Martin the Occupational Therapist arrives. We are impressed by him on all fronts: demeanour, body language, sense of humour and general rapport. His questions are about walking, comprehension, eating, talking, swallowing, clothes dressing, going to the toilet, fine motor skills and the exact nature of Tom’s writing and how he goes about it. He wants a lot of detail. Hearing Tom’s day anatomised makes me think of Richard Scarry’s Best Word Book Ever, a great favourite with Ev and formerly of mine, particularly the double page outlining bear’s dressing and breakfasting, with all the American ritual objects of the morning: pants, slippers, toothbrush, milk, maple syrup, waffles, cheerfully pictured and spelt out. If there were a question of re-learning, this book would be a useful aid. But there is no question of re-learning. This is not a rehabilitation story.
Rit. Ritard. Ritardando. The waning of Tom’s ability to climb the stairs is not sequential but like a single protracted event unfolding over time. The stairs to the bedrooms on the top floor are irregular and steep. I gauge by ear the long and longer pauses between footfalls. The structure of the house, its joists and the creak of the wooden treads record and amplify the effort. How many months have I been listening in this way? I hear it most clearly when Tom comes up after me as I lie in bed and I know that if Ev is awake, he hears it too. My heart thumps. It is fat. My head fills with blood. I am an animal that knows its own end and is poised, ready to jump. Will he make it? The heart pushes against the chest wall and at the turn of the stair at the top, the last step the hardest, relaxes again. He always makes it. He does not fall. Only when of his own volition he decides to stop trying, only when that day comes, do we make a bed for him on the floor below. If I can interpret the slowness of this passage on the stairs then Ev can do it too. I never underestimate Ev’s intelligence. If I do, I am always proved wrong.
Martin is part of the external team bringing handrails, bath seats and bed raisers into our lives. He works closely with Tom to find ways of putting the wayward physical strength of his body to best use. On our bed Martin models for Tom the standard technique for getting out of bed without undue strain. Tom tries this but cannot do it at all and thinks it is very funny. He then shows Martin his own improvised method for getting up. The starting posture is lying down on his back with legs bent, hands clasped tightly together as if on a rock-face, hanging on to an imaginary rope for dear life and then a great rocking haul see-sawing along the spine that sends him by will and momentum up into a sitting position. I have seen this many mornings past. It is so counter-intuitive that Martin has not seen anything like it and he tries it himself but cannot do it for laughing. Then I try. They are both laughing. In a sun-shower of dust motes we repeat our absurd rehearsal. Action 1. Getting out of bed.
That our house is not a bungalow but a maisonette on three floors with a total of three staircases containing thirty-eight steps from top landing to pavement outside is what you might call a bad hand. When we bought it we had the fancy that the top floor with the study and half the books was for Tom. The middle one with the kitchen, living room and three sofas was mine. The draughty hall below containing the rest of the books was where Ev would live quietly with his toys. Three people in harmony: one on each floor. In reality Ev has the top, middle and the bottom and we live around his rim.
Tom is speaking well today even though it is 2 p.m., generally his worst time. He is enjoying Martin’s company and his line of questions and appreciates the fact that they travel readily further than the subject. Martin does the physical too. I have watched this many times. Push against my hand, hard as you can. Pull my arms towards you. Can you touch your nose and then my finger? Good. Good. Touch each finger in sequence with your thumb. Can you screw up your eyes tight? Good. Great. One day, I think. One day you may not be able to touch the finger with your finger and it will hover blankly in the air or you will miss your own nose on the return. I may witness this but I hope I do not.
In homemade parallel with Martin and the actions of Social Services we put our faith in the ingenuity of friends for the intimate workings of our life. Our home is being adapted headlong without pause for assessment or breath. We have rails and grips dotted around the house courtesy of the Social, but Health and Safety is their charter and Tom is finding the step and turn from the landing into the bedroom resistant. It is bitter. He has not the pull in his arms to draw up his body nor the traction in his thigh to make the stair. We need a handle on the bedroom door and the door must be fixed back to take his weight. This is too complex for the State. We move at speeds faster than it can think. So John brings his toolbox over to research this and other domestic snags – the top of the stairs, the three steps in the hall, the height of the bed. Tom and John investigate each point of flash and fail and at each one John installs a handle or a block fixed rock-solid as an abseil anchor by a seasoned mountaineer. All of these hurdles need addressing as soon as they arise. Action 2. Entering the bedroom. It is imperative, simply the practice of living. Otherwise we will fall. We do not say, John and I, though we know, that these solutions are transient as the days of the week. The fixing is in opposition to the ephemerality of the problem. The problem will worsen and soon. The solution is its own redundancy. The solidity of the fixing is the entire rebuke to this fact.
And so the days go; single, horizontal days, each a sheet of picture glass. It is possible to work for a fortnight on a solution that is used once. Or for a week on a clever piece of ingenuity that becomes unviable three days before it is implemented. We live in hyper-inflation. Our efforts double one day, and again the next. As all work is folly, we just work harder. On the phone I price up stair lifts. Tom is keen. A lift would help him a great deal. But it would help him now, today, on this climb of the stair. I can hazard nothing about what will help him in three months by the time it is installed.
Ever so lightly we are balanced and the balance holds as long as we look neither forward nor back. The fulcrum is the world. And right into these precarious days, upheld by an ad-hoc army of logistical support, comes the implementation of the Social Services care package. To an observer our situation must look perilous. Now it tips into catastrophe. I see it coming but I sleepwalk towards this intervention. The argument as given to me is circular, meaningless, a tautology. Something must be done/I have no other solution/You need help/This is not a solution/Something must be done …
Tom is assigned carers. They come for half an hour, three times a day, three days a week and a key safe is added to our porch so that strangers can let themselves in. I work hard to keep Ev out of it. I know it won’t be pretty. Even on paper the plan looks unworkable and I book them in for days when Ev is at nursery. The carers are not uniformly bad but they are not uniformly anything and they multiply exponentially the things I have to fear. In thirty-minute clocked slots we must get to know them and they us. If all the clients were fish, we might be fed and have our tanks cleaned out in this time. There is no investment within the schedule in learning Tom’s needs. The system allows no time. On the care schedule we are compressed by paper jargon to the point of idiocy. The list is an arbitrary work of directives. Point 13. Settle the client in front of the television. It is fiction.
Some of the carers I warm to as much as I can, Claire, Barbara, Yusuf, but I never know when they will come again. Insecurity fuels the system. I cannot attest to their characters or trust when they will arrive, or if they will arrive at all. The only uniformity is in the paucity of their training and remit. The stated aim of the care package is to take the pressure off me and allow me the freedom to leave the house. Instead I must entrench. I am the last line of defence.
After the second week I am preparing to cancel. I cannot bear it. This is the thing that will destroy us. Through these two years, our autonomy has been a closely loved and guarded miracle. We have not been damaged. We are impregnable still. Now, the heart of who we are is under attack. Cancer has not managed to do this. This is going to be done by people. One of the carers talks to Tom loudly as
if he is senile. One wakes him, ignoring the poster-sized note I leave on the door asking her please not to. One does not know his name. One bangs the door hard downstairs on her way out. The lock is capricious. She does not look behind her and leaves the door standing open to the street.
I am upstairs, but a while later I come down to get something. The hall is splashy with light and a fine breeze refreshes my face. Autumn soaks the street and shadows of leaves invade the mat. All is abundant. To every problem we think of a way forward but the unforeseen is increasing steadily in its mass. Now I see it in plain sight. If I had not been here anyone could have come in. Tom would have been alone. We are breached. Something has entered. I am weightless and without hunger. All our vulnerability swoops into the hall, filling it, squeezing me out. The air flickers, alive with its spirit presence. Sunlight licks the walls and laps over the floor towards my bare feet. At our door is the world’s brim. We are wide open. There is nothing between us and nothing.
The next morning, when I wake, I see lights at the far corner of my eyes. White, warning flashes I cannot control are exploding on the edges of my vision.
2.19
We go to the community garden but without Tom. A little pattern is emerging. It is clear how it goes. People come to see him, spend time with him and then at some point signal that they want to scurry off with me for a private talk about his condition. He cannot, as they say, give them much change for their money at the moment. He is just too tired. I had better get used to this, though it is new and it feels like a fresh betrayal. I am becoming Tom’s mouth. Without being Tom’s brain I am clearly a fraud, and people who try to come to him through me are bound to be disappointed.
The community garden was once the nursery for the old house that sits at the high point of the park. It is still partially surrounded by the original brick wall, some 20m high, and the bones of all that was there, the cold frames, greenhouses, paths and orchard, have been picked over and reconstituted by the volunteers who have maintained it for the last two decades in a testament to altruism and anarchy, long-term common interests, mistakes left to lie and a multitude of digging hands. It is accurately named and a crowded knowledge of horticulture is visible all around, coupled with an unplanned waywardness, the plants a bohemian set, all thick with each other.
On the outside the park grass slopes away stubby as clipped straw, but the municipal parch stops neatly at the gate and the earth within the garden is madly verdant, fuelled by three small hills of high-grade mulch near the entrance in order of increasing potency and slippage. This afternoon the sky is slate, heavy with rain. Its tone pre-sets all the colours within the walls to full saturation. Giant ricin sprouts wine-red and black behind the beans. Every angle is askance, every path wobbles and edges are demarcated with tile, pot, brick, pebble, shell, wood, whatever, with no pattern ever repeated, no line continuous with another. Signs are written in wetted marker pen. CRAFTS it says, upside down. Cucumber tendrils spiral freehand through the roof space of the greenhouse. Yellow courgette flowers and gourds of a dayglo hue thrive on wet bales of hay sunk into pits and the growing of peppers, maize and chillies of many varieties and strengths is a local pride. I wonder that I have not spent more time here. It is spectacular. The orchard has old pear, medlar, quince, apple and other fruits we cannot name though my friends have more knowledge than I. In a magic realist enclave, a travelling camp of runner beans twists up to bind the tree canopy above to the ground below, their lines fretted by strings of silver can lids. The late, humid air is spiked with herbs brushed and mashed by the day’s visitors. We sit on planks by the pond in the wild seed section, planted tight like everything else and fully wild to a dimension of 2 square metres. All is arranged like crazy paving; the yellow, the red, the bark, the tile, the brick, the black, the pot, the plank, and I look at it in a kind of blankness, barely present in body but really I am taking in all of it in detail as if to memorise it for another.
There is seeing and there is telling and what is one without the other? In a marriage of near ten years and a friendship of longer, all visual experience is for two. To see something is to store it up even as it is happening, as potential news, not even news, sub-news, to be retold, embellished, filtered or censored and described to another. The other. This is not conscious but directly continuous with experience so it is light work; banal, beautiful, boring, it makes no matter. We both do it. It is the story of what we see and do when we are apart from each other gifted back in fragments. I assume others do it too. Not immediately but maybe much later, something will emerge and be presented with no great authority, like the gift of a nut, or a crisp, a small twist of paper, a bit of wool, perfect for the time and recipient. These low gifts are indiscriminate, you can never have too many of them. He will like this. They don’t hold the status of gossip or anything particularly interesting but are just a bit of the world in the right ear.
Choose your moment. I saw this in the community garden. The world experienced is the world described. This retelling in turn is such an intimate pleasure and so deep in the muscle of seeing and following on from that, of being. Soon, sometime soon I will have no one to tell this to. What will experience be then?
2.20
I notice that we haven’t talked for a while. How long? An hour? It may be normal. Sometimes you just don’t.
There are general issues of talking and beyond that there is the Talking Issue, meaning talking about what is going on, articulating the disaster that coagulates around us. Tom promised a while back to begin a conversation with Ev and he has not done this. I try to give him a chance. It is not my place to pre-empt with explanations but perhaps he cannot and will not ever, so I must. He is stumbling over the pronunciation of bedtime stories. Get into your teeth, he says to Ev, meaning Get into your bed. I feel that Ev needs to start being given a version of our narrative that he can make sense of himself: a nuanced, acclimatising story with a ready line to follow. How that story goes and what it sounds like I am not sure but it won’t be like the ones in his books. There will be no happy end, no moral neatness, no rhyme. Pictures aplenty though. We make images all the time. I take the photographs. Ev lying on Tom’s fat stomach, Ev spooning in cereal while Tom drinks a slow tea. Us three idling down the road as usual. I feel that two adults must be intelligent enough and brave enough to come up with something here, some version of a story to help Ev negotiate it. So far I am wrong.
I realise that I am still imagining a canny way by which we will manage when Tom can no longer communicate. That some sub-route will open up to bypass all language, spoken and written, and allow us still to converse. How will this go? Does a raised eyebrow conform to a conversation? What will be the modes available? Touch, sight, laughter, will there be any of that? We expect a great deal of each other. The tools we have are steadily depreciating. We must use these poor, truncated tools or create new ones from scratch.
Silences hold more pressure. It is simply more difficult to form and find words. We have had a weekend of heavy socialising and I watch Tom all eager, talking in a mix of fluid, lucid, stalled and jumbled speech. When he is with me he needs to recuperate from the effort and this can mean he is quiet and I don’t get spoken to. I understand the toll of each conversation but I am jealous. The oddest word-slips emerge. Logs becomes otters. Ev went round the park treading on the otters. I notice that I too muddle words and things come out wrong. This is an empathetic response, automatic, like my not so appealing habit of faintly echoing the accent of the person I am speaking to.
Since the second operation and considerably over the last days he has become more introspective. There are wider silences. We are slower together. When he is with me I feel his absence. I say this but cannot calibrate it. I don’t have the statistics. Is this person quieter than they were yesterday? Is he starting conversations or is it always me who begins? Is he spending more time by himself? How long is it since he spoke? Is there anything to say?
This is impossible. I am tuning myself t
o detect quietness, to monitor changes in sub-patterns and catch the point when silence starts. I am alive to change yet I am nowhere near a sensitive enough instrument to record it. I have empirical evidence but cannot interpret the data. How to separate companionable silence from withdrawal? What if it is just not necessary to add anything more? He and his brain are one. That means that he and the cancer in his brain are one, having lived together for nearly two years. They know each other well. My watchfulness is as much about me as about him. I am angry. How dare he vanish from my side. In order to support him I must have something in return and companionship is the whole of my demand. I see the idiocy of it. But this new silence feels cruel and personal. It is a further blow. It takes me a couple of days, a little time, just a little, to allow the thought that introspection, aloneness, set-apartness, might be in order after brain surgery. To be quiet in the privacy of one’s own head, surely this is a good thing.
I have a text draft permanently on my phone. All ok? x, it says. I use it hourly when apart from him. The reply comes, x, or Yes. All the time around the house although I try to limit my vigilance, whenever I see him sitting or gazing out the window I catch myself asking, Are you all right, sweet? I do this until I realise there is something important I have forgotten. This is what he most liked to do anyway. Thinking. Repose. Regeneration. He wrote an article on it once after Pascal. It was called In praise of sitting quietly in my room. I am thinking. He says, I am just thinking. I must let him be. I must just let the man be.
The Iceberg Page 14