Thursday, October 24, 2013

The S Word

I believe in the power of words.

To me -- as a lawyer, as a blogger, as a speaker, certainly as an empowered patient, and even just as a person -- words have always been important. How we choose to express ourselves colors our perceptions and those of everyone around us, just as the words others choose impact our own understandings. As a kid I remember hearing that the Inuit and other American Eskimo tribes have something like 50 words for "snow" (FYI: read this article from The Washington Post if you're interested in learning a little more) and being fascinated by the idea. Mostly I remember thinking that, as a Colorado girl, I should probably have at least 25 of my own words for snow, and also that clearly this language thing was more complex than I thought it was. More specifically, I was intrigued by the notion of having multiple words to describe a single phenomenon, and the way that choosing one word over another might change the whole darn thing. And then I went back to coloring or multiplication tables or whatever it was that I happened to be doing at that time. Because, you know, I was a kid.

Fast forward to last week somewhere in a major research hospital in the Southern United States.

I was sitting in yet another waiting room awaiting yet another exam for yet another lung transplant and feeling an extreme sense of been there, done that syndrome. After all, I have been "here" (as in the physical state of end-stage lung disease) before, and I have done that insofar as I've already come through this entire process once. I was wearing what might as well have been the same hospital gown and lugging what might as well have been the same O2 tank and sitting in what might as well have been the same uncomfortable chair thinking what might as well have been the same slightly scattered thoughts while trying to push aside what might as well have been the same ugly fears and series of "what ifs..." from my brain. In short, I was frustrated and I was tired and I was ready for the test to be done, so I decided to distract myself by looking through my "transplant folder" at some of test summaries and other medical documents I had either brought with me for  or accumulated during the evaluation. I opened it up, grabbed one at random, and began reading the "notes" section.

"Ms. Beatty is a 31-year-old female who suffers from cystic fibrosis and advanced rejection of transplanted lung..."

And that's as far as I got.

I've seen the words "suffers from cystic fibrosis" so many times that the phrase has almost lost its meaning. Almost. But seeing it there, in black and white on a piece of paper by a very well meaning physician not-so-almost took my (very limited) breath away. Sitting there in that waiting room in the scratchy gown and the uncomfortable chair, I sucked my oxygen and gave a furtive glance around me at the nurses, doctors, other patients, and support people nearby. Then I asked myself honestly: were we suffering? Or, more to the point, I guess, was I suffering? One minute ago I had just been "bored" and maybe "tired" or "annoyed." Was I now supposed to suffer on top of all that?

Did they get it wrong? Or does the medical community just have 50 different words for, make that "suffering"?

Look, cystic fibrosis isn't pretty. Chronic rejection isn't pretty either. Neither of them are afflictions I would wish on, well, frankly I wouldn't wish them on my worst enemy to tell you the truth. Most people I know with CF feel this way, even those who claim it as a blessing in their lives because they feel it's made them stronger, more grateful, or whatever other moral high ground illness might give us a right to claim. I don't disagree with their perspective (who am I to do so anyway?), but for me having cystic fibrosis has never been about the blessing or the curse. It's something I have, plain and simple. It's something I fight. It's something I'd like to see eradicated and cured altogether so that no one else ever has to go through it, because I don't believe you need to experience CF to have a happy life. And I believe that given the choice, most of us would choose not to have it in our lives or in our children's lives. Because it is painful, it is frustrating, it is hard, and it can be deadly. It can be just about the most despicable little monster on the planet.

So does that mean I suffer?

Sitting there in that waiting room, I had the overwhelming urge to grab my pen, cross out that line, and rewrite the sentence to read "Ms. Beatty struggles with cystic fibrosis and advanced rejection of the transplanted lung." Because you know what? I do struggle with it. Every single day. I struggle to breathe now, but even before that I struggled to find time to do all my treatments with CF lungs, to find balance between life and an illness that just wouldn't go away. Sometimes I struggle with my doctors, or with myself, or with my care-partners (my preferred word for support people), or I struggle to deal with some of the side effects from medications. Sometimes I just struggle to keep it together in a crowded waiting room, and hey, who hasn't been there before? I struggle against cystic fibrosis every time I go out with the mission to raise money for a cure. I struggle against it when I watch other people fighting this fight, or watch my family watch me. I struggle against it because I don't want to surrender and I refuse to suffer. So, yes, I struggle sometimes with cystic fibrosis/lung disease, and you know what? I'm okay with admitting that.

Cystic fibrosis is not optional. I was born with it, I have it, and I have to figure out how to live with it every day. In a similar vein, I know that "rejection of the transplanted lung" in my case was not anything that I (or my body) did "wrong." Because believe me, if there were some huge, looming mistake that I made I would have found it by now -- God knows I've been searching. So I also know that being where I am right now was not optional either. Neither of these were choices. But I know that, for me at least, and at this stage of my disease, suffering would be.

Maybe that's just the linguistics nerd in me again. Maybe it's because no matter how much I struggle with CF or chronic rejection or SVT or any of the other ridiculous health issues that seem to rear their ugly heads at inopportune moments, I still consider the rest of my life to be pretty effing amazing when you really stop and think about it. Maybe it's because I have a multitude of different words to describe how people deal with the pains and realities of chronic illness, and to me suffering seems like a last resort. Maybe that's because I've been lucky -- and believe me, don't I know it. Maybe it's just because I'm too darn stubborn to admit I'm wrong. And maybe, just maybe, that little bit of stubbornness is enough to keep me alive.

Or maybe it's all just semantics anyway. But I, for one, still struggle with it.


  1. Piper, your post is so beautiful. I had a really rough time today--being told I could not do something very important to me because I have CF--and your words were like a salve. Thanks so much for your honesty and hope.

  2. Piper, this post touched my heart and made me tear up, thank you. I come to this blog whenever I need a hearty dose of perspective. You never disappoint!

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