So at the weekend, the day before our second entry into hospital for brain surgery, we have a party to celebrate the third birthday of Ev. Seven little children are invited and two dozen adults. It is a gorgeous day. Tom in the garden prepares the games. He paints a solid stumpy donkey on a bit of board for Pin the Tail and stuffs a sock for Splat the Rat. In the kitchen the table is laid with food: sausages, chicken, hummus, Hula Hoops, carrot, apple juice, pots of wine. The birthday cake is Ev’s choice, tiers of cream and strawberries. It is a very good party. Pass the Parcel goes to the tune from The Dambusters. Ev sleeps through the manic preparations in his buggy and rises fresh to the event with the arrival of the first guests as is his due. Sharing is ordained. Snatching, biting and pinching are proscribed. Tears are limited. It is all quite simple. Everyone is very happy. The birthday is maximal. It could not have been otherwise.
2.3
Tuesday 13 April brings a wound, a river and a mistake: all the hallmarks of tarot casting or bad omen. Early on I realise that things are going against me. By 8 a.m. I have crossed the river twice already, to the hospital once for a kiss, then south again to deal with Ev. In the material traffic across different registers and scales of importance, the smaller details – the child, the hospital, the logistics of the city – collide with the major ones: the operation is at eight and I am afraid.
Ev is sent away. Over and over I deliver him into the arms of others. That he is the child he is allows me to do this without pause. But something is wrong above the conscious anxiety I am feeling, a kind of rigidity, a meta-ache I cannot place. It must be mine, for where else could it exist that I might feel it, but it seems separate, extending outside me like a zone apart. Waiting for Ev to go, I count the seconds until I can stop being his mother. Poor Ev. He is not fooled. What mother wears dark glasses indoors and does not kiss goodbye? As soon as he is gone I break like a dry stick. I am shaking violently, not myself. I recognise the high, repeated wailing to be my own voice but it too seems separate. It ascends, breaks, squeaks, mutes. It is pitiful. But I have done this before, this operation. I should be OK. I have done this before.
My friend is with me and she does not leave my side. She feeds me sugar in tea and fat and salt in bacon and butter but I am overrun. Demons swarm at my head and in my ears. I have no fight left and give in to their idiot murmuring. They whisper that he will die. They say that I will lose him.
The Thames lies between us. It marks the divide between home and hospital and in the course of the day I cross it six times from south to north and north to south as if under compulsion. Miscommunication and incoherence drive the action of the day forward. The silver river is our test and task. I notice it afresh each time and it hurts me afresh each time. The water is serpentine, obscenely bright under the sun, and pressed along its bank, the geometric solids of the City: domes, towers, blocks, spires and wheel refract light in sentinel beams that send codes up into the sky. What do they say? They say he will die. They say today is our last day.
At the hospital we wait. Where I don’t know but it is hours – two? More? Then I get a message that Tom is still in theatre. This makes no sense. Craniotomy Number Two is simple brain surgery. It is a straightforward procedure and he should have been out well before now. We do not know what to do or what to think but moving is a surrogate for doing and thinking so we get in a taxi and head for home. I call friends around me in advance of disaster. My finger pokes at their numbers but I don’t know what it is I am asking. To hear my voice, to be near, prepare. What if he dies? I am not ready.
Then, nearing home, we get another call. No, in fact he got out some time ago. He is doing well. He has asked me to call him. He is waiting for me. The first message was only wrong. It was simply a mistake and no significance should be attached to it. Back we go in convulsion, back across the river.
All the time, in cars and corridors, I cannot stop shaking. I am wrapped in coats but there is not warmth enough in the sun. The sequence of the day is irrational. There is nowhere to go. The waiting room has nowhere to wait and the only place I need to be is lying down. Each hour elongates beyond use, yet each is so dense I can’t understand how we move only one digit on at a time. At some point, I don’t know when, before or after what, we are in the families’ room. It is a tiny galley space filled with women from an extended Asian family. Their relative is in trouble and they do not believe he will live. They unwrap great oblongs of sandwiches in silver foil and settle down.
Another time, I lie for an hour in a friend’s bed high above the street. Why is it so quiet? The cars funnelling at ground level seem to lose their force and by the time it reaches the fourth floor the noise is aerated. Silence damps the rowdy demons at last. I am struck with love for her bed. I do not pay my bed any attention and it returns the lack. Mine is the bed of a married person, stained with tea and child-wee. Hers is white and comely, with pillows and bolsters and proud and proper stuffing. It seeks to hold me and I long to rest but something is wrong. Anxiety seeps like a chemical stain on to her sheets. Am I hallucinating? I check the bed over and over for brown fluid. Why can’t I see it? But it seems I do sleep for fragments of an intermittent hour and when I wake, my phone is ringing. I can go and see him.
Out of the voodoo chronicle of the day the real story shapes itself slowly. It has been nothing like what I have experienced but another sort of time entirely. My terrors have been of the river and the swamp: airborne and infectious, not grounded. My day is a neurotic parallel of Tom’s. In the real world, everything has been efficient and routine. All has been done hygienically well. The schedule has gone to plan. The news is practical, robust, good-hearted and standard. It might be written in bold red pen on a whiteboard. That Tom is well. The operation has been good. The tumour has been debulked. Next to his name would be a box drawn with a smiley face.
In the late afternoon somewhere towards the end of the long sequence, I find him in the Recovery Room and when I do he is wholly himself, sitting up in the ward, wildly impatient and raging to talk. Where have you been? His head has a comedy bandage. He is lucid, happy, bored and ready to go. I have no idea at all how to communicate what has just happened or how to correlate it with his new-minted face or the tumbling words that signal the continuing presence of his Own True Brain. I am speechless, ecstatic, stupefied and ground to dust. My mouth opens and shuts on the hinge of my jaw. I taste metal on my tongue. Where have I been?
After the whole twelve hours is done, leaving only its rock-hard, raw, salt trail on me that I won’t shake off for weeks, friends bring me home to bed to shiver under piles of blankets. Ev comes back very late. This is the last episode. I have a virus and he has it too. He vomits on the bedroom carpet beside me.
2.4
13 April 2010
Dear Friends
The operation went well. Tom is sitting up, talking, eating, reading. He looks extremely good. All praise to the surgeon.
With love
In a bold pre-emptive move the volcano Eyjafjallajökull erupts into the air and from this catalyst many things follow. Across much of northern Europe people stop flying. Not in mid-air, though you might think this from the commotion. They remain afar, wherever they happen to be, and as the days pass clamour ever louder to be brought home. The volcano cannot be appeased so they turn their fire on systems and institutions. Marriages are missed, reconciliations delayed, families already stressed are strained further. Inconvenience is the sorriest disaster.
The air above Iceland has an impossible forever-and-ever clarity. It is storybook air: sheer up and up and higher and higher. Glassiness distorts and tricks the far into seeming near, as if you could whisper to someone miles away yet never see their eyes light up to hear you. Years ago, I set out to pat the dark snout of the glacier Vatnajökull across a stubby terrain of moss, stalked and dive-bombed by gulls. After an hour of walking it remained like an illusion the same size and distance away from me. When I finally reached it, I stayed only minutes and wanted to turn
back as if I had been mistaken. I was embarrassed and pretended I hadn’t wanted to see it really. It was a dripping, moaning mass of vertical water: the abyss, beached and landlocked, an appalling creature. Blue like a sea brewing a storm, green as kelp and beyond filthy, it seemed unspeakable. Too many categories of phenomena were conflated. My brain didn’t like it.
Ev confuses ash with gas but understands about planes and is very interested in this development. We follow the unfolding northern saga on the radio from the bed. I am flattened, wiped out. For recreation I have two squares of visible window air. Both are blocked out with sky and empty so I register directly the lack of travel above my territory.
Tom is in hospital recovering well from surgery. Ev is covered in rash, not ash or gas. We are both infectious so neither he nor I can visit him.
When I phone, he sounds wildly cheerful. I hear of pies, soups, snacks and company supplied to his bed by a tag-team of friends. I am jealous. He has a small aphasic fit, witnessed expertly by Dr Matt, our neurologist friend, who neatly updates the patient’s notes in person.
The bedside of a man in hospital can be staged as comedy or drama, with both colliding at any moment. The play’s context, like sickness or wellness, is embodied in the patient. Different aspects of a narrative enter and exit, cross and meet, in combinations that may be disastrous or felicitous. Here, the mother and the father who do not speak may fetch up together or the implacable grudge-bearer might find his ancient target sitting smug among the peaches. Friends from different spheres can exchange numbers and fall in love. The unwelcome may cloud the visit. Or – no one may come at all. That must surely be the most fearful of shows.
It is now five days since the operation on Tom’s brain and he can still speak to me. Joy. The air is holding its breath. The sky is ultra-blue: no contrails, no clouds, no sound, no low-flies, no disturbances of any kind anywhere. Birds are taking over. Soon it will be all birds. It is an epic time, momentous like the medieval moon at eclipse. Rivers will run red and the harvest will lie down in the fields. Two-headed lambs will be born. For the generations who have tasted the drug of flight, this has never happened and we who are not stuck in airports or waiting for others to return to us like it very much. On it continues, the great grounding, starting on the Thursday, on through Friday, Saturday, Sunday and into the next week. All over that long, long weekend everyone is attached to the earth. I hold the ground under my feet and my physical grasp of it as near divine. This is bliss.
We live in a slowed-down part of one of the biggest, fastest cities on earth. The day has been perfect. It is nearly nine in the evening. From my bed I watch the sky’s incremental bands: dark, deep, pale, wan, white, gold, slide separate into each other. The moon is a crisp paper-cut. The air is silent but for birds. Nothing. It is wonderland. He has survived. I have survived. Ev has survived. We are not unchanged. We are scathed.
2.5
22 April 2010
Dear Friends
Tom is back home and feeling well. We are all happy to be together again.
More chemo is now expected soon. Thanks for your support. We look forward very much to seeing you.
With love
On Firle Beacon the air is opaque, impossibly fine and laced with water in sequin patterns. Spray shimmies into our mouths from every angle and we drink from source. Ahead, the path snakes into silver and the land on either side slopes away part-hid. No one else is here. It is too windy, too wet. Black-headed sheep clump around the croppy bushes and rocks. Their wool is scuffed and dirty, stuck with bracken and bits of gorse. The ground is uneven, littered with stones and the remains of cairns, and sand-coloured grasses shelter in the hollows. The wire fence that edges the path is twined with wool an exact match of the sky. Frenetic all along its length, it is alive with every gust.
Ev runs away from me shouting towards the sheep and his body veils with rain to almost nothing. Even though I know they will not charge him, I gauge the hard mask of their faces, their yellow teeth and filthy hooves against his softness. He runs directly into the sheep camp, causing them to up and lumber off a few metres distance: bored, blank, thunderous. I yell at him. Stop. Come back.
I do not think, This is the last time we will do this. It does not enter my head. The will to the future is too strong, stronger than this. Air and rain and wind whirl around us. We are at the intersection of all the energy on the high path and we take it up into our bodies. Our clothes are pearls. We are made luminous with pearls. The corners of my open mouth are wet and my voice shines against the wind as I shout in Tom’s ear. We must come here again. We will walk this way. We will come here again.
2.6
It is the twenty-first of June. We have hit the mid-point. Today the year turns on itself and begins its retreat to narrow, weak hours of daylight folded into slabs of darkness. This year the ebb has greater urgency than the flow. I can feel its pull already. Bob our neighbour comes round. Through the frosted glass in the door I see him standing sentry holding what looks like a pastel-coloured hat. It is a plate with a bowl upturned on it and underneath that an exemplary cake, made by his daughter at catering college: three tiers of cream and a neat top packing of blueberries. This is great. Holed up in our private and eventful space we are feeling abandoned and alone, so this small incursion is worth more than its weight in cake. To keep our friends by us, we need to keep them informed and when there is nothing really to tell them, we stop. Most of the time, between scans played out in intervals of three months, we are waiting to see what is going to happen and what is there to say about that? So we say nothing. But saying nothing is not the same as feeling nothing. We are very fragile and we can feel quickly forgotten. There is no way to balance these competing stresses, to make a life like ours work. Sustaining the precise amount of attention we need from the outside world evenly and forever is not something that is in my power.
Tom has some strategic aim in mind regarding the displacement of books. Since he came back from hospital he is moving the library around a lot, parking things in different places and shifting sections en bloc. I’m not quite sure why he is doing this but I suspect it is to do with solidity and the reinforcement of each category. They are like bricks. He is making our walls impermeable and hence shoring up his recall. Books make us another house again. We have 118m of shelving. I know because I built them. All of them are full. Our living space is 5 per cent smaller because of books. Shelves cover both walls in the hall, one from floor to ceiling, fill two sides of one bedroom entire and both sides of the fireplace in the living room. One side of another bedroom is books and so is the upper end wall in the light well, though this can be reached by ladder only. It is not an equal split. A ragged portion a few metres wide is mine. The rest is Tom’s. He is a bibliophile. Buying books is his habit. Reading them is his work and life.
His spatial memory remains acute and when he needs to look something up he always remembers exactly where the book is that he might need, upstairs or down, and on what shelf. More wondrous still, he can remember what quote is in what book and where it lies. Only now often it is me who reads it.
I have been unable to read since this began and it is getting worse. My eyes can’t focus, they skit across, landing on words and skimming them for meaning as if they were simply a platform for something else more important. Fiction is impossible. Why would you want to make anything up? Newspapers are nearly too difficult. I stare at the spines in the hall wondering if I should open one. Will they be of help? I have heard it said that books can help in dark times but I don’t do it. In my heart I doubt it.
The disparity between us in reading has broadened. His speech can still be very good so this is not always detectable. You might register only an undertow of disquiet, a ripple in the sense and order of things. He is back at work. It takes more time but always comes out right. But the more words slip away, the more it matters to him to know what they are, while I hardly read them at all. More precisely, I read the ones he needs to use. We are eve
r elastic. Within our stretch, what one lacks the other makes up. My lack is temporal and selective. The reason I do not read is because words are irrelevant. They become relevant when he needs them. I can see the ones he is looking for. I can help him find them. If he is chasing something, I know it. I always find it, read it back for him and he understands it perfectly. No other words exist. I have stopped using my eyes. I think with his.
Since coming home there are fresh difficulties. He has trouble saying the name of the hospital or the name of the friend who came yesterday. He calls me to the study where he is looking up something in the thesaurus. The word is disaster. They can’t have got rid of it! he says. Maddening! As he has spelled it distaster, he cannot find it. Physically there is a lot of strain. Weakness and muscle failure is starting to sting him and creep again around the joints, fingers and calves and in parts of his arms. This is steroids at their warring work. Pain seeks out the interstices where uncertain seams of deep tissue meet, a side effect from first increasing and then cutting down on steroids, but the speech trouble is a major worry. A friend asks me, with reference to our financial future or strategic thinking, if I am delaying putting any plans in place until the crisis hits. Hits? How will we know when crisis hits? It is all crisis. It is a stick of solid rock with the letters C-R-I-S-I-S all the way through. We just do not know its length.
The Iceberg Page 9