Sport 28: Autumn 2002
Inga Clendinnen — Louis
Big Louis is dead. I found out only yesterday, because the last time I went to the Clinic I didn't meet any of the people who might have told me, which can happen when you're down to three-monthly visits. He might have died as long as five months ago. It is odd to discover you have been orphaned for months without knowing it. Louis was the first person to receive a liver transplant at the Unit when it started at the Austin Hospital here in Melbourne in 1988. Units were already working in Brisbane and Adelaide, but he was our first. They'd tried transplanting livers long before that but everybody used to die, so they gave up for a while, but in the early eighties they began again. What had changed the odds were better operating techniques and yet another miracle drug, this one called ‘Cyclosporin’. Cyclosporin controlled rejection without too much damaging the patient. It came into use only in 1989, so Louis must have survived his first few months without it. The Unit people must have been proud of him.
So Louis was Number One. The last one, operated on about a week ago, is Number 301. I am Number 108, from April 1994. We write our history in the old-fashioned way here. Dates and numbers matter in this long, thin, accidental family I have joined. We care about lines of descent, too, so Louis was our grandfather. He was a big, slow-moving Frenchman or Belgian in his late sixties who couldn't or wouldn't speak English. He would sit peaceably in the waiting room on his too-small chair, one large hand on each knee, and exude the mild benignity of an elephant, or perhaps a bishop. It was good to see him slowly moving up the corridor ahead or lying back in the padded chair for the routine blood test. He was our talisman against the fates, and we took comfort from his being.
The family has no politics or class, and prior relationships are erased on entry. Class is officially erased too. Because humans happen to be endowed with two kidneys and only one is necessary for life, a page 24 friend or kinsman might surrender the other to a specified donor, as Kerry Packer's helicopter pilot recently did in a blare of ambiguous publicity, but even our richest man couldn't buy himself a liver. ‘Living cadaver’ transplants, as they are called—liver, heart, lungs—are done democratically, in designated public hospitals, with public patients queued in accordance with need. We are nonetheless selective. There are no honorary members. The only way into the family is by way of the operation. People on the waiting list don't even meet us post-transplant people except for one person selected by the Unit to be their counsellor or ‘next friend’. This segregation might be no more than a way of ordering the doctors' time, with some days being allocated to a string of individual pre-transplant interviews, and some to the crush of the post-transplant clinics with people being called into the offices one by one, but I suspect it is also policy. People on the waiting list panic easily. They need to know some things, but not others, and they haven't yet learnt to trust the medicos, who naturally want to control the information-flow so that no one gets muddled or demoralised. However, we sometimes meet. Before my transplant I had seen my doctor and was waiting by the Unit's lift, shaking, yellow, cradling my distended belly with my arms (with advanced liver disease the abdomen swells grotesquely) when a slender sari-wrapped Indian lady standing in the corridor was suddenly beside me, holding my shaking hand in her steady warm ones and saying, ‘You'll be all right. I promise you, you will be all right. It is only three months for me and look, already so well!’ She smiled into my eyes like a loving little sister. ‘And today I am off to Sydney to be with my husband! They are letting me go to Sydney!’ The lift doors opened, she pulled my head down and kissed me firmly on the forehead, pushed me inside, and I saw her blessing me through the closing crack as I slid through the floor.
I was startled by this emotional surge from a delicately scented stranger, but I was also warmed by it. Months later, after my own transplant, I felt the same surge of affection for a yellow, wasted man trying to cradle his swollen belly in exactly the same place: the little hall by the lift outside the Liver Transplant Unit's offices. I shared her impulse but lacked her courage. I didn't speak. Guilt lived with me until I came across the man in the surgical ward after his transplant, page 25 transformed back to his original form of a small tough Scot with a spiky ginger moustache, and cheerfully remembering ‘the little Asian-looking fella’ he had once been.
A handful of pre-transplant people are terrified or suspicious or downright paranoid about the whole business, which can seem surreal, and then someone who has been through it is allocated to them to calm them. One woman I was sent to see sat huddled in a blanket in her hospital bed, persuaded that the doctors had not the least concern for her welfare and were intent on experimenting on her body. Another woman, startlingly beautiful even in her flattened state, was incandescent with rage at the unseemly eruption of the physical melodrama which had plucked her from the world and sequestered her in a tiny blue-curtained tent (she kept her bed curtains furiously drawn). She had festooned the tent with what looked to be hundreds of cards, communiques from her lost life. She finally acquiesced, I think largely because I described the process of the alternative death. Then she died anyway. Most people on the waiting list die. Australia has a very low donor rate, one of the lowest in the world, which used to surprise me. I thought a bunch of secular humanist hedonists like us would be easy givers, and suspected that the influx of migrant families with strong religious backgrounds explained the low rate. That seems not to be the case: provided the correct rituals are followed (naked candles in Intensive Care if required), those families tend to be generous. Perhaps the hedonism is the problem. Perhaps we refuse to think about death exactly because we believe it is the end, and there can be no previous discussion, with everyone being agreed they will live forever. Then families lurching under the brutal impact of grief are asked to allow a loved one's body to be, as they think of it, pillaged. That is why the recent scandals in Britain about the unauthorised taking of organs for research distress me. They will make people even less ready to think about the simple realities, so even more people will die.
For we lucky few who enter the family the benefits are multiple. For example: the worst thing about being seriously ill is the loneliness. You know that nobody, neither your doctor nor your husband nor your best friend, can imagine what it feels like, especially in its more trivial manifestation: how your left calf will clench and tremble for no page 26 reason, how dread comes sliding smoothly out from behind the water jug. Your new family knows. They will say, ‘It was my right leg used to do that, quiver like a mad thing. And in the small of your back, like a big vibrator buried in your spine, do you get that?’ and you say, with relief, ‘Yes I do’, and the loneliness is less lonely, and you also know there will be someone eager to listen when you need to talk about fluttering muscles, inexplicable tastes in the mouth, inexplicable tears. The doctors might give you a brisk explanation as to the why of it, but they can't help you find the words to describe how it feels.
In the Clinic I also found again the radiantly chaotic social world I thought I had lost when I left primary school and began a lifetime of picking and choosing friends and associates. The studious egalitarianism of the Australian national health system serves up a marvellous mix of genders, ages, classes and ethnic origins. As it turns out—as my betters have told me but I never really learned—the greatest of these is class. People I would never have met, never glanced at, never even seen in my ordinary life as a middle-class academic of Anglo ancestry, were now sitting next to me for a couple or more hours at a time, waiting our turn. I realised the privilege of coming to know, for example, Gloria. She would be up by 4.30 a.m. on clinic days to come in to Clinic by transport from her distant outer suburb, where I had never been, its name no more than a sociological tag for deprivation and disorder. She didn't have to leave quite so early, but she dreaded being late and seeming less than grateful. She would get home again by mid afternoon, to deal with her two small children and her superbly uncooperative husband. The drugs had happened to work in her to produce a soft flow of surplus flesh. Most of us had had our adventures with our protean bodies, but no one else billowed with flesh as she did. She had also become chronically breathless and uncertain of her balance, and now she was a diabetic, which sometimes happens. You can't fool with bodies without some unintended consequences. Gloria would sit with her pretty hands in her matron's lap and the face of a pretty girl lost somewhere in her wide one, and when she saw me she would direct a vague smile somewhere past my right shoulder and pat the seat she had been keeping beside her. As far as I could discover (she spoke little and softly) she was at once page 27 desperately shy and shamed by her shyness and shamed by her flesh. She was also determined to be stoical, which is why she needed a friendly presence beside her. Some husbands and wives always came the clinic with their spouses and acted as talking chiefs for them, thereby re-enacting a way of being married I had forgotten about, but she had to get through everything alone. She was fiercely grateful to the Unit's doctors, and fiercely obedient to their instructions. We all were—we knew what we owed them—but we would moan and groan and trade jokes about them. Gloria never did. These people had chosen her and cared for her, as I think no one had done before.
Pat wasn't shy, just scary. He looked as if he had been rough-carved over a chunk end of redgum; a long bristle of red hair ran right down the middle of his big bare skull; and his arms, and for all we knew all of him, were blue with tattoos, most of an embarrassingly intimate nature. No one was game to talk to him for a while, but I thought he could scarcely turn on a grey-haired old granny, or not in the Unit's waiting room, and one day sat next to him. He had been, as he looked and in his own description, ‘a very bad lad’, deeply into illegal substances, violence, motor bikes and alcohol. Then at 28 he discovered he had ruined his liver and that he might well die soon and unpleasantly, and immediately after that some well-spoken strangers in white coats were ready to try to give him another chance provided he mended his ways. So he did. He gave up drink, drugs, even smoking, and now when he went to the pub to see his mates he drank lemon squashes. He'd also sold his motorbike: if he wanted to go anywhere he walked or rode his push-bike or took a train. (He lived in a suburb where train-travel was quite peaceful, provided you were built like a tree.) He was translucently proud that his thirteen-year-old son was building his first machine in the garage—he'd done the same when he was thirteen—but he himself was through with them. Motor cycles were too dangerous, now that his body didn't belong exclusively to him. He had tried to throw his life away, and it had been given back to him. He would not throw it away again. What was most noticeable about Pat—what I privately thought rare and noble about him—was his refusal to moralise from his experience. He was utterly free from the middle-class urge to preach. This had been his personal lesson, page 28 and he had learnt from it. He's still going well.
Most arguments against transplants make me angry, like those made by fastidious people who do not suffer from a terminal disease and who find the notion of brain death too complicated or the whole idea of transplantation of organs too aesthetically distasteful to be contemplated, while here we are in our various bodies, walking around enjoying ourselves. We are the argument for it. Of course our situation is a touch precarious. Given the chronic shortage of donors, what being accepted on to the waiting list for a transplant most feels like is being snatched out of a turbulent river and hoisted up onto a rickety suspension bridge. You know you would surely have died in the water, but you still don't feel too safe. But soon the people ahead of you on the bridge are turning to hug you, cheering you on, and telling you the quivering and rocking is normal, the vertigo is normal, everything is normal and you will be, indeed you already are, fine. Over the next few weeks or months you meet more of your new family, and sooner or later they'll point to a slow-moving shape up ahead, and say, ‘That's Louis. He's Number One.’ And now Louis is gone and we turn and clutch each other, because without his weight the bridge is trembling.