The Iceberg

by Marion Coutts

  When the rain abates we venture out again to jump on a pile of gravel, kick a dead log and draw lines in chalk on the paving. No one else is around. Snails emerge. Ev finds a frisbee in the wet grass. All the while as we play we curl forward and back to Tom and around again, forward and back. Everywhere we go he is the context. He is with us in the heart of the game and outside it as a spectator and he watches it closely.

  2.28

  5 October 2010

  Dear Friends

  As some of you know already, Tom is in Guy’s Hospital with a chest infection.

  This is to tell you that he is likely to be there for at least another week.

  He is in good spirits and we hope to keep them that way. To those who visited already over the weekend, much thanks. He had a wonderful and lively time.

  Short visits are great if you can, as are cards, pictures, notes. Phone calls can sometimes work too.

  Call me if you’d like more information.

  Thanks as ever for your support.

  With love

  It is the dead, the straight dead of night and I have brought my subject and my object, the one who all this is about, into the hospital. He is wheezing. His face is florid and jowly, wrapped in a scarf and hat and his temperature has tripped over the killer number, 38. Thirty-eight means a phone call and immediate hospitalisation but we are OK. We are more than OK, we are delirious, in a high humour. It feels like a mad road trip, barking. A silky night-rain is falling as ever on the Elephant. Once out of the car we try one of the hospital wheelchairs but it’s an abused thing, like a shopping trolley fit only for the bottom of the river. I can’t unstick the brake, then I do, and I can’t steer it, then I do, and now upstairs I can’t push one side of the double door to get us into the ward where he is expected. We are unable to manoeuvre, dammed with all his weight listing to one side, and as I reverse for another assault I see the silhouette of the faraway nurse illumined through the glass like a Vermeer maid at the end of a quiet corridor reach down to press a button. I am through. Tom stretches the crook of his stick towards me as a falling man grabs for a branch and I pull him in after me just as the heavy doors move to close. His eyes have a full-on, wicked glaze. He is enjoying me going bum-ways in, laughing at the ridiculous, impenetrable doors that thwart the weak, at the deadness of the night and the great adventure of it all, another episode in our adventure of being and dying.

  When the tests start up the nurses suddenly accelerate. I gauge the danger from their speed. This is serious. We should have come in earlier. Later we talk to the night doctor. He introduces me to her. This is my friend.

  Ev says, I have a sad feeling in my tummy because there is a problem.

  It is unanswerable. I rub his tummy.

  I say, When you have a sad feeling come and tell me and I will think of something to help. Talking is good, and hugs and rubs, but you know also, Ev, sometimes people are just sad.

  I am sad about Dad.

  Me too. Let’s go and see him in the hospital tonight and we will take the fishing game.

  Tom has been in hospital for ten days now. We take in the fishing game and some sushi and we will have tea together. Sounds like a plan but it doesn’t work out.

  Here’s the full weight of the thing coming down. The combination of Ev and Tom and the hospital is the one that doesn’t work. I keep trying to get the peg to fit the hole but it doesn’t. Too hard, too split, too wrong, so Ev hasn’t been in since late last week. Today I have been in a meeting about Tom’s work and Ev has spent the day with his cousins. He takes all of childhood as his due: mud, scooters, cars, cakes, sausages, the whole messed and mangled template scrumpled up and given to him like it was a normal everyday thing. When I come to pick him up I watch from the sidelines. He is hot, tired, happy, played out. Now it’s time to visit the hospital. It is later than planned. Ev is more tired than planned.

  Visiting hours look and feel the same. The same duo flank the bed of the man opposite. The Asian family are camped further down. Somehow, though I like this ward very much, I don’t connect with the other patients, catch their eye or exchange pleasantries. It doesn’t happen. Privacy is too lightly veiled. It’s all too vital and too tender. In Poland I passed through a student hostel on a trip to Krakow and it was clear that the very young couple in the bunk opposite were on their honeymoon. They were on a tight budget. Rather than go out to eat, she unpacked the evening meal on the bed, a complex, elaborate thing from tins and packets: herring, pickles, eggs, Russian salad. The boy didn’t lift a finger as she self-consciously served him on the lower bunk and they ate slowly as if in a restaurant under the eyes of the young Westerners who pretended not to look. So it is here.

  Tom’s voice is louder than usual. As his speaking becomes more difficult he can’t control its volume so on the ward we are always broadcast with Ev carrying our noise still further. Ev is delighted to see Tom, and Tom him. This is the whole of my reward and it is a good one. They eat.

  Tom has said that we don’t have enough film of him and Ev. So I film. I do not eat. When the food is done I clear away and get out the fishing game. I film. I do not play. Ev doesn’t know how to play this – or any – game and after a while Tom complains at the way he is playing. I tell him to stop. Tom now wants to do a bit of work on the laptop I have brought in. Ev wants to do a poo. This is an unhappy combination. Ev still likes to do his shit in a nappy. He is a boy of implacable habits and my feeling is that as his father is dying it is not the right time to try and shake them. Death and shit are joined enough without me forcing the issue. I figure that when he wants to change, he will. Trickier still though is that the ritual extends outwards; Ev likes a nappy, a chair to lean on, a book to read and he doesn’t like being disturbed. He prefers to be in private with me in another room waiting for him to finish. But tonight he wants it differently. He doesn’t want to go to the toilet. He wants to do it right here next to Tom on the ward. We have a quiet little argument at high temperature and Ev and me go off to the toilet with a book. There is only one public toilet on this floor so we lock ourselves in. We may be a while.

  Twenty minutes later my mood is vicious. I am still sitting on the floor staring at the walls and I have lost count of the number of people who have tried to enter by throwing their full weight against the door. No one tries the handle first. It is stifling. I want to be with Tom. Ev still reads his book. He hasn’t done a poo. Visiting hours are nearly up. I roar at him quietly in the back of my throat, tearing the fibres of it a little. The choice is between roaring or full-on hysterics. I have to get out of here. Ev’s colour is high. Lolling against the toilet he fiddles with the sanitary disposer and makes random conversation. Finally: That’s a good poo, he says. There is nowhere to put the shitty nappy. It is too big to fit in the disposer so it goes in a bag in my satchel. Back we go on to the ward.

  Tom is where we left him with the laptop. He is still copying down the passage he started with. Of course it would take ages, his handwriting is barely functional, but this long? I hadn’t understood that he would want to work, having asked for Ev to come and see him. Why is he doing this? This is his child. It is late. Not the time not the hour. There is no time and no hour. He picks up what I am thinking and looks at me. I still have more to do, he says flatly. Ev starts crying. I will copy it for you if you take Ev for a walk. Ev cries flamboyantly and lies down on the floor of the ward. I smell shit in my bag. All the visitors have gone. The men are asleep or comatose. This will take me two minutes. You must take him. Just take him and let me do this. Tom tries but cannot shift him. Ev cries harder, piteous. I want to hit someone, either of them, both of them.

  You are killing me, I say under my breath. You are smashing me up and killing me. Leave then, don’t visit. There is never any choice. I cannot win. I know it. Death trumps; trumps me, the child, all our desires combined. You should have brought him earlier, says Tom. He is too tired. Fuck you I was at a meeting sorting out your fucking life. Ev is red-faced now and de
sperate, wailing. The cancer men grumble and toss in the blue light. Nurses look in our direction. They are right. What the hell is he doing here? I scrape and scrabble to get the words down. The pencil lead atomises in my fist. Leave, leave. He hisses. I find a pen and write down the line he wants underneath his seismographic hand.

  Done. Done. Now, quick, everything in one move: bags, shoes, hat, computer, all done in one move done and let’s get out of here. I wish I need never bring Ev here again. The two of them blow kisses. Tom stands static, a figure of solid, coalescing muteness. I think he would rather have his words and not us. Words will last, and we, well, we will do whatever we do. We are not creatures of posterity, we are too wayward, Ev especially. Ev points to a future somewhere else.

  Walk us to the door, I whisper.

  I want to go home, Ev whines.

  Please, you must never, ever make me combine work with the child in this place. It cannot be done. I am carrying his poo in my bag. I have brought food for you. I have filmed you. You have no idea what it’s like. You cannot imagine and you have no idea.

  Leave. Just leave me.

  I cannot, you know I cannot. I will not.

  We blow kisses like normals. We move further off and blow some more through the two window panels in the door, the high one for me and the low for Ev. Ev does it for real and I in a kind of insensate storm.

  Now that he knows he is leaving Ev changes tack. He is in high spirits and wants to get downstairs to see the automaton in the lobby of the nurse feeding the patient, though we rarely get the penny into her cup to activate her. We are too incompetent and slow on the roll so the patient never wakes to open his ghastly automaton mouth and take his medicine.

  My throat feels burnt. After four goes we fail to get the penny in but Ev is cheered by the row of ambulances outside. At Elephant and Castle he asks What is when you die? I circle the Elephant in the dark. This is what I do. Circle the Elephant at night. Die is to no longer be in this life with us. Die is to stop and be gone. We all have a life, Ev, and it is wonderful, many things happen and then one day it stops.

  By the time we are home he is asleep. Pity. I had wanted to offload a thousand apologies and cradle him and stroke his hair. Sorrow for my handling of it all, for my temper, for his father, for the disaster of our lives which sometimes flares and eclipses us but I cannot for he is asleep. For him this is best but for me, a great pity. I don’t get to make my baby explanations and soften and soothe myself in doing so. Today we made a mistake. So instead of an apology I open a bottle of wine. If Tom had any wit he would text me right now. But he has not wit. Cancer is making off with his wit, his speech and his consciousness.

  But yet, yet … I take two thick swallows of red and text him. He calls back immediately. His voice is heavy but steady, still his own and to hear it is simply to be solved. To talk to each other is to have our medicine and to be remedied. How easy it is. We just open our mouths. I remember now. We made a mistake, I say. Yes. We made a mistake. He echoes me. Sleep well. Sleep well. All love. All love. Till tomorrow.

  2.29

  Tom is asking me to find a dressing gown and bring it in to hospital.

  This is how we do it.

  It’s a beautiful simple thing.

  You have one.

  And I have one.

  Is it clothes?

  Not really.

  (He is a stickler for categories.)

  Food?

  No.

  Bigger than a computer?

  Yes.

  It’s very simple.

  You like it and I like it.

  (They are what we wear in the mornings.)

  Do we use it in the kitchen?

  Not really.

  Many people have one!

  It’s just a simple thing.

  I like it and you don’t like it.

  (He wants his second gown, the one I think is scruffy.)

  When we finally get there – the blue, second-best dressing gown – I often pointlessly complain about one or more of his categorisations sending me off on the wrong track. He has a nice habit though, when you get something right and bring it in, or hit on the precise thought or word he is looking for, of saying, Yes, that is perfect.

  Having an infection puts the brain further under pressure and impairs his speech heavily. There are certain stock phrases he uses with great tact and care in reference to the state of his thought. They change their nuances in different settings and over time you can work this out quite well: This way and then another way. Never the case. Still a little bit.

  He refers to himself sometimes in the third person. He might refer to me as Ev or Tim or Jenny or whoever is in circulation. Green might be red. One way but not the other way tells me he can think clearly about something but not verbalise it. In a different way means he knows exactly what we are talking about in his head. About Ev he says, He I can do – but the only one, meaning he can say Ev’s name aloud but no one else’s. Ev’s name can shift but today Ev stands for all names, the only one remaining. Tomorrow other names may return. A couple of times he says, Ev – near that and this means he is referring to me. The physically spatial applied abstractly is a construction he uses a lot.

  Staying on top of these switchbacks is not possible and once when crossed a dirty, veiled look appeared direct from somewhere behind his eyes and he said coldly, Well I shall say nothing at all then. I see anger occasionally against me. But it never lasts. I don’t know why not. What if I might be thwarting him? What if I might be not entirely on his side?

  For God’s sake, I am another human, I say. I am not you, but another person, that’s the problem. He ignores this or simply can’t afford to be conscious of it as he tasks me to execute his understanding and will in the moment that he wills it. Of course he does. I would. We all would. He would do everything himself if he could and the fact that he can’t is merely an inconvenience.

  For his own reasons Ev is also unforgiving of my autonomy. I ask Jenny.

  Does Ev know I am human? It’s driving me mad the way he uses my neck as a stair to climb on top of my head. The way he flings himself at me from the back of the sofa as I sit on it. He wants to smash me up. The lack of care I am finding really hard.

  He is separating and he doesn’t really like it, says Jenny.

  But so aggressive!

  Yes, so aggressive. Separating is hard.

  I have disappeared out of range. I can hear things that others cannot. I can communicate with Tom and Ev but the conversation of almost everyone else is beyond understanding: squeaks and trills, a pipping, stuttering noise, high and without substance, like wind in old pipes. Are they talking about anything? It doesn’t seem so.

  2.30

  One day this is what Ev will say.

  Sometime in my third year my mother changed. She became a mad person. She looked after me OK, she was quite funny, but sometimes really angry, so angry that I would try to see if I could get her going though it was hard to work out why, as different things would set her off. She would scream and shout. It could be good but a bit scary. I would cry. Dad had a brain tumour, diabetes and he was very stiff. He couldn’t really play much any more, he got his words muddled and sometime in that year he stopped being able to talk to me.

  Tom is home again. I am in danger of doing Ev violence. I am a person in negative. I exist to facilitate the household. I have no more resources and though friends and family do what they can there is no support in the world that will make this work. Lack of sleep is eroding my mind. Tom falling away erodes it harder, right back to the cliff. The pattern is this. In the mornings at six when Ev wakes me, his brain starts applying its conflicting and irrational desires before mine has connected up my eyes. Waking is always a violent act. Until we are stabilised, this volatile period can be of any length and takes the form of a hazardous surge that builds, ebbs and flows but is shot through too with charmed clear stretches, through breakfast and on towards the magic hour between eight and nine when I have to ge
t him out the door. This is the pattern unless something might happen to intervene, a small thing in itself maybe, a refusal, slowness, a silly thing that any three-year-old might do. And suddenly everything goes up. Wham. Explosion.

  Today is the day I should return to work after the summer break and I am trying to get everyone ready. I don’t recall the trigger but I can remember what follows because I watch it like a film, as if it is happening to someone else. I am beside myself. Melodrama doesn’t cover it. I am unstoppable. I make a rasping, eerie sad noise that pains the back of my throat. I throw shoes downstairs, hurl Ev’s clothes around, snap his toothbrush in half. The muscles of my face, legs and arms contract and my body seems to shrink by inches. I rush first outside in a mock leaving-the-house, slam the door, then charge right back in again to lie quivering on the bed upstairs. I cannot control my legs. I hear Ev howling in despair at the broken toothbrush. Mend it, you broke it, mend it, Mummy, with tape. I grip him and force his shoes on. I want to hurt him, I swear I do. I curse and beg and pray. It is ten to nine. It is not his fault. Nothing is his fault. Nothing is anyone’s fault. What a pity. No one is to blame. Ev is not dressed. He has just got up yet his face is streaked with tears like a child’s face at day’s end. Tom has not got up. I must do Tom’s insulin, test his blood sugar, make sure he has the rest of his pills, his breakfast, his probiotic drink, write instructions for the friend who is coming to sit with him while I am out, write instructions for the carers, get Ev to nursery, get myself to the chemist to sort out a wrong prescription, drive to work – can I drive? That’s the start. Then when I am there, I must pay attention to what others say for six hours, come home, make supper and take us all up to north London on the first leg of a weekend away.