by Lu Spinney
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.
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 w
ant 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 Welli
ngton 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.