The Iceberg

by Marion Coutts

  With different details, people, places, this scenario happens many times. Sometimes I manage to have more fun before breaking down, sometimes not. At a certain point the only way to guard fully against it is to stay at home or circumscribe ever closer the people I meet. But we keep at it, these ventures: holding on to things, to people, like lampposts in fog. It seems we must. We inhabit a physical world where the number of places to go and people to encounter is vast but finite. This is held to be a good thing. Imagine its opposite. The same spaces and people that held us before must hold us now.

  If we were spirits we would use crisis as an opportunity to flit, change shape, become airborne or take to the trees. We might change from water to wood, or wood to wind. Embodiment feels like a dull strain, an afterthought. It gives me a headache. Socially, I am near unobtainable. Tom does much better, and Ev, our ambassador, the best. As physical creatures our movements remain linear, horizontal and heavily patterned to fit our environment. It is inescapable. We accept an invitation, leave the house, walk to the station, down the escalator, take the Tube, up the stairs and go out into the world as guests.

  It doesn’t happen this way to Tom. He is special. I am in sum a reporter to events. The worst is not happening actually to me but conversely, as we both acknowledge, that puts me further out in danger. I have the job of wholly partial observer. I am a commentator. I am therefore unarmed. He has the sword and mighty shield, the gravitas of the very seriously ill.

  1.17

  In mourning, wrecked before the fact, I try counselling. It’s been nine months since this thing started. I am against going forward as I don’t want the thing that is going to happen to happen. The future is not mine, nor is it Ev’s. The future is against us.

  Round One of counselling is on the NHS. The hospital is a complex growth by the side of the Thames. It is architecture by accretion. Any planning was contingent on decisions made before and like a hand-drawn line which tries to echo another hand-drawn line and then another, it quickly deviates and no longer looks anything like its line of origin. I am directed to a temporary building on the roof of an annexe to the main body. This is the counselling department. From the ground it looks like a box a child might stick on top of a fort made of other boxes: a provisional outpost that was built for expediency and got stuck. Its route is signposted along a series of increasingly dismal corridors. The journey takes many convoluted minutes and signals long before you arrive the low cultural status within the hospital of the talking art as a mode of healing. The walk, and the experience of the waiting room when you get there, are so crushing it is worth not going so as not to experience either of them. The neutral decor is an assault. I last two sessions.

  I wish that someone, anyone – any of these people who are paid to do this – would actually just tell me what to do. Bring what you will to the session, says the therapist. She settles back in her chair and eyes me with sympathy. Her eyes are filmy. I can see myself and the windows of the room reflected in their whites. She is passive. I have not yet opened my mouth and I am defeated.

  I have many friends skilled in sympathy. Strategy is what I need. I need tactics: a manager, coach, a trainer who knows about the death stuff. After all, dying is not unknown. It is astonishingly common for all that we regard it and there are a multitude of facts which can be addressed: about the understanding of young children, about the deep fatigue generated by stress, about what illness does to concentration, about financial support, about anger, the family, stasis, identity, love, society and all the skeins involved in the ravelling out of the whole.

  I have my topics on a piece of paper. They are:

  1. The question of grief in advance

  2. Being stuck in the present

  3. The nature of uncertainty

  4. Other people

  Round Two occurs some months later. A friend recommends a small agency specialising in cancer that works with patients and family. The decor of the place is progressive: solid, warm, dark colours in heavy peppermint greens and aqua blues. It is a tiny dedicated outfit where a clutch of trained counsellors work for not much money and have to spend a large portion of their time fund-raising instead of talking to clients. The sessions are affordable as they are heavily subsidised.

  My topics are still the same, but this time the approach is pragmatic and strategic. Here is a case. A catastrophe. An emergency. It is all hands on deck. Most of the time in the sessions I am crying. But in the gaps, when I stop, I begin to speak. So a fragment can be brought to light and we both try to look at it sideways so that incrementally, week by week, a picture of what it looks like may form. I have never cried like this. The fatigue of it is seismic. This is crying as main violence to the self. Its aftermath is like the aftermath of assault: shock, exhaustion, confusion, with the sessions resonating in my head like tinnitus that ebbs slowly over days.

  The shock feels greater because the tears are my first intimation of scale. I am nearing the iceberg. My tears are sonar. They release on impact a faint understanding of what lies beneath: a vast solid, the floating mass of ice that is still to come. These are early days.

  Acclimatisation is a curse and a blessing and it becomes clear that from my position at the heart of the gathering chaos I can scarcely see anything at all. I am caught between adrenalin and its back-drag, inertia. Tom is months into chemo. He sleeps as a man drugged, but when awake he works and his work goes slower but with great clarity. Not less than normal. Not more than normal. The same. Exhaustion blankets the house. We are always between scans, the one past and the one to come. We live out each three-month instalment while tiny fits explode on us like bombs lobbed from outside. Ev becomes bolder and wilder.

  The sessions give me a weekly platform from which to look at the rushes of my life as I live it. God what a madhouse! It is astonishing, intolerable. Save everyone! It must be stopped.

  1.18

  The oncologist, Dr B, is always of interest. It takes me a session or two to get used to her. At first I think her eyes have too much potential to show alarm but this is before I understand what alarm there is. We are glad it is Dr B. That she is the one if one needs to be had. She is a fait accompli: here is the cancer and here the cancer doctor. It turns out by chance that Tom knows her through a loose connection of friends and flat-shares a decade past. She has spent that decade getting very good at her job as he has spent his, so it seems not incongruous that they should meet again in this setting. It is somehow appropriate. Connection is a good thing.

  At first it disconcerts the bureaucracy. Would you rather have someone else? they ask, as if the relationship between patient and clinician should properly be sealed, vacuum-tight in the world of the unwell with no leakage. We are crossing the Styx. Cancer exists everywhere embodied in major and minor forms yet this sanctity is strongly held. We find it so hard to address it that we bequeath the disease great privacy and shade. It is its own shroud. No, Tom says, and he is right. That he already knows Dr B allows him immediate access and means that there are sometimes other things to talk about apart from the tumour and its workings. After all, there are always other things to talk about.

  In reality between dawn and dusk we might not talk about it much at all though we hold it in our minds. Tom says he does all the time, though you would never know it. For me it sits as if on the curve of a graph from near to far that can slip for short periods over the horizon, usually when I am thinking about Ev. The relationship with the oncologist sets up something like a good mood or a background pattern to an appreciation that kicks in very easily. She makes herself exceptionally open to us. Whether this is true for all the others we never find out, but we have her mobile number and on that bright morning ten days after surgery when I found Tom speechless and flailing she answered it directly. Dr B responds promptly to emails and our dialogue with her is unlike any other we have. Something different from a friendship, it is sudden, expedient, contingent yet wholly actual. This is no small comfort.

  In the affect
less spaces of the hospital basement where Cancer and Chemo live, her fitted dresses and suits suggest flamboyance under restraint and she is a sight I look out for. She comes into view like a yacht. I always notice what she is wearing and am cheered by it. She likes a flared skirt with a strict belt and an outfit with an asymmetric cut. Minus the twenty-first-century tailoring, it’s the New Look. She takes a heel and there is always a point in these sessions to stare at the floor so I look at her shoes. They are dramatic.

  The other basement workers wear blue belted dresses or wide, white tunics and trousers. On their feet they all have Crocs. Their bodies could be happily drawn and coloured-in with crayon going well over the outline while hers always seems delineated and freshly scored in sharp pencil. She works unfathomable hours and sometimes phones late at night. From the background noise, she calls from everywhere: taxis, stairwells, the office, the street, stations, on the way to other meetings.

  Dr B is our teller of news, good and mainly bad, and she has charge of the rich implications that can be given over in the voice and analysed into the nuances, said and unsaid, that continue after the voice stops. Dr B can picture in her head the likely arc of the disease and has seen it plotted live many times against a timeline. A blizzard of lines echoing each other at the start, some surprising misfires, shortfalls, divergences and then long lazy reaches of line continuing as the others fall away. It is a contingent arc. She knows not to describe everything at once.

  In sessions our talk is compressed. She works against the clock and there are many patients to be seen, though this is a pressure we feel lightly: again, a mark of her efficacy. This is serious and you have to do it right. Yet we can make her laugh, especially Tom. As a third party I see that doctor and patient are on some level amazed at each other. She at his mode of being with disease, at the integrity of his identity as it progresses, and he at her vigilance against it. In clinic, his amazement can extend again, vivid as it ever first was, simply to his situation as he narrates it. He is telling her each fresh adventure he has and there is pleasure in this too for both of them. Her eyes widen with laughter as she looks at us and narrow again as she leans to consult her notes.

  1.19

  I dream of a response. It troubles me like a rash, like a whole-body itch that needs to be relieved. A public response is what I’m after. Here is my idea so you can see how inadequate it is. I will make a costume to be worn every day as long as we both last. Wearing it, I will be identified with him and by association with his illness. I am not ill. I am not mad. I do not have Münchausen’s. I am a witness. And what may a witness do?

  For its design I look to the vanguardists of the West and further East, the former GDR or Bauhaus: Rodchenko, Malevich, Schlemmer. We go to an exhibition of the Dutchman Van Doesburg and admire his ingenuity getting stuck into everything: tiling, trousers, streamlined stools and schools in primary colours, social housing, all practical and optimistic in the Dutch way. I lived for four years in Amsterdam. Better design makes better public life, they say. Better public life makes better life. I imagine a thick felt suit in black and camel or an aubergine and lime livery with hints of London transport. This preoccupation lasts many weeks and it is born of anger. I won’t have a discreet coloured ribbon or a cool, confident young person’s T-shirt. I am looking to construct an irrefutable suit, an awkward carapace that is something like armour. I feel warped, unrecognisable. So why is this not visible? My idea doesn’t fit into existing modes of public consciousness-raising. It would mark me out as trouble, a tumour bag lady. Tom understands, though he finds such an idea ridiculous. It is ridiculous. Though the problem lies in cells, truly disempowerment is continuous with the problem.

  A dad who has learned of our situation comes up to me in the playground. I loathe the playground as much as Ev loves it. It is ripe for Council uplift: exposed tarmac, peeling paint and knackered railings, no soft landings. The place is hard and gives no solace. This is a nice dad. He offers to help in any way he can and shaking his head tells me that knowing of our trouble has put his rows with his wife about money into perspective.

  Hunched on the bouncy horse, I watch Ev in the sandpit trade diggers like a merchant making a profit. Folded in this position I am stuck, my hips are trapped and my legs curled under me. I am an allegorical figure turned in on herself, an emblem, a symbol for others. Nicolas de Larmessin, the French engraver, made a series of prints of tradesmen, grotesquely fleshed with the apparatus of their trade: butcher, hatter, knife-and-scissor-sharpener, all solid and stiff as sandwich boards. A satire on The Dance of Death, he called it The Dance of Work. My trade would be Bad-luck-measurer. I could wear the fussy brocade of Victim, the slashed coat of Not-so-fortunate, the rough dress of Never-so-bad-as-that. Then in the street and in the playground I would be taken as a rule, a living testament to mortality and to the acquisition of perspective. People say that children put everything into perspective and then they say that again about the dying. What do they say the rest of the time? Why, they don’t care about perspective at all.

  But even as I fret, I know it will go nowhere. It is clear that my costume would only stand as a gesture of the most superficial kind. I might twist it one way or another, yet the sub-text, rather than being an act of solidarity, is simply its opposite. The garment could only draw the eye from him to me, from his cause to mine, for I would be sure not to devise a dress that made me look anything other than striking, or anything other than mad – and therefore equally striking – worthy of pity and attention. Me. Me. Me too. That’s what the costume would say. It doesn’t escape my notice either that the regular channels for public response or consciousness-raising in our situation, running marathons or fundraising for community initiatives, don’t cross my mind. Medicine is providing the vanguardism and the cutting-edge ideas. Dressing up falls woefully behind the curve. The wind has gone out of me. Mortality is making me conventional. The costume is not made.

  1.20

  6 June 2009

  Dear Friends

  It’s been a while since we sent one of these out, not since December. The months seem to have passed quickly. Tom is about to have his last week of chemo, which will mark the end of this round of treatment. After that, there will be a scan. After that, we’re not sure.

  So far he continues to feel very well. He is doing his work as normal. But this has now been going on for a long time and it has affected us differently. It’s been a lot of strain for Marion, less so in some ways for Tom, and none at all apparently for Ev, who continues to flourish. Thank you again for your thoughts, messages, support and company. We look forward to hearing from you.

  With love

  Ours is a slow house. Nothing much is visible from the outside. The curtains are drawn. Treatment is the alternative calendar of our days. Like a corrupted menstrual cycle, Tom has been on chemo drugs taken at home for five days, followed by a slow disengagement over twenty-eight. He takes it well. So far ill effects are few. The desire for sleep and the difficulty of getting it is our main trial. In the earliest hours of a morning as Ev comes in and grinds his skull yet again into mine, I push him roughly from the bed. Just Go Away, I shout.

  I am still breastfeeding. Ev grows in our sight. Then one evening he has a drink, just a small suckle, when his attention is distracted by something else: a curl of silver paper, a toy car, a noise on the stairs. After that, nothing. Finished. The child is distracted forever.

  Tom goes into hospital to pick up his pills, get his blood checked and see Dr B. Otherwise we operate like norms. Tom works. I work such as I can. We live socially. We go to the cinema, to the galleries and out into the city but our movements are careful and measured. We are watchful.

  These are our days. Our nights are another matter. For Tom, lying down is painful and sleep precipitates waking. Insomnia rules the house. His body is uncoordinated and when he turns he can do it only by throwing himself repeatedly over and over in increments, like a man in a sack. The bed bangs and shakes. I am awake. I see
m to be always awake though this cannot be true or I would be dead. We are like exhausted mammals, finned creatures, beached. We have tried sleeping separately. That didn’t work and anyway we want to be together. We can be more inventive than that.

  Before illness, me being the worst nurse was an open joke. This has not changed. I find it hard. For six months Tom has been on steroids. Their purpose is anti-inflammatory, reducing the swelling in the brain around the tumour. His dose is low at the moment, 1mg per day, but steroids are a notoriously short-term line of defence. Over time they turn on the body and wear it down, weakening the muscles. When you bring the dose down, as he is doing now, it is debilitating. The muscles have to be built up again.

  For weeks movement is a struggle. The aches are highly mobile and come to rest in the oddest places, the cusps or outside edges of his hands or the backs of calves. Pain flicks too round the shoulders, thighs, knees, so fitful that it is impossible to plot a defensive strategy. He is useless at exercise and in these extreme conditions continues to be so.

  Another’s constant complaints are boring, that is known. Also this moaning is in a secondary league. He is not saying I am in pain from the tumour, which I would be a monster of cruelty not to react to, but I am in pain everywhere all the time for cumulative reasons that are not immediately life-threatening. This is so vague, and so much the bedrock of our situation, that I can only be fitfully empathetic. So I am not empathetic enough. I am too tired, too busy. Pulling his weight is not in question. Not literally. Not figuratively. Nights are endurance courses over the distance.