Beyond the High Blue Air (18 page)

Summer is best, of course, because we can take Miles out into the garden and leave his chair in a shady spot while we continue the day around him. Deckchairs are put out next to him and we read and chat, someone cooks lunch, maybe one of us disappears for a while to use the computer or take a nap. It's not easy for Ron to visit him during the week so he loves to spend the time with him now, Sunday papers piled on the grass by his chair as he reads and Miles dozes next to him. In winter we might put the fire on in the sitting room and take him there, or we just stay in the open plan kitchen and keep him warm with the soft small rug I've bought for him. At lunchtime we pull his chair up to the table. At the back of all our minds there is an ambivalence about this. Is it pleasurable for him to come home and be reminded afresh of what he is missing? How does he feel when he can smell the food we're eating and hear knives and forks on plates when he has not been able to eat a mouthful of anything in years? Does he enjoy hearing our animated chatter, as though everything is normal, when he is obviously there in his wheelchair beside us, mute, unseeing?

Are we doing this for him or for ourselves? The answer is, we can't be sure. We hope it is for him, because we all think that as wonderful as Gael Lodge is, it is soul-crushing on Sundays. Sunday is the hiatus in the week, the day of rest, no therapy or organised activities, only a half-hour church service held in the day room for those who wish, or whose relatives wish them, to attend. If he comes home he can have some peace – no background TV, no background sounds of choking or shouting from other residents, no well-meaning banter from their Sunday visitors – How we doing then, Milesy boy? Nice day for a little sit out in the sunshine, eh? Got to get a tan up for the girls, haven't we? Don't you worry, mate, you're doing well. At least if he comes home it might remind him how much he means to us, that we miss him every moment and have brought him home to be with us on the only day we can all be together.

We have been taught how to administer his medication through the PEG, flushing it through afterwards with sterile water, and how to use the suction machine to clear his throat of mucus when he coughs. There is a routine to the day and by
4
pm we need to think about taking him back. By now we are all weirdly flattened and this is the most difficult time, especially in winter when it's getting dark and Sunday's gloom has taken over what's left of the day. Then we must travel back in the fading afternoon and we start to snap at one another, the little things doing us in, like breaking a nail yet again on the van's chair hoist or spilling Miles's sterilised water as we gather up his belongings. At the journey's end we will have to wait while the carers put Miles to bed, hoping he will be comfortable and sleepy so that we can say good night and leave him to go home with an easy conscience. Because we are exhausted, and sad, and all we really want now is a stiff drink in front of the fire with an empty mind.

Some Sundays are easier than others. If the carers have done their job well in the morning he will be perfectly positioned in his chair and calmly waiting in the day room. That is always a good start and, if we're lucky, he will continue to be relaxed all day and therefore more likely to be awake and able to interact in his way. We will see him softening when Will's lovely girlfriend, Albi, is talking to him, and when friends drop in to see him and we all chat around his chair, he will lean back and look amused, the tiny movement of his mouth we love to see above all else. But then he has a bad day and we can't resolve the problem, despite checking that his conveen hasn't leaked or his clothes aren't pinching or his headrest slipped. We can adjust his splints and give him the allowed extra paracetamol but nothing helps.

Today has not turned out a good day. Miles has gradually become inconsolable. His spasticity has increased, his arms and legs pulled up tight, and he is coughing with the roar that I dread. Ashamed of myself, I close the door into the garden so that the neighbours won't hear. It is, truthfully, not a human sound, or rather, not the sound that a human being makes unless you imagine he is being tortured. Perhaps he has a migraine, or a terrible stomach ache, or his stiffened limbs are especially painful, or maybe he is just confronting afresh the reality of his existence.

It is only
3
pm but we think we should take him back early. He needs to be repositioned, and maybe he would be more comfortable if he were put to bed. Claudia is next to him in the van and I can hear her soothing him. It won't be long now before you can go to bed. Lovely Moses is on duty, so he'll do it perfectly for you. We all love you, Miles. By the time we get there Miles is rigid in his chair, his roars of pain or fury or both deafening in the van's enclosed space.

Moses is as upset to see Miles as we are. He takes him straight into his room, calls another carer to help and twenty minutes later when we go in Miles is still tense despite Moses's gentle, expert attention. Claudia puts on the Philip Glass CD that Miles loves and we stay with him, one either side of the bed, until eventually he falls asleep.

On the way home the traffic is dense and at the Lewisham roundabout a car cuts in front of us. I don't give way immediately and the driver, large, shaven, bull-headed, gesticulates through his window, mouthing the word clearly: cunt.

Bastard, I say, furiously following him. Fucking bastard, says Claudia.

Fucking fat shaven-headed arsehole, I say.

Fucking fat cunt-faced arsehole, says Claudia. Ludicrous dickhead.

We are beginning to laugh.

Clag-ridden arse flaps, I say. Gross fat wanking shitehawk.

Fucking prickface, says Claudia, fucking festering ululating farting arseholes.

I have to take off my glasses to wipe away the tears. Hold them for me, I say.

We feel much better.

I fear that Miles's continuing situation muffles my response to Ron being ill. Cancer doesn't seem real, the insidious way it hides silently inside Ron's body, still giving no outward sign even as it is spreading its poison. It is the antithesis of brain injury, which so soon makes such cruel and obvious wreckage of its victims. I'm worried that I don't give him as much time and attention as I give Miles. Ron is adamant in reassuring me. I don't want special attention, he says, I particularly don't want it. When people fuss over me and treat me differently, which some do, it makes me feel like a victim, part of a cancer club. I really don't want to be reminded of it. There is nothing you can do that I can't do for myself, unlike Miles. He puts his arms around me. Come on, my love, let's go out to dinner tonight and then we can give each other lots of attention.

But after four months of remission he has had to start another round of chemo. His cancer markers are back up again and the doctors are going to try a different treatment which they've warned him is stronger than the last. He is still working full-time and feels so well that the prospect seems easily bearable; hope on its gallant charger is still carrying us all high.

On arrival at Miles's ward this afternoon I am surprised to find the door shut and the day room in darkness. I open the door tentatively and as my eyes accustom to the darkness I can see the eight residents in their wheelchairs grouped in a semi-circle in the centre of the long room. It is an eerie Aladdin's Cave of music and moving lights, each person holding, or rather having had placed in their hand, long coils of clear plastic tubing through which light is moving and pulsing in time to soft background music. The light coils emanate from a tall clear light stand, an updated version of those
1970
s lava lamps in which bright viscous-looking blobs of fluorescent colour move through each other, and these are now flowing out and over the laps of their silent audience. The organ of Pachelbel's
Canon
playing softly in the background adds to the ghostliness.

What different versions of this event are going through the damaged brains of the people in this room? Can they make any sense of this new Wednesday afternoon Sensual Experience Session that has been so carefully set up for them? However kind, I fear it is patronising; these are grown men and women being subjected to a sensory experience at the most primitive level. You might wrap the light coils around a cot and play music softly to a baby in the same way, but a toddler would already be too sophisticated. A two year old would pull the coils, be bored after a few minutes of watching the light pillar and be able to voice an opinion about it.

Miles has his eyes half open, directed somewhere above the light pillar; he is awake and I think he likes this quiet, passive thing that is happening. He is calm, his body relaxed; indeed all the residents are quiet and calm together, which is unusual. I take a chair and pull it up next to Miles and take his free hand and then squinting my eyes half shut I try to see it as he might. After a while the lights begin to merge and blur and I feel removed and more peaceful than I was; Samuel Barber's
Adagio for Strings
is playing now and I think they must have put on the
Relaxing Classics
CD, the one that we sometimes leave on for Miles when we leave him in the evening. I was wrong after all, this experience is not at all patronising. I lean closer to Miles and rest my head on his shoulder, feeling his warmth and the slow rise and fall of his breath. I think of Marina's words not long ago at Putney: Here I am, hugging my brother, mourning my brother.

But now a sound is beginning to break into the peace. At first soft and intermittent, it begins to rise until there is no doubt: Petros is sobbing. Sweet Petros, the sixty-year-old Polish man who had built up his own business but had been waited for and set upon in the street after work by two young men, one of whom he had recently dismissed. He is a gentle-looking man, and after a year with no response of any kind so that he was deemed to be in a persistent vegetative state he suddenly began first to cry and then to laugh. It can be very upsetting when he cries because once it starts he wails from a depth of desolation that can't be stemmed, a primeval sound, like a banshee calling from the wild. It frightened his grandson so much that his daughter has had to stop bringing him. When he laughs it's hilarious, we all can't help joining in and hugging him with delight.

But now, terribly, he is sobbing. Pavarotti is singing ‘Nessun Dorma' and I wonder if that is what has reached him, Pavarotti's voice and that beautiful aria having become so inextricably part of a football fan's repertoire, and Petros, I know, was a keen Arsenal supporter. Denise, the gentle young Jamaican carer, is bending over him and soothing him but he is inconsolable, and she starts to wheel him out of the room and onto the wooden deck outside, to distract him but also to prevent the other residents from being distracted by him. Miles has remained impassive; more often he reacts violently to noise from the others, screwing up his face, clenching his legs into a rigid spasm of spasticity and sometimes roaring back at them. I am relieved he is peaceful, and I relax once more against his shoulder and close my eyes.

Miles aged eight. He has just returned from the birthday party of a little girl down the street. As he steps into the house he announces, When I grow up I'm going to be a homosexual. That's interesting, darling, I say. Why do you say that? Because, he growls, then I won't have to marry a
girl
.

Miles and Tamsin, his beautiful half-Italian girlfriend with the blackest hair and the palest green eyes, are going to Berlin for New Year. They agree to save Christmas presents until they are there. Miles has bought Tamsin a dress that he knows she wanted but couldn't afford, wraparound softest silk jersey the colour of her eyes. He was with her when she tried it on and then went back later to buy it for her.

When they reach the hotel he manages to secrete the dress directly into the cupboard without her noticing. Later, when she starts unpacking she opens the cupboard. How weird, she says, the last person left a dress behind. Can you believe it, it's that Diane von Furstenberg dress I love! She lifts it out and holds it up. It's so gorgeous – how amazing that anyone could have forgotten it. It's my size too . . . And then she sees Miles's face and the weekend takes off from there.

Today Will and I are sorting through Miles's papers. The flat they share is being sold and Miles holds the original documents which are needed for the sale. As we search, Will comes across a poem Miles had written. He reads it and then hands it to me without saying anything; the look on his face tells me he has been caught unawares. And now as I read, Miles's voice is right here in the room with us, vivid, warm, wry, his humour and his deep seriousness.

The poem has a title: The Basilica of St Peter.

Another time, another girl. Siobhan was tougher than Tamsin, whose nervy, race-horse temperament was, in the end, not made for permanence. Miles visited Siobhan in Rome, where she was working at the time. His feelings for her were unrequited and he returned home subdued and rueful; he felt he'd made a fool of himself by making it clear she was the sole reason for his visit when he had obviously misread the situation.

He must have written the poem soon after his return from Rome, an ironic reflection on his miscalculated ardour. It feels an invasion of his privacy to be reading it, the tenderness of it, but I think it is beautiful, an example of his wonderful impetuosity; I wish someone had written a poem like that about me when I was young.

It is unfair, I know, the degree of dull anger I feel for Siobhan, that Miles should have suffered pain on her behalf. She is a lovely girl and kind, but the thought of his being unhappy or humiliated in love is quite intolerable now.

Ray has been on the ward as long as Miles has and I have got to know his partner, Tracy. Volatile and voluble, her speech is richly embedded and spiked with expletives, a kind of default language that I think she has evolved as her safeguard through the chaos of her life. Armed with a voice many decibels above normal, she fires off the fucks, cunts, arseholes, shites like a spray of bullets; she sounds fierce but she is all at sea, confused and angry that she doesn't understand. I feel maternal towards her – I am old enough to be her mother – and she is always soft with me. Sometimes, after a grossly abusive rant delivered at top volume to the innocent carer or nurse who caught the edge of her misery, she apologises to me in tears. Her immaculately made-up tough young face contorts with bewilderment at the pain and rage she can't articulate.