The Iceberg

by Marion Coutts

  He would always speak his writing out. Late at night I used to hear it, a man declaiming loudly under his breath so as not to disturb us: checking the words, their good action, testing them to see if they go well to the reader. The mind is an organ of hearing. The word is the sound of the word. Words have been shepherded out, spoken and found to be good. They are exactly the ones he wants to use and as his judgement was always so precise there is no reason to doubt it now. He is printed, he is written down. That’s this week’s success. What will happen next week? And that is public but what of our private language? How can a language endure if it has only one to speak it and another to give it context? We are a people of two and ours is a dying tongue. Our plight may be picked up and our conversation studied by a researcher in an East Coast University, the results analysed, digitised, archived.

  Waiting in clinic Tom asks me to make a list of the names of all his friends and what they are. This is puzzling. I try to ascertain if I am to write a minute pen portrait of each and almost make a start as it could be fun, an opportunity for simple wickedness, but no. Finally we arrive at what he wants and as so often it is much simpler than I might have imagined, being a list of their name and surname. It starts with us, Tom, Ev and me without our afternames, and then the rest follow in a raggedy line. He cannot do names now, sometimes not the first one or the second or both and even though he knows their faces and is sure about their dearness to him, the lack of title is discomfiting and puts him on more of a back foot than he is already. He is unhappy that his grasp of my name too is fluctuating. I say I don’t care what name he calls me by – and there are a few – because I am always certain that it is me he knows. Tom’s confusion is linguistic. It is neither emotional nor intellectual.

  Next, I am asked to write down a list of opposites. Dark – Light. Big – Small. Yes – No. High – Low. Full – Empty. We have done this before and I know he tried it himself in a notebook some weeks previously. As I write these and say them aloud he is fascinated and says, Ah yes, that’s an interesting one. But today, unusually, his reading is coming down each time to one pairing, the root pair it seems, and every pair he reads he voices only as BIG – SMALL. Big – Small, said each time with different emphasis and stress and enormous gusto as if each was a different word entirely. It is as if the meaning and import of all the other words – fast–slow, wide–narrow, light–heavy – is retained in the style and manner of the articulation of the root pair while only it can be actually spoken. Names – friends – opposites. His interest in all this is genuine and his excitement is infectious. As I write I lean against him like a sandbag. Skipping over the content it is fun and we pass the time well and companionably. I can feel humour sidling up in the words and in the inflection of his voice: the up pair, the down pair, the fat pair, the lean pair, the full pair, the empty.

  So this is how it is. As I said: no optimism, no content, no publication, no orchestra, no ladder but now fleshed out. Many of his words are gone, words which mean things, words which mean people, words for food, for clothes, for trees, for jobs, for countries, pronouns, adverbs, verbs, nouns. The subject, sweetheart, I am always saying, what’s the subject?

  A conversation earlier went like this.

  What’s the subject? Are you talking about your work?

  A little bit more.

  Your writing?

  Little bit more.

  Your whole life?

  Little bit less.

  We never get to the bottom of that one. What is left is the connective tissue of conversation. Something like that. On the one hand on the other hand. All this over there, said with a swoop of the hand, means the world outdoors. Intelligence powers speech. Even when we can’t talk, it is all we do. Sometimes I pray for silence. We loop and loop in wide, hilarious conversations that either get there in the end or are terminally derailed and come to rest on high ground. These conversations depend on a focused companion mind ready to go outside all the beaten tracks and desire lines. If I have the patience, and mainly I do unless tiredness knocks me out of the ring, I can fuel this stuff for hours. Some friends are brilliant at it. Others don’t grasp what’s going on and what is required of them. They can’t do it at all.

  With our friends at their house we sit for an evening and ramble till its end. Tonight the topics include Adam Philips – whose book Tom reviewed not so long ago, aspects of high-level curatorial appointments, how to curtail a child’s play from taking over the house, an acquaintance we have in common, the remodelling of a gallery (our friend is an architect), Tom’s language – even he is a bit bored by talking about this – and food. As ever he gets stuck into the heart of it. All conversing goes via him. He never sits out. So a conversation then, but every named thing in it: architect, gallery, Lego, philosopher, sex, book, salami, has to be reached on a discursive journey through fantastical strings of yes/no questions, huge circuits of expanded guesswork in long baggy primary trails which drag their own secondary subjects into the open. While we talk, we drink, and I see that on the side he is doing tiny scruffy, spidery drawings with great care, rubbed out and runic and set out in diagrammatic relationships to each other: a tree, a knot, a clock face, a computer, a typewriter, pictograms drawn in pencil waiting to have words attached to them. These are unlike anything he has done before and I can see by his concentration that it is an attempt at a new mode. Pressed against his shoulder I know he is relaxed and enjoying himself immensely in exactly the way he would have enjoyed such an open-ended gossipy evening years ago.

  I have been gifted but the gift is perhaps the same as a lack. It is to feel neither horror nor pity. Sadness yes, and a sort of intractable physical weight at the impossible hand with Ev aged three and Tom near fifty-three. But this is us. This is how we are and that fact makes everything much easier. How may I feel pity for us? There exists no objective view. Seen from where I am, we are great. We always have been. Ev’s push-along zebra finally enters the conversation without Tom being able to say any of these words: zebra, animal, child, toy, wheel, wood.

  2.25

  In the consulting room of the diabetes nurse Tom looks very sick. The lighting is aggressive and I see him clearly for the first time in days. Though bright, our house is nowhere so evenly lit as this. The morning sun at full shout filters through large windows filmed with dust and historic rain. We are both wearing the clothes we got up in not very long ago and Tom looks eroded and shabby around the edges. He is a big, dark garden rose blown out at the end of season, a hybrid, purple and black. His eyes are dulled. His hair is damp with sweat.

  His silhouette was always dynamic, strangely elastic and crisp for a large man, and kept its energy well. Now he seems loose, his flesh not kempt but wayward, no longer trimmed in tight by the body’s pull. Forces other than gravity are at work. Gravity drags down while cancer pushes out from the centre. It is a centrifugal disease that screws up everything: hair, eyes, legs, teeth, nails, bones, feet. Struwwelpeter: a malign force. I suspect that I look quite bad in this light too.

  Diabetes has developed as a result of long-term steroid use. It is just one of those extra, unexpected things, like epilepsy and oedema and fatigue, which if you were at all medical you would know about readily but if not you find out incompetently and by degrees. We are under some pressure to take it seriously and we sort of do but not very, not with the hand we hold. Diabetes just gives us a deal more hassle.

  In clinic, under these conditions – first thing in the morning, we are dead on our feet – Tom’s regard for diabetes as a topic is low, and bored by the fussing of the nurse he blanks out and drifts. His stare hovering to my left is static. I see that stare more and more these days and keep having to call him back to me. I’m over here. Because before we were proximate even when apart, I cannot just let this go. Sometimes I wave as if from a shore. I understand this stare to mean either that he cannot quite follow us or that we are talking too fast. But a more optimistic take – maybe quite accurate – would be that his mind is
still his own. He is taking up the precious seconds he needs to use it. He knows I can do the diabetes stuff, so he doesn’t have to.

  I observe him. Is he going to fall over? I wonder. He hasn’t yet, but might at any point. Is he asleep? Will he be able to get out of that chair again? Getting out of a chair is a complex muscular action that his legs and forearms strain to do. He is a dying man. That is what he looks like. How long has his skin been this pale yellowish-grey? It’s as pale as joiner’s putty or porcelain unfired.

  Then I realise that the others in the room, Dr F and the diabetes nurse, are thinking the same thing as me. I notice how Dr F hovers slightly behind him on the balls of his feet with his palms splayed open, alert to any small, unreliable shifts in the upper body that might signify the beginning of a topple with gravity pulling him unresisting down from the chair like a statue from a plinth. I would sympathise with a fall. You could fall through plain boredom. The will to lie on the floor, to be carted off somewhere else and dealt with, has a strong attraction. I feel it too.

  In clinic our conversation has moved subtly over the hour from talking to Tom as a patient, to talking about him. We talk over him and he signals that he allows this. My view shifts the longer we are here. I have crossed over. I see him almost from the outside. I am a participant and he is not. Later, I have a conversation with the oncologist, Dr B. He is likely to become more withdrawn, she says … to take less and less part in things. This can seem to those close to a patient like the most disturbing thing. This is the brain protecting itself. This is not at all how it goes.

  Certain words are creeping into my vocabulary. Single words and phrases like flag-bearers for my new narrative. They come slow, like a procession of mourners. Carer is one I resist. Palliative another. Single parent – I never voice it but it is the case. Terminal. I never, ever, say this though I know its ambit. Brain damage. No – neither. These are not new concepts, but I have hesitated a long while now and they have not been assigned a place. Doing is one thing. Doing is easy frankly, certainly easier than the other thing, which is to give a thought a name.

  To word a thought: this is a subtle and evasive thing for Tom. For me, with certain words it is a conscious aggression against myself. Retrospective naming, speaking a thing aloud once you have long got used to it and worn it in, that’s the softer way. I forgive myself such elisions because it works. I can be several paces ahead, my mind on something else entirely when suddenly struck; I turn and see the thing clear behind me and call out. There! I act surprised. Carer. I acknowledge the thought. Greet it on the road like an acquaintance. Yes, that’s what it means!

  I am lying like a blind dopey old mole in the road waiting for the lorry to hit me. Somewhere deep in my moley consciousness I have an idea that when the lorry does hit me, I, the mole, will be able to deal with it. I wouldn’t say I was moving at all. I wouldn’t say I had a strategy. I only have the thought that I am two years older now since this all started and I haven’t spent the entire two years lying in the road.

  2.26

  1 September 2010

  Dear Friends

  Here is some news. On September 4th it will be two years since my diagnosis.

  A great deal has happened to us all in that time. My health has been generally good but in the last month I have started to have a lot of difficulties. My language is at times seriously impaired, impacting on my writing, reading and speaking. I struggle with these in many strange and peculiar ways.

  My mobility has also become a real pain. This is due to the long-term effects of steroids. I move very slowly, especially up hills or stairs. But it is very good for me to see friends, and it helps me to converse when I do. I am not housebound at all, and go out for a bit every day but my energy fluctuates a lot. My chemotherapy is continuing.

  I am still writing to some extent, though very slowly and mainly at night, and look forward to working. Marion holds us all together. Ev is flourishing, living with us and we with him.

  Love

  It is midnight. We have just got home and I carry Ev inert like a small sack in an anorak and put him to bed. Mentally I unravel the evening, spent round a table with friends who had not seen us for a while. I think of their unquiet eyes, their manner soft and alert to all the changes in us. We are such tricky guests: highly unusual. We demand all the attention in a given space. It is a huge effort and when alone, tiredness can roll into the vast, hollow space of me like a bank of fog. Sometimes when it’s just the two of us I flicker off to vacancy in a click, to a kind of waking absence, blank and shallow breathing. Tom sits behind me very still under the lamp.

  In this mode I am standing barefoot facing the mirror but not seeing my reflection when I hear my name said twice. God – what is that? My feet prick out with sweat as if a current has gone through them. I turn around, frightened. I don’t understand this voice or where it comes from. Such a remote, far place, as if spoken in a chamber with all the furniture removed and the single word echoing and hollowed out hanging in the air. Here it comes again, not a word, an utterance. It is Tom’s voice saying my name.

  I have never heard my name like this, with so much mourning, and I will not hear it so again. I fold him to me. I understand it, its timbre, of course I do. He is losing my name. He is seeking it out as a word and feeling it on his tongue. How is it pronounced, this name? Irresolute now, he does not quite know it and in this speaking the whole shift between meaning and mechanism is breaking in on us. Everything follows from this I tell you. Everything. My name is a word like any other and though it means all of me to him, just like any other it may be lost. This is the trajectory of disease and if we think about it, it is a natural progression. But we do not think about it because disease is a wave and we are always, always in its wake. Like survivors floating behind we are knocked stupid. We must scavenge, pick things up and construct anew out of flotsam. A word that means my name can be lost just as well as a word that means door or coat or nail or boat. And we really do not grasp this. You’d think we might but we do not. There is no getting ahead of the wave and imagining our lives enough in advance to prepare, and maybe if we could, then we could not live as we do held tight and fast. We would simply drown, each alone and separate. Yet somehow, somehow, we still expect our sacred and familiar selves to be spared from oblivion until that endpoint when there is no more time left for us anyway. Marvellous. Miraculous. But why should that be so? In the last two days – two days! – we lose more in two days than you fail to recall in a year – all the names are going. We have been working through his essays on artists, running over the English lists. Tom has so much to say about them. He knows them still and their workings so well. But their names … Stubbs, Flaxman, Blake, Hooke … all going, all unspeakable. A new thing is voiced out of the chamber but this time a bit more distinct, soft and clear. My boy, he says. I cannot say the name of my boy.

  2.27

  On Box Hill we are exposed to all radiation, the bad and the benign. We are scoured and stabbed by leaves and blades of grass, by needles of rain and tiny stones. We endure it. We have come here willingly as we keep having ideas and one of them is termed The Outside. In my notebook are many overlapping lists and this one comes from the blunt, short-term list of things we want to do immediately, for pleasure. It is important to write down these ideas as otherwise the pressure on a given day can sometimes crush us and it is easy to forget that we ever had lives with interests and agendas. The effort, though, is great and it’s no good ever trying to set effort against reward. Pleasure has to be won and all the better for it.

  The little list has on it: Avebury, tick. Moro, tick. Plays known – the idea is that Tom, who loves and despairs of plays, having seen many badly staged – would comprehend and better enjoy a play he knew very well, no tick. Haircut, tick. Concert, tick. The concert was Lachenmann as David was playing in it. I drove Tom there and David and Martha brought him back and I savoured the normality of it through the evening like a long-lasting sweetie in my mouth. The Ou
tside, tick, and so here we are on Box Hill.

  The ground is chalky and poked through with tiny plants. In front of us is a vast view over some county, perhaps it is Surrey, and perhaps this is why people come here, but it is all is so far away as to register only as a zone of indistinction in a soft grey hue and I hardly know where I am much of the time. This is where you would come to watch the detonation of a bomb. It is a good vantage point to view a scale-less mushroom cloud easing into the sky over the whole region, displacing unimaginable volumes of air. After reaction, when knowledge touches atmosphere, there is no rescinding, only duration. I put my fingers over my eyes and imagine all the bones of my hands visible.

  We have driven out with Heather and JK and they have a feast ready of chorizo and soft blanched cheese, green rocket, small pies and good tea in a flask. Heather walks Tom across the grass, past the holiday cabins that make up a little community like a survivalists’ camp. It is abandoned. There are no survivors. We find a bench for Tom and the rest of us settle on the rug just as the rain begins. I know Ev loathes this. He hates extremes of weather grabbing at his arms and legs and roughing him about. I make myself as thin and hollow as possible and stuff him under my coat but he escapes to trail around forlorn in an adult anorak, his sleeves dragging on the ground like a wet ape. Tom is happy in his jacket and cap, sealed against the rain by exhaustion known only in dreams and the thrill of the high whipping clouds above our heads. But Ev is an instant complainant. Why should he endure along with us? Why indeed. I do not blame him but I am ruthless and I take no prisoners. I insist as long as I can. I insist and insist for just enough time to let me eat and then I give in. Back we go to the sealed car to warm it with our breath.