Beyond the High Blue Air (21 page)

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.

Will goes over to sit on the chair next to Ron's bed and I settle down and try to sleep. Just as I'm beginning to let go I can hear Ron waking. He's saying he needs to sit up and as I look across from my bed I can see Ron's frailty apparent even in the half-light, Will lifting him up into a sitting position, sliding his legs gently over on to the side of the bed and then supporting him. For a few minutes Ron remains sitting quietly and then he says, I want to stand, and I watch Will now bending forward to put his arms round Ron and lift him to a standing position, holding him securely upright. I know this is a difficult balancing act because Ron's body without the ability to maintain his posture has become a dead weight. They remain like this for a minute or so, merged together in one dark shape outlined against the pale curtains behind them. Down again, Ron says suddenly, and Will lowers him. I wonder what is going through Ron's mind as he sits on the edge of the bed as though poised for flight, despite Will having to support him. The room is silent, the birds outside have stopped their chatter and the only sound for the moment is the soft in and out of Marina's breath next to me. I want to get up, Ron says. It is a new thing, this agitation of his, a private thing we can't be part of. Will lifts him again and holds him up and they remain standing in silence for some time before eventually Will lowers him back to a sitting position. It is like watching a kind of strange and tender dance ritual, of shadows and silhouettes and movements performed with intense concentration, everything narrowed down into this one urgent, unknowable need of Ron's. Thanks, Will, good man, Ron says. Sorry. It's okay. I love you, Ron, Will says, surprisingly and simply. He has never said this before. Very gravely Ron looks up at him. I love you too, Will, he says.

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.

It is the first time I have seen someone die. A strange privilege. Calmly, peacefully, Ron leaves, his eyes opening one last time, unfathomably blue, before they slowly close.

Ron's funeral today, a Monday, two weeks since he died. How protected from death has my life been that I've only ever attended two funerals and have never had to organise one. There has been so much to do these past two weeks, the distraction almost a comfort. Waking too early this morning I feel a new sense of peace in the knowledge that Ron will finally be free to go.

Downstairs in the kitchen making tea the kettle crackles and sighs in the morning silence. It is a beautiful day for Ron's departure. His idea of heaven, the air already warming up as I open the doors out onto the garden, and everywhere a tumble of scents and colours. This garden has become a barometer of my state of mind. It died with neglect the first summer after Miles's accident, but I re-made it for Ron, planted wildly last autumn thinking if I brought it back to life it might keep him alive too. I failed, but it will do him proud today. How it will fare after this I don't know. But for now the borders are brimming with wild geraniums, feathery-headed Annabel hydrangeas, pale roses.

Taking my mug of tea with me I wander through the downstairs rooms. People will be in the garden today, but I want to make sure the house is ready too. With Ron upstairs in our bedroom in the weeks before he died, the children and I lived only between there and the kitchen. I haven't set foot in the drawing room for months. A cool green north-facing room, it's our place both for special occasions, champagne and Christmas, the log fire rustling, birthdays and friends, or in between a place in which to retreat, to read and listen to music. Going into it now I wonder when Ron was last here. He seems very close. It is deathly quiet, too early for cars or people outside. I feel porous in the quiet. Books are piled, spilled over the floor by the bookshelves, so I put down my mug and tidy them up as best I can. There is never enough shelf space. A book catches my eye,
Love Letters
, which Ron gave me, a collection of the letters between Leonard Woolf and Trekkie Ritchie filling in the little known relationship they had after Virginia died. As I open it a piece of folded white paper floats to the ground. It's Ron's inky embroidered writing.

L

Love totally and completely

for ever and ever

As ever and for ever

R xxx

I've never seen it before. I don't know when he put it there – he didn't give it to me with the book, which at the time I read to the end.

Miles is not coming to the funeral. It's been a painful decision, but the children and I don't want him to be on show, which he would be with so many people coming who have not seen him since his accident or who don't know him and might be curious to see a young man whom they think of as in a coma. We remember the time we took him out in Queen Square, how he hated it, or the dreadful staring he experienced on hospital visits. It's too painful to contemplate. He will come to the cremation afterwards and I have asked for Joseph to accompany him from Gael Lodge. Only close friends and family will be joining us there.

Joseph and he are waiting at the entrance to the crematorium when we arrive. The shock of seeing him, so handsome, so as he always looked. Joseph has dressed him in black trousers and the black short-sleeved Hugo Boss shirt with a thin orange stripe down the side that he loved. It is much easier for the carers to dress him in tee shirts; so typical of Joseph to have gone to this extra trouble today. Miles appears fiercely awake, his stern composure intimidating. Does he know where he is? He must understand the gravity of the situation. The children gather round him as I go to greet the friends who've arrived and we talk about the funeral, about Ron, how he would have loved the music. When the priest invites us to go in I am relieved to attend to Miles, to wheel him down the aisle to the front and take my seat at the end of the pew next to him. Leaning over I whisper in his ear, Ron would be so proud of you today, Miley. I am so incredibly proud of you. He sits erect, unmoving, formidable. How strong a support he would have been for me. The overture for
Parsifal
begins to play and now I'm dissolving, Ron is here in front of me, unreachable behind the bland wooden surface of the coffin I chose so carefully as though it mattered, the cream and lime roses draped and scenting for an instant this ugly space. He is here and not here. Miles is here but not here.

‘Grief is not an achievement,' I read, in a trenchant review of a memoir in a literary magazine. No, indeed; it is as random as death, which is not an achievement either. It just happens, to anybody, anywhere, anytime, just one part of what we otherwise call life. This writer admits he has not yet had to suffer grief, but he is concerned that for some it is abused, exploited, a badge of honour. Am I exploiting my grief, writing about it? And then I read the poet Mark Doty, immersed in the deep, darkest moment, writing to wrest some sense from himself at the death of his lover: ‘Being in grief, it seems, is not unlike being in love.' How those words ring like a bell through the echoing cloisters of this cold new world without Ron. Of course. In love, or in grief for love lost; one segues into the other, a continuum of love.