The Little Things

This is a picture of my thermometer.


I acquired this little yellow doom-stick in a total isolation room on the seventh floor of my hospital. It tried to "stick" it to me (terrible pun totally intended) by registering a fever on the day of my planned discharge and royally freaking out my doctors. After I had weaseled my way out of the situation with the help of my good friend Tylenol and all the argumentative force of a very expensive legal education, I figured the little troublemaker owed me a favor or two, so I pocketed it. (Note to readers: this is 100% legal in the hospital with disposable thermometers -- you've already paid for them anyway.) Unfortunately, in my glee at "free" new medical equipment, I forgot and left my beautiful blanket behind on my hospital bed. Hey, you win some, you lose some, right?

And what I "won" in this case was a judgmental piece of plastic that lately has been spoiling my plans way too often, despite a hefty dose of immuno-suppressants and a polymyxin/aztreonam IV cocktail. To say that me and "Thermy" here are not close friends would be an understatement on par with calling the cast of Bravo's Real Housewives, "just a little bit annoying." Still, most of the time the two of us are able to bury the hatchet and get along for the 10 seconds or so that it takes Mr. Killjoy to do his job and register a fever.

Most of the time, that is, until last Friday.

The events in question started out pretty much like always in that I was super cold and shivering under about 15 blankets when it suddenly dawned on me that maybe I should actually take my temperature rather than blaming the 60 degree weather outside. So I fished the little monster out of my medicine cabinet and popped it in my mouth. As I did so, I also made my patented cross-eyed contortionist face, which allows me to see when the little "F" on the thermometer stops blinking, and then I know the reading is done. It's a fun little party trick, only this time my friend, who was standing about 10 feet away from me, happened to pull a confused face of her own.

"Hey Pipe, why are you still holding that thermometer in your mouth? It's been beeping for a while now."

Um . . . pardon my language here, but shit. Turns out the thermometer that I've had for 4 months -- the one I thought was annoyingly silent -- is, in point of fact, anything but. The darn thing beeps, apparently with some repetition, and it has been making this beep at me every day at least twice a day, week after week, month after month, from a distance of about 6 inches from my ear. And I have never heard it. Not even once.

Okay, so let me just pause for a second here to acknowledge that this is not the end of the world. I have known for over a year now that I have permanent hearing loss at the high frequency level from a lifetime's worth of high-dose tobramycin use. And, weirdly enough, I'm okay with that, especially because my particular case is very mild by hearing loss standards. Even on the day I failed my hearing test I didn't really think much of it. I was, more than anything, disappointed by the loss of yet another helpful drug to the side-effect gods and my life more or less continued on as normal -- I just sort of accepted that I wouldn't be able to understand people very well if there was a lot of background noise and then I moved on. There wasn't anything I could do about it, anyway.

On the other hand, though, the incident this past week really threw me for a bit of a loop, and I have to admit that I'm still a little confused as to why. I mean, not to sound dramatic or anything, but I wake up every morning and pop a handful of pills designed to make my body as vulnerable as possible to any and all infectious agents, with the hope that such vulnerability will also help protect the foreign organs that currently reside in my chest. I follow this up with shots to ensure my blood doesn't clot and (more often than not for the past few years) several hours spent plugged into high-dose antibiotics that make me walk like a drunken sailor and lose much of the sensation in my face and hands. I'm completely used to checking my blood sugar and giving myself insulin shots at the dinner table by now, and I'm surprisingly cavalier about waltzing around New York City with a needle sticking visibly out of my chest. And given all of this (not to mention the slew of other stuff people with chronic illness face on a daily basis), you'd really think it should take more than a silly beeping thermometer to ruin my day. Right?

Wrong.

That insignificant piece of plastic and its inaudible beep really, really, really pisses me off.

People like to tell us that we should focus on the beautiful little things in life, and also that we shouldn't sweat the small stuff. But I'm the first to admit that, more often than not, I seem to get it the other way around. Lung failure and subsequent open-chest surgery, constant IVs, and a medication schedule that would confuse most pharmacists seems, well, kind of run-of-the-mill to me now. Not to sound blase or anything, but I've been through it, I've seen friends go through it, and I've even learned to laugh at some of the morbid stuff. I had to. But yet I still get angry and defensive when my family (lovingly) teases me about my less-than-perfect performance as a patient in the ICU. I still get mad when my housekeeper rearranges my medicine cabinet (do.not.touch.the.drugs.), and I'm kind of ashamed to even admit how pissed off I get when I can't find a cab in the rain. And yes, even I am aware that the last one on that list is possibly the single whiniest complaint ever. I'm still 100% guilty as charged.

So, yes, it's true that I can ignore a rainbow or a kind smile from a stranger, and still get my day "ruined" by something that I know is, in the grander scheme of things, probably not even that big of a deal. And for the record I'm not saying that hearing loss of any kind at 29 is acceptable, but I am admitting that I'm not quite sure why I choose to focus so much energy on that, rather than on the multitude of other things that are going right (or wrong) at any given moment in my life. I'm not sure why I can handle talking about an infection that nearly killed me, but not about the ICU that saved my life. And I'm not sure why some things seem so much more intense in the moment than they do, say, a couple days down the road -- or even to the person standing 2 feet to the right -- while other things can seem like no big deal at the time, until I work myself into an angry frenzy two days later. I think that for me personally it all comes down to the way I see myself (whether that be as someone who can laugh at a little thermometer or as the world's best ICU patient), but it could just as easily be about trying to put forward an image of the person I wish I could be.

I do know for certain that it's not for me to judge what's big or small in another person's life, especially when I can't even get it completely sorted out in my own. I've also accepted the simple fact that it isn't up to me, at least on the very gut level, what sort of things will leave me chuckling at my own ridiculousness and what will make me cringe every time I hear the story. What is up to me, however, is the way I choose to react to something once it's already happened: how and when I choose to let out my frustration, the conversations I might need to have to solve the problem, and what I might do to minimize my discomfort in the future. I can't necessarily promise that I'll never be caught sweating out the small(er) stuff, but I can choose to ask the question of why something is really bothering me and what the best way is to deal with the problem. And if I'm really strong I might even choose to listen to the answer.

Provided, of course, that I can even hear it.

Pushing the River

Personal Journal Entry: April, 2010

Well, it's a new journal and I'm still here waiting for new lungs -- it's going on 8 months now, I guess. I just realized today that it was actually April of 2009 (one year ago) that [my CF doctor] told me I needed to go active on the lung transplant list. I remember how stunned and scared and shocked I was that I might actually be "ready." I remember thinking I wanted more time, or that she was crazy and jumping the gun, or that surely I would wake up in the morning and all of this would be a bad dream. And now, one year (and 8 months on the list) later, I feel equally stunned and scared and shocked -- only this time because I suddenly realize that I probably don't have that much more time and "my miracle" still seems a long way off. It seems to me a bit of a lesson in contradictions: on the one hand I always wanted to fight with my old lungs for as long as possible, and on the other I am now admittedly beyond frustrated with the waiting. But I guess more than anything this has taught me that you simply can't fool the Universe -- clearly I could survive this long with my old CF lungs, so maybe it's right that I still have them?

I keep going on and on about trusting my doctors and myself, etc, but I think the real truth here is that I need to just learn how to trust in God and in whatever force it is that we call the higher order/plan. If I've learned nothing else in these months of waiting, it's that I can't force my will on this process (my friend Carolyn would say "you can't force the river", though Lord knows most of us will never stop trying). The fact of the matter is that my lungs will come when the time is absolutely right -- my donor's life will stop at exactly the right moment and the stars will align in exactly the right way -- whether I like it or not. And when I think about it that way -- when I really consider that maybe my role in this Universal drama is just to do all I can to be ready for the moment when all the ingredients that are beyond my control come together -- well, somehow that makes everything seem just a little more manageable. Because short of going out and mowing someone else down with my car (which would probably get me removed from the list, among other more serious consequences), or somehow contriving to get myself on a vent (which just sounds unpleasant), there's not a whole lot I can do to ensure that I get lungs tomorrow, or the day after that, or the day after that, or for that matter ever at all. I can keep myself healthy and I can keep on choosing to trust. Everything else, much as I hate to admit it, is just beyond my control on this one.

Just as I couldn't delay CF's attacks on my current lungs just by being too stubborn to go on the transplant list, so I can't will lungs into existence simply by being ready. The best I can do is evaluate my current situation and choose to see it as a part of something that matters: as a lesson to be learned, as a poem to be cherished for its simple beauty and longing refrain, or simply as a river to be crossed on my way to something beautiful.

[. . .]

Because, after all, you can't push the river.

4/12/2011

Dear donor Bob:

Thank you for blessing me with so many new rivers to cross, and for being such a huge part of all that is beautiful. Most of all, thank you for coming at exactly the right moment, just as you promised you would. It was crazy and it was chaotic and it was beyond scary. But you, my friend, were totally worth the wait.

Happy 10 months to us.

xoxo,
Piper

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.