The Iceberg

by Marion Coutts

  To look at him it is not evident what our daily traumas are doing to his psyche. Nothing is hidden from him. Everything is played out in his sight. But this means that he is a watched child. I am vigilant for warning signs, physical changes or minute recalibrations of behaviour that might indicate anxiety. But on the surface of his long, clean body there are none. He does not develop eczema or withdraw from play. He does not become aggressive to other children. He does not stop eating. But all is being evaluated in his mind and the thing Ev could do as soon as he could talk about anything was talk about us. Withholding his own shit may be his defence. Articulacy is his line of attack.

  Ev, let us try and sit on the toilet to do a poo.

  No.

  Tell you what, just come and sit for me for two minutes, you don’t have to do anything, just to remember what it is like.

  NO.

  Why not, Ev, what’s the matter?

  I am worried about Dad’s tumour.

  I can tell from the view of his face askance to mine and the tone of his voice that this is Ev playing his master card. He is trying something out and doing it supremely well. He knows it will work. It is a wild card. The linkage between these things at any moment may be less secure than he claims. But it is unanswerable. Ev, you play like a genius. To say I am worried about Dad’s tumour is to win any dispute he is involved in. I will always, always, back down. Any adult would. He’s a real pro. We are all worried about Dad’s tumour, lovey, but poo is poo and tumour is tumour. This results in a little breakthrough and he does come and sit and we chat about nursery; about what we had for lunch; HMS Belfast, where we go as it’s next to the hospital and the small, leaf-choked runnel we played in today. After a couple of minutes he gets off, saying. It’s not working. I’m not a grown-up. This is much nearer the mark. To resist the movement out of babydom with all its impetus away from me, away from skin and softness leaning against each other, towards having to do the dull thing for yourself in a little room in private. This is all understandable.

  I have been left with this child, a changeling before time. He was never meant to be mine alone. Ev is a confluence child: a child of two tribes. He has that air. This morning very early I cut his hair, transforming him from imp to page. He is easy to please: I bribed him to sit still with a box of raisins. Quite often we spend the evenings alone, just the two of us. Exhaustion is a big factor. Partly I like it that way, partly I can’t be bothered to ask for help and partly the help you don’t ask for has waned. I am trying to think about how we are going to be but our mode is a threesome and this dictates the whole of its dynamic including my thinking on it. It is like the mainland trying to imagine being an island.

  The child will remain by my side when the trio we are has gone. It is a small, good sign that I can still care for him and by this, in covert ways, look after myself. Tonight I eat spoonfuls of pesto from the jar out of the fridge and finish the leftovers on his plate. He sits on the sofa ready for ice cream after another long afternoon in the hospital. It is eight o’clock but our schedule is wayward and supper has been eaten on my knee by the fire. Would you like some ice cream? Yes. Did you buy it? He asks. Yes. He gives me an unaccountable grin and a shiver of delight shims along his naked legs into his toes, setting them kicking. I laugh into the freezer. He is lucky that boy. God he has luck.

  Wherever we go, Ev and I, though we do not go far, our faces are turned to the ward in the sky like a signal tower. It calls to us every waking moment and asleep I would know its orientation. It is our magnetic pole. Ev is conscious of this in his own way; curious, fractious, accommodating, amiable, anxious, and I understand it in a kind of mechanical, task-based totality. I am with Tom when I am not with Tom: driving, thinking, fetching, carrying, listing, remembering.

  Tom’s position is so fixed in the bed that he cannot see the view extending out over the south but he catches the sun balls that go down these days in flames over the other, metropolitan side of the building. From the eighth floor you see the clarity of St Paul’s unimpeded as Wren would have it, the dark tower of Tate Modern, the river, the wheel. Snow is on the way they say. The days are getting colder. The days are great and terrible. Great because he can still phone me and laugh and talk at me in his thick, rich voice. Like I said, no edges. He is blurring, borderless, bespoke: nearing a liquid state and his voice is a deluxe manifestation of this. Terrible, because now he is in the hands of others forever and separation from home is official. There can be no other way. Yet separated, in tiny slices, I can begin, ever so slightly, to be with him again. I am free from the burden of stopping him falling, or slurring, or fitting, or fretting, and I can sometimes, not often, for there are always legions of things to be done that cannot wait, but sometimes, come and be close. On the bed we sit attached by headphones, one ear apiece and listening. Ligeti ascending: a telephonic call sign to the stars.

  The pull of the bed is elemental. We don’t want to leave it but people say we must, so for one night it is arranged. On the Saturday morning as we are leaving, I stop by very early to drop off some clean clothes. Weekends on the ward are slow. When I get there the curtains around his bed are closed but I am rushed so ask to go straight in. Of course. Flicking back the curtain I squeeze myself into the space at the foot of the bed.

  Tom sits upright, cropped and foreshortened, propped on pillows. Three women from three different continents are giving him a bed bath. The water is blood-warm with drops of oil. Wet cloths and dry towels. One moisturises his legs in long, lazy motion. Another cleans his nails. Four heads are bent in conversation. In the busiest hospital, in one of the densest cities in the world, they have all the time in the world for each other. At seeing me, his face lights in greeting. Aaaaaah! Helllloooo! Their voices rise to meet me in warmth and pitch. You don’t need to hurry, they say. You can stay. I do not wish to leave. I do not ever wish to leave. I do not want it to end. He is at the centre of attention, relaxed, simply enjoying himself. Everything is all right and will be now and forever. Ev is waiting for me below. I must descend. I embrace him and as I slip away the curtain falls behind me sealing them in. In my mind they are there still.

  Our destination is a friend’s house in a trough of land with no mobile signal. The sky is overcast, solid, dirty weather, rain like spit. It is very cold. Nightfall sets a curfew on the village and very little moves save at the entrance to the pub. Each house has a vast and splendid television.

  There are certain times when I most like to speak to him: mid-morning, around teatime, and again before lights out on the ward. The code is that when he wants to speak to me at any time he sends a blank text and I call back immediately. We call each other all the time. My friends direct me to a low bank of earth just off the road at the entrance to the village. If I stand on the topmost mud, with luck I will get a signal.

  It is dark save for the moon, my companion, the one that has dogged me since all this began. The signal comes like a fragile miracle. One mark flickers on the phone, then two and then the man’s voice is like another. I wrap myself in my coat and his funny, viscous words glug into my ear slow as a drunk. He is so happy to hear me. We are both undone. He uses his vocabulary – how many words does he have now, less than thirty? – like a grandmaster. I tell him about where I am on the mound, about the moon, the mud, and remind him of another time, long ago, in Scotland, when he did exactly the same for me: found a point of high ground each night so that his voice could reach me. It felt primitive then, from a folk tale about lovers. I send my voice freely into the dark for there is no one else to hear me. We say goodnight and goodnight and goodnight and use up all the words we know for goodbye.

  3.5

  The tumour’s physical presence has grown. The little lump was only the start. This is unusual. Most people are dead before the thing shows itself. Disease has taken the weakest route via the scar to exit the head and is now flourishing outside the skull. This growth may be good. Better to be under our eyes where it can be dressed and assessed than couc
hing inside, impacting on the skull, blotting out the brain. So, on the left side of his head above the ear is now something the size of a tennis ball. Or is it an orange? A potato? A chunk of Play-Doh?

  The very earliest ad-hoc descriptions of the nascent tumour on screen were made variously by scanners, doctors and neuros, all choosing words to convey its interior presence on a subjective scale. Pea, they said then. Grape. Marble. Bead. They might have said pearl or baked bean or Malteser. Lychee. In the last weeks – or is it days? – the lump is much bigger than all of these things and it looks angry. It has a mean snakehead, red and yellow. It is about to break the skin. Then we will have more troubles.

  This is what cancer looks like. I did not know that it could grow outdoors with cells burgeoning in the air like a plant, but then I was ignorant of all of this. Once I saw a great weed, a buddleia, growing out of a window frame on a Glasgow tenement, wild and unchecked, huge against the sky. It seems accurate to say it looks just like human matter: thick, dark, bloody, lumpen. This is what we are made of.

  And if I said to you now that we three are together and we are happy. If I said that in a way we do not care at all about this lump thing because what has happened to us has already happened long ago and so much of the rest that has happened since then has been stuff made and lived through by us entirely. Would you believe me? So it is. This is, I repeat just so you remember, the good bit.

  3.6

  I have had a brain episode. Odd. The fast-flow lava of stress, red and black, has cooled to a crust over the molten stuff beneath and the friction between the layers causes something to happen. There is a limit to my mind. You should know that my task this month is twofold. I need to find somewhere for my husband to die and I need to find a primary school for my child. The deadline for both is now. For reasons I can’t add up, a collective flip, category confusion, renouncing of responsibility, ineptitude, temporary system failure or a rotten social worker, I do not have adequate or in fact any help to find the first of these things. The second one alone is difficult enough in London so I have heard.

  I am not on any mood-stabilising drugs. Maybe I should be. The episode occurs after a late-night call with Dr B. The call itself was not a shock, nothing surprising. It only solidified my understanding of care in the community as mirage. But the conversation has a backlash. I do not get away unscathed. I go to bed straight after and as my head goes down, the room swirls, circling and giddy in the dark like a nasty bit of drunkenness. This lasts a couple of minutes. After a while I fall asleep.

  The next morning my skin has become autonomous. It is live. I feel its peculiar defection as soon as I am conscious. I am wearing someone else’s skin. It is not dormant but ON, sparking with tiny electric impulses. Pricks and shocks are going off, on the soles of my feet, in my chin, the right side of my shoulder and down the back. This fails to ease or go away through the day. Clear thought is beyond me. I am unable to concentrate at all. When I try to engage with Ev I am conscious only of the nerves exploding along my arm. Sharp stabs attack the soles of my feet when I walk. This is so unnerving I cry out aloud. It can happen anywhere, at any time, so I must be alert and on watch, but for what? I cannot stop it. Like an idiot game against myself, the flesh is mobilised. The Numskulls are dropping acid. The body has sent out teams of Lilliputian bowmen and they are reconnoitring inside me. What switch can we hit next? Fire! Where can we attack? Here! Whole communication systems are going mad along my arm and down my back. I have injected live electric glitter.

  I try to calm it, talk myself round. OK, this is your body saying it has had enough. You could think of it as an extension of consciousness, a sort of commentary on being alive. The body says, ‘Look – here is your foot. This one – see here, Fire! This is your shoulder blade.’ It’s just a heightened form of awareness. You are being reminded of these body-parts. It’s insane, yes, but you might learn to live with it. You live with worse already.

  My motivational speech tails off. I haven’t wit enough to keep it going and the electric critters keep rioting. I am depressed. I am going to die. I have MS. I have some hideous neuropathy. It could happen, you know. It would be just bad luck that not one of us but two goes. It’s not impossible. My sole ambition is to live and the bar is low. I want to survive till Ev is twenty. That is my goal. Just so he is not too sad. So I can stroke his head some more and hear him tell me about his day. Don’t mind really about anything else.

  I get myself to the GP – good Dr F – and he organises a clutch of blood tests: calcium, cholesterol, liver, kidney, iron, some others I forget. Eight labelled tubes of dark blood go out and eight results come back some days later totally normal. Stress, says Dr F. Stress. You need two squares a day and time for yourself or you will go down the plughole or words to that effect. I say, I know.

  It is so very easy at this point not to eat. My mother sends a food parcel. Vivien knows that if she places a piece of food in my hand, a sandwich, a pie or a vegetable tart, I will eat it and she acts accordingly. Otherwise I will not. I feed Ev. I buy food and make sure he eats but for myself, I don’t mind, or more strongly, I don’t care. I am not hungry.

  Facilitator, gateway, guardian, custodian: I am the one people turn to for all the practical issues to do with Tom. Where has the wheelchair got to? How does he like his coffee? Have you got any clean shirts? Would he like a visit this afternoon? Or, speaking to him, Do you want an orange juice? Yes. Can you not work the DVD player? No. Did something annoying happen on the ward? Yes. Shall I bring in some supper? Yes. I am completely snared by the quotidian and its ceaseless requests. Thinking and feeling are exorbitant demands, well over the odds. There is little uninterrupted space with Tom. Not from visitors – let them all come – but it is simply so much quicker for him to get me to understand what he needs and sort it than to start laying out his basic blocks of language for someone else.

  I resent this. There has to be more. But the big concept – our future separation and how we might express our feelings about it to each other – is beyond my thinking. We try. You must understand. I too am not fluent. I am speechless. There is no time. This is true and damning and in one way it might be a blessing but doesn’t feel like one. My thoughts run on managerial lines. Management. God. Insane. Let all of it go to hell. Let it all go to hell and me too for the space of just one conversation about love and death and disappearance.

  And yet … Yesterday, home after an atrocious day, I get a phone call, late and long as ever from him, hailing me in a strong and boomy voice. Do you feel well? I say. Yes! YES! You sound fantastic, my sweetheart. YES! I am ecstatic. He can hardly speak for laughing. I ask him about what he feels, about the extraordinary sensuous curtailment and corruption of his body. We are both roaring as we speak, me on the sofa, him on the eighth floor, phones jammed hard to our ears. I go to bed wrapped in pleasure. He has had the paella I left in a thermos. He has eaten well. He has had his visitors, the evening’s random good companions. He has communicated with all. His spirits are high as ever and my equilibrium, after a murderous start, is climbing fast to meet him, just as my day is rolling over and I lose consciousness.

  3.7

  17 November 2010

  Dear Friends

  This is a call among you for advice. Tom is still in Guy’s. His spirits are very good. He is thinking, talking, his language very tricky but seeming stable. He wants above all to work on writing projects, and with friends to help, he can. We went out to the Courtauld last week to see Cézanne’s Card Players.

  But he is not at all mobile, he is in a wheelchair, and he needs 24 hour, quality nursing care. Which he is getting.

  Tom is still very much himself. His coherence, and state of mind defy the visual evidence in his brain.

  We are now looking for a nursing home where he can be comfortable and cared for, that will allow him privacy, safety and access to friends and preferably be not too far from Ev and me. I am out of my league.

  If any of you have positive experiences
of nursing homes in London, or any suggestions at all to make, please do pass them on.

  Tom looks forward very much to seeing you. Those of you who have seen him lately know that he is a pleasure to spend time with. He loves your visits. One-to-one can be better for him than groups.

  I send you all, our love.

  If this were fiction, by this point it would resemble a badly plotted folk tale somewhere midway. It is gargantuan and over-complex. Its internal logic collapses under too many layers and it teems with characters, false trails and sisyphean tasks. I am in a car going around London with Vivien to look at nursing homes so that Tom can be discharged to a place where he may die. I am being pushed towards this option though that’s not quite right, as option suggests choice and this is the one idea but nobody is pretending to be enthusiastic and I catch the tone correctly. Somewhere about the hospital is a Mr Discharge who gets mentioned a lot. Everyone says I should meet him as he’s the key man but no one arranges it so I don’t and time goes by. We are finally connected to the hospital palliative team and I am regretting it. Palliative comes to see us every now and again. Yesterday she mentioned in passing at our bedside that there was a good nursing home for younger patients in Tunbridge Wells but when I closed my eyes to slits and turned my reptile head towards her, letting my gaze brush her ever so lightly, she paled and weakened and withdrew to another part of the ward.

  My flesh is morbid. The epidermis jangles with static in a continual electric burn, a low fire on the tundra of my arms and shoulders that sometimes licks into the air on the scalp under the hair. I have no faith in this project. Muscles, eyes and tongue tell me. I am not mad. I am sane. I taste the idea of separation and the weakening of our orbit around each other and the taste is bitter. My body is in permanent revolt. I do not eat, my shit is black, but here we go in the car to check things out, as really, what do I know? I am a Lay Person.