Beyond the High Blue Air (8 page)

Ten days have passed when I am told Dr Stephenson is coming to see Miles. This is extraordinary, and our last chance, since as a consultant on the Acute Brain Injury Unit he may have the power to overturn the other doctors' decisions. I wait for him in Miles's room, sitting by the bed and explaining to Miles that an internationally acclaimed expert in brain injury is coming to see him. I want him to find this reassuring but I want him to perform too, to impress the doctor, to rise to the occasion. He has always risen to a challenge, but how can he now? I'm sickened by my desperation.

The door opens and Dr Stephenson greets me briefly before continuing straight over to Miles's bed. He is an imposing-looking man, tall, dark, the impression austere. He acknowledges the nurse but appears to have no need to assert his position with either of us. He introduces himself by name to Miles and then he watches him silently for some time before he begins to examine him. He might be a paediatrician examining a newborn baby, so gentle is his handling of Miles, his quiet, serious manner conveying a sense of profound respect for this mute, damaged young man under his care.

When he has finished he looks across at me for the first time; it is as though he had forgotten I was there. Could you tell me how you find Miles at the moment? he asks me. I am taken aback – this is the first time since arriving back in London that anyone has asked me for my opinion. I tell him I am surprised to be asked this, that I have not been asked before, and he says, It's very important. He seems surprised and disapproving, I don't know whether with me or the doctors who omitted to ask the question. Then he adds firmly that the close relatives of a person in this situation have the best understanding of the patient and the clearest idea of whether there is any response, or any change in response. It is a question I always ask, he says sharply, and I see the intimidating professor rebuking a student with one peremptory aside.

I tell him that in truth I don't know how Miles is, but that in the last few days the children and I have independently thought that he seems closer to the surface of consciousness, that there are small, barely perceptible signs of awareness. When we greet him each day there is now a slight flicker of movement across his face; for the first time we are seeing a glimpse of some dimly felt expression, as though he were trying to reach through to the surface. I imagine a sea of unconsciousness and tiny islands of awareness; some are too far away to make out clearly but others are closer, gradually coming into focus as we watch. It feels an intimate thing to be telling this reserved and clearly cerebral man, but then I narrate everything that has happened; his respect for Miles and his inclusion rather than dismissal of me have breached my defences. I tell him that from the moment of Miles's arrival here we feel no one has taken responsibility for him, or given us any constructive information, and that, crucially, he has not been receiving the regular physiotherapy I understand to be so important for his rehabilitation. At different times we have been given completely different reasons why he cannot go to Queen Square. I also tell him that if Miles hadn't returned from Innsbruck they would have been starting him immediately on a comprehensive rehab course; the professor there believed it was imperative at this stage if he was to have any chance of recovery.

Dr Stephenson listens intently without intervening. When I finish he turns from me and looks at Miles, then back to me. In my view, he says, your son is suitable for, and would benefit from, immediate admittance for acute treatment. He needs concentrated, appropriate neuro-rehabilitation. It will have taken at least a week for him to settle down after the journey back from Austria. I am afraid, he adds, that because he arrived at UCH from Austria and therefore without the normal process of admittance, it has become a political matter. The question is whether or not this can be overcome.

He gets up to leave and I thank him for coming, trying to remain calm as I say that I hope it will be possible for him to admit Miles to the ABIU under his care. As the door closes behind him I run straight to Miles's bedside and lift his shoulders and head up from the pillows, cradling him in my arms as I hug him, tears wetting his face. I realise I'm crying in front of the nurse but I don't care, I think Miles can hear me: I love you so much, my precious, precious darling, you
will
come through this.

In a Sunday magazine I read the story of Karen, a teenage girl who died suddenly without warning from meningitis. The father recounts the aftermath, how the family was diminished by her death. His wife ceased speaking, would stand at the kitchen sink washing the dishes or gazing out into the garden, silently weeping. The two teenage brothers no longer slept upstairs, where their sister had died in the bedroom next to theirs, but instead carried their duvets down and slept on the living room sofas. One of the brothers grew his hair so long that his fringe fell over his eyes, blocking out the world. The father stayed up late into the night, writing a journal in the form of a letter to his daughter in which he described the passing of each day, of the familial keening for her. The mother could no longer go to work as a school receptionist, the father lost his job as a university lecturer because he had to stay at home to look after his wife. The mortgage payments could no longer be met. Their house was repossessed. This second shock, the father recounts, the forced move out of the grief-locked stasis of their lives, led eventually to their recovery; obliged to confront their loss and the unavoidable continuation of life without Karen, they found a resolution of sorts.

It is a tragic story and I understand their retreat into grief. They lost Karen. But it also galvanises me; we have not lost Miles and so we must continue functioning fully, for him. The story feels like a warning – I realise I have begun to let things go at home. Coming back late from the hospital I can see the children have been foraging in the kitchen, open cereal packets and the remnants of toast and marmite on the worktop. Supper is a thrown-together affair. I don't feel hungry, in fact all I really want to do is to sit down with Ron and whichever of the children is at home over a large glass of wine and talk about our continuing strategy for Miles's recovery. There is a subtle sense of abandonment through the house, as though only the kitchen is inhabited now, precariously, the dining table a mess of old newspapers and my unopened post. There are no flowers in the hall. I must take stock.

The next morning Will visits Miles and is told by the nurse that a Dr Mosley would like to see him. At midday Will calls me. His anger rings down the line like an unearthed electric current.

Dr Mosley is the eighth doctor to see Miles; none of us has met him before. He does not introduce himself to Will. He begins: Miles's prospects are extremely bleak. He is going to be severely disabled and it is my opinion that treatment for him at Queen Square would at best only make him slightly less disabled.

Will is taken aback at his abruptness. He replies, Then surely we need to give him that chance?

It would only mean the difference between his future being grim or not quite so grim, says Dr Mosley. Treatment would not serve any useful purpose.

Any useful purpose! How can a doctor have become so inured to the hopes and fears of the person behind the patient, or of the patient's family? At this early stage hope is still precarious. Will is facing the loss of his brother.

Will answers: Miles has not yet come out of his coma. We want him to have the best possible chance of recovery with the best possible treatment.

The doctor continues undeterred: Many people, if faced with the prospect of being kept alive artificially, would rather be allowed to die if being kept alive involved great discomfort, intensive nursing and severe disablement. Many families decide, on reflection, that their loved ones would want not to be kept alive like this.

We as a family are not being blindly optimistic, says Will, with furious calm. We are prepared to accept whatever happens to Miles. But we are not prepared to assume that he has no future without giving him the best possible treatment now, at this early stage, and thus the best chance of recovery. Miles is a fighter – he is incredibly determined and motivated and I can pretty categorically state that he would want the best and most ambitious treatment possible.

Would he? replies the doctor.

Who is this man? How can he talk like this to Will? Miles is not on a ventilator. He is breathing on his own. There is no machine to turn off. The issue in question is not whether Miles lives or dies. It is about whether he goes to the ABIU or is left to languish on a general ward without any dedicated neuro-rehabilitation. It is only eight weeks since his accident. Our hope may be fragile, but how can he possibly think we could abandon Miles?

If this conversation had to take place, it should not have been now and not with Will. He is not the official next of kin. He is Miles's younger brother who has lost his closest friend and confidant. He should not have been made to have this discussion. Afterwards, when I take the matter up with the head of the ICU, it transpires that Dr Mosley is not a neurologist with expertise in brain injury, but a pain consultant.

The tall Australian male nurse we all dislike is on duty when I visit Miles late that afternoon. There is a prickle of menace about the nurse, his manner supercilious and his handling of Miles curt and dismissive, as though his vulnerability were a cause for derision. He looks up as I come into the room and then with a sweep of his arm towards Miles he makes a mock bow. There he sits, he says, King and Lord of all he surveys.

Miles has been placed into a large high-backed armchair covered with the ubiquitous green plastic of hospital mattresses, his body slumped forward awkwardly against the canvas straps that are holding him upright. Across his forehead the strap is thicker and softer, padded on the underside with sheepskin, but I can see the edge of the red weal it is going to leave when removed.

I want to throttle this nurse, gouge out his eyes, beat him until he whimpers for mercy. I want to see him cowering and jibbering with fear while I beat him until I can beat him no more. Miles is still in a coma; not only are his eyes closed but the one certain evidence of brain damage is to his right occipital lobe, so that half his vision, if he is ever to open his eyes, is irrevocably damaged.

He could be a young man in the aftermath of Death Row, his body slack and quiet after the juddering; an image of horror. King and Lord of all he surveys!

That evening I receive a call from the head injury nurse at Queen Square. A bed has become available and Miles is to be admitted. Arrangements are already being made to have him brought to the ABIU by ambulance the following day.

How bittersweet the pleasure I feel. The revenge on Dr Mosley; on the Australian nurse; on all the doctors who have dismissed him; and then the fact that we are
relieved
Miles will be in an Acute Brain Injury Unit. He might as well have won a place at the most prestigious institution in the world against the greatest competition.

III

How different is the arrival at Queen Square. On entering the ward I am greeted warmly by the head injury nurse, who is expecting me. Miles's journey went smoothly, she says. The ambulance arrived about half an hour ago and he is now settled in. She is efficient and friendly and with relief I think, Here perhaps I might be able to let down my defences. Here Miles is not going to be considered a nuisance, and nor, it seems, am I.

It is two days after Miles's admittance to Queen Square; he is still in a coma. His friend Jasper is visiting him and I have left them on their own and gone to sit and read in the vestibule outside the ward. Friends are finding it difficult seeing him for the first time. I watch them trying to suppress their shock, then finding themselves at a loss as to what to say to him, feeling awkward in the face of his intimidating blankness and embarrassed in front of me. It is difficult to know how to speak to him; we all find it impossible to sustain a flow of one-sided conversation that sounds in any way normal. Each word echoes in the silence. It is easier to try to bolster our own morale and his by reminding him of all that he has still to do and to look forward to – completing his project with the BBC, writing his book, dreaming up more entrepreneurial schemes, making his fortune, getting his ranch in America, finding a beautiful girl. But as another friend Simon said, Miles is a person you can never bullshit. Not only do I feel a fool rabbiting on about my life when he is trapped there in front of me, he said, but everything I say sounds hollow and futile.

Suddenly a nurse comes running out of the double doors from the ward. Miles's Mum, come quick, come quick! she says, Miles has just opened his eyes! I fly through the ward and yes, there he is, sitting in his wheelchair facing Jasper with his deep green eyes open for the first time in eight weeks. Miles is back! He has emerged from his coma! He's going to be all right. Every moment of the past eight weeks has been geared to this one longed-for moment, the fragile dream come true. I'm overwhelmed, perilous with relief, as though I have become too frail to be able to contain such intense happiness, such pure fulfilment of hope – that Miles is back and the horror is over. His life can resume. All I can do is repeat his name, Miles, Miles, oh my god Miles, you're back, you're awake, I must call the family, you're back my darling Miles . . . As I search in my handbag for my phone Jasper remains quiet, I'm sure he is too moved to speak, that this momentous thing should have happened during his first, shocked visit. The nurse has gone quiet too and then I realise everything around us has gone quiet. Something's wrong. I look up and in the awful silence I watch Miles's eyes drift slowly from right to left and back again, unaligned and empty. He sits, strapped in his high-backed wheelchair, his head also strapped and held upright in the curved and padded headrest, and slowly, very slowly, his eyes close. A faint but unambiguous expression of the purest, deepest misery begins to disturb the set of this face that has not moved for eight weeks. It is detectable only by the minute tightening pull at the sides of his mouth that freezes into a rictus of pain. If magnified, it would outdo Munch's
Scream
.

That night all the children are home for dinner. It should be a joy-filled occasion – Miles has opened his eyes and that, as we understand it, means he is officially out of his coma. For eight weeks we have been dreaming of this moment. But he cannot see properly, and he did not speak. Although we know now not to expect the Hollywood awakening from coma, nevertheless we had dared to hope for it to mean the return of
Mile
s
; that even if gravely damaged we would have him back in some recognisable way, that son and brother we know so intimately and miss so painfully. Our excitement at his awakening is freighted with fear, but as we talk together hope begins to rise once more: even if his sight is damaged it may not be complete; at least now his eyes are open the neurologists can explore the extent of damage; maybe all he needs is special glasses; and of course it would take some time to recover his speech. The sensation is precariously sweet, like holding a wounded bird in your hand that is just beginning to flutter its wings.

Driving in to visit Miles the next morning, I think about how proactive and determined he is, how impatient when things move slowly, when he can't solve a problem. How will he be when I see him? How will I know, if he can't tell me and I can't read his eyes? Waiting at a traffic light I watch a young man walking from car to car. I notice that in between cars his face in repose is sly and confident, but as he approaches the drivers he tilts his head to one side and adopts a meek, ingratiating smile, his hand outstretched. As he comes up to my window I'm shocked to hear myself shouting, Get away from me! How dare you do this – you can talk and see, you're lucky, you've got a brain, for god's sake! It's undamaged! Use it! Go away and
do
something.

Miles occupies the first cubicle in the ABIU and is the first person you see as you come through the doors of the ward. As I arrive I notice he is still in bed, propped up, the pillow end of the bed raised high so that his face is clearly visible, and I have to cry out, Miles, what on earth is it? There is a look of such agony on his face that I drop my bags and run straight to his bedside, I'm crying, bending over him and hugging him, what's wrong, my darling? His eyes are screwed shut, his face hunched and frozen in a soundless howl of pain. And then as he hears my voice his face begins to soften, his eyes open wide and the sweetest expression of love and relief comes over it, trusting, child-like, as though to say: It's Mum! It's okay, I'm not in hell, I'm coming out of this, and I can see him trying to raise himself up from the pillow towards me. But nothing happens. Only his head and neck move forward a centimetre or two with what is clearly the greatest effort, the veins on his neck are bulging out. He stops, and then there is a long moment of shared horror as he realises the truth, that I make no difference: he can't move, he can't speak, he can't see, he is in hell. Slowly he lets go and I can feel, I can see him sinking away from me into the depths of the abyss that is his new world.

The horror of imagining his world. My mind batters against invisible walls, I am in the blackest dungeon of incomprehension. I want to be with him. Closing my eyes, I try to dissolve into the darkness . . .

There are voices. The darkness this darkness a faint light flickered. It's gone. They're searching they're looking they must be looking they're close
they'll find me. I can't move. How. Too heavy I'm tied down, my weight shifts and then. Nothing. I feel nothing anywhere just heavy How can
I can't make any sound. The light it's nearer they're coming Mum's voice it's right up close I can feel her breath on me the smell of her perfume
can't she see me can't she Why I'm in a nightmare wake WAKE I've got to wake. Wake out of this get out of it. That's Mum she will she must do something
why telling me she loves me and again, I KNOW just do something for fuck's sake please SOMEONE HELP ME

I fail. It is impossible.

Miles is going to have his first working session with the occupational therapist and she has asked for one of us to be present. I am glad Will is with me; it's a date I have been both longing for and dreading in equal measure, living on the eternal see-saw of hope and despair: in this case either the unimaginable ecstasy of finding a tangible connection or the dread of nothingness, a chasm, not even an echo where Miles should be. It is apparently the occupational therapist who holds the key but I wonder how in this context, how exactly they work with people who are unable to interact. I have a vague idea of occupational therapy through pictures I've seen of blind people in workshops making baskets or prisoners embroidering cushions, but I will come to learn and appreciate the subtle, painstaking work undertaken by neurological occupational therapists treating people who are brain-damaged by TBI or stroke or disease. Like an air crash investigator, they must first locate their patient's internal equivalent of the black box, an often long and arduous process, and if they are successful in locating it they have then to piece together and interpret, if they can, the information it reveals.

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.