The fixed agenda of the car muffles and shushes me. Padded leather absorbs anxiety and the magic tree is a placebo. I do not need to sob in front of the instructor. I see him twice a week but I never speak of what is going on. As the snow melts I pass with a reverse arabesque that parks me so sweetly I exhale an audible hiss of delight and exchange eyes with the tester. I am a driver.
One Saturday morning about a week later I am on the road encased in my new status. I park and practise sitting in the car like others do with my chin leaning on my arm at the open window and my gaze loose and idle like a dog. The radio is on and the weak sun has sent Ev to sleep in the back. The skin on my arm is warming. A man – a bad driver – grinds his wheel against the wheel of a stationary car as he negotiates the tight-parked street. Couples curl in sync into their cars and drive off in flawless motion without signalling at all. A woman clacks past me with shopping. This is my gift to myself. I see all of it and none of them see me. I am in a car therefore I am invisible. I am at home in all the cars of my childhood. I am just like everybody else.
1.28
It is February but the future has arrived early. Tom has a severe fit in the small hours of the morning. He had gone away by himself to get some writing done in a house by the sea and was due home today. It is evening, he is back with us, lying down quietly upstairs. He can talk after a fashion, read a little but he can’t write. He is estranged from himself.
We phone each other countless times as a matter of course – this was always our habit – and so unable to reach him throughout the day I knew that something was wrong, but while waiting for him to call me, come home or do anything comprehensible, my insides turn to paste and I shit myself on the way home from nursery.
The walk from nursery is the daily setting for Ev’s grand narratives. It is the chance for his imagination to revisit afresh the cracked world of the pavement, inspect each drain, gate, pile of leaves, parked car or whatever catches his eye along the way. It lasts forever. Desperate, I clamp down on his indulgences and haul him on as he halts at pretend stoplights or level crossings and balks at kerbs as if they were cliffs. From the staff I hear that he has been ebullient and hyperbolic, ramming the other children with his body like a daft goat. Some children do this as standard but Ev does not. His behaviour has gone wonky this week with Tom away. It’s not that serious, just a shade off beam from his usual sunny engagement, but it throws me. All must love him. Everyone must be his friend. He needs them even more now than if his father were going to last forever. I am alert to every nuance of his behaviour as I understand him to be alert to every nuance of ours. If I could make a wish for him, it would be that that the pristine selfishness of childhood would wrap him in multiple layers like clingfilm, proof him and seal him up one hundred per cent. I would wish him impenetrability. I know this is not how it works. This is not a good-fairy wish. Ev is alive to the world uncensored. His interest doesn’t stop at ants or plastic dinosaurs but roams intelligently round us like a data tracker programmed throughout waking hours: noticing, registering, following, collecting, finding, piecing together and storing information. When I pick him up today, I need my daddy is the first thing that comes out of his mouth and it is a just complaint. I had told him that we would come to fetch him from nursery together. That was the plan. But Tom is somewhere in the vacant stretch between London and the south coast, past the Isle of Sheppey, on to Thanet, Kent and the sea. He is not answering the phone so I have no way of finding out where he is.
Tom at the coast and in the aftermath of the fit retains the fact that he had meant to buy seafood to bring home to us this evening. Roll-mop he can name as roll-map but the word crab escapes him. Before leaving the house where he is staying, he thinks about the idea and image of a crab for a long time. He draws a picture of it in his notebook, as if summoning its image would render the associated word. Finally, after I don’t know how long or in what order, the word either surfaces or the lack of it recedes. He arrives at crab and goes out to the stall to make the purchase. The pursuing of normality especially where it intersects with pleasure is a matter of pride. Much later he hands me the fresh, dressed crabmeat, brown and white, and from a far, far distance I salute his tenacity, his practical intelligence, his cool.
Around five o’clock he manages to call me but he is incoherent. I have a friend with a car on standby to go and look for him but he cannot frame the words to tell me where he is. His language has the bones of meaning but not much beyond. So he navigates to the station and finds the train and in London somehow gets a taxi to bring him home. On arrival at Victoria Station he sees the words Victoria St. What does St mean? He thinks Saint but understands this to be wrong in context. Incredibly he works it out by looking at a map, a complex pictorial scheme for a foreigner to interpret at the best of times. Rd for road. Ave for avenue. Finally, St comes, for station. Later he describes all this to me easily. In his pocket he has one of the cards we made with his name and address, numbers for him and me, and a note saying that he is having a focal fit and the finder of him might helpfully contact me. He doesn’t think of any of this and doesn’t use the card.
At work throughout the day I feel the force of his absence and the measure of the distance between us, though it took hours to work out that something serious was wrong. He might have worked so late he slept through the morning. He may be on his way home already. All these reassurances, this rationalising, the many things one can think. My patterns of alertness to him move fast. They are so fickle and mobile that it is hard to describe their movements but at root there is the understanding that something is always wrong. How wrong is the fluctuant that flows from the root. Like the force of a wave, it might be a gentle ripple or it could be the crash that drowns and takes all.
If you imagine a hole in the sea and the energy required to maintain it, it might be a bit like this. Barry Flanagan came up with this idea, A Hole in the Sea, first as a print and then as a video in 1969. His conception looks anodyne in itself: serene. But it allows you into such a phenomenon. You can imagine the rim of a hole in the sea as the most untenable place in the universe, an impossible stop in a perfect continual broil seething with supernatural force. Of course it would not be a hole but a tube. A tube is a hole all the way down. In Fantasia, the Magician banishes the waters in great cymbal crashes, forcing apart dramatic crests of white cartoon spume. Charlton Heston as Moses in The Ten Commandments worked through exhortation and fear to lead his people through the sea. His waters don’t dare to close until he allows. The parting creates a neat edge, like a celluloid trench dug with a spade.
For Tom to be at home is perfectly normal. He works at home and the things he needs for his work are mostly near at hand. But when he is away from me as he must be sometimes and not within easy reach, say on a train going to an exhibition or visiting a friend out of town, it is as if I am maintaining a hole in the sea. An impossible, solid shape held by psychic force all the way down, with millions of cubic metres of water pressing in ready to close it. The pressure is that something should happen when I am not there. But the pressure is the same even if nothing happens. Days mostly go perfectly well. That nothing should happen on a given day is only luck. The situation is paradoxical. He is still ill.
SECTION 2
2.1
27 March 2010
Dear Friends
We haven’t sent out one of these messages since last July. Tom has had a scan every three months since then. Last week there was another. This time the news was bad. The tumour has started to grow, and another course of treatment is needed. We don’t know exactly what it will be, but some kind of chemotherapy, starting in about a fortnight.
Tom feels mainly well but is having some fits and minor speech problems. His writing continues well. Ev is gorgeous and very nearly three. Marion has just passed her driving test. But all is immediately uncertain. The next months of treatment are going to be difficult. So we say again how important it is to us that our friends are in touch. Please
do write, phone, text, email, visit, invite, come for dinner.
We look forward to hearing from you.
With love
Spring. There is going to be destruction: the obliteration of a person, his intellect, his experience and his agency. I am to watch it. This is my part. There is no deserving or undeserving. There is no better and no worse. Cold has pained the ground for months. Now the garden is bursting and splitting. From the window each morning I mark the naked clay ceding to green. I am against lyricism, against the spring, against all growth, against all fantasies, against all nature. Blast growth and all things that grow. It is irrelevant, stupid, a waste. As nature is indifferent to me, so am I to it.
As the air outside thickens and the warmth encourages the earth to release its smell, something is starting to go wrong. It is now March. I say it is March the eleventh. In one week, Tom will have another scan. This is the one to fear.
Today as he stands mid-morning by the kettle chatting and making tea, his language trips into rhythmically correct nonsense. It is ludic, quickly recoverable, but it does not sit either with fits or with his usual verbal slippages and we note the difference in its texture immediately. It is as if language problems are self-seeding and taking root elsewhere. The primary confusions up till now have been in epileptic shocks of greater or lesser intensity. Some lie under the radar, barely registering. Others are brash. He is silenced and cannot frame a sentence with meaning. When this happens, the thought that no sense will ever be made again is visual like a solid mass, as real as an object is real, a tin or a plate or a pen. For him it is different. Fear is not the issue. Even in the thick of it he is always trying to work out what is going on, to test himself. He is his own best monitor. There have not been so many fits, but outside them complexity is multiplying and thousands of lesser confusions also occur. Words slip out, switches are stumbled over and substitutions made. Like exotic fauna the varieties of language proliferate.
The scan results are as expected. After nine months of post-chemo stasis it is springtime. The tumour is growing again.
Spring. Magnolia soulangeana opens its bells and we are well. Normality is gifted in the form of steroids, 2mg daily, and immediately he tightens his grip on language and on the connection of meaning to word. He feels much stronger, stimulated. He can do simple tasks without exhaustion: pick up Ev and carry him. How we adore this high false peak. It lasts quite a short time, but time is a material stream and we never know how long it will last so we are taken in by it, of course we are. We are as ever in the moment and we are well – so we are forever well. We are not sanguine but we have been here before. We are doing our work and we know what the work is. We know we are good at it. We splash about like birds in a birdbath.
2.2
10 April 2010
Dear Friends
Since our last news at the end of March, things have moved very quickly. The surgeon has now looked at the scans, and recommends another operation. It is lucky that the tumour is growing back in the same place, on the edge of the brain. Tom will be going into Queen Square hospital on Monday, and the operation will be on Tuesday 13 April. The procedure is very similar to the last one, with the same surgeon and we hope it is as successful. It is all extremely short notice. Tom will be out of action now for an uncertain period.
This is a time of great stress for us. Offers of help, practical, emotional, culinary, comradely, or otherwise enlivening – all will be gratefully received. If we don’t get back to you immediately don’t worry.
We should say how much your support and contact so far has meant to us three. Thank you.
With love
The consultants go into conference and within days they come up with a plan. We mark the speed at which they move. Tom is to have another operation. This was not expected. Most people don’t get a second shot at the knife. Some cells that escaped and were not excised during the first operation are growing again, but rather than burrowing deep into the thinking part they are heading towards the surface like plants to light. This makes them accessible to the blade. The Thinking Part – have I actually learned anything in all this time? Tom wants to be treated like an organism and this attitude serves him well. Together we keep ourselves in joint ignorance of biology beyond the basics. A school textbook would do as well.
I feel a fraud. Because I am the authority, I am always given the last word in any conversation with the laity. But I don’t have so many words. The extent of my knowledge might begin and end in one speech. On the spot I can stall and run out of facts. I might talk freely about Temodal or chemo implants but should someone quiz me further I would spin out softly into vagueness or make it up. We repeat like clever little parrots what we are told by this or that consultant and we try so hard to hold on to the wording and inflection as we pass the news on to others. We are like children bewitched, using words as spells or charms, as if our lives depended on these tokens of correctness of form or tone of voice.
This conscious care and the desire not to embellish has the force of an ideological position. We hold that it’s important to communicate the situation and our attitude to it without bias, false hope or scope for misunderstanding. We try not to skew the dialogue and keep the words free of inflection. We are trying to spare ourselves something so that by extension others may be spared.
This goes spectacularly awry in an early conversation with Dr B. I am not present and Tom is clearly drifting. He comes away with the morsel that something is shrinking. Something, what thing? Some part. What? Some bad part. The area of the tumour? The tumour bed? The surround? The edge? The rind. The rind? Can it really be the rind? We never discover what the word she used was or what it meant but it does not seem to matter. After this when Dr B phones, we take her calls jointly. She speaks to him and then to me and afterwards we repeat the whole conversation again to each other, examining the texture of the words for flaws as we say them aloud in our own voices.
There is a pattern to these things and how we handle them. At dusk we go into the garden. It’s a good place to talk, standing against the blank fall of the back of the house, beneath Ev’s window where he sleeps. First we stand opposite each other close up. Then we turn to face the house side-by-side, our shoulders touching. Plants crowd round, their colours drained. Artemisia flares in the half-light. Abutilon blurs its bells. Another operation means another visit to Mr K. We have an appointment already. I had not thought I would be seeing him again.
It is Friday. Mr K is in blue scrubs and soiled white crocs. He seems younger than he did before, though I have no idea of his age. He may be younger than me: strange how these things matter. Now that he is intimate with Tom, having gone once already inside his brain, his manner is easier with us. I listen hard to everything he says. I have a pencil to write things down but it is a prop and I do not use it. My memory of these conversations is very accurate.
Mr K has a vision. It is a precise field. He works first with the visual picture – the MRI – and he has a developed knowledge of what its fuzzy, amorphous tones and areas of grey segueing into darker grey might mean. There are limits to this. An MRI is a monochrome, ill-defined image; it resembles a photocopy but if anyone can interpret it, it is he. He has good tools, a good team, a good hand and an exquisite sense of mass and space. He is a craftsman. What else might he do: lace-work, restoring veneers, model-making? Maybe he goes for risk. Perhaps he skis or likes to jump off tall buildings. I doubt this. I know two things about him. He is careful and he is confident. The brain is not so big. In a tight space he is astute. He understands the layout where the tumour sits and what occurs immediately around and behind, deeper into the brain. Cut to one side for speech, to the other for emotion, back a bit for anger. This is his domain. We are his guests.
If the conversation strays from the visual or the factual, his lack of interest is ever so faintly and minutely signalled. I try to work out how the signal goes: a slight breath, a shift, a nostril flares, his mouth marginally puckers, a muscle in his
leg adjusts itself. This occurs when we introduce narrative. Narrative means symptoms. Symptoms mean the description of how this thing affects us in daily life. Tom finds this comforting. On the scale of things, his expertise outweighs our anecdote.
He says it would not be logical not to operate and would we like to do it on Tuesday? We nod. We would like to do it on Tuesday. We don’t need to look in the diary. We have nothing else that could compete. Good. He commits us to the system with perfect ease, efficiency and courtesy. I shall make a phone call to my friend Fred. We are entered, and over the next hour, height, blood, heart, chest, weight, pressure, all are taken down and stickers stuck on dozens of samples. Tom’s name is asked over and over. Tom’s name is written over and over.
We are at the slippery point that defines the whole game. We are embodied. Consciousness must have a shape. The brain can be pictured. It has mass, weight, size, geography. It has history. Like any country, events can happen in it that can be plotted spatially. These local events can be identified, studied, and can determine the whole. This means the real, whole, whole – whether Tom will have the use of memory to think of a poem, use of understanding to determine which lines to recall, use of sensibility to play with words and form them into significant shapes, use of humour to make jokes, use of tact to know when not to make them, use of sense to make a choice, take a measure, use of motor to cross a road, cook an egg, use of speech to reveal himself and all this to us. All this has a physical root. All this is matter. All this is here endangered. All this is the business of Mr K.
The Iceberg Page 8