Beyond the High Blue Air
Page 18
He is asleep now, breathing deeply, calmly. This room is his home; he has been here for a long time and there is no reason to imagine that he might ever live anywhere else. The neurologist told me, when I asked him, that yes, Miles could outlive me. He is a healthy young man and short of a sudden, drastic infection, unlikely because the nursing in this home is so good, he could survive for decades in his condition. An old man stooped in this chair, his body atrophied through disuse, his face strangely unlived in, without frown or laughter lines; their absence the testimony to decades of life as existence only.
We have tried to personalise the room, but it’s difficult. Looking around it now I feel a dull anger. I hate the room, I hate its implacable possession of Miles. Let me confront it then; I’ll take it on and reveal it for what it is. It’s almost pleasurable – I want to feel the hurt, punish myself with it, dare to observe precisely the details of this room that I habitually blur into a cowardly soft focus.
I begin with the bed, set into a small recess on the right of the bay window. It is undoubtedly a hospital bed, high, metal, white-painted, on wheels. The special pressure mattress to avoid bedsores, plastic-covered to repel soiling, the adjustable metal side bars that are pulled up to prevent him falling out. But Miles can’t turn himself.
To the left of the bed the children have blu-tacked some pin-ups of girls, in line with his pillow. The girls are models, of the long-legged and sexily elegant sort, not the pneumatic Page Three variety; his preference used to be for natural beauty. I say used to – I don’t know now, but I hope he can still dream about them, feel desire.
On the wall behind the bed a large white plastic board, fixed there so that when his feed – his feed – inadvertently sprays while being opened it can easily be washed off. There is a spray of it at home, on the kitchen ceiling, from a Sunday visit. The feed is beige, the colour of school gravy, the consistency thick and viscous. Once dried and stuck to the wall it is impossible to wipe off, has to be chiselled or scraped with a knife. I imagine it in the stomach, heavy, like fresh cement. But it contains all recommended vitamins and minerals and, importantly, it eliminates wind and emanates as odourless waste. Miles has no bodily smells now; even that, the primitive, personal essence we each own, even that has been annulled. He has one litre of feed per night, which starts at 6pm on slow release into his PEG, the feeding tube inserted directly into his stomach, the bag of beige liquid hanging from a metal stand at the side of his bed. Hydration is delivered during the day, a litre of sterile water injected at intervals into his PEG. A friend of mine who could not eat or drink for eight weeks after surgery described the yearning for a sip of water as purest torture.
A shelf by the bed supports his CD player, the suction machine, a tray with jug and utensils for drug dispensing and an electric fan. Shasha, the Chinese acupuncturist, has told us never to allow the fan to blow directly on to him because it will damage his chi, already struggling for survival. But the suction machine – what does that do to his chi? It takes his breath away. It is a portable one, so that we can bring it with us when he comes home on Sundays, and it’s rather like a Magimix, with its solid electronic base and removable plastic container, though the receptacle is for saliva and phlegm that has been suctioned out through the attached long clear tube, to help him when he’s choking. Traumatic brain injury invariably compromises the swallow, which, if you think about it, is one of the most complex neuromuscular interactions in the body. Your saliva glands manufacture between two to four pints of saliva daily, which you swallow without thinking about it. Without a swallow, all this saliva pools in your mouth until you choke and gag.
A small metal medicine cabinet hangs on the wall opposite the bed. Only the nurse on duty has the keys to this; neurological pain-relieving drugs are much sought after on the experimental drug scene. Above the cabinet, fixed to the ceiling, runs a mechanical hoist with T-bar and remote control, a trolley system that allows Miles, his body held in a sling, to be hoisted from bed to chair and back again. The humiliation, swinging helplessly in the air like a failed circus act.
On the wall facing the bed a large, framed montage of photographs. I hope that something is released from this carefully assembled collage of his life, though there is a nagging worry that perhaps the photographs only taunt him, as the pin-ups may also do. During his sentient moments, does he want to be reminded of what he was? A tear fell down his cheek when Will told him he was buying a flat; they had lived together and it must have signified the permanence of his situation. But the photographs are there for another reason: our defence against his annihilation. They tell people he was this, this powerful, humorous, handsome young man, not this that you see now.
On top of the chest, a vase of garish orange tulips; I try to buy the brightest coloured flowers available, not always the most pleasing.
And finally, in the corner of the room, by the sink and anti-bacterial hand wash and paper towel dispensers, is the mirror.
As always, I dread catching his reflection in the mirror. My equilibrium is hard won; always a tenuous contract with reality, the dishonesty of it is laid bare in that uncompromising silver surface. Each time it happens I experience the same shock of unwanted recognition: there, that not-in-this-world young man, his green eyes fixed in a long, faraway stare, that is in reality my son. The Miles I hug and kiss hello brightly and wheel to his room because I want privacy, where I will make a cup of tea for myself and draw up a chair to tell him the day’s news and try to think of what else might still interest him – he is a myth of my making, necessarily.
I need the soft focus. We are living with horror, he and I.
But it is Miles alone who is living it. He has no escape. I have had the luxury – it depends how you look at it – to build layer upon layer of self-protection, have spun a cocoon of opacity between the Miles I interact with and the unconfrontable truth.
Since Ron’s cancer was diagnosed a year ago I have tried not to let my involvement with Miles’s care overshadow my time with Ron. I visit Miles during the day when Ron is at work and on Sundays when we bring Miles back we are all at home together, with friends or Belinda and Amelia dropping by. On Saturdays David visits Miles. Let’s make Saturday our day for treats, Ron says, and so we do, having lunch out on our own and going to exhibitions and films that we have spent the week planning to see. The day takes on a celebratory, festive air, a beacon of colour in an otherwise subdued stretch of greys and darker days, the time together charged with an intensity we don’t refer to. It is extraordinary that Ron simply never complains about his illness, despite the sometimes gruelling side-effects now of his treatment, the nausea, cramp, dry skin that splits and cracks, the hair loss and the fatigue, the battery of medication he must remember to take every day and the long fortnightly sessions at the clinic being given his intravenous chemo.
But now the tumours have returned. Ron’s doctor has not lost hope and is recommending a further, different course of chemo. Something, though I don’t confront it, warns me it’s possible this may be the last. Ron has decided to semi-retire, which means he will be at home for two days a week. I must make more time for him, I don’t want to lose a moment of this time. Miles, at least, is healthy.
I speak to Rachel, the care home manager, who understands the situation. There is a young trainee occupational therapist at Gael Lodge who has struck up a rapport with Miles, interacting with him in a natural way that Miles seems comfortable with. Glenn has been working with him on a new form of therapy we have discovered, a ‘touch free’ device that uses sensor technology to translate body movement into music. Miles used to make music with a bank of sophisticated electronics; now voluntary or involuntary movements of his arms past a sensor will trigger programmed sounds. I ask Rachel if it would be possible for Glenn to be assigned to Miles as a personal therapist two days a week for the foreseeable future. I don’t know how long it will be, but the truth is that I suspect we have less than a year
left. Rachel agrees.
It is a new luxury, being at home together during the week. We talk and we read, Ron does some work at his desk and we go for long walks in Greenwich Park. Soon, though, I begin to notice him tiring easily, something he has never done. He watches the news or sport on TV and when I take him a cup of tea I find him asleep in his chair, the television still on. His walk is changing, no longer a vigorous stride but muted now, so that I have to slow my step to keep pace with him. These changes I must adapt to; Ron’s vigour and energy were so much a part of his character and I fear the loss of them, fear his knowing he is losing them. I don’t want him to fall asleep. I find it difficult to walk slowly. I hate what this disease is doing to him.
We go together to see the oncologist at the end of this course of chemo. It has not been successful and Ron is exhausted. He will take a break from treatment over the next few weeks before meeting again to decide what happens next.
Walking across the heath this morning on my way to play tennis I find myself shouting at the gods: Come and get me, you bastards! Shaking my fist at the sky like a mad woman. Come on, you fuckers, come on, just try! I’ll show you.
Ron is dying. It is only palliative care from now on; he has said he does not want further treatment. Sixteen months since his diagnosis and we have talked and talked, we have sheared our souls, there is nothing left unsaid. We have had ten years together and if I had not met him ten years ago I could have lived without knowing. We had hoped to stay out our love, to fade together into old age, but he is becoming frail now before his time. I must support him when he is standing in the shower lest he falls, I must help him out of the bath, I must stand below him on an escalator and brace myself for his weight. Yesterday he fell in the street getting out of a taxi, the driver already alarmed by the gauntness of him, his bones gleaming under pearl-taut skin.
He wakes one morning with the whites of his eyes the colour of tea, his face a bilious yellow. He is jaundiced and he knows what that means as for the first time he cries out loud, Oh no, no, no, I don’t want to go, I don’t want to leave you! I call the doctor for steroids and lie on the bed alongside him, his body as fragile as fine glass.
At night the children and I take it in turns to be on duty. Thank god for Will, Claudia and Marina.
I have been driving for an hour and I’m lost. It’s early evening and darkness has fallen during the journey that I have done so often now I know every twist and turn of it. Miles has been put to bed and I’m on the way back home from Gael Lodge. It takes around twenty minutes and I know the route off by heart, I need not think where to turn left or right, but somewhere tonight I went wrong. I don’t know where I am. Hunched over the steering wheel, gripping it so hard my neck and jaw ache, something has snapped and I’m shouting, screaming into the dark: Where the hell am I? Where am I, where am I, where AM I? Pulling on the wheel, bouncing backwards and forwards on my seat like a broken jack-in-a-box.
It’s early summer and unseasonably cold. Inside the car it’s too warm, I can’t get the temperature right and the heated air is burning my feet and drying my eyes. Outside the streets are empty, glistening with a light sheen of rain and the windscreen wipers scrape like razor blades. The darkness looms menacingly, I don’t recognise anything and I don’t think I can ever find my way out. Another junction ahead and again I have to choose left or right; I don’t decide until it’s almost too late, turning left with a squeal of tyres.
Having made the decision I put my foot down and race down the empty street. I’m lost but at least there is the sound of the engine gaining speed, the hiss of wheels on wet tarmac, the wall at the end of the street coming nearer. I could solve the problem, put my foot down further, keep going until the wall obliterates everything and I will no longer be lost. Just as I begin to accelerate I recognise the block of flats on my right and the street suddenly falls into place: this is the route I take every day on my way to Gael Lodge. I’m going in the wrong direction, but I know where I am.
Slowing down, I turn into the driveway of the flats so that I can reverse out and drive back in the other direction, back home. The flats look desolate, bare bulbs dimly lighting the long balcony corridors that give on to the street. As I pull off the road and stop the car to change gear into reverse, something knocks on my window, a dark shape. There is no street light here and I recoil, desperately fumbling the gears to get away but a person has pushed their face right up against the glass. It’s a woman, her hair bedraggled with the rain, her hands cupped together in front of her face, mouthing, please, please help me, I need money, I’ve got no money. Her eyes are wild, there is too much white showing. I roll down the window an inch and hear myself screaming hysterically at her: Go away! Get out of my way! You frightened me! You can’t do this, you can’t frighten people like this. Why should I help you? My son is in a coma, my husband is dying of cancer, how can I help you for fuck’s sake? Get out of my way! She stands still, shocked, as I back the car out of the driveway. I can’t see properly through my tears but I know the way home now off by heart.
Some months later, driving down the same road one afternoon with Marina on our way to see Miles, the woman suddenly appears at the side of the car. She is in the middle of the road and her eyes lock with mine. I speed past her. She had appeared out of nowhere; neither Marina nor I can understand how she got there. She’s terrifying, Mum, says Marina, she’s a really terrifying crackhead. She feels like the Grim Reaper to me.
Today a hospital bed is being delivered for Ron. I want him to stay at home, I cannot contemplate his dying in hospital or a hospice. I think of Miles lying awake on his own at night, the horror of imagining his loneliness. At least Ron will not have to suffer that.
His absence from the double bed seems cruelly symbolic. It makes a rupture in our domestic lives that so vividly signifies the finality of the situation; his departure has begun. Neither of us wants it, but after discussion with the Macmillan nurse we know it is the right thing. Bedbound now, too weak to stand, Ron needs a special pressure mattress and one that is soilproof, while a mechanism at the pillow end that allows him to remain propped up will make him more comfortable and, I hope, help him sleep.
Thanking the two burly porters from the Greenwich Palliative Care Team who have carried the bed upstairs and set it in place in our bedroom I am in tears, and when Ron thanks them too I am undone. The gratitude I feel for this amazing team of people is overwhelming, the two Macmillan nurses who have been taking it in turns to visit, the carers who come morning and evening to manage Ron’s ablutions, the doctor who is so understanding about prescribing his pain relief. As a result of their care Ron and I and all the children have the luxury of his remaining at home. Time together, the last remaining luxury.
It has been a long night and dawn is here at last. Soft tendrils of light are just beginning to curl around the edges of the curtains and outside the bedroom window the family of starlings who’ve nested in the wisteria have begun their chittering. I wonder if Ron can hear them; he loved to be woken by the sound, though I always find it too early for comfort.
Lifting my head from the pillow I can see the still dark mound of Ron’s body in his new high bed across the room. I think he must be asleep at last, so I don’t suppose he can hear the birds. Marina has just fallen asleep too, next to me in the double bed. She and Claudia are taking it in turns to stay down here with me, for Ron’s restlessness at night is demanding. Around dawn, Will will appear and take over and then we can sleep.
With relief I hear the bedroom door opening and Will comes in carrying a cup of coffee he must have just made himself, the rich smell of it a comforting reminder of something familiar, normal. Hi darling, I’m awake, I whisper. How has he been? he asks and I tell him I think Ron’s asleep for the moment after what was a long uncomfortable night. His restlessness is getting worse and I think I will have to see if a Marie Curie nurse can come at nights from now on. This is not sustainable.
Ron is becoming delirious. The only comfort we can take is that he is here at home, everything around him familiar for his rare moments of lucidity. The Marie Curie nurses come at night. Early in the morning the young one, Wendy, wakes me. I don’t think you have long, she says. I sit up. How long? Perhaps some hours. The beginning of a perfect summer’s day, mid-July, light sifting in through the east window of the bedroom and Ron so beautiful in repose, eyes closed, his breathing as delicate as being brushed by a butterfly’s wing. I call Belinda and Amelia who arrive within minutes and wake Will, Claudia and Marina. We are all there.