Monday, January 4, 2010

(Re)Discovering Myself

So this evening I was flipping through some of my usual suspects of CF/transplant blogs to see how everyone's doing, learn lessons, get inspired, whatever, and I came across something that literally stopped me in my tracks -- namely, an entry posted on my friend Leah's blog by her wonderful husband. I don't have permission to link it here or else I definitely would, but Leah is a beautiful post-tx CFer who received her new lungs 3 weeks ago at Stanford (and was home for Christmas in what had to be one of the most awesome recoveries of all time!). And today her husband posted a quick update about life 3 weeks after the gift of, well, life.

The thing that touched me the most was his sheer joy at watching his wife live with healthy, non-CF lungs. And he drove the point home with his observation that there are aspects of her personality that have been hidden behind her progressing disease and are now, to his obvious delight, reemerging. It literally brought tears to my eyes -- such a moving and well-put tribute to Leah's enduring spirit and her ability to heal, to find her way back to herself through the grace of a generous organ donor and her faith. To say the least, I was humbled and inspired by what I'm sure for them was just a run-of-the-mill blog entry. So thanks go out to Seth and Leah for once again giving me that awesome tingly feeling.

I have to say that Leah's blog also made me think, big time. It made me think about illness and its effects, not only on our bodies but also on the other, less tangible aspects of ourselves. It made me think, specifically, about my own personality and the ways that it has changed since becoming "sick[er]" with CF -- for the better or maybe for worse, but maybe just also in neutral ways. It made me think about how hard most of us with chronic illness work to make statements like "CF doesn't define me" and "I have CF; CF does not have me." Statements that we absolutely mean. But then I think about other statements I have heard from post-tx CFers about how transplant allowed them the chance to be the person they were always meant to be, or allowed them to recover a piece of themselves that they thought had gone missing. Statements that are also 100% true. Statements that, honestly, make me sooo excited for the future and my life with new lungs.

Let me say this: I have tried, to the best of my personal ability, to be one of those CFers who can proudly proclaim that I am NOT defined by CF. And I'm not, honestly, because there is just so much more to me than coughing fits or late night treatments or accessed ports or steroid pills. So much of me that quite frankly has nothing to do with any of that. And so I've gone to sometimes great (and occasionally stupid, not gonna lie) lengths to prove that I was and am somehow "stronger" than this disease, at least in mind and spirit if not always in body. And as I've gotten sicker, I've clung even more intensely to my knowledge that who I am cannot be worn down by this disease. No matter what happens, no matter if I end up getting a transplant or not, no matter what the ultimate outcome, I truly believe and know that I am and will always still be Piper -- I will always be more defined by the way I lived my life than by the obstacles that I faced while doing it.

All that said, I think it would be sugarcoating CF to pretend like it hasn't taken its toll on my personality, especially in the past few years. There, I said it. My name is Piper and I'm not 100% perfect -- go figure. Because as much as I try and believe and hope, as much as I know that I'm strong and I think that I'm pretty darn good at the whole "positive attitude even in the face of a whole wheelbarrow full of CF bull****" thing, I still know that, like many of my friends out there in real life and in cyberspace, there are in fact aspects of my personality that don't get to come through as often now that I'm dealing with being "sick" almost full time. It's not because I'm purposefully suppressing these parts of myself; it's just that so much of my physical energy now goes toward the necessary (the treatments, the exercise, the appointments, the resting), and so much of my mental energy goes toward the preparation, and the waiting, and the realities of being, well, really sick -- I can't honestly sit here and say (er, type) to you that I haven't had to let a few things slide to the wayside.

For the most part, I try to hold onto the parts of myself that I cherish. I try to take at least a little time every day to do something to remind myself that I'm human, and more than just a disease or a number on a waiting list. When I have extra energy, this is simple: a visit with friends or dinner out or a walk with my dog can make all the difference in the world. When my body is sapped from antibiotics and steroid-induced insomnia and coughing, it's a little tougher, but a good book or some time spent writing or painting, or even a game of scrabble and dinner in with my mom and sister will lift my spirits when I feel trapped in my apartment and tied to my O2. So that only leaves the days when I'm wracked with fevers or infection, and on those days I just try to remember that I'm surrounded by love. And I'm pretty sure that when John and Paul sat writing the lyrics "all you need is love" they had no idea how applicable the words would be to a bunch of crazy cystics all waiting on a transplant list. Just sayin'.

So I guess as much as I want to believe that my spirit and personality are stronger than cystic fibrosis -- as much as I tell myself that this disease can attack my body but will never touch who I am inside -- I have to admit that there's a part of me aching to see what aspects of myself "reemerge" in a sense after transplant. And I'm reminded of what my sister said as my family of four left the hospital after our initial meeting with the transplant team in May of 2008. As we huddled, overwhelmed and exhausted, in the corner of the crowded hospital elevator, Erin turned to the rest of us and demonstrated, once again, her unflagging optimism: "just think," she said, "ten years ago this might not even have been an option. And now we're going to get the chance to see Piper able to do things she hasn't been able to do in a long time!"

At the time, of course, we all thought she meant physically, but now I'm not so sure. What I do know, though, is that I couldn't be more excited to find out.


  1. Very insightful! When you have permission to post the link to Leah's blog I would love to read that also. Thank you for being so honest with your writing Piper!!!


  2. I agree Piper, that there are those untangibles that change or haven't emerged yet in us. One thing I think of is that I used to be so much more spontaneous and silly and the thing I miss most about me is that I love to LAUGH and I really don't LAUGH hard anymore. Sometime I do, and I pay my weight in coughing for it. But I miss belly laughing so hard I pee myself. I can't wait for that. Its something I never thought I would take for granted....and I never will again. Thanks for a great post. I hope my headache cause will be found out soon...but miserable tonight, probably more IVs soon, Kerry

  3. Piper, I absolutely love your blog...specifically your writing style. You are witty and honest and vulnerable and brilliant and when I only have time to check a few of my favorite blogs, yours is one of them! I am not on the tx list right now but I feel strongly that due to my lung function (low 20's), that will be an option for me relatively shortly. It is so wonderful to gain insights from you and others who are walking this journey.

    I would also LOVE to read the post on Leah's blog. I am planning a trip this year to Stanford to check out their "team." I've heard very good things about Stanford.

    Happy New Year!

  4. Great post, really has me thinking. My 20 year old self certainly is quite different than the 40 year old self that is going through transplant eval, but how much of the difference is due to CF progression. I too miss laughing as often and hard as I like too, and having to keep myself reigned in is quite annoying. Let's hope the transplant goes through for all of us in need.

  5. I often felt pre-transplant, and still do post, that CF is something to beat, that it isn't the real me - and of course that is brought into sharper and sharper focus the more it takes away from you and your abilities to do the things you feel define you, whether that's doing sport or walking or belly laughing... However, in a big way I feel CF has defined me in a beneficial way - it gives you a very down-to-earth attitude, a big dollop of humility, and a 'what's the worst that can happen' attitude to little problems and annoyances in life - at least it does for me. I think it's made me a nicer person and helped to cut through some of the arrogant side of ambition that, if it weren't for the limits put on me by CF, might have flourished. That said, it is a joy to breathe again and not need to do physio, and I feel more myself without those awful lungs. I wish rapid transplants for all of you out there waiting - may your new lungs be pink, healthy and brilliant.

  6. I had the same reaction to Leah's blog. Maybe you saw my comment there, because I was basically speechless. And I relate to you a lot in what you've just posted here (and I'm not even on the stinkin' list yet, grr).

  7. Piper - I am totally honoured that you would want to link to my blog! You totally have our permission!

    I am truly blessed with a wonderful husband, aren't I? He is so sweet. And yes, right before transplant parts of my personality were on the "backburner"

    I was me, but just a little bit suppressed version of me... not as energetic. Now I can laugh harder, go out more, stoop down just to pick a flower... without worry of wasting energy!

    I am so looking forward to when you get the call. I hope someone (or you) are able to update on your progress. I know you'll do great!
    I would love to hear any changes you notice about who you are - it's so exciting!

  8. I don't even know what to say except; AMEN! I'm excited to see what transplant brings for all of us!

  9. You are truely an inspiration Piper. Your blogs have helped me a lot and l am going through alot of the same feelings as you are during this uncertain time.