another kind of birthday

This post is not about Val or about me, really. It’s about gratitude, and my dad, and how one year ago an organ donor saved his life.

A year ago March 5 we waited to hear if my father had lived through liver transplant surgery.

A year ago March 5 his colleague and friend, Dan, was wheeled into an adjoining room to be sliced open and have more than half of his liver removed, as a gift for my father.

One year ago yesterday my father got a new liver and a chance to keep living in this world with us for a while. In a few weeks I’m going to go visit him. He sounds well and sprightly, and amazed to be maneuvering his refreshed body up hills and through Mexican jungles. It is the most astonishing gift, this liver, this life.

In April last year a journalist for Rhode Island’s Providence Journal asked several of us willing liver donors to share our thoughts on the experience. In celebration of my dad’s luck and life, and in honor of organ donors everywhere, I’d like to share with you some of what I wrote last year:

* * *

April, 2008

The first significant moment for me was almost 10 years ago when Dad was first diagnosed with Alpha-1 antitrypsin deficiency and we learned that this could lead to cirrhosis of the liver and emphysema. That really rocked me. How could they be saying these crazy things about my energetic, smart, hilarious, curious, (nonsmoking, nonalcoholic) vibrant dad?? It was like we’d been handed a time bomb.

[2007-08 was], for me, a crescendo of anxiety with accents of wary hope.  Watching the symptoms of Dad’s syndrome accelerate this last year has been ghastly. It hurt to watch him suffer and be unable to do so many things he loves to do: hike, write, play guitar, travel … It’s been frightening watching his pain and other symptoms get speedily worse and worse and wondering how far it will all go and whether we could stop it in time.  Would he get a new liver in time – in time to halt the degeneration of his lungs and body, in time to reverse some of the effects of his disease, in time to save his life?  I’ve  been hyperaware of the passing of time this last year, aware that every day without a new liver meant a little more breakdown of his body.  It’s been maddening (in both senses: crazy-making and infuriating) watching him get sicker and sicker, knowing that if we just had a liver for him, he could start getting better.  Knowing what he needed and helpless to manifest it for him.

The year has also been characterized by chronic jumpiness: constantly waiting for luck to land, trying to live life in the meantime, never knowing how to schedule all the commitments and travel in my own work and life. I set up FMLA leave at work and tried to line up subs for all my events just in case.  In December I was invited to the India wedding of my best childhood friend, and as I got my visa and shots and travel gear in order, there was a whole parallel track of planning playing out in my mind as we waited to hear the results of Dan’s latest tests and I prepared to come flying back from wherever I was to Boston.

Still, for the last year, ever since his doctors told him he was sick enough finally to be on a transplant list, all this helpless anxiety has been leavened by a wary hope: at least now we could start the long, complex, uncertain process of trying to get him what he needed. I tried to keep my hope for him strong and alive but sort of dampened down, because things moved so slowly, and with such painful uncertainty and reversals of fortune. (Like when Dan made it through months of tests only to be rejected, crushingly, at that infamous final liver biopsy.)

As for my volunteering to be on the donor list: I knew from the start that because I am much smaller than my dad, I was unlikely to have a liver large enough to be a successful donor for him. Lahey can only have one potential donor in the pipeline at a time, so although my initial blood tests were all approved and I was prepared to enter the process as soon as needed, I was asked to wait until others had been thoroughly screened. This was at once a relief and a frustration. Of course I did a lot of soul-searching. I’ve never had surgery before, and of course the prospect was scary.  When Dan was rejected in December, I was on deck for the first time. I went online to see what the scars of other liver donors looked like and I took a good look at my own belly, imagining its smooth topography altered by a huge scar. I was scared of the testing, terrified of possible surgery, and aware that Dad himself was conflicted about allowing his own children to make the choice to risk themselves on his behalf.<

But there was never any question in my mind that I would do it if it came down to my liver or Dad’s death.  That’s the advantage of an extreme enough moral quandary involving your own beloved family: even though I was terrified at the idea of harming my own body, even though I didn’t know exactly how I would wrestle my scared self through the process, I felt sure (as sure as I can be without actually living it) that I could do it. I want my dad. I want my dad to live. There was a satisfyingly primal simplicity to the equation: if my liver equals Dad’s life, well, what other choice is there?  And even if my liver was probably too small, I wanted to go through the same tests my sister underwent, because we are all invested in this family gamble. But- I was also frustratingly aware that my willingness and my type-B blood were not enough, that testing my liver was a last resort because the odds were, my liver simply wasn’t going to work. And there was another thing about being on the donor list: it gave me a chance to contribute to hope, to Dad’s hope and my hope that something would work out for him.  I needed to be part of that hope, a vested member in it. Because one of the hardest things in this whole ordeal, as anyone knows who has watched illness sap the strength of someone they love, has been not being able to do anything.

Finally, but very importantly, there have also been some amazing grace notes to this experience so far. I am very close to my dad, as I am to all my family.  Although normally we talk a lot, especially about ideas (about art, history, the interests that drive our work), our relationship has always been grounded in the little acts of daily life that make a household and a family: gardening, going for walks, making dinner, building a birdhouse, going clamming. As he has become sicker we’ve had to find less active ways to interact, and we spend a lot of time talking.  Without the diversion of activity for our hands, our talks have become more direct, more personal.  So have my conversations with my stepmom and sister. I think somehow we have all been broken open by this experience, and our guts are a little bit more out in the open.

I’ve been trying to find a way to say this next bit without sounding unbearably hokey and so far I haven’t succeeded, so here it is anyway: one of the greatest gifts for me of this whole wrenching experience has been watching my father meet these unkind turns of fate with the most inspiring simple pragmatism and grace. He doesn’t do some kind of stiff-upper-lip thing, pretending nothing’s wrong; nor does he wring his hands, complain and berate the universe for greater fairness.  He has generously shared the salient and humbling details of his deteriorating condition with us, knowing it made us feel better to know exactly how things were going. And once those things were said, he has kept his focus firmly on all the rich details that make up life, this lovely and interesting and peculiar life that we all keep living together, full of writing and travel and curiosity and birdwatching and terrible trilingual puns. I’ve been taking notes. I hope I can dance with my life’s challenges with as much vitality and grace.

I ought to say something here about Richard [a family friend, and the other liver donor finalist] and our new “liver in-laws,” as I call Dan and Jean, but I think everyone else has covered it already. The word hero tends to come up, and it’s quite apt.  As I wrote to Dan before the surgery, I don’t think I can ever convey how grateful I am to him for taking this leap on my dad’s and family’s behalf.  (And to Richard and our other friends for offering the same.)  It’s the most amazing generosity I have ever experienced.

* * *

Hello again.  This is me back in March, 2009.  My dad has been healing steadily and amazingly all year.  Yesterday he wrote that he thinks he shares with Valerie a feeling of reprieve, amazement, luck, life. He characterizes it this way:

“… a heightened awareness of what a special thing it is to be alive in this world. It begets a fascination with the trivial, an appreciation for colors, smells, tastes, the day-to-day gestures of kindness, and a hunger for touch, for tactile connectedness with all the things that make living such a joy.”

Here’s to love, luck and livers.

Here’s to organ donors, bone marrow donors, and blood donors everywhere.

Here’s to the livers of life.  Here’s to making living a joy.  L’chaim!

Happy birthday, Dad.

Deborah

* * *

A bit more info:

Out of a desire to give back, and perhaps to save someone’s life as Dan saved our father’s, my sister and I have both joined the global bone marrow donor Registry.

Here are two of the articles about Dad’s liver transplant:

• interviews with Dad and Dan in the URI campus paper
• “He badly needed a liver and seven people stepped forward” – Pro-Jo article, April 2008

More information on organ and tissue donation can be found here:

• United Network for Organ Sharing
• OrganDonor.gov
• Donate Life America