Monday, August 12, 2013

The Blame Game

The other day, over a sunny outdoor brunch with my boyfriend, I did something I rarely allow myself to do, at least out loud. We were sitting on a patio, sipping coffee and trying to plan our day around our dual love for being outside and active and the harsh reality of my compromised lung function and current lack (though we know it's needed) of oxygen therapy. As we sat there making and discarding plans, I suddenly burst out with what most people with chronic illness will tell you is the sentiment of doom: "God, this is so frustrating! Last year at this time I could..." 

Fill in the blank with whatever high-intensity activity you want and you basically have a foolproof recipe for self-pity. Last year at this time I could hike a mountain; this year I can barely walk a short hill without stopping. Last year I could, despite some medical challenges, walk and talk at the same time, with the same breath; this year I wait until I have recovered to even try and speak. Last year people were constantly telling me to slow down; this year I get to watch them all from behind (ahem, not always a bad thing!). Last year -- well, you get the picture.

The thing (okay, one of the many things) I love about this guy of mine is that he didn't buy it for a second. He listened -- maybe because he recognized that into every life a little self-pity must fall -- but he didn't accept it. Instead, he jokingly announced that since he and I met almost exactly one year ago next month that I could, if needed, just blame him for the whole chronic rejection thing. Then he quickly moved on to calling a friend to plan a walk that we could do together, albeit slowly, and one with a fantastic view to boot. Any wonder why I keep this guy around?

What it got me thinking about, though, is the notion of blame. There's a lot of folks involved in the care of someone with CF and/or a new organ, and a lot of thought goes into assigning responsibility for the whole process. It's MY job as the patient to be honest with myself and others and to take my drugs exactly as prescribed. It's my doctor's job as a medical professional to listen and make objective, well-researched recommendations about my health. It's my family's job to support me in my responsibilities, and the clinic team's job to support the doctor in his/her care plan. It's my insurer's job to negotiate a workable price to get me the drugs I need to stay alive and healthy. And it's my body's job, on some level, to simply cooperate with the whole ordeal. Any one of these cogs breaks down and fails to do its job, and Houston, we have a serious problem. So it's only natural, to some extent, that when something goes wrong the first thing we search for is the broken cog.

What's frustrating is when we find none, which is the case in my particular situation right now with chronic rejection. Sitting there pondering the question of who I should/could "blame" for this new little bump in the road, I realized without question that I did what I could to keep Donor Bob alive and healthy. I kept my appointments, exercised diligently (seriously, guys, for a while there I was a machine -- and I'm proud of that), took my drugs every day, dotted every "i" and crossed every "t" I could reasonably think of, with a few minor missteps along the way. Did I ever annoy my doctor by doing something wrong? Absolutely, because I'm still human. My cog might have had a few little rust patches here and there, but it never stopped turning and trying to do its job. And neither, so far as I can tell, did anyone else. In a way that's kind of scary, right? Because look where we ended up anyway. 

In another way, though, it's extremely liberating. The harsh truth is that illnesses like CF or chronic rejection are frankly not simple tasks to manage, and sometimes even the best-running machine can't handle every wrench these twin monsters throw into the process. What I can say wholeheartedly right now is that I'm glad I don't have to look back and wonder. I'm glad that the self-pity questions I'm asking (when I ask them at all) are mostly about "why did this happen?" and not "why didn't I listen?" I'm glad that if and when I have to part ways with my beloved Donor Bob -- whose beautiful gift I will never reject, no matter what my body decides to make of these lungs -- I will do so knowing I did his generous spirit proud. I'm equally grateful that I don't have to look so hard anymore for broken cogs. I'm ready, instead, to search for what is whole and what is beautiful. I'm ready to step into this next phase of the journey with confidence and trust instead of regret, with peace instead of pity, and with great expectations of the paths yet to come.

And I will get there eventually, beautiful people, even if the walk's a little slower this year.


  1. Hello Piper -- just a quick note to say hello and I'm thinking of you and I'm glad you're in a place where you'll get a lot of help as you mend up from this crappy exacerbation of chronic rejection. Sending much love,
    Elizabeth (and Liam)

  2. Piper, this is a lovely post as always. I'm inspired to rethink my BLAME GAME habits. Keep inspiring us all, girl! xxx, Donna (2 years post this September)!!

  3. Hi Piper-- Thank you for the inspiration! You are amazing.

  4. "I'm ready, instead, to search for what is whole and what is beautiful." Now THAT is beautiful. Keep rockin your whole self, Piper. I appreciate reading your thoughts, frustrations, observations, and insights. Enjoy that rocky mountain air.