Monday, March 22, 2010

The Hardest Part

Okay, so now that I've had a little time to decompress after yesterday, I've come to a really somewhat startling conclusion:

Yesterday might have been one of the best days of my life.

Um, yeah, you read that right. And no, don't worry, I'm not suffering from post-traumatic stress delusion over here. Believe me, I never expected that I would ever write those words about a day filled with hospitals, blood draws, IVs, super stylish "gowns," and well, frankly, disappointment. I never thought that I would ever call spending 9 hours NPO being prepped for surgery a good time. And, to be honest, it really wasn't a "good time" in the traditional sense of the term, but I have since come to understand that it was a very "good time" in terms of learning a very valuable lesson.

Okay, let me explain.

A couple of my favorite CF transplant bloggers have recently been inspiring me with their words of wisdom about trust and acceptance. I'm always so grateful to read those messages because they remind me that even when things don't turn out as we would like them to, they still turn out as they should. And I guess I should preface all this by saying that I do, in fact, believe in the Greater Plan -- that God has a purpose for us, that we are all connected as part of creation, and that (as Sara so wonderfully reminded me) "the universe is unfolding as it should." But I'm also the first to admit that believing in that concept in the abstract is often a whole lot simpler than believing and actually trusting and rejoicing in that concept on a daily basis, especially when, well...shit happens.

Yesterday, though, the abstract became real for me in a way I don't think I could have ever anticipated, and in retrospect it seems like the best blessing I could have ever asked for.

I felt firsthand how one family's loss can, through their grace and generosity, become a miracle of hope for another family. I sat in a hospital room with my sister as we both shed tears for the family that was offering us a second chance -- that without even knowing us was willing to share the greatest gift we could even imagine -- and doing so unconditionally, without asking anything in return. And honestly, it was pretty indescribable to actually feel that miracle -- to know suddenly (rather than simply to think) that hope and life really can be born out of grief and death.

And then, later, the other side of that coin became equally real to me when I learned that my loss would be another family's joy and rebirth. It was just a flash -- a split second spent on a hospital transport gurney in the dimly lit OR holding area -- but I realized that just as I was so willing to accept that another family's loss for my gain was right, I also needed to trust just as fully in the fact that my loss was, in fact, exactly what should have happened. Which is not to say that it was easy, or that I was particularly thrilled when I got the news or when as I watched another man roll off to the OR where my surgery had been scheduled, but I guess it is to say that I was honestly at peace with it even in that very emotional moment. It wasn't "fun" for sure, but it was okay, and more than that -- it was right.

I really, truly believe that -- now more than ever. Just as I really, truly believe that perfect lungs will come for me, and for Beth and Jess and Jen and Rhi and Gina and Katie and Jerry and James and Andrew. I don't know that, of course, but I do think I know now that it will all be exactly as it should be, either way.

Does all this sound too passive for your taste? I promise I don't mean it to be. One thing I have learned through this entire process is that you have to fight and advocate for yourself, and you have to take active, positive steps toward making good things happen. But when things don't turn out exactly as I planned them, even after all my best efforts, I hope that I can also take from this entire experience the understanding that, well, that's okay too.

Tom Petty, by the way, was wrong: it's not so much the waiting as the trusting that is, in my opinion, the hardest part. And also the most beautiful.

11 comments:

  1. Your raw honesty is very humbling. And so beautiful.

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  2. beautiful, as always. I love your final paragraph - there's a big difference between fighting alongside the current of what needs to be happening, and simply throwing yourself against a wall and refusing to get off of the hamster wheel out of little more than trying to maintain a death grip on control of an uncontrollable situation, and I think finding that balance is one of the biggest challenges and gifts of chronic illness.

    Your hopeful honesty throughout this process (and on your blog) is inspiring. Wasn't kidding yesterday when I posted on FB that you're on the short list of people I admire most in the world - CG also included on said list :o)

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  3. I want to tell you thank you for posting about all of this. I too will have to be evaluated at some point on this journey and make that step to transplant. I love reading your posts. It gives me some insight on what to look forward too. When I think of transplant, I think of relief, however sadness at the same time. I am sure you know what I mean. I have mixed emotions about it. The hardest part is thinking about the waiting. I can't imagine the anxiety of every passing second not knowing if the call is going to come. I am praying that the perfect lungs will come for you. God has this planned. I hope you feel His embrace surrounding you now. Keep writing and I will keep reading. =) Thanks again.

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  4. I'm simply in awe of your grace.

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  5. Well said, as always, Piper.

    We had one dry run as well. Only nothing was wrong with the lungs (they did go to someone else) but it was me who was running a low grade fever and had no idea (this is of course after flying to LA, getting prepped, etc.)... People were emailing us with 'so sorry this didn't work out, etc' and we felt similar to you.. We thought, Don't sweat it another second! Those lungs just weren't meant for me... we would wait more than a year after that before we got another call. And I'll tell you, that second call felt right every second of the way... and it still does. :)

    Hugs Cyster!!

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  6. Bawling.Face.Off. (In a good way). Will comment more later.

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  7. Good on you Piper. You are an inspiration and reading your blogs helps me get through my waiting for my new lungs. Thank you.

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  8. I just caught up with your blog Piper, wow!! I never had a false alarm. I guess I can say that I missed a lot of the tx steps due to my condition. But, wow. What a roller coaster ride you're on. But you are right, YOUR new lungs are out there, and you will get them when you are due. When it's your time. I can't wait for that time. xoxo - Natalia

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  9. Piper... if we could bottle your spirit and wisdom and sell it.. we would all be living in a different world. You are a blessing.

    much love and health, Michèle

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  10. Piper... if we could bottle your spirit and wisdom and sell it.. we would all be living in a different world. You are a blessing.

    much love and health, Michèle

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  11. It's really amazing what you went through! What a unique perspective you've been given and have embraced.

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