The Iceberg

by Marion Coutts

  2.15

  So. Everyone is going round like tourists. It is the last week in August: a perfect pocket of hell. Friends and professionals are all out of reach while we three are on something like a luge: Olympic, gigantic, at the top end of the sport. Unfortunately we are amateurs.

  August from its first to its last day has been like this, a designated disaster zone, dates crossed out on the calendar like grazes or scars and dotted with emergency notes scribbled in pen. In the giant City State of the hospital, new doctors take up their posts in early August and the convulsion of their arrival continues until the end of the month when gone-away staff return from the beaches and rocks of France and Croatia to face the great wave of September’s fresh sick and maimed. Emails go unanswered, messages do not get passed on, dates for procedures come and go, Post-it notes go missing and questions float wistfully in the air. Meanwhile we, outside the institution, outside of everything, are well under way on our own steam. We howl along, all three of us together, with knocks and shocks and sudden up-speedings round curves skewed tight enough to spill us right out, and our bones and skin are broken and torn but there is always more bones and skin to be mangled. Like a miraculous Catholic bloody endurance sport, there is always more. In the space of three weeks, between us we have had hospital stays, fits, diarrhoea, speech loss, tonsillitis, swollen feet, mobility loss, demoralisation, ambulances, glue ear and holidays – everything happens always and forever, on holiday. But we are not tourists. We travel tightly baggaged with our lives. There is nothing left at home.

  There is a mill in Norfolk. This is where we are going. It is a monopod with no sails, its circular foot planted like a surveyor on the land looking in the direction of the sea. This is a holiday with other families squeezed on to the end of a summer of going nowhere. I don’t tell Ev what we are doing until we get here because I am unsure that we can achieve anything we set out to do and don’t want to disappoint him in whatever he thinks holiday means.

  In seven floors ascending the mill holds its ground for miles. At the top are the innards of its machinery, a giant grindstone smoothed with pigeon shit and dust. Going down, the next habitable floor has iron beds for lying on stiff as dead knights and windows with makeshift curtains, their colours leached by the sun over decades. Each floor as you descend has marginally more comfort. The first is relatively opulent: radiators, framed watercolours, bedside lamps, rugs and gigantic dark wooden furniture. The first floor is where most people stay and children mainly venture higher to sleep if they can goad each other into bravery against the dark, citing ghosts and cobwebs. There are blankets and crockery enough for a small field hospital. If ever a war came, it would be a good place to be. Most of the living is done on the ground floor in a large circular room like a compendium of vintage domesticity, packed with sofas, games, harmonium, tables, cushions, cards, piano and books.

  The morning after we arrive Tom has a major seizure. Danuta is the doctor we fetch up with at the local hospital and I do not warm to her. She is wearing black, and her sallow, circular face, sloping torso and round hips make three spheres, like a bitter snowman. Throughout our discussion she keeps her arms folded against me. Clearly she would rather be elsewhere. It is 9 p.m., a Monday night, and over the day he has got palpably better. Martha is with me and we are arguing that Tom needs to be released from this place because anything they might do can wait until he gets back to London to reconnect with the vast army of professionals who know a great deal about him already.

  It is a long discussion and I never quite work out what Dr Snowman’s point is, though she is adamant about it. No, he must stay: it is dangerous, another fit is possible, something new, or maybe not new has been seen on the CAT scan, further observation is needed. As the wife, I am at a disadvantage. Dr Snowman has the authority of the medical profession. We are stuck.

  The hospital is chaotic. A Polish man in paper underpants in the next bed shouts all through our discussion, falls several times to the floor and begins to finger his way playfully into our bay, clawing at the curtain and swearing the while. My knowledge of Polish curses is extensive, so I can interpret this for Martha. Dr Snowman can do it herself. She is undermined and getting rattled. She calls repeatedly for the staff nurse when it looks like the Pole may be about to spring an entry on to Tom’s bed. To remain here is dangerous. Escape is our best action.

  It’s so noisy in here my brain is pulped and I understand her less and less. Tom, still recovering, cannot follow her argument at all. He looks suddenly very vulnerable. Dr Snowman is failing to outline the risks coherently enough that we can make a choice and I figure this probably signals her argument is running into the ground. Finally I say, Enough. We are leaving. We sign ourselves out on a green form acknowledging that we and we alone bear all the risks that follow by discharging ourselves. As we wait in the corridor I see that the women’s bay is a model of decorum while in the men’s the apes are running wild.

  Staff Nurse Curtis has heard the whole of our negotiations over the swearing of the Pole. I think you are doing the right thing, she says. This intelligent piece of kindness, freely given, is an act of love. We look at her. Suddenly, as if wound up and released, she sets off running very fast down the empty corridor in search of a wheelchair to speed us on. In amazement we watch her back disappearing round the corner.

  But back at the mill directly on our return, small fits are coming in waves. His drugs are not in control. These are verbal tremors from which he extricates himself over several minutes, his sentences slowly building back into coherence in a reverse countdown. I record this process on the phone to the emergency services lady as we wait to see which way it will go. It is a tense moment, one of the worst. It is nearly midnight. The situation unfolds in the circular room to the accompaniment of my commentary on the phone and as they listen the children melt away, uncurling from sofas and books with discreet backward glances. Though I recognise this from minor incidents in my childhood – the finely balanced tension between see or flee, embarrassment, shock at adults up-ended, pity – I wish it were not so. I wish they would stay and see it for what it is. What do they say to each other in the bedrooms upstairs? Perhaps nothing, too awful to speak of, or whispered explanations tried out for the younger ones. No matter.

  I am losing you.

  Yes, I know.

  The next day we are fine. This is how it goes. I am in the sea. Tom sleeps in the sun on the beach. Ev plays nearby. The air is a hair-dryer on its lowest setting, blowing a warm and happy storybook wind. The sea at low tide is the same temperature as the air but of a brown texture thick with sand. Warmth dries us in seconds and makes a strange fusion with the water that in contrast seems barely wet. I swim with Martha and Mo and our three heads poke above the water. Suddenly a fourth person appears, a child, quite near. I am surprised, where did he come from so suddenly? He’s a funny-looking boy in a tight grey and black cap. I catch his profile and recognise him. A seal. He holds his neck so human, shoulders sloping under the waves as he looks at us, that I laugh aloud. His doggy snout and whiskers are up for play and he heads towards Martha, black eyes gleaming. It is exhilarating to swim the four of us together. We were four people connected in consciousness, when one of us was unmasked as an impersonator. The seal disappears. He can out-swim us all freely and wildly; we check the waters around our legs for his presence.

  2.16

  On one given day this is what happens. Today the sum of people arriving is greater than usual. Some days there may be almost nobody, although that hasn’t happened for a while, but today is not untypical in the unfolding of its catalogue of arrangements. You must know that illness is insatiable in its demands.

  Ev wakes at 6 a.m. Never have I managed to break this habit. The clock in his skinny, white body resists me. Swathed in sleep membrane he rushes in from his room across the way as if gaggles of tiny night creatures are after him. He dives in next to me in the bed, snuggles, smiles, relaxes. Such an eternal, stretching moment, long enoug
h for you to think – will he sleep? Please – will he let me sleep? But he never does. This is a prelude. He starts to wriggle, then roll and turn, and begins to grind at my head with his rock-drill skull like a young deer with an itchy horn, at first soft and then harder, paws and toes and sharp elbows joining in, his whole body weight starting to hurt me. Closeness is not enough. To understand the mystery of my body he must gouge out a space the shape of himself inside me. As much as I love the concept of being with him in bed, I need still more to be asleep so morning always brings conflict. I am buffer and bolster between Tom and Ev. Tom’s sleep is too precious to be disturbed but Tom cannot fail to be disturbed by this assault. In sleep-madness I drag Ev from the room. My mouth fills with morning bile and I hold off breakfast by force until seven. Every morning this happens.

  At 9.30 a.m. sharp Mary the Physio Support worker is at the door with a folder of exercises drawn up from last week’s session and a walking stick cut to Tom’s height that has been produced in three days. We are impressed. She is not expected – appointments are often unscheduled – but welcome. Then at 10 a.m. Jenny and her son Alexander arrive. Alex is a forbearing seven-year-old, a good friend to Ev. He knows about guns and bombs and other things of interest. It is the school holidays and they have come round as bulk, to play with Ev and hence absorb him and us all and swell our ranks and capacity. To this end Jenny has made a handsome pie criss-crossed with filo pastry. We make an audience around the pie and marvel at it.

  Now that they are here I can leave. I have chores. My tasks today are the London Library and the Mac Store. You would not believe how fast I travel. It is uncanny. I move around the city like a guided laser, so low as to be invisible. On CCTV I scarcely register. I can deviate in mid-stride, take decisions in an instant, dream in concentrated and potent segments and by 12.30 p.m. I am finished and home. Charles has brought lunch. Mary has gone so we are now six.

  At 2 p.m. Dr F pops round to take some blood and make conversation. He comes often to our house and it still astonishes. We did not believe the home visit existed in this century in this city. As a GP he is an exemplar, connecting the care in the hospital to the home. Tom is dozy now, the afternoons are generally lousy for his concentration and all the others have gone out, Charles home, and Jenny and the children to the park. Ruth from the Supported Discharge Team arrives at 4 p.m. to measure up the bathroom for handrails. She has a lovely, languid manner and handles the tape measure like someone who has never seen such a thing before, waving it like a wand in the direction of things to be measured and never inclined to bend down for accuracy. She dots the tiles loosely with red crosses like kisses. Tom is asleep so he does not meet her. Alex and Jenny return with Ev, also asleep, more of a pity as it is late.

  At 5 p.m. Bob turns up to try to load the voice software package I bought this morning. Tom wakes and gets involved but they can’t make it work so they email a help desk in middle America with no confidence in this action. Alex and Jenny depart, leaving Ev now awake and watching a film. Just before 7 p.m. Richard arrives to deliver a painting given to us on long-term loan by an artist friend. He does not cross the threshold as he is leaving for Italy early the next day so he does not count.

  Ev is now tired and grumpy and I am reading to him in bed but would prefer to be with Tom, who is still downstairs messing with the software. The doorbell rings. It is Tim on a social call, 7.30 p.m. Tim comes by nearly every day. He joins in on the software and then the reading and Ev gets a second, more animated story from him, this time with funny accents. Tim has to go. Ten minutes later Marianne comes. She is my cover for the evening. She can’t resist going upstairs so Ev gets another story. He is an impossible child to refuse, a creamy and insistent lure. I go out, to do what I can’t remember, and come back two hours later. Marianne leaves and then it is just the three of us again, one asleep. It is now 10 p.m. Shortly after 11 p.m. I go to sleep too, leaving Tom, whose body provides the metronome for the whole day, awake alone and ready to do some work.

  2.17

  How illness is transformed by technology 1.

  This is the first email Tom sends to me with the help of the software package Mac Speech Dictate. It is a victorious bulletin. Tom and Tim and I are delighted with its tone of bonhomie and look forward to more.

  My Dear

  Team and I have made the dictate together stop it is fantastic. We will need a little bit more help to the fair and it’s ROM I do mean wrong and I do not mean means to her tinnitus lofting all the time and her’s basically my voice was okay for rates for the year in they sink for the basic attempt to mine to make it a service always wanted to go it but I will need a little more so goodbye for the good times he likes easy target for rubbish the

  Love Tom

  How illness is transformed by technology 2.

  We are in the living room and Tom is trying to write an article. He works mainly in silence but when he comes to a word or phrase he cannot spell he speaks it aloud and the computer attempts to transcribe it. This is not straightforward.

  In my view…

  ………

  Basically … basically … Bay … sick … al … ee

  ………

  Ever more so … MORE SO

  ………

  Having … enjoying … enjoying … enjoying … oh for god’s sake … enjoyed. He is wearing headphones and speaks loudly, with emphasis. With each repetition he gets louder. I haven’t got used to this and keep thinking he is speaking to me. What’s that love?

  Again … again … again … again … againnnn…

  It is Beckett.

  How illness is transformed by technology 3.

  I am upstairs and Tom is writing downstairs. He calls me on the mobile. But equally? He says. I will email you, I say. I send an email with But Equally spelt out in the subject heading. He does not receive it instantly and so phones again, impatient, not wanting to wait. I send a text saying But Equally. The word is starting to morph as they do with repetition. Butequally. Butequally. Even I don’t know what it means now though I do know how to spell it. He knows what it means though its spelling eludes him. Thanks, I hear faintly above the music from downstairs. Neither of us moves from our chairs.

  How illness is transformed by technology 4.

  The letter p has gone missing. We are in a novel by Georges Perec. Tom is trying to write the name Blue Peter. He has Blue but cannot get Peter. P. P for pasta, peach and pear. How the hell do you describe P? He never gets irate. He is infinitely patient, though our conversations over errant letters and absent words must try him as much as they do me. I nearly do not get irate either but I have many more words at my disposal and I allow my voice to rise and waste them in gabbling for solutions.

  It is fantastically labour-intensive to track down a word like this. To an outsider it would be impenetrable. It would be unclear what we were doing and what exactly our problem was. Let me try by myself, he says, meaning, don’t show me the first letter. The alphabet is written on masking tape across the top of his computer. Showing him the first letter of the word generally would solve it. V. T. S. … No. Do you know the international alphabet call signs? P for Papa? No. He cannot either respond to or grasp P. Then, directly, as if seized by an idea, he types into Google – TV children’s programme flag. That he knew the double meaning of Blue Peter, both as a programme and a maritime signal, was never in doubt. That he knows how to put down these four words is secure. Blue Peter! Triumph! This is for an article on a painting by Saenredam from 1662 called The West Front of the Sint-Mariakerk, Utrecht. The article is completed and filed on time.

  A day is only so long. It has a set amount of hours to be filled and there is Ev to think about, so the business of word finding has the power to push all else to the very edge. There is no external world: no politics, no humanitarian disasters, no murders and no scientific breakthroughs. In Chile, some miners are pulled miraculously one by one out of the earth in a tube shaped like a tampon. After that, there is only us.
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br />   2.18

  Professionals are arriving in our home. They come slowly at first, in waves, but they are unstoppable. Eventually they will drown us or we will move out, whichever is the soonest. These people are the care industry and that means good and bad things. Each department on first contact brings multiple-page questionnaires and I am amazed at how sanguine Tom is in dealing with them. He is known to be easily bored and the official form is a sure trigger. He can still do sarcasm but chooses not to, and accepts the therapists, the physios and the social workers with good grace. I am beginning to understand that having people assigned to us as designated helpers is a whole area of trouble in itself. We clearly need help. Our situation might be unusual but it is not unheard of. We are a family in jeopardy and procedures are in place to deal with us, this is where the State can step in. But strangers in our home? People looking after us who do not know the heft and feel of us? I don’t know what to think about this idea so I hold it at bay.

  The professionals provide a new domestic audience. Will there ever be an end to the talking? Though he can make jokes about it, Tom is not yet bored with his troubles. Am I? The vagaries of his brain, nuances of speech and its lack, its many phases and quicksilver changes are always an affront. He is constantly looking for clever ways round the difficulties and the difficulties are endlessly shifting so he has to be cleverer still. It is hard sometimes to avoid the wrongheaded thought that there are two protagonists. Tom who is the master at outwitting himself, knowing as he does also when to give up and sit tight awhile, and his opponent in the grey corner – the brain – who is getting better – meaning worse – all the time: more outrageous, more merciless, more cunning. Quicksilver is not right in that it implies speed and to describe the processes of word finding it would be better to use local words like mist or pause or stall or weave or grope, none of them fast-sounding. But it is also true that there is a caprice involved, and a sleight-of-hand in some of the substitutions and in the whimsy with which things are more or less difficult or then just impossible at different times of day, struck through with occasional darts of pure accuracy. So quicksilver should stay.