My Accidental Family

By Lyn Loates

(first published in North & South magazine, May 2005)

One night in 2001, I had a liver transplant. I was the only person in New Zealand to have one that week. It’s not as if livers are sitting on ice, waiting for recipients. Put bluntly, it’s a case of would-be recipients sitting on hot coals, waiting for livers. Which is ethically - and aesthetically – confusing, I guess.

When my turn came round, The New Zealand Liver Transplant Unit was into its third year. I was number 87. By now an encouraging precedent had been set. Of the 86 people who had gone before, into the high-tech transplant theatre –"it looks remarkably like a space ship," I recall saying to the Martians as they counted me down - all had come out again, alive. "Nope, we haven’t lost anyone on the table, yet," confirmed the excellent surgeon, shortly before take off. And lo, at the end of a long period of darkness, number 87 also emerged, stitched and breathing.

Now, in late 2004, the majority of those who went before me survive still. The pre-87’s have become my marker. Whenever I meet a liver recipient, I ask their number. If their number is lower than mine I feel cheered, comment on how well they look and hope they are. Their apparent health and relative longevity is a confidence boost. I know, truly, that I am in extra time and sometimes need to meet a blossoming transplantee whose eyes are fixed firmly ahead, to shore me up.

But mostly these co-patients have stumbled off out of sight, determined to break from the horrors of liver disease and start life anew. That is sensible. A few, like me, have complications and are thus recycled through the ward, over and over. And each time the process of meeting new recipients begins again. We bond. Race, gender, age, culture, demographic - none impedes the closeness we share.

On my fourth admission, I mentally snuggled up to a leathery seadog who wore his rough woolly hat for the duration of his hospital stay, but who sobbed like a baby because of his pain, and because his post transplant tests looked threatening and because he couldn’t eat on account of all food tasting absurd and the doctors not being able to explain why. I told him how, six days after my transplant, I had tried to eat a ball of salt. It was an orange, actually. That made him laugh a bit. We felt like comrades under fire and decided we would win at all costs. I hope he’s out there somewhere, riding the ocean wave.

There have been several other link ups. During my episodes in the ward I have befriended an art teacher, a fashion manufacturer, a heavy-booted bikie, a Maori elder, a lawyer, a school girl, a former Olympian rower. Oh, and that’s right, a nurse who had never before entered hospital as "a horizontal". We all knew the despair of being skeletal of limb, bloated, yellow, itchy skinned and messy minded, fearful for our lives and utterly exhausted. We knew the anxiety of going into the Martian space ship, the relief of landing, and the magnificent highs and drum-beat lows of the recovery process. We knew the wonders of morphine, the significance of every tube penetrating our bodies, and the elation of having them removed, one at a time, over the ensuing days. We followed each other’s progress with a vested interest and celebrated each other’s steps towards our new lives.

We were also bearers of common secrets. For instance. Who else could possibly understand the waiting game, know the invidiousness of waiting for someone to die so that you can, hopefully, survive. Oh, my God, the pure, uncompromised self-contempt you felt at the beginning of each weekend as you divined – in a morally denuded way - that the next road wreckage might deliver your reprieve, is impossible to admit to anyone else.

And there’s the one that involves the trepidation of the pre-transplant hours, during which the potential new organ undergoes it’s own tests and you wait, bed bound, fingers crossed, for the word. Is the liver viable? Is it not? If it’s a no-go, have you lost your chance at life? Will another liver become available in time? You wait. You spend your hours in the hard hospital bed, praying that the orphaned liver is sound and healthy, that it will in due course be yours and that the ultrasounds and enemas and other checks and balances routinely performed since your admission will not be in vain.

It’s a tension shared by every expectant transplantee. Behind our half drawn curtains, we, the initiated, watch and listen out for the destiny of the latest admission. We share the relief when the go-ahead is given, assure them they’ll be "good as new" as they head off down to the spaceship, soon to join our small, mercurial, transplant family.

But sooner or later, one or other of us is off, hobbling out of the ward with excited relatives in tow. Those of us left behind feel momentarily bereft. The bond is being fractured. We wave, limply. "Thanks for caring", we say. "We’ll keep in touch." We don’t.

But actually, I have kept in contact with two of my journeymen, also people with complications, because despite the expertise of the medics, the familial support, the bonhomie of all comers, they’re the only ones who understand the loneliness and the uniqueness of the on-going transplant journey. Sometimes, you need to discuss it. They understand when you phone them at an unsuitable hour. "My latest tests have come back with bad numbers", you might say, bleakly. "What do you reckon?" Of course, it’s not their place to reckon anything. But it’s comforting to hear their voice, from down the island, sounding brighter than you remember. You wonder how they look now and assume that their eyes are no longer yellow, that they’re standard weight, natural skin coloured and possibly unrecognisable. You think it would be nice to see them, wonder if you’ll ever end up in the ward together, and hope, for all our sakes, that none of us will end up there ever again.

One day, three years after the initial transplant, I got mail announcing the annual thanksgiving service in recognition of transplant donors and their families. All recipients and donor families were invited. There are thousands of people in this category in New Zealand now.

I wanted to say thank you to one set of people in particular. My own donor family. And even if I didn’t know who they were, which I didn’t, the very act of attending would be cathartic, I figured..

There were several hundred in the congregation. Recipients of livers and hearts, lungs, kidneys, bone marrow, eyes and other transportable pieces, came face to face with the families of the deceased, families who had magnanimously offered life and hope not just to one person, but to several people all at once.

The recipients lit candles in memory of the donors. The donor families were presented with a camellia plant . The Appasionata Trio - one of whom was a liver recipient - played Beethoven’s String Serendade in D Major exquisitely. That particular adagio demonstrates the great composer contemplating the duality of life and death. No-one could help but be moved.

The service should have felt uplifting. Yet as a recipient, I felt pinned down, inhibited. Here, among people who had lost loved ones, was it appropriate to show jubilation? Perhaps. But possibly not. Certainly, I did not want to appear mournful. That would be dishonest - and quite wrong. I tried enigmatic. It was the best I could do. I believe everyone did their best.

Yet, the emotions were palpable. Above the glorious, unaccompanied harmonies of the Heaven Bent choir, hovered a loose orchestration of grief and guilt, loss and hope, happiness and relief, clashing noisily and incurably out of tune.

This was a coagulation of the lost and the found, a disparate group bound by individual acts of philanthropy and by science. We were the givers and the receivers, forcibly unknown to each other but irrevocably linked to someone new, by flesh and blood. How eerie it felt, that day, in the cathedral.

For three years, my donor – about whom I have no determining facts – had been, by necessity, a phantom of my imagination. Not that, even. With nothing to go on, my donor was a person quite unable to be imagined. Now, in church, things had changed. My donor had become a phantom with a family and that family was quite possibly sitting right beside me.

A man in front of me struggled to remove his jacket, accidentally knocking me with his arm as he did so. He turned, nodded his apology. His eyes lingered for a moment. Donor families know the age and gender of the organ recipients. Perhaps he was a father or uncle or brother who had gifted a loved one’s liver to a 52 year old female. I was such a person. Maybe that’s why he looked at me a little too long. I noticed a small, fine darn in the sleeve of his jacket. That darn made him imperfect, normal and real. In that instant I recognised my need to attach some tangibility to the transplant.

From day one, post-transplant, my mind had wafted around the peripheries of the event, unable to humanise it. I had a liver, yes. I knew what it looked like, in a generalised way. But of its history I knew nothing. It had no belonging. Until that moment in church. In that moment, I mentally adopted the darned man; he is now notched in as my gift giver and I’m no longer dealing in the world of phantoms.

This is worth reflecting on. For the past three years, people have constantly asked the question, "Do you know who it was?" and I have always said, " I don’t. That’s the rule." And I would think, thank goodness that’s the rule. The rule saved me from a potentially life changing decision. To know or not to know my accidental family. For three years it had seemed enough to acknowledge that underneath the broad, puckered abdominal scar lay a recycled liver, working for me long after it’s original owner had gone. The matter of who, has been held safely in the abstract.

I guess that is why it took so long for me to write a thank-you card. What sort of a card would they like, these people I didn’t know. What image would suit? On the second anniversary of my transplant, I did what I should have done sooner. I sequestered myself in a quiet bookshop, and did not emerge until I had a card in a bag in my hand. The card was quite Zen, not religious, but spiritual in an undemanding way. I took it home, and in blue/black ink, wrote the most difficult words I’ve ever had to write. It’s hard being a faceless, nameless person writing to faceless, nameless people. You can’t even sign it.

And days later my donor family will have received that anonymous card, via my co-ordinator, and maybe they placed it by a vase of hydrangeas on a pine dresser. The darned man looked as if he may have done such a thing. And maybe he thought I was a person who might write in blue-black ink. Maybe the card is now held in a rubber band with the notes from the other recipients. Maybe for the darned man and his family, the picture is now as complete as it can be. Maybe they read the cards and letters from time to time and pause briefly on pregnant words such as "well" and "happy" and "life" knowing that their decision gave that writer a second chance. Maybe they cry. Maybe they smile, and understand the magnitude of their gesture and feel very peaceful. Maybe they encourage other people to become donors. I like to imagine they would.