Even so I notice something new. On a low plinth in front of me is a piece by Jeremy Deller, Baghdad, 5 March 2007. It is the mangled wreck of a car hit by a bomb and it brings across the world, in the way that artists do, one of the cars that was parked on Mutanabbi Street that day and sets it down here. Thirty-eight people died in the explosion. This is an act of transportation: things that are far come near. I did not grow up in the kind of Christian religion that believes in transubstantiation, very much its opposite, yet strangely this I could almost believe in, the idea that something can be something else, that matter can be perfectly and exactly two states in the same moment, body and blood. I cannot read the texts and can barely comprehend what any of the objects in plain sight are for, let alone grasp this ontological complexity. But I look at it, intense and puzzled, until Ev grabs my hand. He wants to go to the submarine.
We are in the submarine when I get the news about Avastin. The displays in the sub haven’t worked for a while. The crew die every time because the pressure gauges are broken and the undersea audio is stuck on whale noise. My expectations are low. I follow Ev around and my aim is to keep him in sight and get through the afternoon. His capacity to explore his environment with the barest input from me is still impressive. The exhibit is a narrow space, very popular with young children, and I get the text as Ev is flirting with another child on the narrow submariner’s cot by flicking the curtains of her bunk.
FUNDING FOR AVASTIN APPROVED.
My breath leaves my body and I step back hard into another parent. What is this? A litany of disjunction: public/personal, home/world, child/father, death/death deferred. It is all explosions and aftershocks. There is the trauma of love and there is the trauma of death but ultimately it is all trauma. Only oblivion will make it stop. A howl sits in my throat. I wish I could change places with this other parent, the man I have just hit. He is a French dad on a museum trip to London with his child. I wish I were him.
The submarine is too confined for this news. There is no air. Ev’s game is up and I drag him into the wider space overlooked by heavy artillery. At home Tom and Andy are in high excitement and the commotion in my head reaches a thrill. This news may mean something or nothing but it is the one thing that is left to do. We have always done the next thing and the next thing and the next thing and this is the last thing. Someone has thought it worth a try. It is a call to action so of course we take it. The way is not barred.
2.36
Later and later people come to our house: Laura or Tim or Tom or Jenny, Roger or Charles or Richard or Mark. I have been up for so long I go to bed, leaving them at it below. But I listen. I want to be party to it by proxy. Tom’s clothy tongue is infused with humour. Dad’s voice sounds like Santa. This is how it goes – intense pauses, jams, prompts, small running grooves, electric bursts and ruffles of talk spilling over each other. Sudden claps of laughter. They are intoxicated. Nobody is keeping quiet. What are they talking about? The things that matter to them: memories, arguments, positions. They are going over the territory they are going to lose. For Tom the later it is the better he speaks. Fluency comes with darkness.
Ev sleeps like the dead. I lie like them, attentive to the voices on the black stairs. I am a stone-carved tomb-wife sealing the bed with my long back. What are they talking about now? Not sure. Drifting. When I lay in bed as a child listening to adults talk below, I thought that this was the only talk that mattered. It’s the same excitement. This is the only talk that matters.
The next day is the first in so long that Tom has pain. We are not sure what to do. After each operation he was given some standard painkillers but as soon as he could express a view he declined them. I have taken more painkillers than him. The brain is an unfeeling lumpen thing, a blockhead. It does not hurt. But now here it is. Pain.
He tries to describe it to me, but our capacity to comprehend another’s hurt in the place where it hurts is very poor so I have little idea what it feels like. Visually it looks like a headache roving just in front of the scar-place and behind the eyes. I am worried about his eyes. They look to be next in line for attack.
I have lost track of the drugs: Epilim, dexamethasone, omeprazole, metformin, mesalazine, clobozam, frusemide, alendronic acid. I want Tom to eat a bit of food before he has a painkiller. Many of them say Take with food. But drugs are the opposite of meals.
I stand behind him stroking his back as he spoons cornflakes slowly into his mouth. A little milk drips down his front. Ev joins us. Me too, he says in a whiny voice. I pour him some cornflakes and he sits at a companionable right angle next to Tom. What about me? I start to stroke his back too. We make a tableau vivant in which I am wholly emblem, like an inn sign or tarot card: Woman stroking two backs. Content, he spoons cornflakes slowly into his mouth. A little milk drips down his front. For a long time I move my hands in circles while I stare out of the window at the trees.
2.37
It is early in the morning, only 8 a.m., but the disaster has already happened, pitching me from sleep blankness into deep blackness, and I am gathering myself post-wave. Are all mornings like this? Maybe. I can’t tell. Some ground has been reached. I am no longer scrambling to catch things as they fall, not running or pleading, just sitting.
I grip a cup of coffee. Ev has had his breakfast. Tom has had his drugs and is in place on the sofa. His body in this position is doubled in size, armatured and buttressed by all the pillows from the sofa opposite, now just a nude frame, its dirt exposed. He sits like a giant surrounded, commandeering the room, pronouncing and gesturing, but quite often sleeping. Every one of these last six days I have watched something fall away. This is collapse. He cannot rise or walk on his own and I can see the end of this last phase, the attempt at being a family at home, slipping away as the last of night turns into morning.
At 6 a.m. the dark floor was pooled with piss. Everything happens for the first time and then you know and the knowledge after that is never surprising again. So it was here.
Ev comes in flying at high altitude. In full flow he moves from room to room, his voice mobile, never halting, rising and falling in a kind of song packed with overlapping narratives half-heard and strung together and shunted along by their own weight. The jet in his hand is cruising at shoulder height and he keeps it at a careful, even distance to the floor. Ev knows about sonar and radar and the vocabulary of destruction. He speaks the death language. The jet and three Lego trains are the subject of the commentary. The action derives from Godzilla and the impending disaster is noisy and happens in real time. In contrast to the madness of the last two hours this is translating as normal. Out of habit I say Shhh, quieter. It’s all right, says Tom. Good.
Usually I feel that Tom cannot perceive Ev in full play mode. He is like a musical score with too much going on, some crazy nineteenth-century Romantic music, the full orchestra and chorus. Tom rejects these now. Mahler has gone. I didn’t like him anyway. But I notice other musics going too. Tom needs a purer line to follow. The music may be complicated but the sound should be a single or double-actioned thread with no lyrics: Bach, Rameau, Couperin, Debussy. Bach in fact. Bach is where we are at the moment.
Look, Mum, says Ev, here are the buffers and then this jet just comes like this and it burns the city but not the trains they go in the water they are safe the water will not burn this is concorde Mum look this is concorde Mum Mum it makes a really big noise heeeere it comes and the trains are clever they are safe neeeearghhnaaaaww, crassshhh, nothing will hurt the trains the fire trucks will come and kindly put water on the city and here come the Japanese people there is an explosion but the trains are in the water already so they are safe neeeearghhnaaaaww.
The sofa is raised 30 cm and we sit overlooking the bay with the boy and the trains and the fire trucks. The extra height twists the sofa’s function beyond itself and turns it into a shelf or ledge. I like it here. As long as nothing else bad happens this is the place where me and Tom and Ev are just about OK. If I lean back I can da
ngle my legs like a girl in the sun on a pier. It is sweet for me, less so for Tom for whom the sofa serves as everything: bed, seat and refuge. The hospital bed has not arrived and will not do so until our paperwork moves through the encoded triple-tiers of Social Services. What would we do with a hospital bed when it got here anyway? And where would we put the three existing sofas? We love each equally and their functions have high value. The black and green for me, the old pink one for him and the shabby blue for the boy. Our whole life takes place now on the pink and the three of us are often found on it. The hospital bed if it arrives will be functional but have no value. It will be here for the duration and then it will leave. Yes. The duration.
I have one arm around Tom’s shoulder. The other hand curves over my coffee holding it safe and the light is building fast. We are facing directly towards the window. We are both ready. Here it comes. Heeeeeeere it comes. The sun suddenly spills over the roof opposite and crashes like a cymbal into the tree outside in a smash of liquid and solid light. The tree, a False Acacia Aurea, and the sight of it crowding the window was why I wanted the house when I first saw it. Oval pinnates of yellow-lime illumination frill and burst at the glass and reflect glory on us inside. We are gaudy with the stuff, dressed and dazzled. I am suddenly at peace. Where does this feeling come from? It is because we are together in our rightful place, in and around each other. This is our disaster. There can be no other name to give it. Ev’s jet is mended around its middle with tape. It has lost its noise so Ev does it manually. He lands it on Tom’s stomach. Craaasssshh. Neeeearghhnaaaaww. It lifts off again and wings away, banking sharply. He circles and returns, transferring the jet now to the other hand to stroke Tom with his free hand on the mound of his middle. Ev looks up at us. His eyes are wide, he is exultant: at us, the place, the jet, the light. I must take a photograph. I do not move. What will I remember? What will he remember? This feels gorgeous, voluptuous, yet Tom is leaving us now, really leaving us. Beautiful says Tom.
The blue room moves into its highest phase. As the early sun strengthens and the saturation of the walls grows towards maximum, these light levels are what its colour is for. In all other circumstances I refute fate. I do not believe, but here is the one instance. Out of all the permutations on the colour chart, I chose this blue.
Two hours later I make a phone call and we take Tom into hospital. I couldn’t have told you in advance that I was going to do this but with Tom asleep and Ev at a neighbour’s, I make a judgement. Once fixed on it is immediately executed. I don’t know how. Everything I do is gilded by the aura of gold leaves. It is a Saturday but all external operators are somehow in place to make it work. I phone Dr B. She phones me back. Dr B phones the Registrar. The Registrar is on call on the ward. The Registrar phones me back. The bed is free. To have the bed we must get there and claim it. Here is a catalyst for action. Its momentum unfurls joy in both of us. Though Tom can barely walk, the project is urgently to leave the house and we must not fail. Failure means the task will be given over to others. Tom will become the object of someone else’s day, an ambulance job or a problem to be slotted in. He will become work and we will have to wait. Because he is ours, he is not a problem and he is not work. We will not wait. We just need to find a way to do it.
I call Tim, who comes immediately, and then the doorbell rings and there stand two more unbidden. We are a team. The four of us help him down the stairs. Tim behind, the Faller-back and Matt on one side, the Leaner. On the other, Marianne the Mover to work the foot and I in front am Cantor, Caller, Way-clearer and Cheerer. Just keep coming, keep coming to me, that’s it, wonderful.
I can see that Tom’s right foot does not belong. It has become a felt-shod object to be shifted by hand. He can no longer do it. The right hand is wavering too, wavering and waving, it gently sifts the air, uncertain of its status. The brain is losing agency over the right side. It has limited traction and pull and can no longer assert itself. All this is visible but what is also visible is that we four are only manual operators. It is Tom who is doing the work. The body will not move without the brain and Tom is the brain. He is highly concentrated and exquisitely slow. A distilled essence of himself, an incredible, crystalline-thinking, new-made self has been forced into being. He thinks himself down the stairs.
Transparent sheets of consciousness like the thinnest filo or gold-leaf layers gently rub against each other, crumble and become dust. I cannot take my eyes off him. He is mustering all remaining power over his body stair by stair. The whole empire is falling. It is spectacular, unbelievable. My eyes doubt but persist. I will see it. A cortège of one and three descending. The man in the centre, the one behind and two at the side form an awkward crowd tight-knotted on the stairs as if jammed into a narrow painting. Thirteen black stairs, a turn, the bookcase on the left, a narrowing, three more stairs unpainted and wooden. Then a long stretch of flat, past pushchair and scooter, six more stairs, stone now and we are in the autumn air. The foot hesitates. Down the kerb to the car. A shuffle of yellow leaves. So a man leaves his home.
SECTION 3
3.1
1 November 2010
Dear Friends
There are two pieces of news. The first is that Tom is in Guy’s Hospital as of this weekend. His mobility on the right side deteriorated sharply last week and it is no longer wise for him to be at home.
He is in very good spirits and we hope to keep them that way. Visits are a pleasure for him. He is in the same ward as before. Cards, pictures, notes are very welcome. Phone calls can sometimes work too.
The second news is that funding for him to receive the chemo drug Avastin has been approved. We heard this last week, and are delighted and surprised. This is scheduled to start on Wednesday.
It’s a very extreme time, deeply precarious, but also amazing. Tom has been doing a great deal of talking and writing lately with the help of friends.
All our love
On the eighth floor we are somewhere else entirely. The high tower creates artificial currents that storm around its base but the fast lift shoots up and at the top the air is tamed. On the ward our breath mixes closely with the breath of others. The temperature is constant but coming in from the outside I never get it right; too many clothes, too few. In this anodyne place, sealed tight, perversely Tom is become a sensualist, a volupt of the flesh. He seems to have lost his edges, or they have loosened and settled and I am unsure quite where they now lie. Since coming in, he has lost too the ability to move unaided, yet though he is so fiercely embodied, and in a body that does not move, a body that is now a serious problem, he is in a strange way, blooming.
He always had a great deal to say about being embodied. In art primarily. Being a figure in a picture, what’s it like? He identified closely with the pressures of embodiment, its expressiveness, the extraordinary business of representation. The very otherness of the physical self as it is becoming is of interest to him. The fact that it is his makes it no less interesting.
Physically he has much to learn and do, for novelty renders everything unstable and there are endless repercussions to not comprehending your own foot, but mentally, here is the new world and he is hard at it. He can move only with the agency of others. Not like an object or thing, a dog in a sack, a man in a sleeping bag, but like a potentate, an oligarch, an exotic entity. As the trappings of this state are prosaic – hoist, blanket, straps, chair – I cannot help feeling that this is mighty clever and that it requires a double-act of acute skill on his part and on the part of his nurse-attendants: him to demand it and them to give it. He has no physical embarrassment. No shame. Because this registers as absence, the importance of it might be overlooked but I have come to value its impact greatly. It is not dissimulation, just something played completely straight, ideological and lightly worn. This is not a moral issue. It is his body going wrong. Illness gets coated like mucus with physical shame. The absence of shame is enlightening. There is nothing standing in the way.
We have by far the b
est spot on the ward for a person who has no interest in being left in peace, the first bay after the entrance, next to the nurses’ station with a window on all their doings. Mounted on a herd of wheelie chairs squeaking and rubbing, the nurses chat, confer and sit on the phone for hours. They tick off lists while kicking their legs and sometimes sail abruptly over the lino to expedite whatever it is they are doing without getting up. Around the ward they move fast but without noise, like ushers or people who have studied Alexander Technique. Is this in their training? How to move? Like dancers they carry their personality in their bodies and like dancers the variety of their bodies adds colour to their skill: benign, tense, calm, funny, hassled, smooth, spiky, serene; it’s a volatile mix. This is our environment. He is raw here, as alive as ever and more demanding: more and more.
Looped over the nightlight above his bed, so visible at all times, is a sign in paint on board, a work by Bob and Roberta Smith that arrived in the post. It reads I BELIEVE IN TOM LUBBOCK. On the back, unseen, in red scrawl is the further message, The best drugs are visual.
Around the bed the paper curtains are a thick lapis blue. They limit our space to a few square metres yet make a condensed theatrical setting in which everything he does has exaggerated impact, sending waves crashing on to his audience. This can be comic, entertaining, or alarming depending on your mood and the closeness of your friendship. Eating a piece of salami, being understood, having his head stroked, drinking a coffee, watching a film, hearing an anecdote, hitting on a word, listening to music, seeing a friend come round the corner: these are raucous pleasures and his response is deep and sexy. EGGSAAACTLY he will drawl, eyes wide on full aperture and radiating on the object of his attention.
The Iceberg Page 19