Beyond the High Blue Air (6 page)

Good Friday morning, and I am surprised to learn that Dr Stizer will be performing a cranioplasty on Miles this afternoon. I would have thought that being a public holiday there would be no surgery today, but he says they will be working as usual. He has come to see me in Miles's room and Claudia and I listen as he tells us that the piece of skull, the ‘flap' which was removed to make space for Miles's swollen brain when he was first admitted, is going to be replaced by a piece of titanium. The original piece of bone, frozen in a solution to prevent infection, was kept so that it could be copied precisely to make the titanium replacement that would eventually be inserted to protect the brain. I ask him what the procedure will involve. The titanium piece will be fixed to Miles's skull, he says, and then stops. Looking at me closely, he continues. Are you sure you want to know the details?

Perhaps it's unusual, but I do. I would like to be present during the operation, see it taking place, see the area of unprotected brain before it is covered, just as I wished I had been with Miles at the time of his accident. I want to understand every element of what is happening to him. I don't want to be protected from it – why should I be? It doesn't make me feel squeamish, nor does knowledge make the situation any more painful.

Well, Dr Stizer says, and I can see he is choosing his words with care, I will use screws to fix the titanium plate to Miles's skull. You mustn't worry, he adds quickly, the screws are very short, they won't damage his brain. They are self-drilling. When his hair grows again you won't know it's there.

Miles's body, it seems, is being adapted to survive his new life. First the PEG or percutaneous endoscopic gastronomy, a feeding tube, was surgically inserted directly into his stomach, then the tracheostomy was fitted, and now this, his skull fixed with self-drilling screws; it is as though he is being armed for survival.

Easter Sunday is four weeks to the day since Miles's accident. I can't help it, but the combination of four precise weeks falling at Easter feels imbued with significance, though of what exactly I'm not sure. Perhaps some atavistic stirring, that Easter is a day of hope, of a rising from the dead, of new life beginning. Lying in bed in the hotel room with Ron next to me, here for the weekend, I try to suppress the strange excitement that something is going to happen today. It feels like a private premonition that I will ruin if I speak it out loud, so I don't mention it to Ron, and instead we talk about our plans for the day. He thinks perhaps it would do us all good to go out for lunch after visiting Miles. I can see how exhausted you are. It's Easter, and everyone's here; it'll do you good to have a treat. He plans to take us to the restaurant with a sheltered garden near the Hofgarten, the beautiful Imperial Court Park on the edge of the Old Town that we have often passed on our walks through the town. We can sit outside and enjoy the sunshine, he says. I'll book a table. In my superstitious state even his suggestion seems significant; he is attuned to Miles, maybe he too senses that something is different today, that finally there may be something to celebrate. Spring has arrived in Innsbruck and the town has come to life, window boxes now blooming with colour and the trees in the sombre winter parks alight with new growth. Everything suggests renewal; surely Miles will be part of it.

As we gather together in the hotel foyer after breakfast I try to gauge if anyone else is sharing this feeling I can't shut down. Maybe I am oversusceptible, but somehow the atmosphere feels heightened. Perhaps it's just that Ron is right, I'm exhausted. Stepping out all together from the dim interior of the hotel into the bright spring sunshine I wonder if it's visible to others, how fragile a group we are, how taut with uncertainty. Reality feels fluid; nothing is fixed any more.

Turning the corner into the plaza for a moment I think I have truly lost my senses. Huge white rabbits are dancing in the sunlight to music played by three wizened old men dressed in Tyrolean costume playing squeeze boxes, their short leather trousers, long white socks and feathered hats making them look like ancient schoolboys. The normally sedate cobbled space is a riot of noise and colour, small children racing through stalls laden with elaborate breads and cakes, bright marzipan sweets, painted eggs, colourful wooden toys, and all the while the stout men and women dressed in their rabbit costumes are, I now realise with even more bewilderment, selling loops of giant sausages as they regale the crowd. We wend our way through the surreal scene, smiling politely at the stallholders as they offer their wares and dodging the happy children as they run around us.

Our destination, when we reach it, seems just as surreal. My superstitious hope is irrelevant to Miles as he continues to lie, oblivious, on his high hospital bed.

The senior consultant on the Neurosurgery ward is Professor Benir. He introduces himself and explains that he has been in America at a medical conference, which is why we have not met before. His manner is quiet and thoughtful, his dark Middle Eastern features severe against the crisp white of his doctor's coat. We are standing by Miles's bed and he looks down at him, studying him silently for some time before he turns back to me.

I would like to know about your son, he says.

And so I tell him about Miles. That he has been a joyful son to have, my first born child. That from the beginning he has been quick and bright, an adventurer, a risk-taker. That one of the things that has defined him has been his brain. After academic success throughout school he got a first class degree from Oxford. He started his own company at twenty-four. At twenty-five he was selected as one of five young people to represent Britain during Giscard d'Estaing's European Youth Convention. At present he is a management consultant for a large international company based in London but will take his own company further when he has gathered more experience. He is writing a book in his spare time. He likes to keep fit and enjoys white collar boxing. He sky dives, he dives with sharks. He practises chi kung. He makes electronic music. He writes poetry. He is funny. He is kind. He loves life, attacks it head on, dangerously, seeking adrenalin, sometimes foolhardy, learning from his flaws while exploring, always, his spiritual resources. He is full-blooded, down to earth, but at the same time he is an intellectual.

I'm boasting about my son. But what seems important is that Professor Benir should know about Miles's brain, the brain that he and his team are now responsible for. He must know that it is exceptional.

I apologise for boasting, I say to the professor, but what I have told you is true and it is breaking my heart that one of the things defining Miles was that he was an intellectual and now he is brain-damaged. I find that the most difficult thing to come to terms with. I wouldn't mind anything else, his legs, his arms, anything, but not his brain. He used it with such vitality, it was crucial to his enjoyment of life, right down to his particular wit and sense of humour. Can I ask you for the truth, Professor Benir: what form is this brain damage going to take?

He waits some time before answering. Miles lies quite still next to us, only the faintest movement visible as his chest rises and falls with the intake of each breath. Now that the swelling in his brain has subsided, the shunt that was draining off the excess fluid has been removed. There are no longer any tubes coming out of his nose or mouth; the tracheostomy and PEG have taken care of those. Void of expression, his strong, closed face is intimidating in the stillness of its silence.

Professor Benir looks back up from Miles to me. The damage is not to his intellect, he says. That is not the area of the brain that is damaged. But he has suffered a very serious trauma to his brain. What is crucial now is that he begins intensive rehabilitation. We have done our work here, the surgery is complete; the important thing now is for you to arrange the next stage for him. We could move him to our Neuro-Rehab Clinic
40
kilometres away from Innsbruck but I think it would be best for him to return to England, where you and he will be at home. I would recommend the Acute Brain Injury Unit at Queen Square in London, the National Hospital for Neurology and Neurosurgery, which has an excellent reputation for neuro-rehabilitation. And please, he says, gently laying his hand on my arm, don't worry about boasting. I asked you to tell me. I wanted to know about him. I am very sorry that this has happened to your son. I wish him, and all your family, very well.

Now we must get Miles home – how, and where to, such obvious and crucial questions that we have deferred facing for the past five weeks. Such a lapse seems extraordinary, though for a time we had talked of staying in Austria until he was well enough to leave. We know better now. And so we get to work, David, Ron and I researching London hospitals that offer neuro-rehabilitation, contacting anybody we know who might be able to help or advise us. Friends who are doctors are invaluable, generous and patient with their time.

It takes a week of intense negotiation. After a flurry of telephone calls to London hospitals Miles is finally offered a bed in the Intensive Care Unit at University College Hospital, to be reviewed and assessed before being moved to the Acute Brain Injury Unit at Queen Square, the ABIU. Our twin goals have been the ABIU and the Rehabilitation ward at the Wellington Hospital, both centres of excellence specialising in neuro-rehabilitation following traumatic brain injury. The Wellington is private and the costs are prohibitive. Receiving the news that Miles is to be admitted to the ABIU feels like winning the lottery.

The logistics of flying home are daunting. To return on a stretcher with a commercial airline would require the space and cost of nine seats, but patients with tracheostomies are not accepted so that is ruled out anyway. There are companies that specialise in repatriation by air ambulance, small jets that have the intensive care equipment to cover every eventuality, but talking to their representatives I get a chilling sense of impersonal service at great cost, that the payment is more important than the patient. Dr Stizer recommends a friend of his, a doctor who flies a private air ambulance, and the decision is made.

Today Miles and I are flying back to England. On the runway our plane is dwarfed by everything around it. Tiny but purposeful, it looks like a hornet waiting for take-off, fragile, thread-thin legs and delicate wings outstretched. The airport is closely ringed by high mountains, snow-covered, jagged and implacable, and I cannot imagine how this tiny thing will lift us over them. Once inside the plane you cannot stand upright yet unbelievably there will be six people on board. The pilot, Dr Stizer's friend, is a handsome, swashbuckling neurosurgeon who flies for a hobby and often ferries his own or other Intensive Care patients. His exuberance makes me realise how brittle I am, how taut and isolated is the space I've come to inhabit. His co-pilot looks reassuringly serious, a young man who shows great concern for Miles as he is being lifted into the plane. There is a male nurse from the hospital and he and I sit belted in with our backs to the pilot and co-pilot, our shoulders almost touching theirs. Relaxed and friendly, the nurse tells me that he is now studying to be a doctor but takes on this work when he can to earn the money and for the ride, and, I can tell, this outing to England will be fun for him. In front of me, almost taking up the body of the plane, Miles lies on his back on a stretcher and I can just about reach across and touch his head to reassure him, or reassure myself. Next to him, at the other end of his stretcher and facing us, sits a young woman doctor; throughout the journey she monitors Miles and fills in the clipboard chart she keeps on her lap. Beside her is a bank of resuscitation equipment and a portable suction machine. Once the plane has taken off we can't talk because the noise of the engines is deafening; this air ambulance has no luxury trimmings.

I don't like flying at the best of times and I especially don't like flying in small aeroplanes. This is the most physically frightened I have ever been. I fear the laid-back pilot, the tinny fragility of the plane, the grinding noise of the engines, the low altitude and proximity to the snow-covered mountains below us; above all I fear the effect of the rarefied cabin air pressure on what little oxygen is still being supplied to Miles's brain. Half an hour into the flight I begin to detect an unmistakeable smell of burning; yes, there is undoubtedly something burning in this aeroplane. I lean over to the nurse and he leans towards me. I shout in his ear, Can you smell burning? Mmm, he says, and turns to tap the co-pilot on the shoulder. They talk closely and then the nurse undoes his seat belt and crawls, bent double, down to the back of the aircraft. I can't see what he is doing as he crouches down but he returns calmly and now shouts in my ear, Heating, the heating, better it's off, okay?

I nod but I'm not okay. Miles has begun to judder, his body jerking, his head shaking terribly from side to side. The woman doctor leans forward to take his pulse and check his oxygen saturation level, then sits back in her seat. He continues to judder and I think he must be sensing something through his comatose state, that his unconscious registering of the change in his environment is triggering these severe spasms. I can do nothing to soothe him, except let my hand linger on the top of his head and try to will my love through to him, to enfold him and cocoon him with all the force of my love.

Ridiculously the plane lands at Biggin Hill, with its connotations of Biggles and schoolboy comics; how Miles and Will would have loved that as small boys. It's a beautiful day and as Miles is lifted out of the plane and on to the runway I realise it is the first time the sun has shone on him for six weeks. His skin has a ghostly sheen, his immobile eyebrows and closed, thick eyelashes unsettlingly dark in comparison. I can see that the two young men wheeling his stretcher try not to look at him too obviously, but it is unusual to see someone in a coma at close hand and they are both fascinated and repelled. Miles is still a handsome, powerful, athletic-looking young man in spite of his pallor; his rigid unconsciousness shocks. An ambulance is waiting outside the small airport and the cheerful driver helps me in. You sit next to me, love, in the comfortable seat, he says. You must be a bit out of sorts after that flight. The medics can go in the back with him. He'll be all right, don't you worry, love.