You are all welcome. There are no restrictions at all on visiting.
Nearest Tube, Clapham Common, is five minutes’ walk.
We hope to see many of you on Thursday at Tom’s exhibition at Victoria Miro.
With love
The hospital was vertical. Beneath us, stacked like ballast, was our fellow cargo: layers and layers of the metropolitan sick arranged in dense, industrious warrens of gut, heart, bowel, bone, blood. The hospice is horizontal. Its planes stretch out flat and space is not at a premium. Though not at ground level, it feels like it; you enter continuous with the land outside but at the rear, another floor is tucked beneath. Our room fits snugly into its level and looks on to the garden at the angle of a person looking down on his own shadow.
The building is new and fitted out in warm wood flanked by wall-to-ceiling windows. All is light from edge to edge. The large rooms come off a space that is not so much a corridor as a broad spine running the length of the building that operates as lounge, office, throughway, sightline and meeting place. The ideological imprint is one of openness. At no time do you have to knock on a door to search for a member of staff. Nothing is hidden.
Rooms can be porous or private as you wish. The interior wall is glass with blinds that open or close at the touch of a button and the exterior one is also glass and opens on to balconies. In summer the beds can be pushed outside. All areas save these rooms are held in common. Sitting in the public space I see the spout with boiling water on demand for tea. Cups are set out and waiting. There is a television with seating grouped around. Small bright green and blue chairs demarcate the toys area that is Ev’s domain.
The building is temperate. To watch the nurses walk down its length in their short-sleeved tunics of white, dark blue or light is Mediterranean. It is a passeggiata so generous and deep that strollers can choose whether to acknowledge each other or not. No one is obliged. Sofas, seats, rugs, tables, flowers, giant photographs and bowls of sweets make stopping points along the way. Nurses eat sweets all day. The toys area and the most prominent lounge, signalled by two giant leather sofas in an L shape, are just opposite Tom’s room. They are technically in our lee and therefore ours, so often we take them over. Once again he has the lucky room, Room 1, at the head of the row next to the nurses’ station. At night when he needs attention I stick my head out of the door and the nurses grouped there rise to cover the few metres between us. Their night-lit faces are serious to what I might say.
I feel like I have made contact with a closed sect whose mores I do not know. There is an openness and at the same time a discretion here that is hard to quantify. It takes me much, much longer to learn the names of the nurses. In the hospital there was Gail, Rebecca, Tayo, Nick, Sean, Rachel, Joanna, Karen, Angela. I learned their names in days. This was partly a group incantation, a recitation in praise and awe at their skill, but also to name is to know. I needed to note the ones I liked and mark how their identities were invested in their actions. What was the look on their faces as they appeared at the end of his bed? What words did they use to greet us? With what level of detail did they turn back his sheet? How did their hands work together to lift his right arm? I can count the number of bad nurses we have met on the fingers of one hand – would you say I was lucky? – the one from Streatham, the one who wanted to retire to Australia, the Dutch one, the angry one …
It was a promiscuous love. I would single out one as the most exquisite, easily the best nurse, and then another would come along more beautiful and I would fall harder in love again. My friends did it too. Each day the accolades flitted about. She’s the one – But no, what about her? Oh, I love her. Finely blended with this praising was a more strategic aim. In the hospital we were in a vast system of competing needs where Tom had to be brought to their attention as a cause to be championed. Perhaps I didn’t need to try so hard. He manages still, deep into his illness, to make friends and admirers directly. He attracts them. He is powerful enough not to need me. But my work was strategic: to be his proxy within the system, to find out who had power in it and who did not and most importantly who knew who had it. In Ev too, I held an ace in flagging up our cause. Ev carried them all before him. Nurses fell about in his wake.
Here I don’t need strategy. Tactics are over. Power is level. I don’t need to learn the names immediately so they take much longer to come: Holly, Mariana, Jasper, Emma, Charlotte, Amma, Rita, Cecily, Julie, Nigel, Delores, Barbara, Brenda. I don’t need to make alliances to get what I want. What I want is visible. It is given to us. I can see it.
The nurses work on tables or at the long work station running down the side of the central space. There are so many of them it can seem social, as if they are lounging, doing light paperwork or puzzles, chatting, drinking tea, taking it easy. But they are working, and something about the way they hold themselves when they work tells you that you can interrupt them.
I don’t have to make myself especially special. I don’t need to get in early to catch a doctor on a ward round or risk missing a development for days. I live here. There is no crowd that Tom needs to stand out from. It will all work anyway. I can let down my guard. But this feels violently risky. It is not relaxing but disconcerting, like vertigo. I might fall over. We have been going at such a pace that to stop now feels too dangerous, too extreme. The last weeks have been so wild and hard-edged that in this place I am a barbarian: uncouth, uncivil, self-conscious of my raging desires. I want to drool and spoil and swear and make a mess. Tom is dying. This is a place where he can die well with us around him. Suddenly, overnight, we are home.
The room was already handsome before we began. But as you would in any new house, we make it ours. My first action is to bring in the standard lamp from home with the prefabricated shade I made by taping two shades together. This will be our beacon.
The long wall opposite the bed quickly becomes a solid screen of familiar signs: pictures, writing, drawings, photographs. This is my second action. I bring them in from home and he watches me work with pleasure and interest. He points things out as I stick them up or will ask me to move an image from one part of the wall to another in greater or lesser proximity to his line of vision. He is a curator. His aesthetic is in no way impaired.
I have a system for putting up photos. I don’t know where it comes from but you can try it. It will adapt to any area. You start with an edge, here the one around the indent of the bathroom door directly opposite the bed, and you work with the whole wall. You line the edge with images, each butting up to each, no gaps. Then you work outwards and upwards quickly, like a professional, not paying much attention to what goes next to what, no attention to content, though some to abstract attributes like shape or density of tone. Key to the process is Leave No Space. Images of different sizes are fitted alongside each other so that their edges are roughly aligned for the next layer. Collisions are fine. It is a dry-stone wall technique. The borders of the mass as it grows over the wall are indeterminate. They stop only when they hit an obstacle or when the whole goes out of the reach of my hand. I think about bringing in a ladder so that the pictures can go all the way to the ceiling but I don’t get round to it, so I go as high as I can reach by adjusting the adaptable stool to full height and putting one foot on the sink.
So this is what he sees: a painting by Ev on sugar paper of a green horseshoe shape next to a red indeterminate figure with blue scratches. Heraldic. The poster from the Wyndham Lewis show we went to earlier this year in Madrid. Us on the evening of our wedding standing in the tunnel we made out of white tarp. A postcard of Blake’s, Help! Help! from For the Sexes: The Gates of Paradise. Ev in France a year ago with the texture of the sun imprinted on his upturned skin. A photo of my old flat in summer when the plants grew so thick up the wall that from this angle the door is invisible. In the first four years of marriage we lived in both our flats. A recent picture of us trying to decipher something in one of Tom’s notebooks. He is wearing his beret and the apron he wore to eat, the co
stume of his last month at home. Tom’s print Political, made for his exhibition that will open tonight. Ev and I on my birthday two years ago. It was our first post-diagnosis celebration and my eyes are glassy. Thomas Bewick’s engraving Tail-piece for the Long-Legged Plover. A still from epic, the film I made in Rome, the one with the horse. Ian Hamilton Finlay’s The Little Seamstress. A rough draft for a card we adapted from Leger’s Holly Leaf on Red Ground with the red ground removed. A poster of Poussin’s Landscape with the Ashes of Phocion. A love heart card drawn by the twins. A print of the cover of the Observer Review that came out a month ago. It shows Tom and Ev sitting side by side like beanbags thrown on to the ground on the afternoon after Tom’s first fit. Tom and me ten years ago, playing table tennis on my piece Fresh Air: Hyde Park. The piece is a one of a trio of table tennis tables in the shape of London parks. A line drawing of us mooching around Liverpool the year I was at Tate. Cézanne’s The Card Players, a memento from the Courtauld trip. Ev with a bruise on his forehead looking like a righteous evangelist after a beating. Kitagawa Utamaro’s Lovers in the Upstairs Room of a Teahouse. A ‘child’s’ collage of Tom with a fur beard, done by me while bored at playgroup. A card from Blaze in careful felt tip. A postcard of the Uffington white horse.
Soon there are no surfaces left on which to put anything down. Piles of CDs, letters, books, medical stuff, flowers, bottles of wine, chocolate, accumulate on every surface. Our possessions bank up on the floor. Everything we are not immediately using I heap in the bathroom. The cleaners do their best and pick their way gently around us. Within days it gets out of hand. This is endemic. The nature of the situation is untenable, spatially, temporally and metaphorically, and in response the only thing we can think to do is continue to bring it in and continue to pile it on. As we go deeper there is always more to be learned. And we learn it better too. More and more time, more and more friends, more and more things, more looking, more speaking, more stroking, more sitting, more eating and drinking, although that is signalling itself to be the most untenable action of all. Tom’s swallow reflex and the brain’s ability to work the throat are breaking down.
The impact of our new home is so sudden it is impossible to make sense of. To avoid an accident, you brake, you do not crash, but find yourself thrown off the road into a place where you do not even need a car. This is how it feels. But the change will have a longer impact, like a slow fuse that may never stop. I am a pragmatist. I learn and I learn. We have many things still to do and we can do them here. Tonight is the opening of the exhibition of Tom’s collage works at Victoria Miro. The works are highly crafted combinations of text and image made entirely of paper and created manually with scissors, a wax roller and a store of magazines. He was always a writer who made images. For five or more years these pictures were published weekly on the editorial page of the Independent: topical, arcane, satirical, political, celebratory, their scissored edges softened by reproduction but not their import. The originals have never been shown. It will be a great show. Twenty-five works framed around the high space. The invites have gone out. The press has been notified. It will be a great party. Tom is going. Holly the nurse is going. Ev is going. I am going. Everyone is going.
3.11
Who is this person? The same who loves me. The same I have lived around for fourteen years. Yet even so. He is asleep. Removed to a degree, too weak to impose himself much on his illness. Not too weak to breathe, no. The breath goes on strong though his chest is shallow rising and his cough full of fluid. A nurse described the lungs for me as an upside down tree with the trachea the trunk that branches further out and down into finer, separating, diffusing roots. Although his illness and he are one and always have been the same, prime space in the brain is being lost apace to the interloper. What size is the thing now, a clenched fist? Last night I slept at home and called him early. Hello! Yes! Good! … All very cheerful, his voice upturned and sane when I told him that Ev and I were on our way with bacon sandwiches and coffee. We are two days after the exhibition and we still glow in its after-burn but I sense that something is wayward with his eyes, a strangeness, a blurring, failing.
Around midnight I sit nearby in his wheelchair – Dad’s wheelbarrow, Ev calls it. The room is alive with tiny interruptions: minute clicks and shifts syncopate the whirring hum of the air mattress inflating as it adjusts his weight in the bed. Night-lights beep, electricity is everywhere cradling the three of us in the palm of its hand: safe, warm, happy modernity. The profile of the bed is spectacular. It is a constructivist dream-divan, bed as high-end machine, beautifully turned and finished and capable of multiple positions. His sheets are white, stiff, crisp and never dirty. Swiftness of intercession here is all.
Tom’s left hand clutches a beaker of water. The left has a strong grip still, though the wrist is bruised blue from months of bloodletting. The right hand is dormant. He looks like himself. He always looks like himself and as usual that means he looks well. Tonight we have been talking about the things people talk about when they do not have long to live. What will their children know of them? You might think this comes up all the time but no, it doesn’t. There are so many other yet more serious and yet more frivolous things to crowd it off the agenda.
The conversation goes via our usual channels, starting with the elimination of every possible other subject – local, practical, conceptual, spatial, emotional. Is it to do with food? Is it to do with how you felt at the exhibition? Is it to do with someone you met? Did it happen recently? Is it in the room now? Is it to do with love? Is it to do with your work? Context provides a ragged map but consider all the subjects there are in the world and think about how you access them. It is hard to analyse such a thing. Something might enter your thinking, triggered from where you are not sure and quick as a flash you are on a new thought runnel in complete darkness, one you weren’t even conscious of a second ago, that runs away directly from the main stretch. The route back is instantly opaque. The path ahead becomes illuminated only when you step on it.
A conversation is not like a diagram. The thing we cannot do is engage readily with the idea of a subject, so arriving at understanding is improvised, imperfect or impossible. It can take many hours and there is a high risk of failure. One of us, me or he, might well stop before we get there, might throw in the towel, get too exasperated or tired or bored, and say – as I do often now – let’s come back to that one – or – let’s try again when we are fresh. I use that word a lot with Ev, Fresh. Sleep, darling, sleep, and you will be fresh.
The next night I am at home. Incredible! It’s midnight and he is calling me. I remember the first phone call I had from him. It was on the communal phone in the hallway of my bedsit and as we spoke my bare feet on the tiled floor wicked up the cold. That was a frigid house, stalked by the neurosis of the landlady, and I got out as soon as I could. The telephone is as radical an agent of transformation for us now as it was then. That ring had such urgency, belling the insertion of promise into the deeply unpromising.
Now my phone shows the familiar digits ending – 101. Yes! Directly on hearing I understand everything. He has company: his thick Father Christmas voice, a scrunching in the background, laughter, the wrong digits beeping the phone, scroffling of pills and sheets, clumsy rumples of warmth, something being dropped, more laughter. How acute is the ear at picking up mini-tones, complex chords, small ambiences and sub-sets of meaning. I may yet be happy forever and ever as long as we can simply talk on the phone. Fantasy I know. No matter.
Tom’s desire for company is insatiable so Tim has gone into the hospice very late to sleep over. They are having a glass of wine. I taste it with them on my tongue as I hear it: the noise of a sour, dense, rich little grape popping sweetly amongst the other little noises. I know all the pictures he can see. I know the room is warm and full of his things. I know that the Christmas tree outside in the garden is flashing white lights on rotation as it will do all night. I know all this. Twinkle twinkle. All is well.
3.12
Dad was in Guy’s and he grew bigger and bigger and then he went pop and moved into Trinity.
The manifesto is in the architecture. The volume of the building sets out the fibres of the relationships within it. How we negotiate our way around mimics how we are with each other. It is in the impress of the outside upon the interior and what that transition feels like as we pass. It is in how the light falls inside on a winter afternoon. It is implicit in how swiftly Ev and his friends settle to play when they visit. It feels profoundly strange at this stage in the long game to be pitched out of a place where these things were nowhere on the list of imperatives and into an arena where they are the fundaments of experience.
The hospice is above all a designed space, bright and confident about its ideology. Coherence is readable in every corner and detail and the work of the nurses runs seamlessly alongside. People and place have common cause. To arrive for the first time is to have expectations and to have them met. This was what happened to us. We came in off the street and stood in the foyer. We didn’t go any further.
But Ev is agitated for the first time on arrival here. It is as if with this move he has finally lost patience with us. Enough of this life you’ve been leading me on. Whatever your reasons, it’s not fair. Stop it! Time to finish, time for Dad to come home. Now he repeats this over and over. But I won’t have Dad at home if he is here … I say Dad can’t come home, sweetheart … endless, endless, to boredom.
Ev goes to nursery on his usual days but he sleeps and eats mostly with us at the hospice. When he is here he says I want to go home and when he is at home he cries I want to see Dad. I am scissored. There is no solution. I say home is with us and I am here with Tom so mainly he is here. Overnight there is a heavy snowfall and in the morning the white roads are gently cut to ribbons by the tracks and curls of tyres. I have only one journey to do, between home and hospice. It takes ten minutes by car and I can do it without waking.
The Iceberg Page 23