Beyond the High Blue Air (14 page)

She never has visitors. I assume her family must live a long way from London but she doesn't discuss them or her home life, except to tell me she is one of five siblings. Later I discover they live in South London not far from me. Donna says they don't like coming to Putney because they find the people there frightening. Instead Gemma invites Marina to accompany her shopping and on outings to the cinema or a Persian restaurant with Omar, the Kurdish paraplegic ex-soldier who occupies the room next to Gemma. Marina goes with her, setting off from the hospital in an ambulance, Gemma in her wheelchair, a carer to attend to her, Marina trying to shield her from prurient attention from the public – it is demanding and Marina is exhausted when she comes home. I would like to protect her from this added strain, but then she says, How can I refuse her when she asks me? It would be too cruel.

This morning Dr Jackson informs me that Miles has been selected to take part in a research project being done by the Wolfson Brain Imaging Centre, part of Cambridge University. Neuroscientists under the auspices of something called the Impaired Consciousness Study Group are researching ‘possible covert brain activation' in low awareness states. He would like my permission for Miles to travel up to Cambridge and spend five days at Addenbrooke's Hospital, where the research will take place.

This is thrilling news. It is the same team of neuroscientists who are responsible for the extraordinary story that's been in the news lately. I have read about it – a young woman thought to be in a permanent vegetative state who, when asked to imagine playing tennis or moving around her home, was observed under fMRI, Functional Magnetic Resonance Imaging, to activate the areas of her brain indistinguishable from healthy volunteers. How incredible that Miles is to be seen by the same neuroscientists who did this. Then the familiar twist of apprehension – will we or won't we be given the definitive news we want to hear?

Miles is awake and I tell him the story about the young woman, that he has the chance to be seen by the same research team in Cambridge. He is alert as I start talking and then as I continue there is the recognisable shift in his expression, a quiet, focused intensity, as though he were in a noisy room and straining to hear. Miles, I can see you understand me, I tell him. I hope you never doubt this, even when sometimes I don't understand you and I get you wrong. This is going to be an amazing opportunity for you, to give the doctors proof of your awareness so we can be certain you get the right treatment while you're recovering. Because you
are
recovering, my darling. I hope he doesn't hear any change in register; I want so much to believe it myself. Week by week we all see the changes, I tell him, even though it might not feel like that to you. And going to Cambridge will be interesting for you, a change from the routine, the monotony, I know, of life here. Will and I are going to come too – he's taking a week off work to be with you because it is so important. I think Will may also be concerned about me being on my own, but whatever his reason I am relieved he is coming.

I have been worried for some time that our pep talks are unconvincing. From an early age Miles's clear, fierce intelligence compelled the truth from people; he saw through any dissembling – his infallible, built-in bullshit detector, a friend described it. I think he believes me today; perhaps he is persuaded this research can liberate him. It is always clear when he is unconvinced – I think of the computer program he works on with the occupational therapist, a program that is by necessity basic to the point of humiliation, that would be fun for a three year old. As the therapist and I urge him on, trying to keep him motivated, I can feel him withdrawing, as though resolutely not co-operating when the carefully enunciated computer voice tells him to find the cat from a picture of cats and dogs. The visible shift of tension that crosses his face suggests defiance if not anger. The physical effort he has to make just to press the switch is herculean and the lack of consistent success must be unbearably disheartening. He was always impatient with failure. But today he seems convinced by my pep talk. The responsibility is fearful. What if Cambridge is a failure? Could my encouragement be another act of unwitting cruelty? But what else can we do, except continue to try to give him hope, to keep him motivated? For his sake – and ours.

Before leaving for Cambridge Will and I meet the neuroscientist who will be doing the research with Miles. A slight young man with pale, thinning hair and a boyishly enthusiastic manner, he is not what I imagined for an eminent neuroscientist. I warm to him immediately as he introduces himself to Will and me and then turns to Miles. I'm Martin, he says, and I'm hugely looking forward to working with you. He goes on to explain where and when this will take place, speaking to Miles as though he were meeting a new and respected colleague who is about to join him on an important project. Miles has gone quite still, listening and looking up from his wheelchair at this young man with a yearning intensity that I find agonising to see. It is as though I have glimpsed the scene unwittingly through a half-open door. And then an image superimposes itself, Miles as he was, standing there engaged in this conversation, strong and upright, his dark looks in vivid contrast to the paleness of Martin Coleman and both participating in the rapport of shared intellectual vigour.

Dr Coleman has asked us to bring a collection of family photographs for him to show Miles under fMRI. I rummage through the old copper trunk that houses our mess of photographs, wishing I had been more organised about their storage. Picture after picture enshrining the family, I realise, and the unit of four children intact, in gleaming health, no trace of a shadow. Miles aged six, proudly astride his uncle's motorbike, Will as a grinning eight-year-old Batman, three-year-old Claudia having a tantrum on a ski slope, her expression the one we all found so adorably funny, Marina aged seven on the beach in Cornwall, a gleaming shrimp of a thing. Sitting there on the carpet in the playroom, surrounded by the remnants of a life lived once upon a time without any tremor of foreboding, I think: I had that. At least I had that. And then the ripple of pain begins and as I go under, I can barely breathe.

In Cambridge Will and I spend each day at the hospital, leaving Miles in the late afternoon to return to our hotel. We sit for a while on the cool terrace overlooking the river, sunlight slanting across the green Backs of the university as we talk through the events of the day. We are both wrung out; seeing Miles in this new environment has been freshly painful. In a way, we realise, we've been lulled by the routine of Putney and must now, with so much at stake this week, confront our hopes and fears with a new intensity.

Each day Miles undergoes a different form of testing with Dr Coleman. He responds to commands both verbal and written in four out of five trials. We are amazed to see his intense efforts to co-operate and he is clearly exhausted by the end of each day. When the fMRI is done it is confirmed that he does not retain a full field of vision, the damaged right occipital lobe remaining blacked out, though the left side lights up to photographs of the family and famous faces. But during the seminal test he does not succeed in performing the crucial mental imagery tasks. His brain does not light up when asked to imagine playing tennis or moving around the rooms of his home.

Will and I hear the news with bleak resignation. Dr Coleman stresses that a negative result cannot be interpreted to say Miles is unable to perform these tasks since false negatives occur in healthy volunteers; he also notes that problems with Miles's eyesight and spasticity could be masking his ability to respond, as well as his inability to initiate actions. I fear that he is trying to be kind with these caveats. Getting to know him this week I have a sense of an almost spiritual mission to achieve, through his research, a worldwide alleviation of the suffering and hopelessness in low awareness states and this extends to his concern for the relatives. At the end of the week I can see he is sincere when he tells me how much he has enjoyed working with and getting to know Miles. He has worked incredibly hard, he says, and I would like to review his situation in six months' time. I very much hope things will continue to improve for him.

It is true – not since Miles came out of his coma have I seen him making such a consistent effort to engage. When Will and I sit in with him during the computer work with Dr Coleman we both recognise his clear interest in what he is being asked to do and can see his determined attempts to succeed. How can I tell him he failed the central challenge, the fMRI test? I cannot, I dare not, undermine his hope in any way. For the first time in my life I must lie outright to Miles, to whom one could only ever tell the truth.

Ron is visiting Miles over lunch today and I take the opportunity to meet up with a friend at a restaurant near the hospital. We've known each other since our early twenties and have shared most of the events of the ensuing decades with sympathy and brio, the kind of intimate friendship that leaves one nourished through laughter. Through the painful years of my divorce, with her I could laugh.

She loves Miles, has known him from the bump in my tummy to the last time when I saw her helplessly flirting with the handsome young man who was teasing her so fondly. When we meet for lunch she asks me immediately, How is he? I wish she hadn't. There is no change, I tell her. I'm going to see him later. Let's talk of other things now.

The truth is, I don't ever want to be asked how he is, even by close friends. It is a question I dread. I understand why people ask it, but what answer can I give? Nothing has changed and there is nothing to say; the particular pain lies in having to confront that out loud. If I'm enjoying the relief for the moment of not thinking about Miles's situation, I don't want, without warning, to be suddenly made to. I talk about this with another friend of mine, Jennifer, who was at lunch that fateful Sunday in March. She is now undergoing chemotherapy for breast cancer and she understands. Someone I don't know terribly well came up to me at a party the other night, she tells me, and I could see the expression on this woman's face suddenly changing into that sort of do-goodery voyeurism I dread. How
are
you? the woman then asked me, her head tilted dolefully to one side, and I couldn't help it, Jennifer says, I just replied – Do you know, I was feeling absolutely wonderful until you reminded me. I love Jennifer. It is not only because she's a psychiatrist or that she now has cancer that she understands, for from the beginning, from her early phone calls to me in Innsbruck, she knew. Grief is private, only to be shared by choice. Intrusion, even when well meaning, exacerbates the pain, ratcheting it up out of nowhere like suddenly knocking an already broken limb.

I am still a figure of dread, the mother whose son is in a coma, but I am more approachable now. My maimed state has become familiar. Though I know it is understandable for people to ask how Miles is, my defences remain fragile, easily breached, and there are other recurring and more invasive questions than ‘How is he?'. As a family we are learning to see these questions coming and to fend them off, inevitably asked by people we know less well. Are Miles's eyes open? they ask. When you're with him does he know you're there? Can he speak? Can he hear you? Can he eat normally? Does he know where he is? Does he look the same? Taken by surprise, we begin by answering them, but one question seems to lead insatiably to the next until our painful, unwilling sharing of Miles's predicament turns to bitter resentment. The niceties of behaviour have, it seems, to be observed; somehow it feels incumbent on us to be polite and appreciative in the face of people's concern. But this does not feel like concern, it feels like curiosity bordering on voyeurism. Thank you for asking, I have now learnt to say, but if you don't mind I would rather not talk about it. What I want to say is, Why are you asking such a question? What is your real interest in the answer? His predicament is private; your curiosity makes this feel like a freak show.

I don't like this sullen protective anger as I try to deflect the conversation. Interacting with people used to be uncomplicated. I think of Jacqueline, who lost her
24
-year-old son in a car crash, telling me that she could no longer speak to two of her former close friends because they said the wrong thing after his death. I remember thinking at the time what a pity it was that she was so implacable, that her friends would never have meant to be upsetting. Now I understand, though I wish it wasn't so.

But the friends who do understand have been the crucial backbone of support from the moment of Miles's accident. Extraordinary, undemanding thoughtfulness: bringing home-cooked meals, pot roasts and fresh loaves; gifts of massages, facials, spa treatments, books; cards dropping through the letter box with random news that delights; invitations to the theatre, art exhibitions, meals; or just regular phone calls to chat about things other than Miles. The friends on whom I know I can call in moments of despair, who will listen without instructing or intruding. And the young friends of Miles who continue to visit him despite the difficulty are a constant deep source of comfort for us all.

I think now of the parents of a girl on Miles's ward, Hamad and Yasmin, who want no outside distraction in the long vigil as they wait for their daughter Mia to wake out of her coma. They do not accept the doctors' diagnosis of persistent vegetative state, despite Mia having lost a large part of her brain in a car accident and her showing no response of any kind in the four years since her accident. Old friendships abandoned, they have made a new social life within the hospital, joining the groups of relatives who find comfort in sharing the lives and stories of their damaged children. All the people who make up this group are parents and all are hoping for a miracle.

Many are people of faith. Hamad and Yasmin are Muslim; five times a day they leave Mia and go somewhere private in the hospital to wash and pray. During Ramadan they fast until sunset. Each night they have supper in the canteen, for they will arrive home too late to eat. Leaving home every morning at ten they drive the two-hour journey to Putney to arrive in time for the opening of visiting hours at noon. They leave at the end and drive the two hours back, arriving home at ten. She will wake, they say, and we must be here for her when she does. Our life before this thing happened is of no importance.