That was nearly two years ago. In the middle of the night, I had been woken by Tom having a violent fit and in its aftermath the green and yellow hard body of the ambulance taking him away was like a tropical insect vanishing into darkness as if it had never been there, as if Tom was not in it. The night folded in like black dough behind. Ev and I followed in the car with the first response nurse. Her steady neutral chatter – cut-backs to the emergency system, the role of the first response team – was enough to carry the silence yet give me an entry should I want to talk. Am I on holiday? What a beautiful child. What work do I do? I remember Ev’s sleeping face glowing as we drove out of the woods and into the town, by car-light, then street-light, then day-light; red, white, yellow, orange, blue.
All the next day we hung around the dead end hospital. Ev was in animal mode, breastfeeding madly, a hot weight hanging on my neck. I thought my milk should have turned but it remained sweet. It was a bank holiday and the hospital was not shut down but one level up from that; wholly downgraded. All day I watched as Tom slept and woke and slept and on each waking became more fluent and more himself. I saw his mind going to work. It was a visible act of summoning, consciousness forming itself into a shape. And then when he asked for his laptop, I saw too his writing creeping out like a file of ants as he typed all the wrong words.
But over the day it got better and better, language, writing, better and better. I felt oddly like we had had luck, as if some giant, mysterious thing had been avoided, though I had no evidence for this. The doctors wondered if it had been a minor stroke. A CAT scan gave no clear conclusion. When there was nothing more to be learned, Ev and me went back to the house to wait. The evening had turned so pale and gold it was near transparent and after I put Ev to bed, I stood for a long time looking towards the far edge of the cornfield until just as the sky blooded from rose to red, my phone rang. It was Tom: back and fully present in his own voice, cheering and comforting me.
How do we recognise another person? At its most basic, by shape, by colour, by outline, by dark and light, by smell. Or by nuances of tone, by the way the face looks in repose, the cadences of the voice, full of small interior knowledge, the way they hold their mouth while listening, or the way their gaze holds yours. By what their eyes say when they are not speaking.
That day had ended in the same warm darkness. Finally he was allowed to leave and he came home very late, exactly as himself, but glittering, talking fast and full, full of joy, exhausted and energised and moving lightly on the balls of his feet. His eyes seemed newly membraned. Something had happened. An event.
We have not set foot in the cottage since then and this can’t be explained in terms of superstition. We are not inclined to that. It’s more that a faint audio wave, a clang of hurt, attaches to it like a far-off bell. Now we have four days to spend here and the schema we make is for sleep, beach walks and long evenings. We are a high risk, it is acknowledged. Anything may happen to us at any time. Time expands in chaotic, unforeseen ways. We seem to have a lot of it at our disposal although of course in terms of numbered days and years we have less. These days are no exception.
Reprise. Tom is doing the early shift, to let me lie in, when he has a serious seizure. For the second time we call an ambulance. He comes round with five of us standing over him like giants. The ceiling is too low to accommodate an emergency: the tall paramedics and their equipment crowd again under the beams of the cottage. We eye him carefully. He eyes us back. Yes. OK. Good. He is returning.
Ever so slowly we inch back on to the barely functioning platform that is our life. Our friends are stoic, but ashen. Fit witnessing is a hard business. My heart flutters. Maybe it is I who will die.
Cancer scarcely allows you time to look at it, let alone get used to it. Tom’s is a high-speed disease with full, motorway pile-up repercussions. It does not pause to allow you to admire the view from anywhere. How many times do I think, Now we are really in trouble. Well, on this page I say it again. Now, we are really in trouble. And this time I mean it more than all the previous times. But there will surely be another time when I will mean it more still and this time will seem as nothing. This time will seem manageable or benign in retrospect. We may look back on it and laugh, though I suspect we will not find quite the right vantage point to do that.
Back at home I am ranting. We need another strategy. This one isn’t working. Maintaining the thinnest facade of a functioning family that tries to act as others do – plan ahead, drive somewhere, go on holiday, relax – is beyond us. We are smashed. Insecurity jams the gears on every action. Each time we are toppled. I feel a fool over and over again for trying. Easier please to abandon the pretence. Easier surely, to stop. Stop and not try.
In the middle of my outburst Tom interrupts me. I am frightened. What? I have not heard this before. He is my balance, my bar, the surface on which I put my feet, the edge I trace my hands around so I can see where I am going even in the dark. I am frightened, he says. He is right to be so. I repeat and repeat. I am here. We are here. I am here. We are home.
Ev goes to the cousins for the weekend, where he is absorbed into a five-headed child-organism. He will make a pair with the youngest and play with the train track or in the garden, with trucks, earth and dirt. We have two days when we can sleep in, to nine, ten, twelve and beyond, perhaps to nine again.
When he comes home he tries out his new phrase. I’m sad about Dad. This is Ev’s gambit. Why is he ill? He asks, Is it because he has flootens? He roars with laughter.
2.10
We almost miss it. The doors are closing. We throw ourselves on to seats opposite each other on the Tube. Around us the carriage is assembling at the last minute ready to move off. People eat, read the papers, fuss with bags and scuff their feet. They shift and re-settle. No one notices us.
Tom looks across at me, placed fresh in front for his inspection. He sees how I have landed, occupying one seat and part of the neighbouring one in a sideways slouch, my legs tucked wilfully into themselves. He sees my coat with the black collar sticking up lopsided, buttons undone. The threads in the weave of the coat look dark, near black, but are really green. He bought it for me in Paris and we didn’t notice the refinement until I got it home. My hair is thick and blunt, unbrushed. I know this because I am reflected in the window behind him.
Through familiarity my face must be hard to see. That’s what I find with his. If you were to meet him, you would not think that such a lot was going on. He has a dark brown beard, flecked with white. A moustache balances out the beard that would look Amish or insane without it. Thick bushy eyebrows gone into old man hair sit above very blue eyes. When we met it was the eyes that were the main draw. He looks well for a man on toxins. His weight is too high but his skin is healthy and his hair chemo-curly. More strangely, I look well. I am in a phase – there are only ever phases in sequenced strings – where stress causes me to produce handsome chemicals like expensive scent. It is a natural collagen. I have fuller, thicker hair and my legs are browning from afternoons at the paddling pool with Ev.
I cannot describe myself in words. My face is thinner. I have lost weight of course. Dark crescents of bruised skin start in the corner of my eyes and curve under the bottom lid. I have had these for as long as I can remember but now they are heraldic. Sleep deprivation, from Ev’s early waking and Tom’s narcotic disorders, is at an all-time high. I pay both more and less attention to myself. Less attention to how I feel, as in my own needs, as they are sometimes called. These are beyond analysis. But I pay a bit more attention to how I look, as if attending to the surface will hold it all temporarily together or at least give me that valuable ounce more traction and spring, like a runner trying out a new shoe to gain a couple of seconds over the track.
We exist as much as the other bodies in the carriage exist. No one would know any different. It is a caprice, a slight. Death’s jest. We appear to be willed creatures, like them on the way to somewhere, heads down and busy with all our choices:
where to live, what to eat, how to dress, who to love, what to think, what to desire. We are on our way to see the neurologist. This is mad, Tom says. I nod. Mute.
2.11
My job is threefold.
1. Not to let Tom be destroyed before his death but to help him live it fully in his own way with all his power.
2. Not to let Ev be destroyed by Tom’s death but to help him live it fully in his own way with all his power.
3. Not to let myself be destroyed. See 1 and 2.
That’s it.
I am an over-achiever. I will do anything and everything and all. Why am I so competitive? Must I do even this thing well? This is a time of sureness. Even now we are happy. Yet if I still cannot call myself unhappy what does that mean? That I am enjoying myself? Is it so ingrained in me that to live is to be happy that I must spin the story of a death, a blinding, catastrophic death in the middle of my life, if not to my advantage – beyond me – then not precisely to my disadvantage? The stakes are stratospheric. My thoughts are ragged as pre-formed clouds. The air is so thin it lightens my head. To die is the whole of the work. Yet to survive is identical with it. Survival means survival for all of us, in such diverse ways as we may.
The project is not to go down. It is all or none. One down. All down. Tom, being dead, will survive for us. His memory, his words and his work spreading outwards will shade the things we have and colour the things we will have in the future. For Ev and me, surviving means not being annihilated by his absence. Not being destroyed by the manner of it. There is nothing here to be angry about. It is fantastical. It is all to play for.
The template of self-image I adhere to is that of a happy person. Is this different from being happy? I have no idea. Before the crisis, the bad sank down somewhere I couldn’t reach or was too lazy to get to, and the good floated up as flotsam near the surface. I was usually near the surface too, sometimes impressively active and sometimes just bobbing and lolling, lolling and rolling, the one a front for the other. Bad and Good are weakened words now, blanched of force. Language is failing me too.
Optimism is an under-researched attribute. Where’s the science? Where’s the research? What do our brother creatures – the owls, crabs, bonobos – think about the bright side? What do optimists do under pressure? Do they continue to seek out slivers of silver the size of fingernails in the crushed, smashed and folded lining of the earth? Optimism doesn’t seem to be something you can just adopt. Equally, I can’t be rid of it, even in mid-fall. It can seem so much the wrong response, inappropriate, like an embarrassing social tic. I don’t mean I have optimism about our outcome. I know the outcome. I don’t even mean that I think it will be easy. We may be spared in some way, we may, we may not. And yet … I know us.
I am a blessings counter. I am and always was. My family gifted me balance and ballast. By upbringing and temperament it was just one of those things that came with me. I link it to the most rudimentary physical sense of being-in-the-world: sun on skin, smell, particular light, that sort of stuff, and that in turn connects to the articulation of the stretch between being an individual – myself – and non-individuated matter. I have always been able to think of myself as matter: one and many, all-solipsist and nothing at all. Not anything.
As a teen I was a megalomaniac and part-time visionary. We lived for a while in a small Scottish town and often I would stand after school on the hill behind our house, The Vertish, it was called, and look down at the town without being in any way attentive to its detail – slate roofs, the ragged line of lights climbing the hill, the dark cut of the river – I knew all that. But more I was feeling its topography, its volume and weight, rills and falls. I could see how the place inhabited three dimensions on the land and how the shape of the land fixed it under the blackening sky. I could see the things that had been built and the things that couldn’t be described exactly as made but more had adjusted themselves over time to what was there already: growths, outcrops, promontories. And from my vantage I could view the place, me the viewer, and everything in it from all angles at once: from my side of the valley and the other, from above, from the neck of the town, down its flank and from its pit.
It would be years before I saw a 3D simulation. This was something of the same experience though fundamentally different in that it wasn’t a constructed reality, one that had to be imagined piece by piece to be achieved, but a purely felt sight. I understood it without effort or strain. I could do this because all the matter in the visual field, myself included, was undifferentiated, part of the same stuff. To see was to be. Viewed like this, the visual, even when applied to a small Scottish border town as remote, hermetic and unpromising as this one, was a complex, wild and extravagant place. Spatial sense was magic sense. Still is. As I said, I was a megalomaniac but I didn’t really know the word.
But I speak too soon. The question of happiness is previous. Tom is still here. We cannot escape being here until we do and we will not comprehend not being here when we are not. It is endemic. Back then on the hill, my imagination was not constrained. Now I am dumb as to what happens after.
Tom is in the bedroom. He is finding a book for me. Opening it to mark a poem. It is one of many that he once knew by heart and cannot now speak: Empson, Larkin, Beddoes, Heaney, Hill. He knows where everything is on the shelf. He cannot read books exactly but he knows them. He has wit and capacity to look them up and he does it with purpose and for me.
Here he is now at the fridge, scanning it for something to eat. There’s a casual intelligence in what he does: seeks out old lettuce to throw away, pushes back the eggs, shuffles the milk, makes a bit of space, hunts down snacks. And outside, I see only his back this time as he walks away from me with Eric, their heads bent together in talk. He can still arrange words like blocks to create a connection. A word is a thing in the head. Well this one here is a knife. This one a sock tucked in on itself. This is the book you were looking for. This is the word home. With these he can build a new thing to be said and responded to.
Maybe all that can be spoken by me at this time is not about happiness or unhappiness, or optimism or competition, but just that we are all still here. To be still here is all there is. This page marks our presence. In the light of that fact either I do not despair or I suppress despair, I cannot tell which. Plenty of time to work that out later.
2.12
In Wrocław the air was animal, vegetable and mineral, not like any air I had ever breathed. It was heavily polluted. The colours of a winter evening were coal and smoke and iron and fire. Darkness drew a soft hood over the head. On Christmas Eve, live carp swam out their last hours in baths set in the street in preparation for the evening feast. The next day the Ceauçescus were butchered on my small black and white television. And on the last day of 1989 I went to Berlin along with everyone else for the great party following the destruction of the wall.
I lived in Wrocław for nine months on a scholarship at the Art School and learned Polish fast. My father speaks many languages and I am good at that sort of thing so it was easy but the speed of it was considered on the ground as some kind of local phenomenon. Unlike my father, my language included many swear words merrily acquired in a scattershot way without benefit of context or etiquette. What was passable for a man to say was not in order for a lady. Swearing on all the intimacies of the body is mainstream Polish man-talk. One day my friend Marek, himself a handy swearer, had had enough. He rebuked me in a whisper, Jak brzidki mówisz – How dirty you talk. I cleaned up.
In bed at night I think of other languages. Polish, Dutch from Amsterdam, bad Italian from Rome. One can be simply other by taking on alternative structures and sounds. You can learn to float in water. You can learn buoyancy through language: liberation from syntax and meaning. In Poland at that time inflation was rocketing each day and necessity was the driver as I haggled over tomatoes or tried to buy wet chunks of biały ser. I had to find words to stop the dinner lady in the canteen putting gravy on my potatoes. Why I was a
vegetarian in Poland I can’t remember. But those were local skirmishes. I could trade on novelty and be a more forward version of myself. I didn’t wait to learn a word before trying it but tried it on first hearing and if it didn’t work, well, there was no loss. Tomorrow I would try again to buy tomatoes and today onions on black bread with salt would do. Words as guesswork, play, as joint enterprise, as joke, as game. This is all useful to me now.
What else is there apart from language? Let me list: music, touch, the great inter-cosmos of the eyes, running and jumping, sex, cooking, friendship, eating. There must be other things but I have come to a stop. It’s a short list. We will devise another language and in it we will talk.
We discuss strategies. One is to verbally go for broke. Tom could learn to accept a percentage of nonsense in the interests of volubility in a sort of trade, not waiting to get things right but crashing in, usurping the speech habits of a lifetime. He has noticed that he can sometimes get more done by taking a jump at language, not going so much for style. It is the automatic bits that are the problem. It might have diminishing returns but it is a way. This will be hard for him. It is a Blurters’ manifesto. To be truly comprehensible, everything he says has to be thought out first. He must think very hard before he speaks. We, who do not think before we speak, speak, and the thought is there, full-spake, articulate. It sits like a jelly on a plate before us. This morning Ev is making nonsense noises in our bed. Does Dad need pills because he gets his words muddled? Yes. Is that you trying to muddle your words, Ev? No. I am making bubble noises.
The Iceberg Page 11