Gone were the fevers, chills, vomiting, dehydration, and (most of) the soreness that have been the bane of my existence since Monday, that caused a massive overhaul in my IV routine several days into the course, that necessitated the addition of an oral antibiotic and an extension of an inhaled one on top of the IVs, and that proved conclusively the need for a second port. And with the loss of these things came the rebirth of my energy levels, my appetite, my desire for coffee in the morning (yes, even at 11 am I need something before I tackle "morning" treatments), and, of course, my oh-so-legendary
Whew.
Also with this new day comes the reunion of my entire immediate family in NYC (my father flies in tonight on the redeye!), a chance to actually complete some of the tasks on my pre-Christmas to-do list (you know, little things like, oh, say, buying presents for EVERYONE, which should be no problem just so long as I can complete it all between now and Wednesday, when I'm scheduled to have the aforementioned second port placed), and news that New York will most likely be enjoying a white Christmas this year. Actually, even a full on blizzardly "grab your skis and go gliding down 5th Avenue" style Christmas seems probable at this point. Because while this new day was just a really, really cold one, word on the street (and on my iphone's nifty little weather application) is that the next couple of new days are likely to bring with them a whole lot of wet, white, fun, beautiful, glittery snow.*
*All readers should be advised that the author's primary understanding of snow comes from a childhood spent in the mountains of Colorado. The above description of snow may not be accurate when describing New York City snow, which faces the unique challenge of remaining white in an intensely urban environment. A more apt description of said snow might include the words "dirty," "slush," or even "grey," but hey, it tries its best.
Okay, so the weather forecast says snow, and it's the holidays, and people will be traveling, the roads will be wet, and, unfortunately (tragically, even), there will most likely be loss. Which, of course, is true every year around this time, I guess. But this year that fact hits home for me in a very different and meaningful way, and awkward as it might be I thought I would be remiss not to at least try and get this out there somehow. Because I think it's something that a lot of pre-tx people -- or families, friends, or loved ones of pre-tx people -- struggle with at one time or another.
I am, first and foremost, a daughter/sister/cousin/niece/granddaughter/friend/girlfriend/human being. And, because I am these things, I have loved ones who are traveling this holiday season, some near and some far, and this year more than ever I am acutely aware of my desire for them to arrive safely. I say "more than ever" because, unfortunately, I am also more than ever aware of the loss.
This is true on multiple levels, the first being that quite simply I am deeply in touch right now with the fact that life is precious. I spend a lot of time in the hospital. I'm on the transplant list. I have a lot of adult friends with cystic fibrosis. I used to have more adult friends with cystic fibrosis, painful as that is to say. And oh yeah, did I mention I'm on the transplant list? Let's face it, at some point it becomes impossible to deny how clearly life is meant to be cherished, and also how fragile it can sometimes be.
The second level is a little more complicated. Waiting for a transplant from a deceased donor is a total roller coaster of emotions and strange desires. This Thanksgiving, as we said grace around the table, my father asked my grandmother to include a request for new lungs. After a brief pause she cleverly added, "And God, if you would see fit to have some new lungs appear somehow, we would be forever grateful."
It's a good prayer, isn't it?
I received a beautifully written email from a family member the other day that mentioned her own struggles with praying/hoping for new lungs, knowing of course how those lungs would have to come. It seems like this is a widespread concern within my family, and it makes sense, because no one ever wants to think of another family suffering a tragic loss when they themselves are hoping to avoid the exact same situation. Transplant provides the unique opportunity for the loss of one life to extend potentially several others, and yet that one loss is still, in every sense, just as heartbreaking. And transplant patients/families feel this tug-of-war between our need for organs and the tragedy that accompanies such a gift at a time when we ourselves are most aware of the basic human urge to survive -- and of the grief of those who are sometimes left behind.
So how do we go about reconciling all of this? Well, the short answer is that I don't know. Not now, and probably not ever. I haven't found a perfect solution, and as a consequence I'm still struggling with the news of this impending snowstorm and the much more immediate blizzard of emotions that it has already stirred up in me. But the best I've been able to come up with so far is to pray that all the many friends/loved ones/human beings out there traveling this year reach their destinations safely, but that whenever loss is unavoidable, that perhaps some lives may be saved through that absolute most generous of gifts.
And that we may all wake up to find that tomorrow is, yet again, another (beautiful, wonderful, and miraculous) new day.
Hi Piper,
ReplyDeleteThank you so much for sharing all those messages with us.
I’m a 27 years old woman from Montreal. I have CF and I’m also waiting for a lung transplant. Before January of this year, I was a full time economist for an energy company and I never thought, at that time, that a transplant was a necessity in a near future. Sometimes, reality catches us back! I really like the subjects that you discuss in your blog and it makes me feel good to see that someone else has similar concerns.
Have a nice holiday!
Annie
arcteryxca@yahoo.ca
It does hurt to think that we want you to get those lungs so we can continue to live our lives with you in it, knowing that another set of friends will have to learn to live their lives without their friend.
ReplyDeleteTake care on this winter wonderland day and stay warm snuggled up with Sammy bear!!!
Piper, I've been thinking a lot about the wishing for new lungs but not wanting to wish that situation that makes it possible upon others. In my mind at least I've managed to delineate it somewhat into the before / after the event...
ReplyDeleteI wish that the person and his or her family who might befall a most unfortunate circumstance is able to provide life and that most precious gift of new lungs for you.
Enjoy the Snow!!! We're expecting over 20" in the Annapolis MD area. YAY! {{{hugs}}} ~Juliet
I have pondered this very comment myself Piper and put it down to the fact even though it is terrible that someone has had to die for me to get new lungs. They have given the most amazing gift ever. It is just a pity they are not here to see the joy that they have brought to someones life. My thoughts are with you in hoping that you get your lungs soon. I know for myself l hope that my lungs arrive soon so l can enjoy the summer time outside the house. (summer in Australia now. Take care and Merry Christmas to you and your loved ones.
ReplyDelete