‘Many people see it as offering a gift. A gift of life to someone else who would otherwise die. Perhaps it could turn this terrible night into one that means something.’ I pat Stephanie’s hand, the one that is squeezing her son’s fist.
‘Can it wait till morning?’
I nod. ‘It can. There is the potential that your son will become more unstable the longer he stays like this. But you should take all the time you need.’
I leave the room hoping that, by tomorrow, anger will have slipped away under pressure of sadness, fatigue and disbelief. That it will leave behind a desire for renewal, a desire for her son to live on, albeit in a purely mechanical way. That she will see it as the better alternative.
As I walk back to my office, I think about one of those long-ago lovers’ conversations I had with Paul on the bed in the studio before we were married. He had asked me why I wanted to move on from nursing and become a donor coordinator.
‘It’s what I’ve always wanted to do. Everyone, except Louisa, thought I’d do medicine, like Alix. Because I was smart and had the grades. But I found out about donor coordinators when I was at high school. They didn’t exist when Alix was a surgeon. And I thought what a good idea it was to have someone to orchestrate those deaths.’
He shook his head, and I realised I had made myself sound like a god or a devil. I had meant orchestrate as in compose; he’d taken it to mean assist.
I tried to explain myself. ‘Everything depends on a certain definition of death and also on making sure everyone understands that definition of death. Most people don’t. I mean, what do you think death is?’
‘When someone stops breathing or their heart stops. Something like that.’
‘That’s what everyone thinks. But it’s not right. Even if you have a heart attack, the real problem is that there’s not enough oxygen to the brain and the brain dies. Death is the irreversible end to all brain and brain stem activity; your heart might beat, a machine can help you breathe but it’s not you, not any more, because everything that makes you you has died.’
‘But don’t people come out of comas sometimes? Aren’t you scared you’ll turn off the machines just before they’re about to wake up?’
‘No, because people in comas still have brain activity; their brain sends out electrical impulses and we can measure that. But if there’s no brain activity, no electrical response to stimulus, then there never will be; it won’t come back. That’s what I have to try to convince people of because if they don’t believe in brain death they’ll never donate.’
Paul stood up to make coffee in plastic cups with popstick stirrers. He didn’t say anything while he spooned sugar and boiled water but when he gave me my cup and sat back down on the bed, propping my legs over his he said, ‘What would you do if I died?’
I shivered. ‘You’re not going to die but if you did I’d donate your organs. We need lots of young healthy organs like yours.’
‘But is it true what you hear about organ donors not being looked after as well as other people when they go to hospital?’
‘No way.’ I shook my head vigorously. ‘Because someone who’s brain-dead requires as much care from me to keep their organs going as someone who’s not. It’s end of life care. And I do care.’
‘Wouldn’t it have been easier to be an artist?’
I hesitated before I replied, almost embarrassed by what I was about to say. But I said it anyway, because it was Paul and I loved him. ‘No. Because art is my link to my father. That makes it too fragile to expose to the hurly-burly of a career.’
Things too fragile to expose. What are the notes I am writing for the exhibition then? Yes I have edited and yes I have cut before I pass them on to Sarah but in the notes there is Alix and Dan and things like love and death and birth and grief and, if I am not mistaken, often there is fear. All of these are things too fragile to expose. Alix’s love for me – was there any? The episodes with the pills have rekindled a doubt that has always niggled. Alix’s love for Dan – too much perhaps. And Alix’s love for Jack – not enough to stop the deaths. Underneath it all is the ambiguous feeling I have for Paul, which is surely not love because if that is love, then it is not worth dying for.
I tidy my desk and, as I close the door of my office, my phone rings. It’s Paul’s number so I send the call to my message bank.
Dread. That is what I feel when he calls me now. Because he will most likely want to cancel something or to break a promise and I dread both what he might do and also what I might say in return. Fuck off is something I have never said to him but I can feel those words perched like hawks on the end of my tongue, ready to plummet from my mouth and rip away at the carcass of our marriage.
I stuff my phone back in my handbag, hating it, wanting to turn it off, imagining what it might be like to not have it by my side all the time, this constant reminder that there might be news about Addie – either good or bad – and I hate that I am so afraid of the sound of my phone ringing. I pass by Stephanie’s son’s room and I think of him lying there, the one without fear, and I wonder if there will ever be a time when I am not terrified of the past and the present and the future.
THIRTEEN
I head straight to the change rooms, intent on outrunning myself. I step out at the same time as Nick, who is also dressed to run.
‘That kind of night?’ he says and I nod. ‘Where’s the best place to run it off?’
I lead the way to my regular route, not concentrating on roads and cars but thinking of the man beside me, the stranger in town, the Anna to my Gurov. I can feel that he runs for himself and himself alone, like me, no iPod, just the sound of thumping Nikes and strained breath for accompaniment. There is no look of fierce concentration on his face, no indication that he is actually running off workday stresses; he looks almost vacant, as if running causes his mind to run too, keeping just ahead, relishing the rush of wind through cells, whilst his body is simply pulled along behind.
We finish my usual circuit more quickly than normal and I am struggling for breath when we stop, having pushed myself to a faster pace to keep up with Nick. ‘Thanks,’ he says. ‘I enjoyed that.’
‘Me too.’ And I did, even though we did not speak; instead I imagined what it would be like if he came into my dreams tonight. My next words rush out. ‘If you’re not doing anything on the twenty-third and you like art, you should come along to this exhibition I’m curating. Lots of people from work are coming and it’ll give you a chance to meet some of them.’
‘You’re an art curator in your spare time?’
‘It’s a one-off thing.’
‘Are you in tomorrow?’ he asks.
‘Yes.’
‘Maybe you can tell me more about it then.’
We are back at the change rooms and are in the way of people coming and going so we separate and go back to our lives.
From one hospital to another. From work to Addie. ‘Hi darling,’ I say when I step up to Addie’s bed. Her eyelids flicker open. Because Paul is the only other person there and I have to share the news with someone I say, ‘She opened her eyes.’
Paul jumps up. ‘That’s the first time.’
‘Maybe the infection’s gone.’
‘Maybe.’
We are standing on opposite sides of the bed, on opposite sides of our daughter, and I feel as though Paul can also hear the words that neither of us want to say: I hope so. When did we become hope-less, I wonder, or not hope-less but so scared of the despair that lay at the other side of that four letter word that we can not even bring ourselves to utter it.
‘You can go home now,’ I say.
‘I’ll wait to see what the doctor says.’
‘Okay.’
And we stand in that spot for an hour or so, both studying Addie, not speaking, but not because we are cross with one another; it is because we know the fear of waiting. I suppose there must be a kind of closeness in not wanting the other to have to endure it alone.
‘Fev
er’s gone.’ The consultant doesn’t bother with formalities. ‘She’ll stay on the vanc for five days but she’s back on the waiting list.’
I bend down to kiss Addie’s cheek, brushing my smile along her skin as if that could make her smile again too. As I am leaning over her I feel a hand touch my hair and I look up; it is Paul and he is lifting my hair up and out of my eyes and running his hand over my cheek, just as my lips stroked Addie’s.
I smile at him and he smiles too and I really see his smile as I have not bothered to see it for some time. It is the same as the first smile he gave me and I wonder if it is not that he has changed or that I have changed but that we have changed and, if that is the case, might it not be possible for us to stop being the Paul and Camille we have become and to be the Paul and Camille we always thought we would be.
I even allow myself to hope, for just a moment, that the results of our tests will come back tomorrow. That one of us will be compatible. That we will give Addie a piece of our liver. And that we will all leave here together, ready to go home and be a normal family, not a family as much under attack from the biliary atresia as Addie’s liver is.
Addie spends small moments of the night awake and, whenever she wakes, she sees her mother and her father there together, not separately coming and going. She doesn’t talk because of the breathing tube, but I tell her that her Auntie Fliss will be here in a couple of days, and Paul and I take turns to sing nursery rhymes to her; he remembers that one of her favourites is ‘Sing a Song of Sixpence’ and that whoever is doing the singing needs to peck off the nose of everyone in sight, so he leans across and tugs at my nose and then the nose of Addie’s nurse. We laugh and I am almost shocked at the sound; it hurts my ears. When did everybody stop laughing? When we came to PICU or before? Certainly, nobody ever laughed in PICU but was that the defining moment?
I cannot recall but find myself saying, ‘If we laughed more there’d be more of a reason for her to wake up and get better.’
‘There would.’ Paul nods then he reaches his hand across and tickles my neck.
The jolt of both his action and the sensation cause me to laugh too loudly, in a kind of half-scream, half-gasp that, before, I would have thought was disrespectful to the other anxious families all around us. But now I stretch my arm over the bed and do the same to Paul. Addie opens her eyes and what she sees is both her parents laughing, together.
Addie is extubated before I go to work and her transfer to a regular ward is planned. She is still sick but a transfer means that there are sicker children around and I am glad to have this point of reference: sick, but not at death’s door. I wonder, as I leave, just how many doors death has, because I seem to be surrounded by them, these openings that I never want to hear slammed shut.
At work, my first stop is with Stephanie and her son. There has been no decision on her part; her son will take his organs with him to the grave if she doesn’t act quickly and I wonder if she is the kind of woman who also throws out soap dispensers, rather than refill them. I gasp at my own thought. When did I become so hard?
I sit down beside Stephanie and say, ‘Tell me about him.’
Stephanie talks for two hours about a boy we all know, who was full of spirit and life, who was just about to start university, who couldn’t afford a car and so he’d bought a motorbike even though she’d told him not to, who played cricket in the backyard with his mates every Sunday and who always reminded everyone to wear sunscreen and hats because his father had died of melanoma when he was twelve.
‘Melanoma sufferers often need skin grafts,’ I say. ‘Your son could donate his skin to people who need it, just as his dad needed it.’
Stephanie is silent for many minutes. Then she says, ‘I thought you just took people’s hearts and lungs, that kind of thing.’
‘Patients always need hearts but there are lots of people who need other things to help them live. You can choose what you would like to donate. I can show you the list and maybe you could take a look at it and see if there’s anything there you think your son would like to give.’
Stephanie nods and I know that I have won.
I am in my office organising the virology and tissue typing tests when my phone beeps. It is Jack, wanting to meet to talk about the exhibition notes I’d sent him. ‘Not now,’ I mutter because every extra minute I take increases the risk that Stephanie’s son will become too unstable to be a donor and then people who need those organs might die, all because I stopped to send a text message.
I walk back to the patient’s room and begin to check his body for any self-administered tattoos or track marks. Stephanie asks me what I am doing every step of the way.
‘He never took drugs,’ she asserts and I want to tell her about all the mothers who believe just that, only to find out too late that they were wrong. But, in this case, Stephanie seems to be right.
‘I need to ask you some questions,’ I say to her. ‘Some of them might seem intrusive, but we have to check certain things so that we don’t unintentionally put anyone in danger. You can have a look at the questions first if you like. You might decide that someone else is the best person to answer some of them.’
‘I’m the best person. I’m his mother,’ she asserts as if she understands but I know she doesn’t, that she won’t until I begin.
‘Let’s talk about your family’s medical history.’ We start with the easy questions. We have a long conversation about her husband and the melanoma. Then we move on to her son.
‘Has he travelled anywhere recently?’
She shakes her head. ‘Just the Gold Coast for schoolies week.’
I smile. ‘Has your son ever had any form of cancer?’
The answer is no.
‘Do you know if he was a smoker?’
No again.
‘Could you tell me if he drank alcohol regularly?’
She laughs. ‘Of course he drank. He was a boy at uni.’
‘Would you say he had more than two standard drinks a day?’
‘I’d say he saved up his daily allocation and had it all on the weekend, just like most boys his age.’
‘Any history of mental illness?’
‘Of course not.’
I look up from the list and smile reassuringly. ‘We’re almost finished. Not much more to go.’
Stephanie nods.
‘Do you know if your son was sexually active?’
‘I’m his mother,’ Stephanie snorts. ‘What d’you reckon? I suppose he was but who knows?’
‘I can always ask someone else these questions if you like. One of his friends perhaps?’
‘I’m the best person to ask.’ She is firm about this.
I continue. ‘So would you have any idea how many sexual partners he may have had?’
‘No.’
‘Was your son heterosexual?’
She nearly chokes. ‘Of course he was.’
‘You’ve been very helpful. I’m sorry about how hard this must be. But the information will make sure your son helps as many people as possible.’
She hunches back into her chair. And that is the moment her son chooses to make a movement. Her hunch turns into a complete stiffening of her body and she whispers, ‘His arm moved.’
I have been through this so many times before and so many times it has nearly brought everything undone. I stand between Stephanie and her son, trying to get her to focus on me, rather than what she wants to see in the bed. ‘The movement was involuntary. It is just residual nervous system activity. It is very common and is not caused by any activity in the brain.’
‘Then how did he do it?’ She is not demanding any more, not crying, speaking softly, almost forcing the words out of her mouth as if she does not really want to say them or hear them.
‘His spinal cord is still active. The movement was like a muscle spasm caused by his spine.’
‘Thank you.’
So many families say thank you to me and I don’t think they really mean it. It is a
reflex of the mouth, involuntary, like the boy’s arm moving.
Stephanie looks defeated now, as if she cannot bring herself to follow the circle back to the beginning and start all over again with understanding brain death and what it means. She’s given in to tiredness and grief and incomprehension and accepts what would never have been acceptable to her last week: that she would allow her son’s heart to be taken out even though he could still move his arm. But this is the beauty in what I do – every day I see people like Stephanie who are heroic enough to give someone who is dying the gift of their loved one’s organs. And they do this even though it is so hard to understand what has happened to their own husband, wife, mother or child.
So I finish with the bits that mothers like. ‘Some people like to keep a lock of hair, or a handprint. I can help you with that if you like.’ The boy’s hair is worth saving, I think; it is thick and black and curls loosely against his neck. Mothers and lovers would want to kiss that hair, to feel it melt like chocolate against their lips.
‘I don’t need hair to remember him by,’ Stephanie says.
‘I’ll leave you with him for a while before we take him to theatre.’
Then, after the boy has been opened and picked and closed, Stephanie comes to find me. ‘I’d like to see him again,’ she says.
‘Certainly. Give me a few moments to arrange it.’
We walk together to see her son. She does not cry, does not say anything. She simply takes a pair of scissors out of her bag and cuts the curls from one side of the boy’s head.
NOTES ON AN EXHIBITION
UNCOVERED TORSO
(Oil on canvas, 150x110cm. You will note that the next work shares the same name, although both artists named their pieces independently.)
Jack rang Alix the morning after their first date and said to her, ‘Come to my house for dinner.’
‘When?’
‘Tonight.’
If I Should Lose You Page 13