Monday, March 8, 2010

Quality Control

Recently, a CF friend of mine posed what I think is a really thought-provoking question on one of the CF forums. As a little bit of background, this awesome woman is working with the CFF to help generate ideas on how CFers can best help themselves improve their own quality of life, as well as ways that CF care teams and the Foundation can assist CF patients in this goal. It stems from the notion that the more informed, educated, and active a CFer is in his/her own care, the better the overall result from a holistic perspective (i.e., physical health, but also quality of life and other aspects). Anyway, we all know that every CFer -- um, make that every person -- is different, so she took the time to see what other people had to say on the subject.

Did I mention she's kind of awesome?

I've been thinking a lot about the phrase "quality of life" lately -- in part because it's such a major issue when facing transplant. I've heard it said again and again that the numbers aren't the whole picture (I've even been the one saying it in more than a couple of instances); you have to look at the bigger picture of how you feel and how able you are to live the life you want to live. And, on a personal level, I know that sometimes the actual story behind the numbers is far more important than what you can read on any graph or percentage point or PFT printout. But the question remains: how do you measure something as subjective as "quality of life," especially with a chronic disease like cystic fibrosis?

I have been blessed with an incredible quality of life. Honestly, I'm not exaggerating when I say I have no idea what I did to deserve it. But I do think I know (at least in part) why it has been as amazing as it has, and I can sum it up in one simple, beautiful word:


Let me be frank here: when I say "empowerment" I don't mean "sense of invincibility." I was fortunate enough to be born into a family who believed (and told me every day) that I could do whatever I wanted to do with my life, CF or no CF. I was equally lucky, however, to have a family that understood the severity of my disease, the importance of fundraising and active involvement in the community, the need for great CF healthcare, and the need for emotional support. And because I was lucky in that respect, I was able to experience a good fortune domino effect that has led me to some of the best CF centers in the country, with some of the most competent, caring, and talented doctors. All of whom believed beyond a shadow of a doubt that I needed first and foremost to have a life, and then after that we could worry about how long that life might last.

Because no one told me I couldn't, I played soccer, skied, biked, traveled, participated in after-school activities, and had sleep overs throughout my childhood. (And okay, fine, my CF doctor did try to tell me that I couldn't ride horses, but my mom quickly told him that I'd be doing it anyway if that's what kept me active and healthy. Thanks, mom...seriously!) Because my parents always stressed school and education, I had no doubt that I would be going to college, and because they never told me it wasn't an option, I decided to move across the country to do it. Because they playfully argued over whether I would be more likely to get a law degree or become a professor, I always understood that I could go to grad school if I chose. And because they were always 100% willing to drop everything and stay with me in the hospital, or come help me through a rough patch, or ease me through a transition in clinics, I knew that they still expected me to acknowledge my disease and make it a part of my life, not a hindrance or a defining quality.

And now I suddenly find myself facing transplant. To be perfectly blunt, I have to admit that I've lost a little bit of my "quality of life." In the process, though, I've learned that maybe "quality" isn't defined as narrowly as I once believed.

I can't work right now -- but I still have my degree, my experience, and my knowledge. I can't live alone at this moment -- but I have lived alone in two major US cities and abroad, and I know that I will again. I can't travel while I wait for new lungs -- but I have memories of 5 continents and a wanderlust that I know will return full-force after transplant. I might not be able to go skiing -- but I have friends who gathered in Vail to send prayers and light to me from across the country until I can be back on the slopes with them next year. I'm on IVs every 2-3 weeks like clockwork -- but I know that who I am when I'm in that hospital bed or curled up on my couch is not who I am all the time, will not be who I am forever.

In short, I've learned that this stage of my life is harder because of CF -- but it does not change the fact that I have lived and loved and experienced life. And more importantly, it does not change who I am.

If you've been reading this blog at all lately, you've probably noticed that I write a lot about how much other CFers inspire me. This is 100% true. What I really hope, though, is that all these amazing CFers, and CF parents, who I know are out there (um, yeah, I'm looking at you) are also busy inspiring themselves.

Let me lay it out here:

This is not about having the best lung function numbers. This is not about earning the highest degree or getting the best job. This is not about running harder or faster than anyone else. This is not about avoiding transplant or even about surviving until we're all old and grey and sitting around in rocking chairs reminiscing about the "old days." All those things are fantastic and wonderful goals, but they're not what true "quality of life" is about, or at least not in the opinion of this old-school CFer turned hyperactive schoolchild turned horseback rider turned English major turned lawyer turned transplant patient turned friend turned blog writer.

What this is about, at least to me, is the notion that life is not defined just by the milestones we reach, but by the path we take to get there. "Empowerment" means choosing to grab whatever life throws at you by the horns and make it work for you. It doesn't mean that you never get sick, or sad, or angry, or overwhelmed -- it just means that you understand that you are more than just those bad moments. And maybe even that you believe in your ability to make what my dad calls a happy ending, regardless of the outcome.

And that, I believe, is an outstanding quality.


  1. Put perfectly. As usual.


  2. Definitely well said. I find myself looking at my quality of life as it stands now, and comparing it to 2 years ago. Though what I can do has decreased, my happiness and enrichment in life has increased. It really is all about how you look at life. Some days may be very dark but other days will have so much light in them it will make you forget (or at least push to the back) the bad days!!!

    Miss you girl!!! I hope we get to meet up again sometime soon! Masks, O2 and all ;)

  3. you. are. amazing.

    THIS is the intro to your book.


    Assignment one: Piper- the early years. Due date: 1 month from today.

    Grading: Based on ... awesomeness. You will receive a score of Awesome++, Awesome+, Awesome, Sorta Awesome, or Crappy.

    Good luck!

    And you're sure you can't come to the Mask Up to Meet Up tomorrow in my town? You could get back to NY if you got the call. And there are helicopters. Just think about it.

  4. This was such a great post. Thanks for all of your awesome inspiration!

  5. Thank you SO MUCH for this post! I really needed it right now.

    I just found your blog, but will continue to follow it. You have a way of putting things I FEEL into words I could never find and write.