Beyond the High Blue Air Read online

  That feels too close to the brink. For safety’s sake I need to retreat:

  Innsbruck is ridiculously pretty and it snowed right down to the town last night, pure white from mountain tip to cobbled street. I wish Miles were awake to share the strangeness of it. The linguistic delights (kieboschstrasse, crapfencake), the delicate iced cake buildings and jolly Tyrolean men with their feathered hats and lederhosen, the elegant café where a Nazi flag hangs proud above a meeting of bland young people and no one seems to notice (we complained and left, to their surprise), the pride, cleanliness and good manners of everyone, the comfortable conformity. Not one eccentric or homeless person to be seen – everybody looks healthy. Occasionally at night we hear drunken revellers but all they do is sing or yodel happily.

  I’ve retreated behind some kind of glib façade. The truth is, I don’t want to share the truth. I’m not ready yet.

  I’m worried about the children. Claudia is completing her MA in London, Marina is in her second year at Oxford and Will travels backwards and forwards from London in the midst of trying to set up his design company. Their lives have been disrupted in a catastrophic way, disrupted but now in stasis. No one knows what will happen next, but we all want to be here with Miles when it happens. The future is held in abeyance.

  The four children make up a unit. The boys seventeen months apart, first Miles then Will, a gap of five years and then Claudia and Marina, two and a half years apart. Together they are vibrant, warm, humorous, necessary; various, but one. It has been a constant marvel to me to watch them, know them, see how small frictions are resolved, the weight of their different personalities kept in balance. Now the balance has been upended. Miles, a heavyweight, is missing and the remaining three are having to realign the unit while united in their grief and their absolute commitment to him.

  It’s impossible to say whom it affects most. Will perhaps in the physical sense, because he has suddenly lost his life-long companion. So close in age, attending the same schools one year apart and the same university, sharing many of the same interests and now sharing a flat, they are the best of friends despite their different characters. Miles is defined by his energy, vitality, determination, ambition; he is a natural leader. Will is equally strong-minded, but is happy to follow his own path alone, having no interest in shaping other people’s lives. They share a similar intellect, but whereas Miles is a driver of ideas, Will is privately creative.

  The girls’ loss is different but as profound. Miles has been both their eldest brother, a self-appointed protector, and a friend and advisor, someone to have fun with and confide in. I see him now aged fifteen, an aspiringly tough, cool teenager, awful peroxided hair, standing at the kitchen window waiting nervously for the girls to return. They’d been allowed to walk on their own down to the shops at the bottom of our quiet residential road and Miles is reprimanding me. They’re too young, Mum, you shouldn’t have let them go down on their own. I’m going to go and find them. No, Miles, you must not, I tell him. You of all people! He laughs with me, acknowledging the double standards of an independent, experimental elder sibling not countenancing it in the younger.

  As the girls grew up and the age gap between them and the boys became less pronounced, their relationships consolidated into the unit they have become. Now that all four are in their twenties their interests and many of their friends have converged, but Miles remains a powerful older brother and his absence has made a rift in their lives. Each one is in the middle of a defining process – university, setting up a business – that will suffer from being disrupted. The emotional impact of Miles’s accident has been traumatic; we must not allow it to damage them practically as well.

  Ron is in Innsbruck for the weekend and we talk about it together and with the children. Decisions are made. Claudia will return to London and ask to have her MA exams deferred from May to September when rewrites are undertaken, so it should be a possibility. I will write to Marina’s tutor at Oxford and explain the situation to him; the pastoral care there is excellent, I know. Will’s situation is more complex, though in some ways easier; his time is not proscribed by terms and exams but by personal deadlines as his future career begins to take off. His business partner is understanding, but undoubtedly combining his work and being here for Miles is going to be a problem.

  Traumatic brain injury is by definition sudden and unexpected. Shock and grief follow in its wake, but it is the unknownness, the complete lack of knowledge that compounds the horror. There is no known trajectory to illuminate the terrible blank thing one faces. Somebody you love is there but no longer there. Lack of consciousness is not comprehensible; the person looks the same and that is all. As a family we are adrift together in our ignorance and our craving for knowledge.

  I have been talking to the athletic young neurosurgeon on the ward who is the same age as Miles and who, it transpires, is also a keen snowboarder. He is the one who tells me that he never wears a crash helmet when he snowboards. They may protect the skull, he says, the helmet will take the impact, but the sudden acceleration and deceleration can cause the brain to rotate within the skull. I don’t want to hear this. Rotate – Miles’s brain rotated? He continues, The medical term is Diffuse Axonal Injury, or DAI for short. If that happens we do not yet know any way of reversing it.

  I research DAI. Please let Miles not have suffered DAI. If he has, his brain will have sheared when he fell, or more precisely, the axons will have sheared. I learn that each of the billions of neurons, the nerve cells in the brain, has an axon, a long fibre that acts like a fibre-optic cable transmitting electrical impulses away from it, allowing one neuron to communicate with another. If the axons are broken, the messaging system is broken. Apparently the brain is made up of tissues that vary in density and during that dreadful rotation the different tissues slide over one another, stretching and shearing the axons that connect them; they cascade. The words are surreal, beautiful: rotate, shear, cascade; it is a betrayal of language. The particular cruelty of DAI is that the areas of the brainstem involved with basic life functions, the cardiac and respiratory systems, may remain unaffected; the victim does not die but is left suspended between life and death. I read that 90 per cent of people with DAI remain in a persistent vegetative state. Very few of the 10 per cent who regain consciousness will return to near-normal neurological function, and of those who do, the improvement will have to take place within the first twelve months after injury. If there has been no progress by then the prognosis is bleak. It is only after a year from the time of the accident that a neurologist will be able to make a prognosis and even then it will be approximate; the brain does not yield its secrets easily.

  Miles, do you remember my last words to you as you were leaving the house? Please don’t do any dangerous jumps, my darling! It was my foolish, ritual request, a kind of game we played. I loved your daring and you enjoyed my mock protectiveness (although it wasn’t really mock, I meant it but I had to say it lightly). I remember you hugged me with that crushing bear hug I love so much and you said, Don’t worry, Ma, I’m older now. I promise I’ll be responsible.

  Miles bought his crash helmet that morning just before the jump. He would have died instantly without it. But perhaps without it he wouldn’t have gone as fast, perhaps he would have been more cautious, perhaps it disoriented him.

  Is it my fault he bought the helmet?

  I come across Dr Stizer on the ward one day. He is in his scrubs, seeing his patients in a break from surgery. It’s strange, he says, but I have connected with your son in a way I haven’t done with a patient before. He could be my son. My greatest hope is that he will return here one day to speak to me himself.

  I am profoundly touched by his words and we are both quiet for a moment. Then he says, May I give you some advice? Of course, I say. You saved my son’s life! He looks at me quizzically. The first thing, he says, is that you must never reprimand him for doing that jump. It was a brave and wo
nderful thing to do. He is a young man and young men should all go out and grab life in the way he did. The second thing is that you should never feel guilty. It concerns me, he says, to see that you and your children come every day to visit Miles. I think it may be too much for you. You must not feel guilty if you go away and enjoy yourselves.

  This is a surprise. Neither thing has occurred to me; certainly I would not reprimand Miles for doing that jump. As for feeling guilty, what I do feel is more complicated, not guilt but something stranger, whereby all physical and sensual enjoyment – eating, drinking, long hot baths, music, shopping, reading, making love, laughing – is shot through with a new awareness. It can no longer be simple untainted pleasure. Everywhere I go, everything I do, is suffused with, contaminated by, the image of Miles lying unconscious in his hospital room. The incomprehension at his plight has destabilised me; nothing makes its usual sense, nothing at all. Drinking a cup of tea reminds me he can’t drink; seeing the sun set over the pale mountain peaks reminds me he can’t see it.

  Dr Stizer is an unusual man and I am moved by his evident concern for Miles, on a personal level. Miles would like him, they would get on very well – I can imagine their mutual respect and the laughter their shared rumbustious humour would generate. A neurosurgeon who snowboards and plays in an amateur rock band in his spare time – they could have a great time together.

  For the first two weeks Miles remained in an induced coma; with a controlled dose of barbiturates his brain had been artificially shut down to the base line of function. By the time he had arrived at the hospital the right side of his face and neck were grotesquely swollen as the cerebral fluid found its only escape route out of the confines of the skull. When a brain is injured it swells and there is no space for it to swell to; the skull protects the brain but now the protector has become the instrument of destruction. As the swollen brain is compressed against the hard, bony helmet of the head, delicate brain tissue is being damaged in the process. If appropriate, the neurosurgeon will perform a craniotomy as they did on Miles, in which a ‘flap’ of bone rather like a trap-door is removed to make room for the swollen brain. Then, by inducing a coma, barbiturates will slow down the cerebral blood flow and the metabolic rate of brain tissue and so the blood vessels begin to narrow, allowing the swelling to decrease. The outcome for each person sustaining a brain injury will vary depending on the extent of the original trauma to the brain and, crucially, the time taken to reach a neurosurgeon and therefore the time the brain has to swell unattended. In Miles’s case he had to get from where he had fallen, 2000 metres high up on an Alpine mountainside, to a neurosurgery clinic 100 kilometres away. That journey took three hours and even the best efforts of a helicopter rescue team could not prevent secondary cerebral damage. There had been nowhere else his brain could swell to except against the skull or down into his brainstem.

  I have Miles’s case history on admission to Innsbruck University Hospital in front of me. In a crude translation from the German it states the bald facts, as reported by the paramedics who attended to him on the ski slope and accompanied him in the rescue helicopter to the hospital:

  State of conscious: unconscious

  Breathing was still spontaneous, but he had an apnoea soon

  Ventilation with a mask was started immediately

  Motor reaction: no reaction

  Eye opening: no reaction

  Verbal reasoning: no reaction

  Pupil reaction: left, no reaction, wide

  right, no reaction, wide

  During transport they got unequal

  Intubation was necessary immediately

  Grade of injury: life-threatening

  GCS: 3

  GCS, the Glasgow Coma Scale. It would become our cruel yardstick, our unyielding beacon of hope, Miles’s new star grading. First published in 1974 by two professors, Graham Teasdale and Bryan Jennett of the University of Glasgow’s Institute of Neurological Sciences, it was devised as an attempt to put in place a reliable method of assessing levels of consciousness after brain injury. The scale is divided into three parts, E, M and V – Eye Opening, Best Motor Response and Best Verbal Response – 15 points being the highest score and 3 the lowest.

  Miles is rated 3. The minimal response a human being can have to life. What does that actually mean? What is happening in Miles’s head? Can he dream? Can he feel pain? Can he think? How different would he be at Grade 4?

  A year ago Miles crashed and wrote off his motorbike. I still have the London Hospital discharge report:

  Motorcyclist in RTA. Head on collision. Car at 35 mph, motorcyclist at 20 mph. Over handle bars and rolled off bonnet. No loss of consciousness. Remembers entire event. GCS 15 throughout. Patient discharged home with crutches.

  GCS 15 throughout. That meant nothing to me at the time. How impatient and irritable he was, being on crutches. Instead of merely injuring his right leg as he did, I wish now that he had broken every bone in both his legs, crippled himself so completely he could never have snowboarded again.

  Every day, morning and evening, we walk from our hotel to the hospital. We turn the final corner and there it looms, snowy mountains and serene blue sky unnervingly reflected on the elegant glass frontage. When we reach the sixth floor and I lift the phone to request admittance, I am as tense as if I were alone in a dark house and think I can hear an intruder: fear mixed with the hope that I may have imagined the danger, every nerve on full alert for this thing that is out there, unseen, unknown.

  Claudia and Marina are with me this morning. Since the girls and I visit Miles every day the staff have waived the two-visitor rule, and as the three of us walk towards his room our combined fear and hope become tangible: dread that his incomprehensible stillness will be the same, nothing will have changed; hope that he will have woken from his coma, that the nightmare will be over. Dread and hope and incomprehension; it is the same every time. We turn into his room and today something is different: Miles, inert, unconscious, still connected by multiple wires to those monstrous banks of machines behind him, has been strapped to his bed. The straps are thick brown leather, as I imagine the straps of a straitjacket must be, and they have been passed twice around his wrist and tied firmly to the metal rails each side of the bed. It is like unwittingly entering a room in preparation for torture. Pictures flash up in my mind, illustrations I have seen somewhere, Goya-esque sketches showing in finely etched detail the inmates of a madhouse cruelly restrained, shackled to great iron rings on the walls. What on earth is going on? I demand of the nurse on duty. Who did this? What has happened, what did Miles do that this is necessary? Oh, please don’t worry, she says, this is normal. The doctors are planning to bring Miles out of the induced coma today and we often find that when patients are coming round they try to pull out their drips and feeding tubes. The straps are there for his protection.

  After two weeks Miles is being brought out of his coma. This is momentous news. I wish they had prepared us; it seems a far greater test than his being taken off the ventilator. We no longer fear for his survival, but we have not yet addressed what comes next.

  Dr Stizer arrives but before I can say anything he apologises. I’m so sorry, he says, I wanted to see you before you came to Miles but I was called away. You must be upset to see those, he says as he looks at the wrist straps, but I wanted you to know it is somehow good news.

  His English is not perfect, but his kindness is all that matters.

  We can see on the scan, he says, that the swelling on Miles’s brain is coming down and it is better not to stay too long like this. He gestures towards the screens and monitors behind Miles.

  We want our boy to wake up! Dr Stizer smiles at me then, but the smile fades quickly as he speaks again, now serious. We do not know how he will be. We have to do this thing very slowly. Claudia and Marina are next to me and he looks at us all as he says carefully, You must go away and you must not worry. We a
re taking care of him.

  What Dr Stizer does not know is the extraordinary rising, surging wave of hope that we cannot keep down for now; it has drowned out any worry we might possibly feel. When he leaves the room I tell the nurse that at all costs, no matter what time it is, even if it is the middle of the night, the nurse on duty must call me to tell me as soon as Miles begins to wake up. We will come to the hospital. I leave my mobile phone number and give her the number of the hotel in case it doesn’t work. Then we stay on for a while with Miles and we tell him all over again how much we love him, that he is coming back to us and we will be with him every step of the way as he begins his recovery, that we are all here waiting for him.

  We leave the hospital and return to the hotel and try to think what we can do to take our minds off this huge thing that is happening. The process is already under way in Miles’s body, the drugs slowly ebbing out of him as in turn the Miles that has been shut down, the undamaged parts of the Miles we know, must surely be coming back to take their rightful place. Marina speaks for us all: this hope, she says, is like the beginning of a love affair, the intensity of it, the newness. She is right; there is the waiting and the tenderness in hoping, the absorption of all one’s self into just this one encompassing fervent desire, and the dream, the beautiful dream, of fulfilment.

  The evening comes, and the night, and there is no call from the hospital. Dr Stizer said it would be a slow process. Walking towards the hospital in the morning we are walking to a scaffold where there may be a stay of execution. It is raining and the mountains ringing the town are hidden from view for the first time since we’ve been here. The streets are bleak; rain has put the city off kilter, it should be snow at this time of year and the ski slopes will be ruined.

  Sitting once more in the waiting room, we watch the fish in their tank. There seem to be some new ones, none of us remembers seeing them before. They are black and larger than the decorative bright little fish that swoop so hopelessly through the seaweed. These new ones are purposeful, their sucker-like mouths fastened to the rocks as they clean off the pale green scum that has grown there, and two of them are fastened on the glass front of the tank, sucking and cleaning the glass. The movement of their mouths is repellent; I can’t watch them, they’re starting to make me feel nauseous.