Beyond the High Blue Air

by Lu Spinney

  When we arrive the therapist is already with Miles. She has drawn up a chair next to his wheelchair and with relief I see she has managed to engage him. He is facing her and listening intently, his eyes, though unfocused, directed at her, his body quite still. She has been introducing herself to him, she tells us, and explaining her goals. Her voice is calm and devoid of the ubiquitous sing-song tone that so many people adopt now in talking to Miles, as though he were a small child, that tone which is for us, as it must surely be for all relatives in this situation, one of the most painful and infuriating side-effects. She sets up her first, basic piece of equipment, which is a large flat round button placed in front of Miles on the tray of his wheelchair. A bell rings if it is fully suppressed and she presses it to show him, explaining that he should press it for yes and do nothing for no and apologising in advance for the infantilising questions with which she will have to begin. Is your name Miles? Watching silently we are as tense as NASA scientists waiting for confirmation that an astronaut has survived a moon landing. With excruciating slowness Miles’s thumb begins to move over the button but then stops. We have been asked not to make a sound and the effort of holding back encouragement is agonising – Come ON, we want to shout, keep going, keep going, keep going, push DOWN . . . His thumb starts to quiver and move again and then I realise: this is as difficult for him as rolling a giant boulder away from the mouth of a cave, that a gigantic physical effort is required for this one tiny movement. Now the quivering is growing in intensity, the whole hand is shaking and then his thumb goes down and the bell rings and we can’t help shouting out, Yes! You did it! You did it! Brilliant, Miles! He understands. There is no doubt.

  By the end of this first short session he has managed to press the bell correctly six out of ten times. When the answer to a question should be yes and there is no movement our silence is now an agony of vicarious effort. However difficult the movement is for him, in order to lift him out of the diagnosis of no hope there needs to be evidence that he can consistently respond. But today is only the beginning and we have the hard proof that he understands; we have felt it intuitively but, most importantly now, the therapists have proof.

  The session ends and we stay on. You were amazing, Miles, Will says to him. You’re the most determined person I know and if anyone can do this, you will. You were incredible, dude. Miles slowly closes his eyes. I take his hand and tell him how proud I am of him too. We could see how difficult it was for you, but you did it, as you always do. Our words fade into the silence. What is he feeling? Are we saying the right thing? It’s time to leave and as we say goodbye and leave the hospital I link my arm through Will’s in a confusion of tears. This is like being drunk with hope, I say, and Will agrees. He really did it, Mum. It was quite clear – he’s there, he showed them.

  We do not know it yet, but this sets a pattern that will continue. Miles undoubtedly is conscious and sometimes understands, but how aware he is and to what degree he understands, nobody can be absolutely certain. We must learn to calibrate the meaning of his moods, expressions, body movements, learn to read the new language that is all we now have. It is difficult to explain how we interpret these signals, for it is a mixture of our knowledge of, and familiarity with, Miles and our intuitive reading of his expressions and movements. Added to these there are the normal interpretative skills used in any social situation, discerning whether someone is friendly or hostile, sad or happy, comfortable or in pain, social skills that are taken for granted. We know we face the scepticism of some doctors and therapists, and the anger this generates is so wounding that we take the decision never to discuss our interpretation of Miles’s awareness unless it is with someone trusted. When we encounter those few who look past Miles’s brain injury and read the person behind it our gratitude is overwhelming.

  Twice a week Miles is put on the tilt table. I remember reading Jean-Dominique Bauby’s description of himself in The Diving Bell and the Butterfly as, immobile and tethered to the inclined board, he evoked the appearance of the Commendatore’s statue in Mozart’s Don Giovanni; I remember, too, finding the idea painfully moving, that a grown man should have to be tied to a board in order to be held upright. Now I watch as two physiotherapists start by sliding a strong nylon sheet under Miles, like the waterproof ground sheet you might use in a tent when camping, and then together they pull it to ease him across from his bed onto a large board on wheels aligned horizontally with it. Once there, he is strapped to the board before it is slowly raised to a more or less vertical position, the angle of upright tilt that he can support being carefully monitored by the physiotherapists. The goal is for him to stand at 90 degrees for a period of time, but the angle will vary depending on his heart rate, oxygen levels and general level of comfort. Apparently being upright is good for his circulation and for his lungs and as the tilt table is weight-bearing it helps, I am told, to loosen his joints and break up the rigid muscle tone. I just think it must be good for the soul, to be held up and out of the perpetual confines of his bed or chair.

  The first time he used the tilt table I worried that he might feel faint or giddy but he appeared to enjoy it, his face relaxed and his eyes wide open. Standing next to him today he is, wonderfully, once again as he should be, taller than me, and today the physio takes his hand and says, Miles, I’m going to place this on your mum’s head so you can feel her hair. She moves his hand slowly up and down through my hair and then rests it on my cheek and we all see it, the faintest lift on one side of his face to a look of such sweetness I must fiercely hold back the tears. I don’t want him to feel them run down over his fingers.

  As part of his research into the book he was writing, Miles had been attending the classes of a Chinese teacher of chi kung, the Chinese martial art. The teacher, Li Hu, also practises a form of Chinese healing and he has asked if he may visit Miles. I know from Miles that the work he does is serious and that he returns to Tibet frequently to a Buddhist retreat where he also practises.

  We arrange to meet in the hospital entrance. I could not have mistaken him, his manner and his bearing as he crosses the hall towards me one of extreme self-containment and reserve; he could be a Buddhist monk. His face is expressionless as he greets me with a bow of his head. I will follow you to Miles, he says. We walk in silence along the corridor to the lift and wait in silence until the lift arrives. I’m slightly apprehensive now and feel I need to explain something of Miles’s situation, to prepare him. He listens as I speak and then says, When Miles came to me as a new student I did not need to teach him. He understood already. His soul is old. Nothing more; he doesn’t commiserate or refer to what I have been telling him.

  Miles is asleep when we arrive, seated in a wheelchair next to his bed. Do you need me to wake him? I ask Li Hu, but he says no, it is enough that he is here with him. Drawing the curtains around the bed I tell him I’ll be back in ten minutes or so and leave. As I walk down to the canteen for a cup of coffee I’m trying to contain the vivid, rising excitement that has drowned out my earlier apprehension. Li Hu is a healer. Miles respected him. Maybe he is the person who will be able to reach through to him. Maybe he can perform a miracle. Maybe . . .

  Returning to the ward I tentatively enter the curtained cubicle of Miles’s bed. Li Hu is standing facing him and Miles is staring back, his eyes burning with a strange fierce light while his whole body is trembling and juddering uncontrollably, his head jerking from side to side. I’m horrified and bend over him, Miles, are you all right? What’s happening? It is his chi fighting to stay here, Li Hu replies calmly. Miles wishes to stay. He is very strong, but his chi has been damaged. We must wait for the outcome. I take Miles’s hand and try to soothe him; I’m so frightened by this state he is in, but I feel as though I’m intervening in something beyond my comprehension, that I should leave this to Miles. I have seen him in this state once before, though with his eyes still closed, some weeks after his accident. He had come out of an MRI while he was still in t
he coma and had just experienced the dramatic electronic thudding of the apparatus imaging his brain. Miles, you are going to come through this. You will stay with us. Li Hu watches me. We wait in silence as Miles’s trembling gradually begins to subside until finally, exhaustedly, he closes his eyes.

  Li Hu gives me some sheets of paper that he has drawn on and tells me to place them above Miles’s bed. They are to strengthen his chi, he says. Weird shapes and swirls that mean nothing to me, but I will put them up. Something powerful has taken place here today even if I don’t understand it, and Miles respected this man.

  I am conscious that my days now revolve around seeing Miles. Although Ron has not referred to this in any way, I don’t want it to compromise the time I have with him. Miles is settled at Queen Square and when I suggest that Ron and I take some time away, a long weekend, the children are encouraging. You need time on your own together, they say, we can take care of Miles, and they immediately arrange a rota of seeing him so that there won’t be any day when he doesn’t have a visitor.

  We will go to Paris. Friends have kindly offered to lend us their apartment there, which means we will be on our own and self-sufficient, easier than having to face the other guests in a hotel. Leaving Miles behind is more painful than I imagined. The idea that a sea lies between us fills me with fear, the sense of sheer physical distance and of my helplessness. I feel I need to be there with him, to oversee his care, though in truth I know the children will give him just as much comfort. I don’t want to discuss the strange sense I have of dislocation, of homesickness, with Ron; I know I must not let Miles intrude on this time we have on our own.

  And now we are here, in this tiny apartment on the Ile St-Louis. The bells in the church across the road are tolling the 6pm mass. Next to the graceful seventeenth-century church, the only one on the island, there is an infant school and the children have just been released for the day so that the sound of pealing bells is accompanied by the tinkling cries of children. Parents are assembled in the street to collect their children and from my window sill up on the third floor I watch a young mother waiting with stylish nonchalance astride her bicycle, one foot on the ground, slim jeans rolled up, long dark hair tied back casually, a small blond child in a bucket seat behind her. As her elder son comes out of the gates she waves and sets off on her bike and he runs alongside her down the street, passing her one of his satchels which she takes from him and slings over her shoulder, one hand resting on the handlebars. I think of Miles at that age, for it seems to me he ran just like this boy, purposeful and energetic.

  I lived in this city a long time ago as a girl of twenty and it is where I began and lost my other first child. Never a real one to me, a child shared with my gentle French boyfriend, Serge, and aborted clandestinely at seven weeks by an off-duty nurse in her home in the suburbs of Paris. I wasn’t curious or confident enough to ask whether she did it for money or on principle, abortion being illegal in France and other Catholic countries at that time. Serge was an art student and it was inconceivable that we could support a baby; I was certain it was kinder not to bring it into the world.

  We travelled by train early one evening to the end of the line and walked down the grey streets to her house where she was expecting us, despite holding a cocktail party. We rang the doorbell and were let in by her husband who looked knowing and asked us to wait in the hall. As we waited we listened to the guests getting into their swing until a small woman in a tight black dress appeared and asked me to follow her down the corridor. I lay on a bed as she performed her rudimentary procedure. Wait a few days, she said, and the baby will pass. We paid her and she waved us off briskly at the door. Returning to her party, her absence would have been so fleeting it probably went unnoticed.

  The baby never did pass and eventually I had to go to a doctor. Living as I did in the haut bourgeois arrondissement of Passy, albeit in a bedsit, the doctor was elderly and aristocratic and shocked by my naïvety. Did I not know how dangerous and unscrupulous backstreet abortionists were? Had I not used a contraceptive (I was so foolishly naïve it hadn’t crossed my mind). It was impossible, this overlap of the new sexual liberation in a secular state with laws that were still framed by Catholicism. Medicine should be intended to take care of people, not prescribe morality. He admitted me straight into hospital on the grounds that my health was at risk and performed a curettage. I have only two clear memories of this part of the story, one being the softly bearded, sympathetic male nurse who wheeled me down to the operating theatre and commiserated with me about how difficult it must be to lose a baby – until I told him I didn’t want it and the disgust in his face shocked me. The other memory is of unfathomable misery after I came round from the operation, which I put down at the time to the after-effects of the anaesthetic.

  Nine years later and married, I gave birth to my first, much-wanted child in London. I was twenty-nine years old, on the threshold of the unknown, deeply lived new phase of family life of which Miles was the joyful beginning. Twenty-nine years have passed since then. I’ve lived a full life, have had four children and am now married to a husband whom I love with the particular, intense fulfilment and intimacy that a happy second marriage can bring. Is twenty-nine years of conscious life all that Miles will ever know?

  The church bells have ceased their tolling. Stepping down from the window sill I realise Ron has been sitting across the room watching me quietly. Why don’t you tell me what you’ve been thinking about? he says. And so I do and when I finish I apologise. I’m so sorry, Ron, I really wanted Miles not to intrude into these few days. It’s not possible and it doesn’t matter, Ron says. What matters is how much I love you – nothing can intrude on that. He stands up and comes over to me and he takes me in his arms. I know, he says, I think of him all the time too. We can do this thing together. I am not alone; Ron understands even this. I’m aware of sounds drifting up from the street, the hum of people talking, a car door shutting, the soft, quick stutter and thrum of an engine starting. They are some of the everyday sounds of life in the city and we must go down and take part, we must celebrate these few days here on our own. Miles would want us to do that, I know.

  I am consumed by the need to understand what has happened inside Miles’s brain. Dr Stephenson is generous about this and one afternoon he takes the time to show Will and me the MRI that has recently been done. He talks us through what it tells him, reading the black and grey images on the screen as though they were text. It remains inscrutable to me, a pottage of shapes, but I can see the slight gap he points out between the brain and the skull. That gap reveals that the brain is already beginning to atrophy, he says, which happens following brain damage as it does in old age. The sight of Miles’s young, quick, sharp brain already beginning to shrink is so shocking and so harrowing a piece of news that I can feel my mind sliding away, I can’t retain it. Instead what I take away from the meeting is the reminder that no definitive prognosis can be made until a year has passed from the time of injury, which means there are nine more months in which he can recover, start to speak, return to us. Dr Stephenson says that if he does recover we should not expect him to be able to go back to work in the way he did before. But that doesn’t matter anymore; all that matters is that it’s still possible he will come back to us.

  Dr Stephenson also tells us that Miles will have no recollection of his accident or of the minutes preceding it. Of course; I have heard this before. How dreadful, how confusing, for Miles. Why didn’t I think of it? What possible sense can he make of where he is if he doesn’t know what happened to him on that mountain slope?

  The next morning Claudia comes with me to the hospital. Miles is in his chair, having already had a session of physio, and he is awake and alert; we have arrived on one of his clear islands of consciousness. The physical signs for this are subtle and we read them today just as a hunter might, observing a deer that has suddenly become aware of his presence. A slight movement of the head, body hel
d stilled, eyes turned towards you but holding their gaze somewhere in the far distance, on full alert, as though not seeing but listening is all. We read it subliminally; attuned to him as we are, the signs are clear.

  I tell Miles what Dr Stephenson has told me about brain injury and memory, and that I’m concerned that if he does not remember what happened to him he might not understand why he is here. It feels crucially important to stress that this is normal, my ever-present fear of alarming him or patronising him, that if I get it wrong he might fear he has lost his mind. Would that be worse than brain damage? For the moment it seems so.

  Claudia and I take it in turns telling him the story. As we mention St Anton and his friends setting off on the last day for the snowboard park we both see the shift of expression on his face, tense, as though he is straining to hear, not wanting to miss a word. Are we reawakening the earlier memories now? Suddenly I feel fearful. What effect will describing the accident have on him? If he cannot lay down new memories, is there any point? But surely worse still is never to know why he is in this state. Knowing Miles he would always want to know the truth. As I begin to speak, describing the moment his snowboard clipped the edge of the jump, he slowly closes his eyes. I must reassure him. Miles, please, please don’t worry. You are in one of the best neurological hospitals in the world under the care of one of the best brain injury specialists. You will recover. Everything is being done to help you. You will come back to us and we are all going to be with you, every inch of the way. All your friends are rooting for you. You are our formidable, determined, amazing Miles and you will do it. He opens his eyes again and neither Claudia nor I can bear to see the pain that is refracted in the unaligned green depths. We’re sitting either side of him and we both lean over to put our arms around him and we stay there like that for a long time.