The Iceberg

by Marion Coutts

  Today at nine none of this has happened. The world has separated out into constituent parts ever so gently and thirty minutes later I have not moved. I am still sitting on the front step with Ev. The street continues to look the same: terraced houses, brick and stucco in creams, greys and browns. My neighbour passes. I say Hi with my mouth shaped like a Hi. The eucalyptus opposite, pollarded last year, looks wrong as ever. The bins are still there like normal. A cat slides behind them. Yet I cannot rise or move from the step. My legs feel immensely long and delicate and my shins are like a faun’s shins, thin and impossibly fragile. My ankles are made of china. I am soft and pliable as I handle Ev on my knee. Salt tears lap down my face on to my tongue, so strong and hot. He kisses me and I him. We are both waiting for something. We were in a terrible uproar and now it has stopped and we are looking at each other waiting to see what will happen next, as if someone else is going to decide. It really does not matter. We paw and squash each other. He looks beautiful. Did I dress him like that? When? A black jumper, drab cords, a light blue woolly hat jammed over his ears. I remember something. I remember he had stuffed himself under a chair, hands over his head and legs tucked in like a tortoise to get away from me. It was my son, hiding from me in terror.

  So. This feels interesting, sitting here. I kiss him. This is what it feels like not to cope. Nice. I have come to land in a heap on the mat, my legs are tangled under me and I feel so much lighter and fresher. I am a faun, a Disney faun. I like it. I am giving up. Ev snuggles on to my lap. I will let it go. He wraps his hands around my neck. I will not take Ev to nursery. He climbs on my knee. I will not go to work. He strokes my sleeve. I will not sort out the drugs. He burrows in towards me smiling. My brain, in a storm, has tapped into a hidden reservoir of calm and found some deeply potent chemical. For the first time in a long while, I am stilled.

  I had diamorphine once in hospital: oblivion as pre-warmed clouds borne by host angels. Though nowhere near as lavish, this has something of the luscious abandon, the overwhelming splash of the dose. No one is being managed. No one is coerced. No one is threatened. No one is going anywhere. Not Tom, not Ev, not me. Upstairs Tom eats his breakfast alone, drawn into himself for protection against my fury. It’s a pragmatic position against rampant disorder, his response to uncontrolled response. I’ve seen him take it before. I cannot think about Tom now. He will be all right. This is what Ev needs. Me. And I need him.

  Ian arrives as planned but I am bewitched in puddles of soft salts. I don’t want this to stop and I am not confident of my body being vertical. Ev and I play like little bears, propping each other up and rolling over. Why did I not do this before? I have made a phone call apparently and now here is Roxy too. Hello. One of the carers arrives as well. Hello. He is a very elegant and beautiful Nigerian. I have never seen him before. I tell him there is nothing for him to do. Someone makes me a cup of tea Thank You and brings it to the step. It is the best tea. Someone takes Ev upstairs to play. Someone calls the nursery. Someone calls off work, for the day, the month, the term or beyond that even, I do not know.

  2.31

  The blue room glows turquoise in artificial light. There are many shades of blue in our living room, all mismatched against a single mustard curtain, the only thing I have ever had ‘made up’ in the old way. I took in another curtain as template and the man who took my order knew the date of the curtain I was copying and which factory produced it by the width of its deep pleat. It was an honour to mark the passing of such esoteric knowledge. I sit on the floor. The moon floats square in the window central to my vision. The room is restful. I am not watchful. I am not expecting trouble.

  When Ev arrived home, arrived for the first time after being born, we brought him into this room and laid him on one of the sofas to look at him. He was asleep of course. After the hospital, the house smelled of decay: animal filth and chilled plaster, standing water, nameless fibres and the bodies of mites. Laying him down was like throwing a switch. Instantly he made a warm light around which to group. Simple. I can’t remember what we did then, aside from look at him. Probably put the kettle on for tea. This was not so long ago.

  Tom is writing at the table by the lamp. His speech is plausible again since he came home. He is back on the laptop. He is writing an article about a painting, Carpaccio’s St Augustine in His Study: the saint turning to the window, the little dog following his gaze. He works carefully, like a jeweller, setting word beside word, revising, pausing to see how the words fall out and if meaning crawls into place. It is like casting runes. Written words or signs are guessed at and put into lines on a hunch with other, more known words and shuffled. His hunches are good. He knows exactly what he wants to say. Meaning catches up later. Or doesn’t and the whole has to be reshuffled. Sometimes he will ask me to read something back or wonders aloud why a sentence is wrong. He gets stuck on could and be, but repeating these over a couple of minutes gets him to where could be makes multi-level sense in a click of context, spelling, syntax and meaning. It is very, very slow.

  When printed, to the eye the text is absolute. You would not bother your head about its making. This is the first evening he has been able to write at all for a couple of days and being near while he works is so much my habit that I am lulled. We are both pleased he can type tonight. This morning he had said bluntly, I cannot type. I was blunt in return. Then you will have to draw pictures.

  I pull the curtains. Winter! It is coming. We must lag everything with plastic, carpet the hall, draught-proof the windows, stop up the doors, wrap the boy in coats and make soup to last months. Will we survive it? We may not. I wonder why I feel content. The sum of our parts seems not ballast enough for the whole ship of trouble. But Tom under the lamp is doing his thing. Writing. This is the thing he loves to do. That he can do it still is breathtaking. His work is to make meaning and that it should take so much making only illuminates the endeavour. Like a spider spinning thread over yards or a bower bird bringing back stick after stick and knitting it together, the work has a goal. He does it beautifully even now. It is the miracle of consciousness and I am its witness. We are creatures. It is bliss.

  2.32

  25 October 2010

  Dear Friends

  If you have any free mornings, afternoons or evenings and would like to be a good companion/conversationalist/runner/supporter to Tom, then send me an email.

  Many of you are doing such a lot for us already, don’t feel you have to take on more, we are hugely grateful.

  If you want to do this once, that’s great, if you would like to do it on a regular or irregular basis let me know too. Fridays are already taken.

  If I don’t get back to you immediately don’t worry. I’m trying to make some time off just for me and Ev to be together, and some time in the week for me.

  We are going through a precarious, difficult but also strangely wonderful time. We are awaiting some drug news. We watch how things go.

  With love

  The home visit nurse is in our kitchen. She comes every now and then and generally has valuable and sensible things to say but here she says this to Tom. On a scale of one to seven, how would you rate your quality of life?

  I am looking at his enormous legs and feet. The skin is so swollen and shiny that the flesh is not like flesh but more a sac that holds, that approximates a leg and the skin retains the imprint of a finger like memory foam. This is oedema, something that happens when the body stops functioning. He sits calmly at an angle to her, slightly absent, lightly bored, and says thoughtfully in his new voice, the muffled, internal one that he now uses. That is a ridiculous question. Obviously on a daily basis we go – Oh God, Oh God, all the time at all the stuff to be done. But, generally, generally, it is wonderful. We are interested.

  My head jerks up, entranced. Even now with his duffed-up words he can nail the thing. Yes, we are interested.

  One

  Two

  Three

  Four

  Five

 
Six

  Seven

  2.33

  On Wingreen Hill Tom walks between two friends across the grass to the trig pillar. It is the highest point for miles and the air is forceful. From here Wiltshire spreads in a circular swirl like a hippy skirt of patches and braids in green and yellow with brown on the fringes as the season turns. Ev has just woken up and he is grieved at being pulled from the warm car into the wind. He is in a fury, pitiless. He will not walk and will not be carried. I am pitiless in turn, empathetic as stone. I will him to be quiet, spit threats and tiny curses into his ear and press him close against me under my coat, trying to shelter him, stifle him and muffle him out. This is the end of walking. All our situations now, however banal, come near to collapse. Ev the little white demon gathers all his strength to burn hotter and stronger than me and as we are in company I cannot just kill him and bury his body. I want to take a photograph. He will not let up his spasmic screaming. Please just let me take a photograph. I do it, one click, two, then abandon. We return to the car.

  The car placates him instantly. He knows he has won and we watch the three tiny figures, his dad flanked by two others moving away from us across the grass towards the copse and towards the horizon. If only Tom could continue and just keep walking, away from all this. That would be something. I would urge him on even though it would be to lose him. What will be left of us? What fragments will we pull together in this wind? Mercy, well there is none. It is the linear thing I really object to, Ev, I say, the unfolding of a set trajectory. We are all knowledge and no power. Ev has a biscuit in one hand and a drink in the other and he kicks his boots happily against the back of the seat. He likes being here with me. The wind continues to howl but in the car we are cocooned and the rest is happening far off as if on a screen.

  I look at the photograph I have taken. Tom is a wrapped figure leaning just off true. He is a spaceman. He is not in the world. The image is an inversion. I see only a small part, the part pertaining to the photograph. He sees the whole of it and me in it.

  2.34

  One at the bottom, one at the top and another one in the middle, then a one along up the side. Ev is writing the letter E on the blackboard. He has seen a little e and says it is wrong. This is how it should go. The sun is immaculate in an autumn sky. It’s been a rough day so far. I have been crying a whole lot. It’s three o’clock and we are not yet out of the house.

  The size of the tumour means that Tom wears his glasses at a 40 degree angle. He can put them on himself with his left hand and they sit at a rakish diagonal on his face. I am surprised they stay on but they do. It is functional and comical. Everything is perfectly natural. The angle of the spectacles is an optimal one, as if all along his glasses have been working towards it. I have a photo of him, glasses askew, leaning forward to look at a book. He looks like a creature lunging on food. Now he is studying the room. I like all these things, he says, waving at the CDs. And I like all these things here. He seems in awe, his voice soft as he looks around gesturing to point all of it out. I follow his gaze. It is beautiful … the beautiful thing down here …

  We are surrounded by our possessions. I am surprised that things remain where they are without agency. Nothing would ever move unless I picked it up or kicked it. I do not clean anything and I tidy very little. The balls of dust are now of a size that Ev uses them as puffs of smoke and sticks them on the funnels of his trains with Blutac. The number of objects in a single home is incredible. I am as astonished as he is. We think we are not materialistic but we have a child and we value things in relative and unstructured ways: vast numbers of books, piles of toy cars, CDs, assorted objects, bits of paper, unidentifiable pieces of stuff, all waiting for us to move them, use them, deal with them. Just to notice them would be a benediction. As they no longer matter I have stopped seeing them until he brings them to my attention. But I understand his enjoyment. He values the opaque and solid rummage of our lives. These are our familiars. He is waking them all up. Gifting them with a look.

  I have just realised that Tom can no longer get into the shower unaided. While I help him do this and wash his hair I treat it as an anomalous fact, something curious to note but kept at a distance as if it doesn’t really concern me. If he cannot do it now he will do it even less well later. I focus on the shampoo and keeping my hands busy, though inside I can feel something else going on and the implications for us and for our life are working their way through my soft tissue like a worm through earth. The worm has a hard head and a cold tail. In Nigeria as a child I got a parasite in the sole of my foot. I watched it generate its white track and plough out a pattern like a microscopic intestine beneath the skin before my mother stabbed its body with a needle and picked it out bit by bit. Getting Tom dressed takes a further while. But we do get there finally, out into the sunshine.

  I drive metres up the road to the car park to find the one disabled bay. It is blocked. Again it takes a while but sometime later everything is accomplished though it is now nearly the end of day. We are parked and the path stretches level ahead and looks walkable even by him. I wouldn’t mind some silence, just to walk together, but Tom is unstoppable. Language is pouring out in his cracked pot and glue vocabulary. He is on witty form and gets into a monologue of chatty explanations and comments, pitted with caustic humour and surprise observations all fuelled by the desire to converse. A friend has just been visiting him at home and on the path he mimes him for me, gurning his stricken face moaning and sorrowing at his condition in the style of a Japanese Noh player. Poor G, he says, I told him, ‘But it is wonderful.’

  He makes me laugh. He sounds so happy and this is infectious so I start to be so too. I feel my spine lengthening. My neck moves fractionally out of lock. We link arms.

  I can’t do this in one way, but in a different way I can, it is all exactly the same. I have heard this a lot recently but now I attend to it very closely.

  You mean that maybe you can’t say a word but in your head you can.

  YES.

  You mean that all the vocabulary that was available to you before is still available in your mind, just that you cannot speak it, or only a tiny fraction of it.

  YES!

  But poems, songs, the lost ones, are they there even now?

  NO. No, I cannot do them, or just a little.

  I am still. His tone is so confident, its confidence laced with patience, courteous and self-deprecating. I am so lazy, he always said. Tom’s natural good manners are set to maximum nowadays, as if aware that a person who cannot really speak must gather all his charm in doing human work with other humans. Speech needs exquisite care not to waste a drop or syllable. I adore this strength, the determination to let me know what is and exactly how it is. The humour in his voice is undiminished. It fizzes through his words like soda. Illness has left his character simply intact. A hurricane can destroy everything but leave a single house, its walls, roof, doors, windows standing and not a curtain gone. An improviser like him could live in it still.

  On the hill the trees are in silhouette against the sun. The light is fond of us and comes in low. Suddenly I have a thought.

  When you cannot speak at all, Tom, you will still have yourself and all your reserves of brain and consciousness for company and because you are you and I know what that means, I know that you will have the whole world inside and you will be perfectly all right.

  YES! EGGSAAACTLY.

  So that is what you mean when you say that it is amazing and wonderful.

  YES.

  YES!

  Shadows are gone. The sun is gone. The park is emptying. Just us.

  You know, in all this crap and running about and managing this cancer, we must keep doing this, this conversation, keep checking in with each other because now I can think again. It’s like a clear space that I can reach. It makes me remember how much I trust you. Because I know you, so of course it makes sense. Sometimes in the deluge of what needs to be done I forget and now I feel better, so much better. This
is the way, the only way that we can go on together. We must remember.

  YES!

  Well, just so you know how things go, and how the things that go, go. We walked this walk on Monday. On Tuesday we heard they would fund the new drug, Avastin, and his right side started to fail. On Wednesday we walked a tiny distance, less than 15m, to a restaurant to celebrate the news and nearly couldn’t make it. On Thursday we stayed at home and on Friday we stayed at home again and he couldn’t walk to the kitchen so we brought the table into the living room. On Saturday he couldn’t walk to the toilet and four people walked him out of the house and down twenty-three of the thirty-eight steps to the ground, into the car and into hospital.

  2.35

  Ev’s favourite outing is the Imperial War Museum. There are some understandable reasons for this and others I find more obscure. But the depth of his love for Imperial as he calls it is intense. He tags its suffix on to other museums he likes, Natural War Museum, Science War Museum, Horniman War Museum as if to annex them to his desire. It is his first joke. Heavy hardware, guns, planes, rockets and giant trucks – it all makes sense for a boy his age although at home his games seldom focus on battle and involve a multitude of operations. Maybe it is the word itself he finds unfathomable. God knows what children think of it. Boys love to hear the plosive sound aloud. It seems to distil into one syllable all the focus and energy of staring into a fire.

  Today I have brought him here in despair as he is fractious at home and the museum is an easy bus ride away. Tom is in the house working and Andy is his companion. They are happy and settled and Ev is one too many. I am not mentally equipped for an outing. The only bits of the museum I can stand are the 1940s house and the replica section of submarine. I walk around the rest in restless jabbing motion as a pigeon moves, staring at the ground. My attention span is near zero.