Beyond the High Blue Air (5 page)

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
thin
k
? 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 are 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.

The nurse is coming down the corridor to fetch us, her face impassive. She lets us out of the waiting room and we follow her in silence, still not able to speak as we go through the rigmarole of putting on plastic aprons and rubber gloves and then continuing to follow her past the nurses' station and through the ward to Miles's room. We enter and there he lies, in the same position as he was yesterday, on his back with his eyes calmly closed, the machines still blinking out their messages behind him. The straps have gone. It might have been a dream; reality seems very far away. But the dream has ended; the removal of those straps is the rejection we dreaded, the end of the affair. There was no need for them. He is still in a coma but it is his own.

A week goes by and there is no change. Then, suddenly, during our visit this morning Miles moves his arms. He pushes both arms downwards, stretches them down with his wrists bent back in the way one does sometimes, pleasurably, after sitting or lying too long in the same position. The shock of excitement – he's moving! he's starting to wake! – becomes tinged with alarm as he repeats the movements forcefully but his face remains blank, unchanged, his eyes closed, no flicker of expression. Such a powerful action, yet the rest of his body has remained inanimate. Even so, I can't help calling out to the nurse who is busy filling in forms behind his bed, Look, look, Miles is moving! She drops what she's doing and comes round to see and I'm deflated by her lack of enthusiasm. Surely she can't be so cynical or impervious to the significance of what happened – since Miles has been in a coma this is the first time he's made any movement of any kind. Later the young doctor comes in on his rounds and I tell him eagerly what happened, describing and imitating it to show him. Surely it has to mean something is changing? I ask him. It was such a strong action, does it mean Miles is beginning to surface?

He is quiet for a moment. We don't really want him to do that, he says. I'm afraid I think it may just be a consequence of his injury. But it is still early, he adds quickly, don't worry, it will pass. He is being kind, trying to rescue me from my foolishness, my ignorant optimism. I've no idea how someone wakes from a coma, but every moment of watching Miles is geared to this end. I am consumed by the hope of it.

Now it is terrible to watch him make that movement. Each time I want to stop him, No, Miley, no, don't do that, please don't do that thing. The innocence of it, and the horror; his brain is in chaos and all the while he stretches out his arms as though he's just about to get out of bed after a long nap. Decerebrate posturing is the medical term, Dr Stizer tells me later when I ask him; sympathetic storming, or just storming, is the more common description. Such a strange and beautiful word for it, I say to Dr Stizer and he looks at me quietly. It will pass, he says. What he doesn't tell me is that DAI may contribute to it, or brainstem injury, that doctors fear it because the action itself may suggest further injury is taking place in the brain. I don't know that yet and for the moment hope regains the upper hand – the doctors have said it will pass and, most importantly, it has shown us he is definitely not paralysed.

I have a photo of Miles lying on a sunbed by the pool in France. It was taken from the lawn above the pool and he is looking up at the photographer wryly, caught off guard just as he was surfacing from a post-lunch snooze in the sun. His body is tanned and fit, his dark hair thick and ruffled from swimming. He is stretching both arms downwards, the wrists bent back, an enjoyable long, lazy stretch. It is a precise replica of storming.

At first it was shocking to see how many tubes were tethering Miles to the world, but I have got used to them now. This morning when we visit, the nurse tells me that the doctors have decided to remove the one which passes through his mouth directly down into his airway, the endotracheal tube.

It was the first emergency tube used by the paramedics in that fearful helicopter journey. When he collapsed on the mountain slope they had to ensure he was getting enough oxygen and the initial procedure would have been to administer oxygen through a mask fitted over his nose and mouth. But when his pupils registered as unequal it signified a further emergency. The endotracheal tube would have been inserted, jammed down, I imagine, in the rush to save his life, before being connected to a portable ventilator to keep him breathing.

The nurse tells me now that prolonged use can damage the vocal cords over which the tube passes and since it has been in place for three weeks the doctors consider it time for removal. Please let his voice not be damaged, that warm, humorous voice I know so well. In place of the tube Miles will be fitted with a tracheostomy, she says. I have no idea what a tracheostomy is and so the nurse describes it to me. Involving a minor operation, a curved plastic or silicone tube will be inserted into a hole made in Miles's neck and windpipe just below the larynx, bypassing the vocal cords and leading directly into his airway. It is necessary to keep his airway open and accessible, so that it can be cleared mechanically if necessary or used to administer extra oxygen when needed.

The young doctor on duty today has been deputed to discuss this with me and ask for my permission to perform the operation. He tells me that it is a simple procedure and there is very little risk of complication, that once the tracheostomy, or trachie as he calls it, is no longer necessary it can easily be removed leaving only the smallest scar. Having discussed it with the rest of the family I give the go-ahead. The most important consideration for us, all we can really think of, is that Miles's voice should be saved; our sweetest dream is to hear him speak again in the particular vivid, engaged way that he does.

Will and I are the first to visit Miles after the operation has been performed. I don't know what to expect but the shock of seeing the tracheostomy in place undoes me completely. I am not at all prepared for the collapse of misery it brings me to; I can only sit down and bury my head on Miles's chest, pressing my face into his inert body to try to staunch the torrent of pain that, if I let it go, is threatening to bring this precarious thing I hold inside myself to its destruction. Will's hand is resting gently on my back, he is talking to me. It's okay, Mum, it's the best thing for him now, he says, we have to try and remember it's only temporary and the doctors say there won't be a scar. Lifting my head from Miles's chest I am on a level with the trachie and however right it is for him now I hate it, I loathe its monstrous, domineering protuberance. It looks predatory, fixed, foreign; it has claimed him, branded him. A hole has been cut in this strong young man's throat. I remember the Adam's apple that appeared in adolescence, the strange ambulations in his voice as it began to break; I remember his smooth vulnerable teenage throat. Imagine the cutting that has had to take place – surely the windpipe is cartilaginous. I stand up with Will's arm supporting me and look down at Miles. He lies unmoved and unmoving, his face serene, the hard plastic ugly thing with its crude white rim standing proud from his throat. There is this one comfort: that of us all, Miles in his coma is at least not suffering.