Beyond the High Blue Air (11 page)

One morning when I arrive on the ward he calls out excitedly before I can get to Miles's bed, Miss, Miss, Miles is talking! I heard him talking last night! I was so happy for you. For a wild moment the whole world tilts and lifts and I am flying to Miles. He can speak! Nothing will matter any more now that he can speak – however slow his recovery might be, he will be back with us and can tell us what he wants, what he feels . . . What did he say in the night? Did he call for us? I can ask him! As I reach Miles's bedside the physiotherapist who is attending to him gives me a look that tells me everything. No, it's not true, it's just George's imagination and he's not quite right in the head.

The physiotherapist finishes her session and takes her leave. I want to be alone with Miles, away from everybody. I want peace, and silence, just the two of us. I'm tired. I'm so tired of negotiating people. But here is George, standing awkwardly in front of me. There are tears in his eyes. I'm so sorry I made that mistake, Miss. I was sure I heard him speak, but I think it must have been someone else. I'm really sorry. It's a dreadful world. He looks so forlorn, this big man with his crushed face, that what I feel for him could almost be love.

Two days later George absconds and is found by a nurse sitting in the sunshine on a bench in the square outside the hospital, drunk. He had got some beer – how, in his pyjamas, nobody knows. The nurse brings him back up to the ward and he glowers like an insolent schoolboy at the ward sister as she admonishes him. You are not here for fun, George, the ward sister says sharply, and you know very well that you are not allowed to drink alcohol because it will prevent your recovery. I will have to tell the doctor that you have disobeyed his instructions. Now go to bed and sleep it off. George sulks for the rest of the day, does not co-operate with the nurses or therapists and growls at Hussein, the patient in the bed next to him when he does his choking cough, George blocking his ears with his fingers like a child.

Two days later he absconds again but returns this time of his own accord. He walks past the nurses' station in an elaborate weaving diagonal. It could be funny but the nurse in charge, a stern, grey-haired Jamaican woman, comes out from behind the desk and reprimands him forcefully. George lifts his head up in a swinging movement that almost takes him off balance. Fuck off, he says, I don't have any black women tell me what to do. Right, my boy, she says. I'm reporting you to the ward sister. Well, you can all just fuck off the lot of you, he retorts.

After some time the ward sister arrives, together with the Jamaican nurse, and the curtain is drawn around his bed. I can hear George swearing and the ward sister calmly and firmly discussing with him what I imagine are administrative discharge procedures before the curtains are drawn back and the nurses leave. He is sitting hunched on the bed, crying. Despite his shameful and deeply offensive behaviour, he cuts a pathetic figure. I go over to him. Are you all right, George? I ask. He looks up at me with his blood-shot eyes, fearful, confused, a feral creature that has finally been cornered. Miss, he says, what can I do? I have nothing. I have nowhere to go. I ask him if he has family he might go to. He shakes his head. No, he says, looking down at his hands, no, never. I never did.

How can this be, this pain of living? I get my handbag and, hoping he won't find this patronising, I give him all I have in my purse, which is only a £
20
note and some coins. I'll miss you, George. A nurse arrives to escort him out and he leaves the ward.

I will miss him. Miles would understand.

The truth is, we do believe Miles is trying to speak. When we are talking to him there are times when he will begin to respond by moving his mouth in what clearly looks like an effort to reply. On a few magical occasions we hear a whisper, his expression intense with the effort of it. Yes, yes, Miley, we urge him then, come on, you're doing it! You're doing it! We can hear you! Keep going! The whispering sounds continue and we listen intently, but they are indecipherable, he cannot frame the words. Eventually, exhausted, he closes his eyes and sinks back into himself, away from us.

The occupational therapist has advised us that we should only make one request of Miles during each visit. Give him time to respond, she says. The sheer difficulty for Miles of co-ordinating his movement or trying to speak will be exhausting, and too much at once would be overwhelming. It is difficult to hear this advice: Miles who, as his friend and colleague Jason described him, had the problem of being talented in so many directions it complicated his career choice. His energy, too, was a defining characteristic; now fatigue is yet another chronic side-effect of TBI to undermine him.

We are all beginning to notice a change in Miles's mood. A lot of the time now his eyes remain firmly closed when he is obviously awake and his jaw is set in a way I recognise, an indication of his deep frustration, if not anger. He doesn't seem to be making the same effort to respond when we try to engage with him, even when we know he is awake and listening. I think he's depressed, though that seems too facile a description of what he might be feeling. I mention this to the neuropsychologist and expect him to be sceptical of my oversensitivity, but he understands. He says it is entirely possible, but the problem is that treatment by anti-depressants might mask any possible awareness by slowing his responses even further. He will monitor Miles, but as he only sees him once a week he suggests we keep a record of his mood. I am touched by this humane young man, probably the same age as Miles, who talks to Miles and treats him with such quiet respect. I ask him about my greatest dread, that if Miles does suffer real depression he might give up this gargantuan struggle altogether. Central to my dread is the danger that by making either too many demands of him or, worse still, the wrong demands, we may be the instruments of his withdrawal. Has that ever happened? I ask. Yes, I have seen it happen, the neuropsychologist replies. It is a very real danger that overstimulation can cause a person to retreat, to give up the unequal struggle. We must never forget how difficult even the smallest physical action is for someone who has suffered a traumatic brain injury, how vulnerable the person is and how delicate the recovery process.

Miles's recovery is the thing I yearn for most in the world; how terrifying that I could unwittingly impede it. I have been reading everything I can find about the brain and brain injury and yet there is still so much to learn.

When I arrive on the ward today there is a woman I have never seen before sitting in a chair at Miles's bedside, reading to him. He is lying facing her with his eyes closed and I can't tell if he is asleep or awake. The woman is middle-aged, greying hair pinned up in a wispy bun and wearing a long skirt, sandals and trailing scarf; she's definitely not a member of staff. She doesn't notice me approaching and continues reading, leaning forward in her chair and I can hear her enunciating the words clearly in an elaborate nursery-rhyme voice, as though reading to a very young child. I'm surprised by the proprietorial air with which she frowns on seeing me, closing her book with her finger in it still marking the place, a look of irritation as though I'm interrupting an important session with Miles. Hello, I say, I'm Miles's mother, Lu. I saw you were reading to Miles? She remains seated but now shuts the book, which I notice is
Charlie and the Chocolate Factory
by Roald Dahl. Gracious, I see you've chosen Roald Dahl. I wonder why you think that would appeal to Miles? The shock I feel is visceral; how
dare
she read that to him.

She stands up and faces me with an expression of resigned exasperation. I've been doing this for some years now, as a volunteer with my local drama society which provides readers in hospitals. I always read well-known children's books in this ward because I think that is particularly relaxing for the sort of patients to be found here. She looks at me challengingly and I'm aware of a stand-off existing between us, each pricklingly hostile like two teenage girls competing over the same boy. Maybe I should be showing gratitude that this woman has given her time to entertain Miles, but I am ice-cold with fury that she should have been reading him a children's book, infantilising him in such a cruel way. If he's awake, what conclusion could he draw from it? How demoralised must he feel? What does he think has happened to him? Thank you, but please don't come and read to Miles any more, I tell her. He has a lot of family and friends and we will choose the writers we know he likes.

She turns to say goodbye to Miles but not to me and leaves. Oh god, Miles, was I really rude to her? How ridiculous that she was reading that book to you, especially when I know how you always disliked Roald Dahl. I want to howl with misery, with hurt anger and shame and the deep, cold dread that Miles has been patronised by a stranger. To see him through someone else's eyes as having been reduced to a child by his brain damage. Miles! Miles, of all people.

When Miles has been at the ABIU almost eleven weeks I have a meeting with Dr Stephenson and it is not unexpected when he tells me Miles will have to move on. By definition, the Acute Brian Injury Unit is for acute cases and patients are never expected to remain for more than eight to ten weeks at most. Miles is no longer acute and a place has become available for him at Putney. I know it is not where you wanted him to go, Dr Stephenson says, but Miles is now at the stage where he needs long-term neuro-rehabilitation and Putney has some of the best available facilities for that. I hope Miles will respond well to being there. Please don't hesitate to get in touch with me if you have any concerns.

However kind he is, it feels like a death sentence: The Royal Hospital for Incurables. Though the name has changed, the meaning for me has not. But at least, I think, at least Miles was given a chance and he is in a very different place from where he was when he arrived at Queen Square. Then he was still in a coma; now he has had ten weeks of progressive therapy. He had the best treatment he could possibly have had at the time, and there are eight months left in the vital one-year prognosis deadline. We can still maintain hope for recovery, whatever it may be.

IV

It is the end of July, the hottest day so far in an already hot summer. The ambulance has been booked for early afternoon, which gives me time to pack up Miles's things. I empty his bedside locker, the books we tried and didn't succeed in reading to him, the bottle of essential rosemary oil that was said to be an agent for awakening, the tiny glass phial of holy water from Lourdes given by our beloved Irish cleaner and some-time nanny Dorrie, who loves Miles like a wayward son. He sleeps in his chair as I move around him, collecting everything together in his overnight bag, the old canvas one I remember him stuffing his things into so decisively whenever he packed. It doesn't take long to finish and then it is time for the final farewells. I have been doing this piecemeal over the last few days, catching, whenever they are on duty, the nurses and therapists who have made a special connection with Miles, to thank them with a gift and the hope that we may meet again, though we know we won't. The loss is ours, the family's, too; we must brace ourselves to be Miles's spokesmen afresh, to try to make people understand anew the person that was Miles before this terrible thing happened to him.

We will be setting off within the next half hour – to what? We may as well be stepping off the edge of the world. His time in the ABIU is over, and although every day we might have been inhabiting a nightmare, it had become, at least, a familiar one. I trusted the hospital and the neurologist in charge. I know nobody at Putney, I don't know anything about it except its enormous, grim façade. We will arrive, the two of us, like strangers to a doomed planet.

The ambulance arrives. I follow Miles on his stretcher up the ramp, together with Grace, the nurse who has been deputed to accompany him and do the handover. I've never been in the back of an ambulance before. A small square window at the top on one side lets in light and it is already stifling hot even before the doors are closed. Miles's stretcher is battened to the floor, Grace and I strap ourselves into our seats, the back doors are closed and a few minutes later we set off. There is a strange sense of disembodiment being contained like this, feeling the motion and hearing the sounds of traffic and the world outside, but removed, invisible. The same as a prison van, I imagine. Miles is already sweating, as am I, the heat beating in through the metal sides. Grace is not sweating and looks ebony cool as she tells me how she likes this heat; she comes from Sierra Leone and always dreads the arrival of winter in England.

The journey takes an hour. I cannot imagine why the suspension in an ambulance is not considered more of a priority; Miles is thrown about by bumps and stops and around us things rattle and slide alarmingly. He is tense now, his eyes wide open, his body on full alert I can see. Grace is gentle with him and we talk a little about our lives in the intimacy of the moment. She reveals that she took up nursing when, aged sixteen, she lost her only brother in the war in Sierra Leone, and I am moved to tears by her story, ashamed at my self-absorption. Eventually we feel a long slow stop, followed by the bang of doors as the ambulance men disembark from the front. A heavy scrape of metal, the back doors are opened and we are let out into the glaring afternoon sun. We have arrived at Putney.

The ambulance driver and his assistant set off with Miles, directed by the uniformed porter at the entrance. Grace and I follow as Miles is wheeled down the long corridor that I and the children will come to know so intimately, a corridor that smothers the soul before you have even reached your destination, so long is it, the air so heavy with dread, the people one passes so heartbreakingly damaged. Occasionally I catch a glimpse of long green-lawned gardens, spacious outbuildings and wide leisurely paths; it could be the grounds of a grand country hotel except that the residents are all in wheelchairs. There are no guests here.

Taking a lift up to the first floor we follow the porters down yet another bleak corridor before we reach our destination. A large square room appears to be the centre of the ward. It is muggily hot, sunshine streaming in through three big windows along the far wall, none of which, I notice with surprise, is open more than a few inches. There is a nurses' station immediately on the right and beyond it I can see a semi-circle of about twelve men and women of differing ages, all in wheelchairs, fanned out around an enormous television. Next to the television stands a blackboard with yesterday's date written on it in large white chalked letters and a picture of a smiley yellow sun. On the TV screen a picture flashes and jumps, accompanied by stalling gobbets of sound; whatever is showing is indecipherable. They must be having a problem with the reception and I wonder how the audience can tolerate it.

It is only then I realise that every one of the people sitting there is more seriously brain-damaged than anyone I have yet seen. With mounting dread I scan their faces. Some are blank, gazing out, calm in the way of something un-anchored, floating free; others are contorted with tics and grimaces, as though engaged in a harrowing internal struggle. A young man is gazing at me, through me; he is magnificently handsome, tall and dark, as erect in his chair as a soldier, and half his skull is missing, a concave hollow of sunken skin. I don't know which circle of hell this is but I want to grab Miles's stretcher and wheel him away as fast as I can to somewhere where we can be quiet and on our own, away from the horror of being witness to all this suffering. I don't want him to witness it and to realise he is a part of it. If I take him away he can never be part of it.

But a nurse is pointing out his room. It leads directly off the day room with a sliding door and it is so small that Grace and I must wait outside while the porters transfer Miles from his stretcher to the bed. When they wheel away the empty stretcher and Grace leaves with them I have the sense of Miles's tenuous lifeline to Queen Square being finally cut. He is adrift now; not a soul in this huge place knows him. Wide awake after the journey and the rolling and sliding from stretcher to bed, what is he thinking? He looks tense, his arms clenched. The young nurse who showed us the room left with Grace and nobody else seems to know we're here. I am tense too, I am adrift with Miles in a new place of such acute misery and loneliness I fear I might go under. How can Miles bear this loneliness? I will go home this evening, see Ron, the children, explain and be comforted. Miles will remain here, alone. And I don't know how to deal with this.

Eventually a nurse comes into the room. She is the ward sister, a crisp, elegant Filipina with a soft American accent. She introduces herself and when she begins to take Miles's obs, the sound of her voice explaining the procedure – Hello Miles, I'm Erica. I'm going to take your blood pressure now – is calming for us both. She notes the details in a file that she leaves in a holder at the end of his bed and tells me that the ward doctor will be coming to see Miles shortly. She exudes a quiet, unhurried confidence and her cool demeanour is soothing in the oppressive heat of the room.

For the room is like a greenhouse. It faces west, and as it is now mid-afternoon the sun is pouring in through the one window which takes up most of the outside wall. When I try to open it I find it is locked to allow only a few inches' opening, the same distance as the windows in the day room. With disbelief I wonder whom the authorities fear is going to jump out of these windows. None of the patients is capable of it. Maybe someone once tried, a relative maddened by the claustrophobia of the place; whatever the reason it makes it feel even more like a prison. It is not yet the end of July, and August is forecast to be even hotter than it is now. The room will be unbearable.

There is a basin in the corner and I run the water for some time before it feels cold. We will have to bring ice packs in when we visit, I think, but for now I wet some paper towels to cool Miles down. He closes his eyes as I place the folded wet towels on his forehead and I talk to him, telling him again where we are and describing his new room to him. I tell him that a doctor is coming to see him, that this is a cutting-edge rehab hospital, repeating myself. I hope he believes it; I want to believe it. But as I look up through his open door into the day room beyond I could be witnessing a conference of the damned.

Some long time later the doctor arrives. Before Miles left Queen Square Dr Stephenson had suggested I flag up right from the beginning that we would like to provide extra therapy for Miles if it is possible. After we've made our introductions I mention this. What do you mean? asks the doctor. Well, treatments like acupuncture, for example, I answer. All the patients' relatives feel the same, he says. Everybody wants the best for their own relative. He hasn't answered the question and I feel strangely demeaned, as though I've stepped out of line. I don't yet know the rules here.

As soon as he is able to, I want Miles to come home and live with us. I'm apprehensive about mentioning this to Ron, for I'm under no illusion that until Miles has recovered sufficiently it will dramatically change our way of life. In the event Ron raises the subject before I do. We should think about where Miles will go once he has been stabilised at Putney, he says. We could consider altering the house to accommodate him – it wouldn't be impossible. Relieved and grateful for his generosity, I begin to make plans. A friend who is an architect comes round and by the end of his visit it all seems straightforward. Miles would live on the ground floor, the drawing room made over into his bedroom and the small sitting room next door converted into a wet room where he could be trolley-showered. It is directly under our bathroom upstairs, so the plumbing could easily be achieved. We would make the kitchen our family room and convert the basement to provide accommodation for carers.

I'm acutely aware of how privileged I am, both that Ron is prepared to accept such disruption and that we have the space and can afford to make the changes. I was privileged to be able to stay in Innsbruck for six weeks; now that I'm back I can afford to dedicate my days to Miles. Ron has cushioned me from the practical burdens that so many people in my position have to endure. The knowledge that Miles will be able to come home relieves me of a major anxiety; I have a sense of having rolled away an enormous boulder blocking the path ahead.

Every day at Queen Square Miles spent some hours seated in a wheelchair, as he did in the last weeks at Innsbruck. I have learnt that it is a crucial aspect of his rehabilitation, helping to alleviate spasticity and the risk of bedsores as well as keeping his chest clear by being upright. It is easier to cough sitting up and luckily Miles has a strong cough reflex, but chest infections are a constant danger for unconscious and bedbound patients. He was also given splints to wear on his legs and arms to combat spasticity, to prevent muscle contraction and ensuing joint deformity. Now I discover that at Putney he will not be placed in a chair for the first three weeks during what is known as every new patient's ‘assessment period'; nor will he wear the necessary splints, which apparently here take two to three weeks to be provided. One of the basic tenets of neuro-rehabilitation is that it is important to be proactive from the beginning rather than have to deal with secondary changes later on. I don't know who to turn to, and call the Queen Square head injury nurse for advice. She is as shocked as I am, says that if he remains in bed that length of time all their hard work will be undone. Miles's admission notes from Queen Square gave details of his daily therapy. I don't understand why they haven't been acted on and take the matter up with the physiotherapist. I understand it is difficult for her, because she is constrained by the hospital regulations. In the end I tell her that if necessary I will look into getting a wheelchair myself for Miles. He cannot be left in bed for three weeks; apart from anything else, it will be hugely demoralising for him.

It is the second day and I realise that I am probably marked now as a difficult relative. A young speech therapist comes to examine Miles and hearing the end of my conversation with the physio she is conciliatory. I clearly need soothing. It's a beautiful day, she says, why don't we go down and have a cup of tea in the garden and I'll show you the grounds? Sitting on a bench in the sunshine she explains the standard arrival procedure for new patients. You mustn't be concerned about it, she says. All the patients plateau for the first few weeks after arrival, sometimes for months, and they can regress. But then they will start to go forward again. She tells me this is a necessary part of the very thorough assessment procedure they have, but I have not been soothed. It seems to me frighteningly complacent.

Eventually Miles is ‘fast tracked'. He gets a chair in twelve days and splints in ten. In the meantime his spasticity has increased and he has developed a chest infection from being immobile, which must be treated with antibiotics. His mood is bleak and we fear he is retreating.

Miles is being put to bed and I am waiting, as one of us waits every evening, to make sure that he has been comfortably positioned for the night. We sit on the sofa of the day room while two carers wheel the portable hoist into his room and close the door behind them. It takes about thirty minutes and if Miles is lucky the process of hoisting him out of his chair to swing him onto the bed, remove his leg and arm splints and then his trousers, change his sanitary pad, empty the urine bag, wash him and clean his teeth before positioning him for the night will all be carefully and gently done. Otherwise we must endure the sound of Miles's groans or more often the long drawn-out roar that has become his signature sound. That's Miles, people on the ward will say, hearing it from afar. He's certainly got a good pair of lungs, the father of a patient in the next ward said to me, no doubt trying to cheer me up. It is a sound that reverberates through me. I hear, I feel, his anger, his humiliation; I want to roar with him. And I am ashamed of myself, because I am embarrassed by the noise, by the exhibition he is making of himself; I am ashamed on his behalf and also, sickeningly, on my own.