1.12
To combat the evil of radiotherapy we decide that good company and minimal hassle are the things to aim for and avoiding the slog into hospital on public transport each day would be a blessing. The radiotherapy rota means organising the friends who have volunteered to drive or accompany Tom for zapping every weekday from Monday to Friday for six weeks. I take this on. My zone of power is so blasted away that like losing weight, this is an area my anxiety can fix on. I go with Tom to the first session and then only once again much later when he asks me to document the experience on video. We are seeking out areas of this thing for me not to be involved in. It is work Tom has to do and he doesn’t mind it, or more striking he makes it work for him. In the singular way he can conceptualise his illness he has found here a mode of address. He finds it a kind of pause, a chance to be perfectly in place.
He accepts the clamping of the bespoke mask on to his face for what it is: inwardness under restraint. The ray machine is like something from a submarine, a giant upside-down gun turret attached to the ceiling that articulates elegant revolutions around its target. This is precision mathematics. Angle is all. He describes for me the preliminary rituals, lying down, getting settled, strapping in, the nurses’ withdrawal behind a shielding screen and their patter to each other as they check and recheck coordinates. They provide music or he can bring in his own. He brings his own. He is the object, helplessly fixed but in charge of himself. Under the ray he can think about what he is writing that week, about living, about dying, us, anything he likes. I dimly get this. I have modelled for drawing classes and drawn from models many times when I was younger: the depersonalisation of the body, the freedom of the mind, the close attention of the eye, the angle of a line, these all fit together. But I mind this process very much. I don’t want to see it or be anywhere near it. It is better that only one of us comes here.
Drawing up the schedule is not so difficult. It is an act of solidarity that one can make and there are many volunteers. All I have to do is determine they know the allotted times and dates and keep them informed of the frequent flips in schedule initiated by the hospital. It is not even the case that I do not have anything else to do. Everything else is mine to do. But the radiotherapy schedule signifies something larger than itself. It is an investment: the establishing of a form of order over disaster. I study it endlessly. It looks like something is being done.
The schedule becomes my secret masterwork, though no one else would know it. I do not actually code it in pens of different colours but mentally I do: reds, greens, mauves, yellows and blues, different colours for days of the week, for people of the day, for when the bloods are taken or when the oncologist must be seen or for how long each session will take. I am willing it to work and the way I know how is to pay childish attention to the detail. I am Secretary and Treasurer of the Radiotherapy Club and I carry out my duties to the letter. I will take seriously each tiny seriousness in the hope that they will add up. Each session will be the best it can be. The schedule will fill out its numbers in columns and rows like a sum moving beautifully week after week towards the correct answer.
1.13
23 December 2008
Dear Friends
Happy Christmas to you.
Tom’s first round of treatment finished a week ago, and we have a respite until mid-January. So far he’s doing well. Ill effects are few and not too terrible.
Thank you for your thoughts, messages, support and company. We look forward to seeing you in the New Year.
With love
On Hampstead Heath six of us are walking. Ev is manfully on his feet, keeping up. He measures 70 cm high. We have the buggy with us but when he is tired he simply bends his tummy and folds softly on to the winter grass. It is a fierce day, chill, with a bright blue sky.
Nobody talks very much yet this is a kind of celebration. We are three months since the operation. Tom looks radiant. His eyes are brilliant blue and his hair the darkest brown. None of his hair has been lost. It hangs slick over his forehead in a neat curtain, covering the scar on the left side with ease. The rays of radiotherapy are bouncing off him and the schedule is over. His skin always looks fantastic, the skin of a young man. Ev is radiant too. He has good reason to be. We are out with friends in the open. He is the only child in a group of adults and orchestrates our attention. Picking our way through the sharp end-of-year grasses, we gather sticks and leaves to present to him and then chase him round a ring of birches dappled in camouflage of black and white bark and green and yellow leaves. He is an easy catch, stiff with nappy, buttoned up in his blue winter coat. When caught, he folds and squeals like a young pig. His legs kick the air.
On the turn towards Kenwood we walk through the area of birches where dogs and dog-walkers make their meet. A woman with five dogs on radiating leads: brown, grey, black, white, brindled, meets a man with three: black, tan and mouse and another man with two: white and spotted. Dogs and guardians congregate in delight. It is like an open-air revivalists’ meeting. They socialise in happy circles. Ten dogs sniff each other’s arses in swirling motion. If they could applaud, they would.
I know this bit of ground well. Five summers ago I filmed here over several days researching the terrain. My viewpoints were always particular features lined up through the lens. Mainly I was looking at edges: landscape clusters, paths, trees, mounds, rocks, and how they might be outlined and digitally rendered into vignettes like small solids or floating islands, free of the standard rectangle of the lens. I digitally removed the sky. Left only the land and its adherent trees. I had been thinking of Bewick the engraver and how self-sufficient his illustrations are, each a summons to a place on a white page. In a Bewick vignette, all living takes place within a conscious edge. The shape frames the action. It is not a contingent view. You cannot step out. There is no out. There is no elsewhere, nothing external, no shift of angle to the right or pulling back the shot to reveal the whole. Strange reciprocity: the figure and its scene are birthed together.
I filmed in the circle of trees where we chase Ev. Another clump of oak and lime on the hill, a third view round the turn of the main serpentine path as it slips away. Much of it didn’t get used, but there was one path nearby with a precise jaunt and sweep away from the lens that made it in. I haven’t been back much since and as I recognise each site my eye returns to those familiar decisions of edge and shape and outline. This is what I was looking at then. Now I am not selecting. I don’t have the camera but the limits of my visual field. My family and my friends are in the shot. There is no elsewhere.
Ev sits on Tom’s shoulders. He is too tired to walk any more. His mouth is open and he makes a husky singing note in his throat. The pitch does not waver. A tiny cloud of breath hangs in front of the O of his mouth. As Tom starts to jog away along the dirt track the note gets muddled and starts to vibrate and when Ev notices this, a new note of laughter mixes with the sound. Tom jogs faster. The first note cannot hold. It continues but dissolves from song into laughter held at the same pitch. His head falls back, giggling, helpless.
1.14
Sometime towards the end of January Ev is ill and he vomits on the rug. As I can’t think what to do with it, I roll it up and throw it down the back steps into the garden. The afternoon passes. He buries his face in the sofa, mooning his white bottom at me. A papery moth flits out of a cushion and I crush it between my fingers. Moths are eating all our wool. The sky outside is metallic and the trees are bare of leaves.
Holed up in close proximity with Ev, his conversation is a surprise as always. Sickness marginally drags his spirits but makes his talk spacier, bouncier. This is my knee – he sits on the floor caressing it. He puts the toy ambulance in a jam jar – Look, I’ve made a yoghurt. Then he pushes the ambulance around on the table – Beep beep – ambulance goes to the hospital for daddy. Today, being ill, we are idle. The rhetoric on childcare doesn’t much do idleness, preferring the term ‘work’. Being a mother I am now an expert but I still fin
d that what we do remains slippery and hard to categorise: avoidance, whimsy, indulgence, play. Lying on the sofa and making a long hill for his car with my body, throwing cushions at him, pretending to sleep and having him burrow in beside me then collapsing him by sniffling my nose around in his neck whispering I smell truffles. These things are known to be good for children. They are good for me and good for him and if I didn’t do them his life and mine would be the poorer. I am no stranger to idleness but I had no idea my life lacked this. What I did before I had him was as variously urgent, vital, exciting, mundane, novel or boring as any life. I never noticed a gap in it for this.
Tom is a little bit in awe of Ev, of his resilience and inventiveness. Ev has the baby fur of self-possession. He goes around the house humming tunes to himself that he doesn’t like us to join in on. The fluid natter of his makey-up play-world is a comprehensive universe packed with verbal surprises. He can take himself off to nap in the middle of the day like a cat. He has sentences and phrases that he uses to probe the material around him – Oh! Hmm, OK, perhaps this, Hmm – what could this do? He has started nursery. There they call him The Deep Thinker. Ev already knows a great deal about himself, his needs, his powers, what makes him happy. He knows us well too, senses prevarication and is surprised by falsity. His face melts to tears at slights. He can spin a situation round from desperate to blithe in a moment. We are both surprised by the fecundity of his naughtiness. He has a brilliant memory for his mayfly past and once you work out what he is talking about, he is invariably right. A child can do this, flaunt itself and its knowledge, continuously brand new, and then newer still. It can chomp through words; making the rapid, raw, connecting work of jumps, jokes, new meanings, confusions, mishearings and rhyming nonsense. Yesterday Ev noticed a bush in the park, neat as a lollipop. If that tree were choc-o-late I would eat it.
I’ve mainly missed what the others talk about: trials, desperation, panic. Not lack of sleep. I didn’t miss that. I had it and have it still. My nights are a negative of my days. The lack of sleep I now have is grievous but Ev is not its true cause. But the rest wasn’t so allencompassing. It seemed to last about six beats. Already he is not a baby and his babyhood feels elided, glossed. Maybe all mothers feel this, but it as if I am easily deceived concerning him. My memory is selective.
I forget about the two miscarriages that preceded him. I do not mean to do this. It’s not something I am consciously trying to do. It is not a boast. But it shows how strong is Ev’s grip. In Glasgow, I decide to look up a friend I haven’t seen for years. Vulnerability is making me bolder and more restless. I contact her and seek her out, and Ev and me go on a straggly bus journey from the city centre to the edge. At the designated spot there she is waiting for me, hands in pockets, same as she was. She has two teenage children, thin as zips, and as we settle in with each other over the course of the next hours she tells me of her difficulties getting pregnant. She asks, How was it for you? Oh, it was OK, I say, it kind of happened. About a week later I recall this conversation suddenly and am astonished. What a lie! Two miscarriages isn’t such a carefree path to pregnancy. I was forty-two when I gave birth. It was not seamless. It did not just kind of happen. But while speaking to her I had been looking at Ev and my mind was on him. It is more than forgetting or suppressing. It is the utter refutation of the existence of anything else. He sweeps all before him. All the non-and-never-children are lost in his black shadow, in the gleam of his silver reflection. With him, the present trumps the past, always. This will stand him in good stead.
1.15
Ev passes his sickness on to me. Tom, whose immunity is so compromised, is spared. The day I am well enough to leave the house it snows heavily and lies so thick the city calls a truce. With each hour more of its functions cease. For now the Whites have it. Some quarters struggle on, others lay down their arms and citizens emerge from their homes. Fearful that it will not last, I scramble to get Ev out in the optimal hush.
In countries where it is rare, deep snow is the people’s bounty and the park at 3 p.m. is packed with revellers. They all do the same thing, not minding repetition or convention or at all; sliding downhill on trays and Tesco bags, pelting each other and rolling balls of dirty snow taller than themselves to leave them parked at random like abandoned trailers. Tom comes out to meet us, walking carefully with a stick. He loves snow and will not miss it. The light is brilliant and reflects back into our faces. We look well.
We are post-radio, deep in chemo. When Tom is exhausted and the evening collapses for him around seven o’clock, after Ev is put to bed, I think of the hours that lie ahead without his company. At this point if I am in such a mood for it I become angry. Dark begins to settle in at four. I consider the options: 1 stare into space, 2 drink, 3 eat, 4 book, 5 wash clothes, 6 tidy up toys, 7 keep warm, 8 phone someone, 9 we do not have a television so that option is out, 10 is anything which requires special initiative. Quite often 1 has it. The snow has appeased me but my temper circuits around itself at this hour and can catch Ev if he is not asleep in time. It is a tightly wound little lash of foulness that will suddenly show its tip with a near total lack of build-up and even as it hits it is splashed and watered with contrition.
Yet I keep saying to people, You have got to realise that we are having a very good time. I am saying this while explaining that Tom has this thing and everything, the whole attendant works, gunning for him. I repeat it many times, especially at the beginning, and though I know it to be true, I can see they don’t believe me. I can tell by their eyes, their ever-ready nodding and murmuring. It’s good you are so strong. You’ve got to be positive. I give up after a while, but it continues to annoy me and I nag away at trying to find a form of words for having a life consistent with this paradox. I don’t succeed. The sentence – We are happy because we can hold totally opposite positions in equilibrium in our heads at the same time, though you might not realise beforehand that this is possible – is not one you can use in many conversations.
He is dying. Yet within the context of us, this fact can seem irrelevant. I might sometimes say, So what? This is not the same as denial. It is simply that our understanding of each other is unchanged and will not change until this is over. It sticks to us like spray on skin. He loves. He is loved. He has loved. He will be loved. Being with a long-time love is having the shape and expanded sweep of their person annexed to yours. It is a psychic extension that generates surprising patterns through which things pass unnoticed, move, switch and flood back. It is as near as thinking, as regular as breathing and yet you are not quite aware of its limits. Knowing your own limits, where you yourself begin and end so well as to be dulled by them, its pleasure derives precisely from the ambivalence of not knowing where the edges lie, yet feeling at home.
1.16
It isn’t true when I said that I sometimes phone people. I do not. Never. I am even out of that habit. People must phone me. This business of getting on with it is very singular. Talking about what is happening to us opens up great holes and hidden traps. I cannot allow this too often and I must ration the demands that such conversations have on me.
After much mental preparation, Shall I, Shan’t I, and the taking on and pulling off of clothes as I choose my armour with care, I go out to a gallery for the private view of an exhibition of the artist Liz Arnold. The personality of the paintings hits as soon as you enter the room. It is an interior kind of world. Small canvases in ice-cream colours; strawberry, black, turquoise and lime, sprinkled with silver and gold dust and loaded with neon highlights and wonky patterns. The world depicted is clearly London, peopled by characters much like ourselves, awkward and delicate, prone to embarrassment and easily upset. Except that they are ants, small insects, shy bees or flamboyant creatures with thin legs and wings. The paintings are clever and witty and turbulent, with shades of Alex Katz in the slabby blankness of the painting but with a disco fizz and a gaucheness that slips between the familiar and the very odd indeed.
The pla
ce is packed. I never knew her but she was a popular figure, much missed, and the crowd is hugely partisan. They are reconnecting, happy and excited to see her singular universe reframed. The world of people who might know these paintings is a small one. I know many of them and if they know me, then they also know us and will know what is happening to us.
I have made the wrong decision in coming out. A big, avoidable error and now I must manage the consequences. The situation is too fraught. Old friends yes, I can sidle up to them and hug, elide or glide past as I wish, but the others, the acquaintances, the professionals, the half-known, the supposed-to-know, what am I to do with them? What is there to say? I try to focus on the paintings but on entering the room my skull has become illuminated. An internal bulb or light has gone on and I am incandescent and highly spottable. News is news, and the badder the news, the harder it is to avoid. I am no longer myself, solo person, viewer, artist, colleague, friend of somebody else, whatever, but I am that person, the person who is married to the person who … Oh there she is, that is her, yes I heard, oh God and yes, they’ve got a child too.
I am not long in the gallery before someone makes a beeline for me. I can see her mouth making shapes and framing questions already as she advances through the crowd, the standard ones I know, but ever harder to field. I am struggling even before she reaches me. My illuminated skull flickers in panic. Another one appears from the right with the same aim in mind. They do not know each other, yet they have a common animal zeal: to support me. Am I supposed to introduce them? They want facts: information, details, prognosis; they both have stories of colleagues, friends, people they don’t know themselves, who have overcome this or that tumour. Their eyes are wide for the task. It is a double-headed attack and I am trapped in the clash of their antennae. I am at a private view holding a glass of wine in the middle of a crowd of anthropomorphic insect paintings and I am being devoured by deadly human mouthparts. I last as long as I can, but really it is minutes, no time at all, and in between one word and the next my feet lock to the straightest line through the crowd to the door. By instinct and not by sight I get out, drinking great sobs and heaves with tears glassing my face as I run.
The Iceberg Page 4