The food is shocking, worse beyond jokes. I get a knot in my stomach every time it comes round. I am being beaten here. To be sure I am not exaggerating, I try eating it: one day, gristle in sauce, on another, cold, diced, par-cooked turnip and carrot medley. This is not what we eat. This is not what anyone should eat, sick or well. If I had strength for a fight, I would fight. As it is, I feed him: paella, pasta, salad, soup, sausage, sushi, sometimes from home or from the market. Though I, and many of our friends, do our utmost to offset the demoralising effect of bad food, I cannot orchestrate three meals a day and at times he has to knuckle down. Drugs have sent his appetite through the roof. Lots of rich snacks are coming in and he would eat all day, unchecked. It takes me a while to realise that this is what he is doing.
Running counter to the expansion of his personal realm, his senses are being neatly eroded by the environment so that when anything novel does penetrate it is with the force of an explosion like a Chinese firework in a narrow alley. Smell, sight, taste, are being muffled and tamped down by cotton sheets, poor meals and rows of sick men in pale gowns and trousers. I push him out in the wheelchair down to the river, pitting my strength against the streaming pedestrian flow at London Bridge, past the occult, half-built, half-dead-already Shard, its glass splinter at exactly half height. It is Babylon. The builders, commuters, the smokers and sellers, are swift and toxic. The experience of being outside is hugely tiring, more than I grasp till later, but he is amazed and energised. He loves it. It is a brutal intimacy. In a wheelchair you are not up at people’s faces but stuck around the waistline, the trunks and torsos, the hot seams around arms and legs where material tucks and sits and sweats and doesn’t fit. God how they stink, their fags, their clothes, the food they eat as they walk! His senses are being forced by the hospital regime on to an ever-retreating baseline and back on the ward, a spoonful of a mild Thai dish from the market – a treat, I thought – sends his colour rocketing, and he needs ten minutes of groaning and drinking water to recover. Stilton on an oatcake brings on an opera of sighs. He nearly weeps.
Demands are multiplying. Today I must bring in a Barbour jacket, a blanket, pomegranate juice, an orange and a banana, nail scissors and a certain straight-sided mug. The jacket and the blanket are in readiness for an outing. Three of the five versions of Cézanne’s The Card Players have been brought together in an exhibition at the Courtauld and we have long had a plan to see it. This is a proper trip with complex logistics. It means mobilising Sacha and Vivien, a wheelchair, transport and an afternoon for the project. I learn so much that I previously did not know about the world of the immobile that it is hard to believe it all takes place over a few hours. At random: I learn about the casual indifference of the London cabbie to the wheelchair user and that the clearance on accessible entrances is measured in millimetres less than a knuckle. I learn how intractable it is to push a grown man around for hours and how spontaneity is the privilege of the able-bodied. In solid counterpart to all this grief, I learn about the lengths nurses are prepared to go to assist a purely recreational and ambitious project by one of their patients.
In the gallery the works are drawn inward. The display is as concentrated as its subject. Cézanne’s farm workers hunch like Easter Island statues: the one from the Met, the one from the Courtauld, the one from the Musée d’Orsay and a clutch of other canvases. We have a long hour.
Tom says, You must do it. This means he can’t initiate the conversation but if I begin, he can join in. I move into mode beside the chair with our friends as outriders and we go slowly from painting to painting and back and forth between them. I am not so ready. I hate these Cézanne figures, their deaf-blind maleness. We get into a small dispute about chronology. Tom turns out to be right. A painting is such a complex thing however you describe it: a made object representing something else, a painted surface on board or canvas, an illusion, a formulation about the world, a sign that stands for itself, a historical event, a moment in a series. How do you stop looking when you know that your looking is finite? When have you looked enough?
We are already late. Tom is exhausted with the effort and he starts to shiver. Trying to get him home in the evening rain I stand on a traffic island in the Strand signalling for a taxi. The one-way system means a cab must make a tricky manoeuvre to reach him. I tell the first cabbie he is to pick up a wheelchair. OK, Lady, he says, and I watch his tail lights blend with the traffic streaming in the other direction. No one else is stopping. The slanting rain is freighted with ice. London rain in winter is pure sorrow. Will I ever be sad in a normal way again? I look forward to that. Finally I flag down another and get in myself, forcing him to make the turn. In the middle of these hostilities, a lady from a hospice agency calls me. She is phoning to tell me that as a carer I am eligible for complementary therapy, massage, acupuncture and aromatherapy sessions. Manically cursing I shout expletives at her down the phone.
3.2
Tom wants a book. We talk on the phone. The oyster he says. No. Damn. OK where is it? In my book. Try again … The oyster, no, Oster. I know he doesn’t want to read Paul Auster. Let’s try by elimination, is it on your desk? We are not getting anywhere … Let’s leave it ten minutes, Tom, and you’ll get it. I’ll phone back.
A short time later I get a phone call. The-Eng-Lish-Au-Den. Yes, good, where? The poetry shelves in the bedroom, a pink and white book. Here it is, The English Auden, collected prose and poetry, sitting like a miracle. And a Fessarus. That’s easy, Roget’s. We get there. So far we always get there. Each time we do this I try to think of it as a puzzle to be solved so it doesn’t hurt me.
Later, I will find this whole conversation – the english auden on the poetry shelves, in our bedroom, pink and white, collected prose and poetry – written in crabbed pencil in one of his notebooks. Tom is a notebook user of long standing. He uses them for writing and drawing and has one on him at all times. It’s a sight I have grown fond of: notebook held high and settled comfy on the chest, pencil in hand, a sideways look as if something really was just over there, and then a sudden light scrabble, a scratch of lines marking the relay of a thought into a word. The habit of reaching for a notebook is an action similar to smoking, or how smoking used to be, urge rolling into action wherever the need surfaced. Over the last months his notebook use has gone viral; their role is wildly varied and their function starker. Writing everything down on the spot is a necessity. It is not simply a question of memory. The word may not be his to write later. There is nothing that does not need a notebook. They mark the continuation of his existence.
I find them in every room at home: tiny, black books, unruled and soft with very few words to a page, sometimes only one or a single drawn shape formation. He was always profligate with paper. His handwriting was so terrible that I can’t quite tell if it is much worse now. He uses propelling pencils of a kind I cannot master. I don’t know why, I am not clumsy but I have never learned to handle these. The leads are the narrowest gauge graphite, like spider web hardened with spit. His touch must be so light.
After the first short stay in hospital in August when his drugs soared from two to eight a day, I took up my own notebook. Its black cover warms the length of my hand in my pocket and it goes with me wherever I go. At the front is Tom and his needs: medication, words spelt out between us, what doctor X said, what doctor Y said, diagnoses, dates of fits, questions needing to be asked, phone numbers of professionals. At the back, taking up far, far fewer pages are lists of tasks that aren’t directly to do with cancer. The front overran the rear a while ago but the book remains so current that I stick an identical one on to its cover with Sellotape and continue.
Now he phones for something else: There are three of them, white yoghurts, he says. No, you can’t want three white yoghurts. No, I know, but I want the biggest ones you can find. Yoghurts. No, sweet, still not making sense. OK. A short time later he calls back: T–shirts. Yes, I know. I had guessed already. They are packed. So it goes.
&nbs
p; When we are face to face we can do this readily. On the phone we speak across terrain like a quarry: great chunks of rock smashed to rubble, a landscape of boulders, incoherence, dust and vertiginous slide broken by small, un-signposted passages of narrowly traversable rock along which we meet. Every conversation has to navigate a different route and we cannot ever learn a path and use it again. Except when we can. The true thing is that nothing holds true always. Suddenly, we will have a phone call, usually late at night, and it will be just like what you might call old times except they are recent and continuous times. A perfectly beautiful verbal pearl about nothing, socks or sleep, but an incandescent bubble, a capsule of connecting light. If I had a belief in agency behind all this I might complain that this is cruel. As it is, I do not have that luxury.
I am a tiny diver seen from the ground black against the sun. I am on the highest level of the tower. My approach is good. I have paced myself, jumped and bounced twice, taking up all the energy of the board into my body and I am on the rise. It is a perfect takeoff. I feel a warm exhalation of breath rising from the ground willing me on. Except that my elevation continues. It does not stop. Velocity is taking me up too far, surely I must go into the curve and fall of the dive. Mentally I am ready for descent. Gravity drags on my thighs. The weight of my head, the heavy, so troublesome head, should weigh me down and slow my ascent, but still my rise continues. I hear my friends call out in alarm. The high-diver goes up, arcs, controls the turn and cuts the water silently without ripple or bleed, vertical as a plumb line with the head as lead. These are the rules and gravity is the agent. I am slowing, ready for the turn but it does not come. I am slowing, not rising, not turning, not falling. What is to happen? Surely I will stop, I will hang in the air and never fall. But no, even the stop does not come. Nothing comes but upward movement, held now to an imperceptible float. I am still moving, way out of reach, but my mind is thinking only of the turn and my body is poised to plunge to earth.
3.3
5 November 2010
Dear friends, dear colleagues
Tom has written a long piece about his life and work since being diagnosed with a brain tumour in 2008.
It will appear in the Observer this Sunday – 7 November 2010.
We thought you would like to read it.
For those of you who are far away, it will also be online.
Feel free to pass this message on to other friends, readers, supporters of Tom.
A case conference has been called to decide the future. In my mind I run the future forward and back all the time so I wonder if they could possibly have more ideas about it than I do. In advance of this meeting I am uneasy and prepare for it as you might before a performance. I go on the Internet.
I am looking for another home. It is clear that ours will not work any more. At the top of the search after putting in my key words – local area, ground floor, one-person, accessible – I see something so singular and fitting that I don’t quite understand it. I print it out, sit for a while and go to bed. It is a tiny detached one-bed house, a former stable block with floor-length windows. It is very close by, opposite the park. From a 72dpi jpeg the doors look wide enough to take a wheelchair. It has a downstairs bathroom and seems to tick all the occupational therapist’s boxes. I have walked past this house before and noted it with interest.
We could live there. Ev and I would sleep on the mezzanine and Tom’s bed would be below in the light of the long windows. In the night we could talk to each other. Christmas is coming in a few weeks and this is fast becoming a problem. I think we should have a great Christmas and I don’t think we can have it in hospital. So I am looking for somewhere to celebrate. Here is such a place. We could set ourselves up, invite everyone over and they would come. You could cook big meals and get in quite a crowd. It is expensive and risky I know. It constitutes a pretty mad plan but it is a plan. I am heartened to have two sheets of paper stapled together to wave at the meeting. I feel much better and I look no further.
The next day we assemble in the Relatives’ Room that Ev has grown very fond of. The physios, the occupational therapist, a doctor I’ve not met before, the very young nurse, and an Australian social worker with a squashed face who I am told is assigned to us. I have not met him before either. Dr B’s registrar doesn’t arrive till ten minutes before the meeting ends and neither the discharge coordinator nor anyone from the palliative team is present but I don’t realise this and it leaves the illusion that Aussie is the man responsible for getting Tom out of here. We have had no contact at all with the palliative team so I don’t know if the lack of them is a problem or not. The meeting kicks off an hour late and though this is tough on a terminally ill patient having to sit around in a wheelchair, we are in a fine black humour so we do not mind. I show him my little stable and his eyes widen happily to circles in amazement. Tom’s face is a mobile comedy. His eyes, assisted by his eyebrows, do a deal of work. They are like anemones reacting lightly to the environment: tiny changes in the sea’s temperature, plankton shoals, warm currents or droplets of pollution coming their way. They can open to twice their size and wrinkle deep into his face in laughter. They can hold your gaze. He thinks the stable looks funny and great. Tom believes implicitly in my capacity to find a way forward. Because he believes it, I do too and this is fitting. We are together. We will see what these people have to say.
When the meeting starts, Aussie is bullish and he takes centre stage. Once we have established that our home is not adaptable, his next sally is to say we would not want to touch any of the nursing homes in the borough as they are pretty shit. He uses the word shit. Someone in the room remonstrates mildly with this attitude but only weakly. The dialogue so far seems to go like this. Tom can’t stay in hospital. Tom can’t go home. Nursing homes are unthinkable.
Later there will be a groundswell of opinion against Aussie and his negativity prompts an internal inquiry as to what kind of a piece of time-wasting this conference is. Later I will get to tear his head off on the phone and kick his abject apology to pieces but today he is not contradicted. It is clear that no one else has a plan. Because I do have a plan and because an impasse is no use to us I get out my estate agents’ papers and wave them about. I say flatly that the only way I can get Tom out of here seems to be if I pay for it. There is silence. Tom laughs. Aussie says if we had a house that worked then Tom would be looked after by an increased community care package. Another silence. I laugh. I run quickly through the inadequacies of the community care package we had before entering hospital. Aussie says they are the better of the two on offer in the borough.
The meeting is inert. A sticker on the window says Dust Sealed – Do Not Open. People who work in institutions may recognise this as commonplace but I have never worked in such an institution and I do not. I don’t understand what is going on. Including the time it took for everyone to muster, this meeting takes up an hour and forty minutes of seven very busy people’s time. The professionals in the room defer collectively to each other. Aussie fills the breach. Two of them do not speak at all, including the duty ward doctor, who positions her chair as a doorstop, with one of her legs outside the room, clearly willing the rest of her body to follow. Dimly I understand that lack of leadership and the absence of the registrar or anyone with the authority of Dr B is a problem. Only a while later do I wonder if it is we who are the other problem. We appear to be enjoying ourselves. We might even be said to be relaxed. We present such a united front as to be impenetrable. Perhaps we are taking it too lightly. Perhaps we look like we can handle whatever happens to us, so our problem never seems acute. This is difficult. For us, remaining ourselves for as long as possible under these conditions is an intensive form of play, an art. This is what we do. I know this is what Tom is doing. He puts energy into it but it is not really a stretch. I match him. Together we are a combined puzzle.
Some simple formulations are missed out at this conference that would have served me well. The phrase, Tom requires twenty-f
our-hour care. This is a clear enough concept to put into a sentence based on the visual evidence but in the conference nobody says it and I do not hear it spoken until a week later when Karen, one of nurses, uses it as a retrospective statement of fact and I blush red to hear it so casually articulated. Of course he does, what a fool I am. Another phrase that is not used is: The community care package does not apply overnight. This is an equally simple proposition, known to most of the people in the room but not to me. It is not spoken either, so I go away with my Christmas stable and get ready to build it on paper, to make it work.
3.4
Ev is on the fulcrum of madness. Having just woken up from an afternoon sleep, he is seesawing about.
Want chicken, don’t want chicken, not like that, not a bone, want a bone, Noooo, nooooo, want chicken, I’m tired. NO.
Calm down, calm down.
I can’t calm down I’m afraid.
We are all upset, it’s very difficult, Ev, and you are doing so well, so well. I know you are upset about Dad.
No I’m not. I’m upset about chicken.
Conversations with Ev are mined with devices. Invisible until you are upon them, they can blow up either way, thrilling like an unexpected flare, a burst of surreal confetti or so painful they punch my brain into paleness. Now he is dancing in front of me in the hall, waddling about with a full nappy swinging from side to side. When I do this, my poo rolls about in my nappy having fun. Poo is power with Ev. He will not allow it to fall out of his body into a void and insists on using a nappy to keep it close and safe long after he has mastered using the toilet to wee in. I am stressed and bored by this. This habit can be true with boys in general. I have no way of telling if it is more particular to Ev.
The Iceberg Page 20