Jesus Wants Me For a Sunbeam Page 3

  But the swollen glands remained swollen; a blood screen hinted at vague abnormalities.

  Their local doctor — silver-haired, silver-tongued — was reassuring as he studied the print-out.

  ‘I’ve seen numbers like this before,’ he said. ‘No cause for concern. Probably just a virus.’

  ‘Could it be serious?’

  He shook his head: ‘Of course we’ll repeat the test in a week or two. Just to make sure everything is back to normal.’

  Rick and Linda exchanged glances: ‘Then it could be serious?’

  He smiled reassuringly, but the smile seemed to lack something: ‘I can’t see any point in worrying about it yet.’

  They worried for a week: in small bursts at first, but lengthening, and growing uncontrollably as the child failed to improve.

  The repeat screen was equally ambiguous. The doctor, while conceding the figures on his print-out ‘might’ not be as normal as he had first thought, still refused to name any disease, or even nominate a shortlist of candidates. He filibustered smoothly for some time before Linda interrupted:

  ‘If it might be something, what might it be?’

  ‘It would be premature to say. There are many possibilities.’

  ‘Serious?’

  ‘Some serious, some not so serious. But that applies to any illness …’

  Rick and Linda rose simultaneously, angrily; Rick demanded a copy of both test print-outs which were reluctantly provided. From the receptionist’s phone they made an urgent call, and drove immediately to the rooms of a specialist paediatrician: Eve Harrison, an old school friend of Linda’s. Short, compact, quick-talking, Eve had been known for her frankness at school; she showed no hesitation in applying a label to the blood screens at first glance, a word Rick and Linda had already begun to sense, if only from the glare of its previous absence.

  Like most parents, they had rehearsed over the years for that moment, emotionally: the moment they might hear the word leukaemia spoken to them, spoken at them. They had read the true stories, had tears jerked from them by films based on real-life events. They had grieved, vicariously, for other children: small strangers who were nevertheless part of the shared public property of parenthood. News of the illnesses of these others — friends of cousins of friends, or cousins of friends of cousins — spread as rapidly as jokes or gossip through a vast network of waiting, eavesdropping parents, in hushed, horrified tones.

  ‘Such a lovely family.’

  ‘Nothing can be done? Surely these days — with all the new drugs …’

  Beneath the horror of such stories there was also, surely, a deeper half-hidden note of relief: that it wasn’t happening to them, and theirs. Perhaps there was even an odd warped gratitude towards the victim, who had somehow — although this dark thought would never be put into words — saved everyone else by being chosen in their place: a statistical scape-goat, a statistical sacrifice.

  For Rick and Linda there was also, at the end of that terrible week of waiting and worry, an odd feeling of relief that it had happened to them, and theirs. Anything was better than uncertainty; the waiting had been intolerable, the fear of the unmentionable had almost come to be a desire for the unmentionable; its certainty, its mention, was at least a resolution. To finally hear the word spoken aloud provided a focus for worry, a definite enemy that they could now face, and fight, together, as a family.

  A bone marrow biopsy the following morning gave an even clearer view of this enemy.

  ‘Remission is possible,’ Eve Harrison told them. ‘But everyone who has this type dies of it, eventually.’

  The young parents glanced at each other, more composed and prepared: ‘How long?’

  ‘The mean survival rate is three years. Fifty per cent of the victims are still alive at three years.’

  They felt almost grateful again for these blunt figures: three years was better than, say, three months. They felt, after the initial diagnosis had taken everything away, that they had been given something back.

  Emma sat on the thick carpet in Eve’s small office, solemnly reading a brightly coloured picture-book, ignoring their discussion. Three years was the length of her life to date: she was being offered her entire lifetime, repeated. Her parents sat watching her, breathing a little more easily. For the moment they could fall no further; they could even permit themselves a small ration of hope. A cure might well be found in three years. A marrow donor might even be found, although Eve was as frank as always on this: odd blood-lines in Rick’s family — a Finnish great-grandparent — had left the child with a rare tissue-type, possibly unique.

  ‘Of course we’ll type you both,’ she said. ‘And Ben. And all the grandparents, if they’re willing.’

  ‘Of course they’re willing.’

  ‘You’d be surprised — sometimes family members refuse.’

  They were surprised to hear this, very surprised, but the issue was unimportant, and irrelevant to their overriding concern.

  ‘I don’t want to raise false hopes,’ Eve said. ‘I have to warn you that a match is very unlikely.’

  Driving home afterwards Linda cried the tears she had been suppressing for days, but softly, to herself and to Rick, maintaining conversation as best she could, trying not to disturb the little girl strapped into the back seat.

  ‘Whassa matter, Mummy?’

  ‘I’m a bit sad, Wol.’

  ‘Why, Mummy?’

  ‘Mummy’s sad because you’re not more ugly,’ Rick said, through his own choked throat, and the sudden thought, strange and magical, reappearing after many years, surprised Linda into the glimmer of a smile, despite her pain.

  Emma stared out the window, completely satisfied, as if her question had not required an answer that made sense, merely an utterance.

  ‘I want an icecream, Daddy?’

  ‘So do I, Wol.’

  4

  In the months that followed there was much for those wide Wol eyes to take in. The little girl’s life now revolved about the hospital. Giant scanners periodically engulfed and disgorged her; sharp needles pricked her tiny thumb-pads daily; various drug-combinations made her ill, or made her hair fall out — made her, Rick joked, once, bitterly, ‘almost ugly’.

  Mostly, hospital life was a life of waiting, in bright primary-coloured ante-rooms filled with picture books and soft toys. Her parents often wondered what she made of it all — what exactly was going on behind those solemn owl-eyes. At the age of three, her understanding of death was limited. A pet goldfish had once been buried in the backyard with due ceremony under a small twig cross, then promptly forgotten. On another occasion, tears filling her eyes, she had chased away a neighbour’s cat that was tormenting a spring fledgeling on the back lawn. As if choosing to torment her instead, the cat had returned under cover of darkness and left a pair of tiny, stiff, inedible wings amid a scatter of soft down on the grass: a deliberate and malevolent gift, it seemed, for the little girl to find in the morning. Various species of squashed wildlife that lined the road to a beach-holiday one summer had caused less misery — ‘road pizza’ Benjamin had called it, repeatedly, trying to shock his sister, but only making her giggle.

  At four, during her first remission, there was a flurry of bedtime questions. How old will you be when you die, Mummy? Will you go to heaven?

  The little girl had never appeared concerned by her illness while actually ill, but perhaps — her hair was growing back, and she was gaining weight — she now half-sensed that she was past it, and it was safe to ask such questions. The subject of death would disappear within weeks, Eve Harrison reassured the worried parents.

  ‘It’s just a phase. A normal, healthy phase.’

  ‘But what do we tell her?’

  ‘Tell her the truth. Tell her what you would like to hear in her place. These are normal four-year-old questions.’

  Less normal was an awareness of her own mortality that emerged, obliquely, when signs of the disease returned the following year: a self-awar
eness that was bent, at first, into an obsession with the health of her grandparents, with the signs of age and deterioration of their bodies.

  She burst into tears in the car, without warning, driving home, after a Sunday visit to Rick’s parents.

  ‘I don’t want Grandma to die,’ she blubbered.

  Rick turned to face her, alarmed: ‘She’s not going to die, Wol — not for a long time. She’s only fifty years old.’

  ‘But her hair is so old. ’

  The child’s own bald head — the scorched-earth of chemotherapy — was concealed by a bright, batik scarf. Linda, who was driving, stopped the car; Rick climbed out and into the backseat with Emma, Ben squeezed over the gear-shift into the front.

  They drove on with the father nursing his daughter.

  ‘No-one is going to die, Wol,’ he murmured. ‘Not Grandma. Not anyone. Not for a long time. In our family everyone lives to be a hundred years old. Every one.’

  But these were her own anxieties, self-anxieties, once-removed; they could not be reasoned away.

  ‘Are you going to be cremated or buried, Grandma?’ she blurted across the dinner table the following Sunday.

  Forewarned, the grandmother — a youthful fifty-five — laughed, lightly: ‘It’s so far away I haven’t thought about it, Wol.’

  The small girl watched her solemnly for a time.

  ‘If you’re cremated,’ she finally said. ‘You might not have a body to wear in heaven.’

  The adults smiled at each other above her head, allowing themselves to be amused, willing themselves to be amused — but breathing a little more easily when Emma pushed herself away from the table and slipped off to play.

  The deeper question — the blunt question they had all dreaded — took several more months to find its way through this maze of detours and displacements.

  ‘Am I going to die, Mummy?’

  Linda had woken around dawn to find Emma standing at the bedside, gazing down at her. Early birds twittered outside, the first light of morning was sneaking between the curtain-chinks. She pulled aside the quilt, the little girl clambered up and in. Rick, waking more slowly, rolled to face them; the daughter lay nestled between her parents, her big owl-eyes glistening in the half-dark, gathering what little light there was. Her voice when she spoke was matter-of-fact, unafraid — having finally reached this destination she was far less concerned, it seemed, for herself, than she had been, months earlier, for the health of her grandmothers.

  ‘Will I go to heaven?’

  ‘Of course. One day. Not for a long time.’

  More questions followed: ‘What will I do there? What will I do on my own? Who will look after me?’

  She had clearly been preparing a list for some time.

  ‘You won’t be on your own, Wol. I’ll already be there. Grandma will already be there. We’ll all be together.’

  ‘What if I can’t find you? What if I’m not allowed to see you?’

  ‘Why wouldn’t you find us?’

  ‘It’s just a phase. A normal ‘Because I’ve been naughty.’

  A catalogue of tiny misdemeanours followed; she was easily reassured that none was unforgivable. Having emptied herself, methodically, of these preoccupations she fell almost instantly asleep, leaving her parents facing each other, staring at each other in the half-dark of the morning, their warm breaths mingling, their thoughts desperately agitating.

  5

  ‘Worry achieves nothing,’ Eve attempted to reassure the young parents. ‘Worry is useless, a total waste of energy.’

  There was nothing wasteful about Eve Harrison: her hair cropped short, her face free of make-up. Her clothes — plain smock, sensible flat-heeled shoes — also seemed blunt, functional, to the point. Unadorned.

  But the two parents increasingly wanted adornment, they wanted to hear reassuring fibs, or at least half-truths. Their need for bluntness had passed; they now wanted cosmetics. Despite Eve’s advice to the contrary, they had also come to depend on worry. Worrying was far from useless, they sensed: the worry process was a restless working through of possibilities and permutations, an exhaustive examination of every path, every fork in the path. Rick, grown accustomed to insomnia over the years of Emma’s illness, had come to think of those long hours of tossing and turning and worrying in bed as a search programme: a brute-search, like a computer chess-game he had bought, as a birthday present to himself, some years before. The game had obsessed him. He had glued himself to the video display, fascinated, every night for weeks, as the programme checked the consequences of every possible move, counted possibilities, eliminated dead-ends in the maze of infinite possible end-games.

  Worry was also a kind of fuel, he suspected: a higher-octane fuel, for a higher temperature furnace. It raised the metabolic rate, it provided the energy that kept them both going, that was channelled into doing things, into actual physical tasks: the keeping of temperature charts, the counting of bruises, the frequent phone-calls to Eve, the trips to the hospital. It got them through the day — through the routines of each day. It also got them through the weeks, and months, and years, powering more optimistic, longer-range tasks: the correspondence that Rick began with tissue-banks and bone-marrow registers around the world, Linda’s volunteer work with the Make-a-Wish Foundation, and the Leukaemia Support Group.

  At first resistant to these groups — unwilling to admit that Emma might ever come to need last wishes,or support — she was dragged along to an Annual General Meeting by another parent, a mother she had met in the same bright waiting-rooms, and found herself nominated onto the support group’s fund-raising committee. Soon she was immersed completely, finding relief, and even satisfaction, in taking down the minutes, typing the monthly newsletter, xeroxing and mailing copies. She was, she felt, at last helping her child, expending all that accumulated worry-energy usefully: a small cog in the wheel of Cure.

  When the search for paths into the future ended in a blind-alley, there was still the past to examine. The feeling was inescapable that they were somehow to blame, that it might even help if they were to blame. Had Linda taken some harmful drug during pregnancy? Drunk one glass too many of wine? Had there been something else in Emma’s childhood environment — something chemical, or unnatural, against which they had failed to protect her? If they could not blame themselves, they blamed others. Linda’s father — a heavy smoker, two packs a day — came under suspicion briefly.

  ‘It’s such a filthy habit, Dad,’ Linda berated him one Sunday, over a family meal. ‘If you won’t think of yourself, think of others. I’m not saying it has anything to do with Wol — but who knows?’

  Rick, unwilling to criticise his father-in-law directly, and specifically, told a more general story in the silence which followed.

  ‘I was at a curriculum meeting a few weeks ago. In at Head Office. There was only one smoker in the room. Jenny Adams — the chairperson — asked him to put out his cigarette. When he refused, she stood up, leaned across the table and — I kid you not — spat on him.’

  His father-in-law was incredulous: ‘She what?’

  ‘She spat on him.’

  ‘That’s disgusting.’

  ‘Maybe. I don’t say I agree with it. But I think we’ll see more of it. If he pollutes her, she said, then she was going to pollute him.’

  Linda’s mother, quiet till that point — quiet, it could be said, for many years till that point, a gentle and generous woman — but now seething with anger, finally spoke up.

  ‘I feel that you have spat on your father,’ she said to Linda, and through Linda also to Rick. ‘Here tonight. You have spat on him in his own house. I don’t like smoking any more than you, but to suggest it might have something to do with Wol — well, I think it’s the most horrible thing you have ever said.’

  Apologies followed, by phone, over several days; normal relations were gradually resumed.

  Despite Eve’s frequent reassurances, and advice, such obsessions consumed the next few years, and
consumed them at speed. If three years was to be their remaining time with their daughter, it was passing too quickly.

  ‘Remember those interminable Beowulf lectures,’ Rick murmured in bed one night. ‘I used to think if I had a week left to live, I’d spend the entire week in Beowulf lectures. It would make the time last forever.’

  ‘You think we should take it up again?’

  ‘Time is passing too quickly. I look up and another month has vanished.’

  ‘But that’s another month she’s survived.’

  Their older, gentler routines — nightly book-readings, weekend picnics — were becoming episodic, haphazard, disrupted by their new obsessions and schedules. Even Church attendance was disrupted. At first, the boyish John Cummings and his ancient congregation had been discreetly supportive as word of Emma’s illness spread. Now, when the family did get to church, it was such an event, and such a fuss was made of Emma — so much consolation and pity and even, once, public prayers, were offered — that it became an ordeal.

  ‘Never again,’ Linda vowed, as they drove away one Sunday.

  Rick defended the young priest: ‘He didn’t mention her by name.’

  ‘But he was looking directly at her. How could he do that? Without even asking us?’

  The children sat in the back seat, listening. They had heard the prayers, absorbed the sympathetic smiles of the congregation — there seemed little point in excluding them from the discussion.

  ‘Aren’t we going to church anymore?’ Ben asked.

  ‘Not for a while.’

  ‘But I want to go. Emma doesn’t have to come if she doesn’t want to — but I want to go.’

  ‘We don’t have time, Ben,’ his father said, firmly.

  Always more difficult than his placid sister, the boy now demanded even more of their attention, as if to keep his share constant, or proportionate. At times he seemed almost jealous of his sister’s disease. Over the years he had been the sickly one, the designated patient, now he was forced to compete for a place on the sickbed. Most mornings he complained of aches in the belly or chest or head. He frequently missed school, he insisted on accompanying the family to hospital, he demanded that Doctor Eve examine his ears or throat, press her cold stethoscope against his chest.