October 25, 2015

Survivors and Heroes

Post-transplant day #685. Survivors and heroes.

There are just some days where I am absolutely humbled. Times when the face of true grace is revealed to me, when something divine is on display and if I pay attention, I'll learn something about what it means to be human. It happens in the people around me, when some occasion strips away the patinaed armour of life that usually hides people's true selves and I can see underneath -- and meet and come to know -- those individuals for whom "every man for himself" is an antithetical notion. This was one of those days.

LiveOnNY threw a luncheon to honor donor families; and they made sure there was a recipient at each table to represent our ranks, say thank you, and honor their nobility.  (And nobility IS the word - for they did the right thing at the hardest of times.  When your world is crumbling around you, saying “yes” can be monumentally difficult.)  And so I attended that luncheon, meeting many donor families, and in particular the five families that sat at my table.  

This was not a black tie affair, but a suit was appropriate; and it was held in one of the ballrooms of the New York Marriott Marquis Hotel in Times Square.  Many of these families traveled quite a distance to be here.  All of them were somewhat subdued and, I think, a little shocked at seeing so many other donor families, as well as getting to talk with so many representative recipients.  I can’t blame them - they had lived through a difficult, extremely stressful time of their lives during which each made the decision essentially in isolation to donate their loved ones’ organs.  Being approached in the hospital, during the final hours of a family members’ existence (once they’ve already been declared brain dead, that is) is a horrible time to have to make a decision that could potentially affect several other people’s lives - and yet that’s exactly what must happen, especially if that decision hasn’t been made and discussed long before any need for it.

One of the more interesting series of speeches of the afternoon was from two donor parents, Frank and Kelliie Cutinella.  You may remember their son Tom died after a fatal hit in football one year ago.  They were gracious and intelligent people.  And while we mourn the loss of a bright young life like Thomas’, we can all celebrate the lives saved by his organs - because this lives were standing on stage with them!  Three of the recipients were there, including a heart transplant, kidney transplant, and kidney/pancrease transplant (which is fairly rare).  I can not imagine a more graphic way of describing the direct benefit of the slogan “live life, then give life.”

The heart recipient, a vibrant young woman named Karen A. Hill, received Tom’s heart on October 23rd last year.  She made a great point about the relationship between the clouds and the silver linings of this existence.  "A world without disease and hardships would be a world without survivors and heroes.”  I hadn’t thought of it quite like that before.  

Also speaking this afternoon was an acquaintance I’d met shortly before I left Durham - Rosemary Hargaden.  It was as if she was my a mimic of my own inner thoughts, taking the prayers and dreams and gratefulness I feel from the world of the ethereal and making them concrete with words of thanks and illustrating what it means to be living again.  Personally pleasing to me was this sudden reunion with another NY-to-Duke CF double-lung recipient. There’s a small but steadily growing club of us.  A third one was there, too, though her name is slipping my mind right now.  But when I think of them, myself, Denise, Piper, Michael, and Jason, and the one orthodox guy who didn’t survive - I am so incredibly amazed with the graciousness of the New York doctors who may have lost our business, but did the right thing by referring us to Duke.

The afternoon ended with a medal presentation - each donor family received a gift box with medallions of appreciation.  My various families collectively lost two sons, two husbands, and a sister.  With a single exception, they all died of brain aneurisms, which makes me wonder if that’s the most common cause of death leading to organ transplant.  The one exception was one father’s son, one of twins, who at 17 was shot in the head.  This father seemed like he didn’t want to be there very much, but his sister (the boy’s aunt) very much did.  So I guess what helps one person grieve just makes it worse for another person.

I’d have liked to have a transplant doctor or surgeon speak - they’ve seen the vast amount of good transplant can do and rarely get to speak to or thank the donor families themselves!  They could also help deliver a message that needs to be stressed:  that though the hardest part is over, the journey as a donor family never ends.  You will always be an example of what it means to Do The Right Thing, true altruism in an age of true selfishness, and one of the best ways to honor your loved one is to push others to become registered donors, too.  For beating back the darkness is the task of all of us involved, flipping the story to the point where organs outnumber the need is the Olympus we must climb, yet can’t climb it individually.  It must be a team effort - donor families, recipients, doctors, and volunteers, all roped together.    

But perhaps this soapbox is best saved for another day.  I really just wanted to write to say thank you to the donor families - those who attended today and those who didn’t.  The families here in New York and the families in The Triangle, and the families all over the world.  

Today I was reminded that life goes on even after our passing, a life where our loved ones bravely soldier on, advocate for the next ones down the line, and almost without meaning to become survivors and heroes.

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