Beyond the High Blue Air (20 page)

The kitchenette is more like a large cupboard, situated just off the day room on the ground floor. It is for visitors' use only and it has come to represent a retreat, the only place where for a moment I can imagine I am somewhere else. The small fridge in which we can leave snacks to chill, a little history of the relatives as I see a cream bun alongside a pot of
0
per cent fat yoghurt, a bowl of spiced yams, a small quiche. There is a large tin with a Bruegel-like snow scene on the lid that seems never to run out of biscuits, the overly sweet smell as I open it a comfort while deciding what sort to have today. But as I'm deliberating I can hear Lola's voice. Her wheelchair is blocking the entrance and she is asking me for a biscuit. Go on, Lu, she says, just one, please. I've really been good lately. Please, go
on
, be nice to me! I find one without a cream centre and hand it to her. Just one more, she says. Please, a creamy one – you know, sugar and spice and all things nice, like s-e-x, and she grins delightedly. Do you like my earrings?

I finish making my tea and Lola moves to let me leave. Thanks, Lu, you're sweet, she says. Which do you prefer . . . I must go back to Miles, I tell her firmly. Lola is kind, without malice, adrift in her strange world, and yet I am exhausted as I return to Miles's room with my tea and biscuit. I feel adrift in a strange world too.

The end of a long afternoon and I am sitting in Miles's room, watching him. It has not been a good visit; nothing I've done has helped and I feel sullen and useless. He is seated in his wheelchair, his mouth open, jaw juddering rhythmically. Every now and then he coughs, his face turning a deep red as he fights for breath.

Always the same cough: first a sudden shout – it takes him by surprise – then a long drawn-out
aaaargh
before it comes, a roiling, choking sound, a gasping for breath, his whole body tensed, legs raised, arms clenched, and then, as the cough subsides, a final, bellowing roar of rage. It has become one of his signature sounds here just as it was at Putney – that's Miles having a bad day, people say in the next door ward.

After a few minutes the juddering spasm in his jaw begins to subside and his limbs slowly relax down. Eyes half closed, he stares into something far beyond the distance. I move my hand gently across his field of vision and he doesn't register it; at least he is calm.

The room is quiet now, the silence respite for us both. Through the bay window that gives on to the street outside I watch a mother unloading the boot of her car with the familiar blue and white Tesco bags while her small daughter tries to help her, carrying one bag to every four or five that her mother manages to lift at once. She must have more children, this is a mountainous shop she's just done, surely for a large family. I remember the weekly visits to the supermarket when the four children were all at home, how starving the boys were when they came back from school and how they ate at least double the amount the girls did.

I turn to look at Miles and can suddenly picture clearly the exuberant small boy tucking into his giant pile of toast at tea: grey shorts, wrinkled-down grey socks, scuffed black shoes too big for his skinny boy's legs, the grey shirt hanging out from under his too-small navy blazer, and his eyes alight as he tells me the day's news. The time he came back in a furious grump, marching into the house with a gruff hello, flinging his rugby bag down on the hall floor. He scowled through tea, ignoring Will and the girls' chatter, until finally he blurted it out: Matron is a sex
maniac
. Goodness, darling, I say, why do you think that? He answers darkly, She made us each take our pants down and she squeezed my
balls
. Oh dear, I reassure him, that's part of Matron's job, it's an important health check to see you're all growing up properly. But he's not convinced. I don't care, I won't let her do it again, he growls.

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
6
pm 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.