Beyond the High Blue Air (16 page)

In the water he is no better. Sarah and Harriet are supporting him, Sarah behind him, holding him under the arms, Harriet supporting his legs. But Miles is more rigid than ever; this is a disaster. He doesn't feel safe, and how can he, when he has no control over his movements? The thing he has always sought to avoid, feeling safe. It is a grotesque parody of his life.

Where did it come from, Miles's need to push every experience to its furthest limits? He agreed with the saying, he told me once, that the greatest hazard in life is to risk nothing. From the beginning he sought out danger and it was as simple as that. He needed it in the way that a mountaineer continues to seek out an ever more challenging rock face, and though the usual explanation is that it's for the adrenalin rush, I felt it lay deeper than that. It seemed more a need to confront and combat any personal fear; the thrill was in the personal, private victory.

Like the time he went cage diving with sharks. As every other person who saw the film
Jaws
did, he had a consuming fear of sharks and so one of his greatest thrills was to arrange, as soon as he knew we were going on a family holiday to South Africa, to go cage diving. I have the video of it: he and another young man in their black wetsuits like seals in the sea in a steel cage attached to a small boat, and the lazy eyes of the great white sharks circling them a hand's width away, occasionally thumping the cage violently as they appear to try to reach the men. He described the experience as the most exciting of his life so far, even the build-up to it. Setting off at four in the morning to travel up the Eastern Cape coast through the dawn to Gansbaai from where the small fishing boat departed, the scenery wild and the dawn ethereally beautiful, and he felt a sense of uncontaminated connection with nature, and with himself. The anticipation of confronting pure fear emptied his mind of all its clutter. It felt cleansing, he said.

There is an article in the newspaper about a woman who is paralysed following a riding accident. The story is very moving – the young woman was a gifted competitive rider and her world has ended. But, I think and she can never think this, the wonderful thing is that she is not brain-damaged and she can speak. We are party now to the weird hierarchy of injury, where before Miles's accident her plight would have seemed inconceivably dreadful, but now we are envious of it. She is so much higher up the ladder, and Miles is right at the very bottom.

She can speak, and she says no one will believe that one of the worst things about her injury is that when she has an itch she cannot relieve it. She cannot scratch her nose when she wants to. I register a small shock of horror. Why didn't I think of it before? It's been more than a year since Miles's accident. He and I share the same ridiculous affliction of having a sensitised nose which regularly, for no explicable reason, becomes agonisingly itchy. This means that at random moments we are assaulted by an overwhelming need to scratch our nose, and by scratch I mean really scratch hard, preferably with something like a wad of rough kitchen paper, and then to rub it as viciously as possible backwards and forwards, up and down, until the itch has been quelled into submission. If the situation doesn't allow such comical movements we must make do with a quick surreptitious push of the nose side to side or a hard pinch, but the itch will not have been satisfied and we must continue to suffer.

For some time I have been puzzled by a look that has come over Miles's face at odd times since he came out of his coma, a look I haven't been able to interpret. All of a sudden he begins to frown, his eyes shut tight and his whole face tenses, like the quivering moment just before a sneeze. But there is no sneeze and he remains frozen in this grimace until eventually, as though with Zen-like effort of will, his expression begins to subside into its former stoic blankness. When it has happened I've not been sure if he is in physical pain or whether he is suddenly experiencing emotional distress of some kind, perhaps a memory he cannot bear to go back to and is trying to shut out of his mind. Now I'm sure I know what it is. I do an experiment in front of the mirror and there is no doubt – my grimace exactly replicates what I would do if my nose was itchy and I couldn't scratch it.

When I am with Miles the next day I read the newspaper article to him. I can't bear to think, I tell him, that you must have felt the same. He is alert this morning and I can feel him listening to me, though his expression is a little tense. Miles, I thought I might just give your nose a bit of a scratch anyway and see if you like it – I know myself it's never unwelcome. Going to the paper towel dispenser above the basin in his room I tear off four sheets and scrunch them up into a ball. Okay, I've got some paper towel and I'll give it a go and see how you feel. As soon as I begin he closes his eyes in the way he does when Marina gives him a head massage, his face and limbs softening back into the chair. When I stop his response is unambiguous. Slowly and deeply he inhales, and then he exhales in a long, drawn-out sigh of undeniable relief, his face and body now completely relaxed. It is a sweet sensation, giving him this pleasure.

As a small boy Miles was prone to ear infections and the doctor would prescribe a particularly vicious-tasting bright orange antibiotic. He made a great fuss on first tasting it, said it was disgusting and it would make him vomit. But I insisted fiercely and the matter was closed. Having been overruled he accepted my authority and then stoically and meekly took the medicine three times a day as he was meant to. Some years later he confessed he had poured the medicine down the sink when I wasn't in the kitchen and refilled the bottle with orange juice. How we laughed then and how happy it makes me now to think of it, another scrap to add to my album of memories.

Summer has come round again. It is a beautiful sunny afternoon and the luxury of the gardens at Putney is being appreciated to the full by residents and visitors alike. Marina and I are sitting on a bench in the rose garden with Miles next to us. He is asleep and we have positioned ourselves behind him in such a way that we can't be seen staring at two people occupying the bench nearby. It is Jack and his father, and Jack has just begun to speak. We are feasting on him, on the stiff, halting movement of his mouth and the intensity of his expression, and we're also feasting on the look of rapturous happiness on his father's face. Our voyeurism, our envy, is a wretched thing, but we can't stop ourselves.

Jack came into the ward some months after Miles. Skateboarding on a London pavement, he was struck by a lorry that had mounted the kerb and it threw him into the path of an oncoming car. There is a look about him of Miles, perhaps his longish face and dark hair, or perhaps just his youth and because Miles also liked skateboarding when he was younger; Jack probably snowboards too and I imagine they would have things to talk about. At first, on arrival, he appeared to be PVS, his face completely blank, unmoving, his eyes black and unlit. His mother accompanied him with the angry, haunted look I understood. But gradually his eyes began to lighten until their expressiveness became a shocking thing to witness – you could literally
see
that he was trapped inside. We can't get that from Miles because of his damaged sight, a major pathway to the brain lost; it is somehow an insultingly unfair cruelty in the circumstances.

Some time passed after Jack's eyes regained expression before he began to speak. I imagine the moment when his parents heard him say the first words. I indulge myself, imagine the pure, heart-leaping joy of watching Miles emerging from his tomb of speechlessness.

Jack has succeeded where Miles has failed. I am ashamed to admit my envy, and my shame: envy of Jack's family, shame that Miles hasn't made it, like Jack has. But it is more complex than that. Even the fact that this has happened to Miles at all is somehow a failure – we have all failed. We have failed to help him, to find a cure for him and he has failed to achieve the future he deserved. Our love can be no consolation. As Marina and I sit together in the mild sunshine with Miles asleep next to us, we talk about it, understanding each other. Who else could, who had not experienced the same thing? How can one explain the disgrace, in these circumstances, of feeling competitive, ashamed, envious?

Sarah, the young Australian physio treating Miles, understands, in a way. When I arrive one morning she asks me if I know a friend of Miles's called Angus. I can't think of anyone. No, I reply. Why? He came to visit Miles yesterday, she says, and he was strange, unlike the other friends that come. She clearly feels reticent about telling me more in front of Miles. So we go outside his room and she tells me that Angus was agitated, nervous meeting her, then gushingly emotional as he saw Miles, knelt down in front of his chair and tried to hold Miles's hands. I thought he might be stoned, she says, he was so weird and jittery, but arrogant too. He told Miles how upset he was seeing him like this. He remembered Miles at school, his success, the promise his future had held and he prayed for him. Miles tensed up terribly, she continues, he didn't like it and was obviously distressed so I had to ask Angus to leave. I hope you don't mind? The thing is, she said, I got this awful feeling – he had come to see how the mighty have fallen.

I am very grateful to Sarah for protecting Miles. Looking in the visitors' book we keep in his room, I see that Angus has left a message and now I remember him: he was at school with Miles. They weren't particularly close friends and have not seen each other since. He was exceptionally gifted at sport, the school's star sportsman, but they competed academically.

As a family, we made the decision at the beginning that we would only allow very close friends and colleagues to visit Miles. We all felt that in the same situation that is what we would want and, more importantly, knowing Miles, what he would want. Being with him is an intimate experience. He is vulnerable; so much of his condition makes humiliation possible. He coughs, he chokes, he has to be suctioned, his conveen can leak and soak his trousers, he can't control his movements. If he is in pain his distress is pitiable. Who would want, then, to be exposed to someone one doesn't know well?

Angus has left his number in the visitors' book and I call him. I don't want to assume a negative motive for his visit – indeed I have no reason to – but I don't want him to go again. I tell him about the family's decision, that we would like people to contact us before visiting Miles, that his situation is very painful for him and that for the time being, until he is better and can tell us who he would like to see, we wish only his close friends to visit. I understand Angus and he have not been in touch for some years. I thank him for his concern for Miles but hope he will understand if I ask him not to visit him again until I can ask Miles's permission. He does understand. Thank you for being so gracious, he says. I appreciate your kindness.

I am thrown by that word gracious; have I been unfair? But what can I do except rely on my instincts? Sarah said Miles was distressed by the visit. That is all that matters.

One of the hardest things for us about Miles's situation is the indignity his life has been reduced to. Certainly the indignity of being doubly incontinent cannot be adequately imagined. Miles wears a nappy, a mocking replica of the miniature ones babies wear. The nappy is to collect faeces; when it is soiled he must be washed and changed by the carers. For urine a rubber conveen is placed over his penis, as a condom might be, but in this case it is the upper end of a long tube that leads out of one side of the nappy to a bag attached to his leg with Velcro straps. The urine bag must be carefully monitored and I have seen another patient in a dreadful state after his bag filled and there was nowhere for the urine to go.

Quite frequently the conveen slips off, discovered only when Miles's trousers and chair have become soaking wet. The cover of the wheelchair seat is dark grey and if his trousers are dark too, it's not immediately apparent. But we have learnt to recognise the look on his face or the movements he makes to indicate discomfort, the latter usually by an involuntary raising of his leg as it causes his spasticity to increase. It is a nuisance for the carers – they have to take him back to his room, hoist him out of the chair and on to the bed, change his clothes and wash him before dressing and re-hoisting him back into the chair.

I think about the time when Miles was at primary school and there was a little boy called Ted who suffered from a rare degenerative disease. He was small and delicate, his movements severely unco-ordinated and his speech slurred so that it was difficult to understand him. The class was small and the teacher a beautiful fey young woman whom the children loved, wrapping themselves in her long skirts whenever they needed comfort; she understood and delighted in their differences, allowing no pressure to intervene in the business of being a small child.

One day when I collected Miles after school he was quiet and remained preoccupied as we walked home. Usually the walk was a tumble of stories from the day in between climbing walls and leap-frogging over bollards or racing with the other children, but today he walked silently, holding my hand. When we got home and I closed the front door he burst into tears: Ted weed in his chair and it went all over the floor and everyone laughed. It was horrible for Ted, it wasn't fair, Mama, he couldn't help it. Will the doctor make him better?

Ted died a year later. I didn't know his mother well and was surprised when, seeing her in the street and wondering what I could possibly say to her, she came across to me. You're Miles's mother, aren't you? she asked. I said I was, and how sad I was to hear about Ted. I felt awkward; I remember thinking, and then saying to her, that I couldn't imagine anything worse than losing a child. She waited for me to finish and then she said, I've wanted to speak to you because I wanted to tell you how kind Miles was to Ted. He told me that Miles always protected him when he was teased by the other children. I'm very grateful to him for that.