I've worked diligently over the past few weeks to come up with a cause and a treatment for this new illness of mine, and unfortunately nothing seems to work. I do know that my writer's block most definitely was not caused by a lack of Cf/transplant/medical stuff going on in my life -- actually, quite the opposite. In the past month or so since I stopped updating regularly, I've been on IVs, been taken off of IVs due to side effects, seen my doctor several times, had the wonderful opportunity to be present at some very inspiring and impressive events within the CF community, and dealt with many of the "little perks" that seem to go hand-in-hand with a lifetime of chronic illness and immuno-suppression (neupogen shots, anyone?). In short, it's been as wild and as thrilling a ride as ever, but for some reason or another very little of it has ended up here. Not even that time I caught my overweight puppy happily gnawing on what I thought at the time was a red plastic chew toy but later turned out to be a Boost Plus bottle that was (when I left it) half full on my kitchen table. Score one for the Sam-Man on that caper, for sure.

You see, it's not that my life lately has been CF or transplant free (because hey, let's face it, when is this life ever free from the demons that haunt us the most -- whatever those might be for each of us?), but rather it's just that I haven't really been able to bring myself to sit down and WRITE about that stuff lately. And I'm realizing now that maybe those sorts of breaks are not only okay, but even necessary. Maybe sometimes it's important to take a step back from some of the things that do affect our everyday lives, that make us different and special and crazy, that teach us lessons and bring us pain, that make us hope and wish and believe and cry and start all over again the next day, and that do -- no matter how much we hate to admit it sometimes -- define a piece of each and every one of us, whether that means submission or rebellion or anything in between. Because like it or not, I AM CF -- it's just that I happen to be a whole lot of other things along the way, and sometimes those other things take precedence.

So I guess when it comes right down to it, I might be suffering less from BadBlogger Syndrome or writer's block (or whatever you want to call it) than I am from just your average, run-of-the-mill identity crisis. After all, as Walt Whitman so famously wrote, "I am large, I contain multitudes." And it would seem that at least one of my multitudes sometimes requires some distance from the part of itself that carries this disease so openly and willingly. Which is why I think that, for me personally, there will always be a value in the spaces that come between the sentences on any page, the lines on any poem, or, yes, even the posts on any blog. Because ultimately I know that, when the space is over, I will always find my way back to the words that keep me going and the lungs that keep me alive.

And back, of course, to the community of individual multitudes who make it all worthwhile.

Journeywork

As most of you familiar with this blog probably already know, I am not a poet.

I am, at various times and places, a student, a server, and a storyteller. I am a somewhat rebellious patient and a somewhat competent doctor at the same time. I am tall and I laugh a lot. I am often very loud and outgoing, aside from the times when I am extremely quiet and observant of others. I recently had a doctor actually ask me if I was flipping him off in his own office (I wasn't) -- and I'm pretty sure he was only half kidding. I am giving, crazy, driven, successful, frustrating, somewhat pretentious, spoiled, intelligent, and prone to calling people out for their interesting quirks and/or contradictions. I am equally prone to being called out. I love things that are simple, I crave intensity, and one super bright color or perfect expression will stop me dead in my tracks. I, my friends, am all these things, but still I am no poet.

And every time I forget this precious nugget of self-awareness I end up with something like this:

Roses are red
But my lips are all blue
How 'bout some lungs, God?
I think I'll take two.

(I store my Pulitizer in the kitchen, by the way. I just don't like to brag.)

And yet, despite my inability to actually WRITE a coherent verse, I also have to admit that I am a HUGE fan of the stuff. From my girlhood crushes on Keats and Eliot to the many obsessions that have come along the way, I just can't shake the fact that sometimes these abstract figures with their untouchable magic typewriters, these wizards or words and viceroys of verse, these (ugh) POETS with their faded type and clusters of glued-on glitter are, in all fairness, really, really smart people. Like, for example, when one of them manages to find these words within her pen:

One day you finally knew
What you had to do, and began (Mary Oliver)

When I started the process of living my life independently with CF, I was terrified. As I took on more and more responsibility for my disease, my potential for error increased, and so did my fear. There were mistakes, there were triumphs, and there were moments of such intense emotion that I actually made the girl in the dorm room down the hall (that one who cried for two days when she got a B instead of an A on some silly calculus exam?) look normal. In short, I was a child (or at least an adolescent, which is probably even more terrifying) and, although I was willing to help myself, I'm the first to admit that I wasn't always great at figuring out how to do so.

And when, in January of 2008, my beloved CF doctor sat me down per usual on a rubbery exam table mattress and, instead of asking to feel my belly and listen to my cough, she instead looked me straight in the eye and referred me for transplant evaluation later that year, I shook her hand, walked calmly out of the office, and promptly lost all composure next to a street vendor on 168th street. To say that I was frightened would be and understatement, as would the words "confused" and surprised. I didn't know heads or tails about this new situation, and so I wandered forward, brimming with questions and desperate for any sort of foothold.

But it wasn't until I got my double lung transplant in 2010 that I ran smack up against a wall that was, for me personally, one of the most difficult challenges yet: living life as a transplant patient in a way that still allows me to live life as, well, Piper -- the not-so-poetic but otherwise somewhat interesting woman and blogwriter you've all come to know and tolerate. And, since I was pretty sure living like me included living MY LIFE (as in setting the ultimate goal of return to work, travel, and some form of "normalcy" whenever it's actually feasible), I have to admit that I was, at least initially, a little thrown by the many restrictions brought on by immuno-suppression, the obstacles to full recovery, and the continued close follow-up by my dedicated care team. I can't be sure of what I was really expecting, but I think it mint have been something like "here's your new lungs, now have fun in Paris!" truth be told, my story's been a little more "here's your new lungs, see you back here in a week." It's not anyone's fault or anyone's error, but it is a situation where, once again, I find myself up against something in the health world that is harder than I expected.

The truth is, though, that there is never just "one day", as Ms. Oliver's words might have us believe, when we know exactly how to begin forever. There are, instead, many small beginnings along the way, each of which brings us closer to our goals, and carries us further from the fear and confusion in which we began.

When I was young, I realized I didn't have to ignore CF or become CF, but that I could just be me, with CF and a whole lot of other stuff, and be okay. I can't even tell you how badly I needed the wake up call, but I began the process. Throug that, I learned that I have intrinsic value and deserve recognition for a lot more than being a patient, and that some recognition for being a member of the CF community was okay too,

In my mid-20s, I realized I needed an outlet to deal with this whole transplant process and I created this blog. I needed to do it, so I began, at which point I learned that I can write, that sometimes I can even write well, and that I'm so far from special I can barely stand it. People get double-lug transplants all the time, and I plan to be around to see that success rate skyrocket.

And now, facing 30 with CF and the lungs of a beautiful stranger, I've come to learn that there is once again life beyond the medical. I've come to accept my fears (past and present) as valid. I've come to appreciate that simply having a transplant does not make me stronger, wiser, or kinder than any other human being. I've come to the amused conclusion that I know more about life wi chronic illness than my wonderful doctor. I've also learned that I often don't know as much as I like to think I do, in medicine or pretty much anything else. I'm in the process of learning that's okay. I need it -- oh God, do I need it -- and if nothing else, I have begun.

I am, I hope, far from finished in my beginnings.

There's a lovely part of her poem where Oliver, herself, begins her mastery. Having given us the encouragement to leap, she continues with an almost irresistible promise:

But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do --
determined to save
the only life you could save.
(The Journey)

Safe journeys, every one of us.

Inquiring Minds

Hello, beautiful blog readers.

I'm sorry I haven't written in a while. After I get out of the hospital there's always a sort of "regrouping" that occurs -- time when I just kind of struggle to get back into the swing of normal (ahem, well, normal for me anyway) life and all that entails. I'm sure many of you out there know the drill as well as I do: there are new med schedules to synch up with whatever routine you already had, new prescriptions to fill and doctors to visit, new additions to your day like extra blood draws or physical therapy, weight to gain (yay for no more hospital food!), friends to call, emails from frantic relatives/coworkers/teachers/friends/friends-of-friends/cousins-of-friends/mailmen/etc to answer, and relationships to be renewed after your short "mini-vacation." Honestly, I sometimes think the time directly post-hospital is more difficult for me mentally (and sometimes physically) than the time spent actually IN the joint. Granted this is probably because I tend to be pretty harsh on myself and focus on whatever I'm NOT accomplishing rather than the things I AM, but still. The fact remains that life post-lockup is sometimes, shall we say, somewhat less than relaxing.

All of which is just to explain why I haven't managed yet to sit down and write a real, honest to goodness blog post in the past week or so. And, quite frankly, why I'm still not quite able to do that today. Yep, sorry guys. I don't have any health updates (see my doctor again tmw, actually) or news to share right now, so I decided to take the cheater's way out and do something I should have done a long time ago.

Answer your questions.

See, if you glance over to your left, you'll see a contact info section on the sidebar of this blog. A surprising number of you have not only found that little hidden treasure, but also used it, for which I am both grateful and (gotta be honest here) totally shocked. The number of you who want to talk to me about everything from your wonderful lives to, well, your breath (or lack thereof) is both humbling and really exciting, because I get to see for the first time the depth and diversity out there within our little CF community. So cool. Anyway, more to the point, many of you also include in your emails questions about me, my life, my health, and my "everything in between." I try my best to respond to everyone personally, but I also get a lot of repeat questions and some that are just too unique and creative not to share with the whole. So, without further ado, I bring you the first ever edition of Everything You Ever Wanted to Know About Me (And Weren't Afraid to Ask!). Enjoy!

Q: Alright poser, you talk a lot about being "from Colorado," but I've also heard you mention a whole bunch of other places that you also say you've lived. Where were you born, anyway? And did your moves have anything to do with your CF?
A: The simple answer is that I was born in Colorado Springs, CO (a city renowned for its beautiful views, Olympic Training Center, and a whole lot of military bases). My parents both have roots in TX and OK, though, so when I was young we did move to Houston for a short time, then moved back almost immediately. The return to CO was, so far as I know, the only move that was primarily driven by my health needs. Beyond that I have lived in Boston, Denver, Atlanta, and New York City. Through it all I was blessed to have great care primarily out of Children's Hospital of Denver.

Q: Your dog is super cute. What the heck is a "shorkie" anyway?
A: Shorkie is a fancy name for "mutt" in that it denotes a shih-tzu (sh) and yorkie (orki) mixed breed. Sampson was sold to me (yes, I admit that I bought my dog. I am not, it turns out, the most socially responsible person on the planet) as a shorkie. In retrospect, I think this is untrue. He looks waaaaay too much like a Lhasa Apso for me to be satisfied with the "shorkie" designation.

Q: If you had your whole transplant journey to do over, is there one thing you would change?
A: Wowza. Um, yeah. I mean, I think so. It's actually hard to say, because the result was so amazing and I'm one of those people who truly believes that events flow out of each other, so I'm not sure I would "change" anything for fear of disrupting the final outcome, if that makes any sense.

I will say this: my family had a very dark time right before my actual call for transplant. There's a blog post about it somewhere (look around June 9th or 10th in the archive), but basically we were confused and thought that we had actually been knocked down on the list. We went out to dinner and had this tearful convo where everyone kind of let loose, and it suddenly became very clear that we were all really struggling to hold it together. I wish, in retrospect, that we could have been more honest about all that before the night in question. I wish we hadn't lost the faith, even for those few hours. Because getting the call from that dinner table was hard, and I was beyond shaken up by it all. I really wanted to be more peaceful as I was wheeled into surgery -- as it was the whole experience (from the fight at dinner to the disorganized chaos at the hospital upon arrival) was rattling. Not so fun, and I wish my last memories of my old lungs were a little sweeter.

Q: What are your top three things to have in the hospital?
A: Easy: 1) my own pillow/blanket, 2) something that connects to the outside world (preferably computer, but phone works), and 3) my own snacks. Obviously this assumes you would bring your own comfy clothes as well, but if not sub out #1 for clothes. I hate sleeping on hospital bedding, but I'd rather do that than wear a gown all the time!

Q: What are you finding to be the hardest thing about post-tx life?
A: Right after surgery EVERYTHING was hard. When I first came home I couldn't walk much, couldn't focus attention on anything, and couldn't really muster up much enthusiasm even for things I really wanted to do. I hurt and was tired, and I cried A LOT (weird for me, for sure). I actually wondered if I had made such an awesome choice. All that changed about 4-5 weeks post-surgery, and then I felt great. Seriously, it was a total "welcome to the world" moment...I just woke up one morning ready to kick some proverbial butt. And yes, granted, it was more of a transition than that in real life (little accomplishments every day added up), but it really felt kind of like flicking a switch when I finally crossed that line. Now I feel very much like me, only better!

Q: OMG, Piper, I've been reading your blog and I can't make sense of any of this. You got a transplant! You should be healthy! Why were you in the hospital? Are you going to get out soon? Come one, be honest. I can handle the hard truth. I just need to know one thing: ARE YOU OKAY?!
A: Yikes. Okay, first, take a second and just breathe. The last thing I need is any of my wonderful breathheads passing out from worry over ME (especially since I know we all have so much of our own stuff to deal with). So just relax, and then trust me when I say the following message, which I mean with all my heart and which is 100% the truth as I know it.

I. Am. Perfectly. Fine.

Yes, I have infections and yes, I had to go to the hospital. The thing is, though, I felt fine going in, and now that the drugs are done I feel fine again. I need to get my sinuses checked out because they may be dripping into my lungs. I need to get my weight up a bit. I need to increase my WBC count and I need to STAY HEALTHY. Other than that, though, I'm golden. The hospital stay mostly consisted of meds; meds that they don't like to do at home because of their side effects and/or special administration requirements. But for all intents and purposes I checked into the hospital to: 1) start polymyxin, 2) desensitize my body to cephalosporins, and 3) complete an in-hospital treatment for a virus. Easy peasy, right?

Q: What made you start blogging?
A: Basically I wanted a place to tell people (mostly CF friends who don't live in NYC) about my transplant eval experience. I realized pretty quickly that I didn't have time to fill everyone in on everything individually, and I started the blog to kind of post updates and thoughts that were too long or silly to repeat over and over in 50 separate emails. This blog is basically my response to the mass email, because I hate those.

As it grew, I expanded the blog a bit to include more day-to-day CF/tx stuff. My original thought was that this would be a chronicle of working life with with CF -- particularly in a fast-paced professional atmosphere. I soon realized that 1) while I was working I had very little time for blogging anyway, and 2) I was getting sick so much by the time I started this blog that my posts were less about balance and more about how to find a lifeline when you're drowning. I left work in April, 2009 -- about 9 months after starting this blog. I still believe that it is 100% possible to find a good, fulfilling, healthy balance between work and CF. I think I did balance work and CF effectively (not, however, perfectly) for several years. By the time I started this blog, however, it was clear that I needed to start scaling back and focusing on transplant. I did work full-time until about one year before my transplant, however, and I'm proud of that.

Q: How many nicknames does your dog have anyway?
A: A LOT. The most common names used on this blog are Sampson, Sam, Sammy, Sam-man (also written The Sam-man), Sammybear, Puppybear, Bear (also written The Bear), and Bearcub. Other people in my household call him Sammy-lito and Bearser, while my friend Julia calls him "The Muff" (short for muffin, maybe?). My sister, I should note, calls Sammy "Samuel P. Samuelson" (the "P" apparently is for "puppy"). This is decidedly NOT Sam's name, and I tell her that frequently.

Interestingly, none of these reflect the actual name on his papers which is, I kid you not, SAMPHSON. Yeah, I was horrified too.

Q: Who is this sister we keep hearing about? Is she older than you, or younger?
A: Erin Beatty is a wonderful woman best known for her grace and talent in performing 2 different (but equally thrilling) jobs: 1) Designer for SUNO clothing line, and 2) Sister to Piper Beatty, blog goddess extraordinaire. More to the point, Erin is kind, lovely, fun, smart, and incredibly poised under pressure. She has more than once kept my entire family sane and she has great fashion sense. She also once thought the Dire Straits were singing "Money for nothing and your checks for free," which I believe shows her many hidden talents as a lyricist and/or advertising jingle writer. She is slightly less than 3 years older than I am, and is the world's best sister. I am definitely the president of her (very large) fan club.

Oh, yeah, and it's also her birthday today. Happy birthday, Erin!!

And there you have it: more about me, my dog, and my family than you could ever want, need, or even imagine. On the other hand, if any of you DO still have questions (about anything), please feel free to send them over to the blog email (matteroflifeandbreath@gmail.com -- note that there is NO "a"). I don't promise to have all the answers, but I promise to give you my version of them, and that's the best I (or maybe any of us) can do.

Much love, beautiful people.

Liftoff

When I was about 12 my mother, who at the time was the dean of a graduate school in Colorado, had a faculty member who also happened to be an astronaut in his spare time. (I guess you could call it moonlighting....ba, dum, bah!) Anyway, bad puns aside, I thought this was pretty cool because 1) I had never met an actual astronaut before and was forever intrigued by the idea of freeze-dried ice cream, and 2) her association with this particular astronaut meant that my family was invited down to Florida to watch the shuttle launch when he was sent up to the International Space Station. A trip to Florida to watch the shuttle launch, by the way, gets you waaaay more street cred in elementary school than your run-of-the-mill visit to Mickey. This was the big time, and in my head it was going to be replete with visits to the "cockpit" (do shuttles have cockpits?) and time spent in one of those zero gravity spinning things you used to see on ads for Space Camp. I was, to put it mildly, super stoked at the prospect.

The launch was a night launch, which is both rare and spectacularly beautiful. We huddled on bleachers in the middle of some very uninhabited strip of land/dust, with the lights of the launching station spotlighting the shuttle in the distance. We weren't close by any stretch -- at least a mile away, I would guess, if not more -- and we had to get there early, so for the first hour or so all I really remember was a sense of being uncomfortable and bored. I was excited, sure, but I was also a pre-teen sitting with my parents in the Florida wilderness before the age of texting and cell phones and with nary a spinning zero-gravity ride in sight. I was, truth be told, kind of over it.

Over it, that is, until the countdown clock hit about 5 minutes to liftoff. At that point I swear I felt a tingle go through my entire body. I sat up straighter, I looked off into the distance at the lights surrounding the shuttle. I imagined the astronauts -- a crew of 5, including two women I had seen the day before at a panel -- strapping themselves into their chairs and straining their eyes for a last look at the family and loved ones seated with us in the distance. I even considered the name of the shuttle, The Atlantis, and its implications of worlds lost and the constant quest for hidden treasures. I stayed lost in these thoughts for about 4 minutes and 30 seconds, and then I joined the crowd in counting down toward the release of that vessel into the universe, full of the hope, joy, fear, light, and sheer anticipation of our collective human desire to live and to learn and to discover new wonders.

It is now T minus 11 hours before I, having finally finished my last round of inhaled and oral treatment for RSV, will be released back into my own little bustling universe of New York City. And though I can't claim a goal quite as lofty as those of the astronauts I watched so long ago, I have to admit that my skin is once again tingling with anticipation at the simple thought of making my way through the night and the snow that falls like so many stars to my family, my friends, my puppy, and my life.

I am so beyond grateful.

The nurses, staff, and doctors here are too amazing for words. I felt so cared for and looked after, which (while I may occasionally complain about all the interruptions) is something I am unbelievably thankful for. The care I get at my hospital is aggressive, compassionate, and even occasionally mixed in with a healthy dose of good fun and humor. I truly hope never to take that for granted.

That said, I am ready for liftoff. The past 8 days in here have felt somewhat dreamlike both in their intensity and in their timeless, floaty quality. The drugs they've had me on in here mess with my senses, to the extent that I can't even really feel my own body (case in point: this morning I bit my tongue due to numbness, and it's hard to type because my fingers can't feel the keys). For the past 5 days I've also been behind double doors, removed from the normal sounds off the hospital and unable to see my visitors, who must enter my room looking frankly ridiculous in paper gowns, orange masks (sometimes with plastic eye visors on them), and latex gloves. When I checked in here I was texting back and forth with a friend who I will never text with again, and that is the most unreal part of all. But somehow or another, like floating through space, time still managed to pass, and now I'm just a short while away from my own night launch. And happy as I am that I have such a wonderful hospital and dedicated team, that moment honestly can't come soon enough. Once again I am over the boring part and ready to skip ahead to the action, please.

So I'm officially commencing the countdown -- and I hope to see you all out there among the stars.

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.

Really Silly Verses

There once was a room by the highway
With views of the New Jersey skyway.
It came with double doors
And was up seven floors
In a bustling hospital hallway.

And those two doors were there for a reason
Having to do with the season.
'Cause in winter, you see
One might catch RSV
And end up with coughing and wheezin'.

Which fact is the point of this story
Without getting overly gory,
There are bugs in my nose
But that's just how life goes,
And I don't want my breathheads to worry.

I'm not happy, it goes without saying,
About how these cards have been laying.
I try to understand
This is part of the plan
Of this wonderful game we're all playing.

There are drugs, there are fears, there are times when
It feels like you simply cannot win.
But for now there are lights
From New York City nights
And tomorrow we're blessed to try again.