Beyond the High Blue Air (19 page)

Sometimes, too, she talks about Ray. She tells me he is a traveller, a Romany, a ‘pikey' she calls him, one of eleven children whose extended family all still live in caravans in a travellers' community. When Ray moved in with her they broke off relations with him because she was not the same. She and Ray have a child also named Ray, who is now eight. Big Ray self-harmed and an unintentional drug overdose was the cause of his present state; drugs were a shared pastime. He has been severely deformed by the brain damage and subsequent lack of acute rehabilitation, his arms now permanently raised, the hands bent back in a claw so that his knuckles almost touch the forearm, his head and neck arched away from his chest so that his face is locked in a perpetual rictus. Like Miles he is in a minimally conscious state, but he can see and he will often blink in response to Tracy, while his expression visibly softens at the sight of little Ray. For four years Tracy has continued to be his loyal partner, as though he has not changed. She teases him, flirts with him, tells him off if he looks bad-tempered – I make this huge fucking effort to come and see you today and all you can do is look at me like a bloody old grump, I'm leaving, I'm not going to stay with you being fucking grumpy – and she attends to him physically with great tenderness, cutting the toenails of his rigid feet and wiping up the constant gobbets of thick phlegm; he is still her lover.

She plans to bring him home. There have been many discussions with Ray's Primary Care Trust, which is funding his care, and these discussions appear to follow the same pattern of anger, confusion and abuse. The social worker is an idiot, the PCT all wankers, the care home management up themselves. Tracy has finally found the house she wants, which has a garden so that little Ray can play in it, but it needs to be adapted. A lift will have to be put in to take Ray upstairs in his wheelchair and a bathroom converted into a wet room so that he can be trolley-showered. I ask if there will be live-in carers. No way, she says, I don't want nobody else living with us. I ask what she will do about the nights when Ray must be turned every four hours, requiring two people, and she looks surprised. I hadn't thought about that, she says. I'll find a way.

Marina and I are helpless with laughter. It is summer and we're on holiday in France for a week while the rest of the family hold the fort for Miles. Claudia has just been to see him and has sent me a text, and we're imagining her face as she typed the message. She is a kind-hearted, generous girl, but she can be fierce too. I love that about her, her warmth and vulnerability combined with her fierceness when unfairly crossed. She is tall, and her height and her dark, striking looks make the sudden flash of anger unequivocally intimidating: do not mess with me, it says. A frown as fearsome and quick as a crack of thunder crosses her face and then with a toss of her long hair it's gone.

Today she has had a run-in with one of the patients, Janet. Grossly obese, Janet has lost her legs to diabetes, both amputated above the knee, and she has suffered some brain damage as a result of a diabetic coma. Whether or not she has always been bad-tempered nobody knows, but her fury at the world and all the people she comes across is unremitting. Unlike many of the residents here, she is at least able to express herself, and her curmudgeonly behaviour is tolerated with kindness by the care staff and management. I suppose she has become one of the characters of Gael Lodge – you know what Janet's like, we say.

Despite the doctors' pleas to the contrary, she continues to smoke. The care home is managed, unusually, for the comfort of the residents, it is properly their home, and smoking is Janet's greatest pleasure. She likes to drive herself in her electric wheelchair to the small covered entrance to the home where smoking is allowed and she will sit there for hours, glaring and muttering at the people in the street and at the cars going by. It is difficult to get past her in the narrow space, particularly when pushing a wheelchair, but we all say breezily, Hello Janet, how are you doing today? Huh, she grunts tersely. She rarely speaks.

But today she did and Claudia is outraged.
Legless lump woman asked me if I was pregnant!
We know we shouldn't laugh but we can't help it. Claudia has been on a diet for weeks and this is not what she wanted to be asked. But it wasn't just that, she tells us afterwards. It was the build-up, struggling to get Miles in his wheelchair past her when she would not budge. Then, while I was talking to Miles, she interrupted me, Claudia says. It was difficult enough trying to understand what she was saying and not be irked that I'd been interrupted, but then I realised she was asking me if I was pregnant and of course I had to explain to her nicely and kindly that I wasn't. Her response to me then was, Huh, well, you look bigger. Never mind, I said. But just sometimes the extra effort is too much to bear.

Janet is a sort of unwitting Cerberus to our hell; what lies beyond her is a place of emotional horror. The mental slide we have to make from one reality to another every time we enter is painful enough – the extra obstacle and the effort required to be bright with Janet as we try to manoeuvre around her only adds to the horror. She makes no effort to move even a little out of anyone's way; in fact she appears to enjoy the process, watching our manoeuvres with interest. Perhaps it is the one small revenge she can take on the able-bodied world, and who should blame her?

Our laughter at Claudia's unexpectedly ruthless text is cruel, we know, but the sudden involuntary release of gallows humour is always wildly cathartic. Nevertheless the uncomfortable truth is that, however much we laugh, we could dismember anyone who laughed about Miles.

In his spare time Miles had been writing a book, exploring the similarities between different schools of mysticism and religion and their link to modern discoveries in quantum physics. It is an affirmation of his idea of the interconnectedness of the universe and he was serious about the message he was conveying. Will has found the manuscript on his computer and sent it to me. It is still in rough draft, but I have it printed and bound at our local stationer. I will leave it in Miles's room, to read to him when the time seems right. I want to read his work to him during a good visit; I want to reassure him that what he has written has not been lost, that it will reach and touch people's lives. That is the only comfort I can think of that will have any real meaning for him – that his life has not been wasted. What does it matter if I play this imaginary card? It could be true.

Today when I arrive in the day room Miles is coolly awake, seated near the nurses' station and clearly listening to the banter of the two carers manning it. There is that slight lift to the right side of his mouth that could be the hint of a smile. Miles thinks I'm being rude to Joseph, says Angela, who has been teasing Joseph about his uncool taste in music. She DJs with her Jamaican uncle at weekends and is into the latest hip hop while Joseph likes Celine Dion and Robbie Williams. Can you imagine, says Angela, Robbie Williams! and she breaks into a ghastly crooning rendition of his latest song. When Joseph and Angela are on duty together Miles is invariably in a good mood, the result of the professional, respectful care they show all the residents here. I can see Miles is fully relaxed today, his legs and arms at ease in the chair, his awareness of what is going on around him palpable. His eyes are clear and alert, his whole body observing and listening.

Joseph helps me wheel Miles down to his room and pulls up a chair for me at his side. Claudia and Marina say Joseph would make the perfect husband, he is so gentle, so sensitive and understanding. I tell Miles this when Joseph has left the room and I think he shares the enjoyment of our affection for this kind man who is responsible for the sweet pleasure I am experiencing now, of seeing Miles relaxed, no sign of spasticity in any limb, his face clear. He has not retreated, as he does some days, when he is awake but unavailable, blocked off, deep inside himself. Today he is on the outside and it could be a fearful thing, the air so charged with his presence, the dimension he inhabits a force field too powerful for my everyday reality. I feel infinitely shallow by comparison, the banality of my existence exposed.

It seems the right time to read from his work. Will found your book, Miles, and passed it on to me and I've had it printed and bound. I place his right hand on the manuscript and move his fingers over it, to feel the spiral bound edges and the thickness of the pages together. It is incredibly exciting to have it, I tell him. I think it's brilliant and I'm going to make sure it gets out there. It is so right for the moment too. I'll read you an extract now.

I start to read and as I do so he begins to move. He comes forward out of the chair in an alarming way I have never seen, did not think possible, his eyes fixed on me with a burning intensity.

Strip away the notion of a personal God, and the same message emerges from every world religion – be it Hinduism, Islam, Taoism, Christianity, Buddhism, Sikhism, or Judaism. This central spiritual message, common to all major faiths, can be summarized as follows:

1. God is One, and encompasses all existence, including each and every human being.
   
2. This divine One is both infinite and eternal.
   
3. It is impossible to analyse this divine One, since any attempt to categorize or define it will diffract its ultimate simplicity.
   
4. In order to achieve enlightenment, therefore, we must free ourselves from all the trappings of such conscious, analytical thought.
   
5. Once the individual consciousness has been silenced in this way, the soul is free to become One with God.
   

As I reach the end of the short extract I look up and see he has moved right out of the headrest, his upper body bent towards me in what can only be a superhuman effort of will. He is mouthing something, he is definitely mouthing something, his eyes wide, beseeching me to understand. The look on his face is one of utmost pain, unbearable to see. Oh Miles, I'm so sorry. What can I do? How can I help you? You are the most remarkable, courageous person I know; you always have been. I
will
help you. You will be released from this. And you
will
change the world.

What have I done? Has his experience given him new knowledge and this is no longer what he believes? Was that what he was trying to tell me? Does he still believe in what he wrote? Or – this is the dreaded fear I try not to think of – does he now believe that his rejection of conventional religion is the cause of his being damned in this hell? He loved and celebrated every blade of grass, every cloud, every star, every quiver of life he
celebrated
. What can he think is the reason for the unspeakable horror he now inhabits?

Or is he asking me to set his soul free to become One with God?

Jancis, a young neuropsychotherapist, has come to work at Gael Lodge while completing her PhD. She engages with Miles in a particular way, as though he were a friend and fellow student. She discusses her research with him and asks him questions about it, watching him intently for his response. She asks me about his life before the accident, what his interests were, what he was like as a small boy and as an adult, what were his defining characteristics. Miles has affected me deeply, she says to me one day. He is remarkable. It seems to me vividly apparent that he is present when I'm with him, there is a power emanating from him. He has taught me a lot; getting to know him has entirely changed my ideas about consciousness and communication. I hope that what I go on to do will make a difference to the lives of other people in his situation.

Lola had a stroke when she was thirty-two. She was a fitness instructor at a gym in West London, with a lean muscled body like Madonna's and a charmingly mobile face. I have seen the pictures pinned up in her room, flamboyant in a purple leotard among the machines, energy and humour booming from her – a magnificent
jolie-laide
. Fitness classes with her would undoubtedly have been fun.

She is forty-five now, her once toned body slack and soft in the wheelchair. But the humour is still there, though it has taken a particular turn. The brain damage she sustained appears not to have affected her IQ but it has disinhibited her, exacerbated by an obsession with sex. Do you know when I had my stroke? she asks people. I had it in the middle of a
huge
orgasm. When she asks me I see her looking at me slyly, judging my reaction; it's the only fun she has, harmlessly goading people to be embarrassed, seeing what she can get away with. After the Sunday service in the day room the priest speaks to each of the patients passing him on their way out. Lola gestures for him to come closer and as he does so she reaches out in a flash and grabs him in the crotch, laughing with delight as he pulls himself away in horror. Hey, she calls out to Tom, a young friend who is visiting Miles, hey you, what's your name? Tom, he says, how are you? Have you got hairy balls, Tom? she asks.

Lola has a daughter and a granddaughter, but they don't come to see her much. It is difficult for the daughter, especially with her little girl, when her mother is lewdly interrogating everyone she sees. We have all got used to her by now, are in fact fond of her brazenness. Come on, Lola, we say, when she asks yet again if we prefer the taste of sex to chocolate. You've asked us that before, it's boring! You're beautiful, she says, disarmingly. Then she adds, mischievously, But us black women have the advantage, you know, Lu. Black don't crack. She means the wrinkles on my face, her head tilted sweetly to one side as she looks at me. You're too damn right, Lola, I say, it's not fair, you don't look nearly old enough to have a granddaughter, and she doesn't, her skin still perfectly unlined.

She is Ghanaian from a well-to-do family, sophisticated, she speaks French with an excellent accent. Her mother is as good-looking as Lola is plain, but both are glamorous, Lola still choosing her clothes with care – she tells the carers what to put together each morning. Her mother comes to visit and is as imperious with the staff as she is with her daughter; Lola looks a little crushed each time, has been admonished for her loose language and for eating too much, for she has been gaining weight. Please can I have a chocolate biscuit? she asks the visitors if she sees them with a mug of tea, for she knows there is a tin of biscuits in the kitchenette and that the visitors are a soft touch.