Beyond the High Blue Air

by Lu Spinney

  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 crucia
l 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.

  Not only are their old friends now irrelevant, but their two younger children are lost to them too. Both are teenagers still at school and I think the loss of their older sister must be complicated by resentment, for they never come to visit her. My young son is more interested in parties and girls, Hamad says. He has even told me that he finds Mia disgusting to look at now. I will continue to provide a home for him and my other daughter, but that is all; they have abandoned Mia in her hour of need.

  Hamad is a warm, sympathetic man but on this he is unrelenting. Yasmin remains quiet as he speaks, her beautiful face framed by the rich blue of her headscarf like a living Pietà. How can she bear this triple loss, estranged from her younger children as a result of the tragedy that has taken away her first child? Alone, sustained only by her faith and the shared obsession with Hamad, she waits for the miracle of Mia’s awakening.

  It’s raining, a bleak grey summer’s day. Miles is awake and Claudia and I are chatting in his room, including him in the way we have become accustomed. It’s easier to talk to him when there are two or more of us and the conversation is no longer one-sided. It’s raining today, Miles, I tell him. I remember us once discussing how strange that rain can make us feel restless, gloomy, cut off from something more exciting, but when we’re in bed the sound of it is so soothing and pleasurable. Do you remember, says Claudia, how we used to love swimming in the rain in France? You were the first to suggest it, Miles, and we all joined you and had the coolest time ever. The usual fleeting frisson of apprehension that maybe he doesn’t want to be reminded, but his expression doesn’t change from a look of calm interest. It occurs to me then that he hasn’t felt the rain in over a year. Why don’t we take him out in it now, I say to Claudia, we can let him have that sensory experience. It’s warm enough, it can’t do him any harm and he’s due for bed in an hour so if his clothes get wet they can be changed straightaway.

  We set off out of the ward, wheeling him to the huge lift that takes us down to the ground floor. It feels like an adventure and as we push open the doors that lead from the visitors’ room into the garden the questioning looks we get from staff and visitors make it feel even more so, as though we’re breaking school rules. The garden is quite empty, a clean sea of green lawn between the gleaming pathways and dripping wooden benches. What heaven, says Claudia, let’s run. So we do, propelling Miles what feels like dangerously fast along the slippery tarmac paths. I remember doing this with the children in their pushchairs, their shrieks of delight. The rain is as fine as sea spray on our faces and Miles closes his eyes in what I hope is pleasure as we run, enjoying the movement and this once familiar, elementary thing that now seems to me so poignant. What else have I not thought of, of all the ordinary things he loved that are removed from him now?

  The shock of disgust. The day I come home and I’m shouting at Ron: I can’t stand it any more, Ron. Do you realise what I’ve been doing all afternoon? Miles has had a bad day; I’ve had a bad day. All I’ve done is watch Miles sitting in his chair like a hopeless idiot – I contort my face grotesquely to imitate Miles when he is distressed – and he would not relax his legs down from the ridiculous horizontal thing he does with them when his spasticity is bad, he would not unclench his arms. He dribbled and coughed and then he choked while I suctioned him – great gobbets of phlegm came up. His brain is scrambled, I can’t stand it, his life is finished, done for, over, kaput. The whole thing is just preposterous, Ron, do you hear me, I can’t bear it any more. How on earth can I help him when he’s like this? I am in the swing of it now, shouting and gesticulating, and Ron is letting me do this. It is painful for him because he loves me and he loves Miles, but he has lost part of me to Miles – part of me has been damaged with Miles. We can’t return to the simple, pure happiness we had together before this thing happened.

  Some weeks later Ron wakes at night with a stabbing pain in his stomach and severe nausea. It has receded by the morning but it was so sudden and so violent I ask him please to see the doctor that day. He does, and is immediately referred for tests.

  I have come to meet him in the clinic after the test and we wait together for the doctor in the small, curtained-off cubicle where he has been resting as the sedation wears off. I’ve driven straight from Putney so I tell him how Miles was this morning and then we chat about other things, keeping at bay the fear that hovers unspoken. The doctor finally arrives, straight from the operating theatre and still in his blue cotton scrubs. A kind man, he can’t soften the blow. He has found two large tumours. I honestly don’t know how you have remained functioning normally, he says. You must have quite remarkable strength. He stays with us for some time and I gather that he knows about Miles. Ron must have told him; I don’t ask why but knowing Ron I fear that he knew something was wrong but postponed finding out, not wanting to burden me further.

  It is the end of November and when we leave the clinic the afternoon has darkened already, shrouded in grey drizzle. As we drive home the windscreen wipers scrape relentlessly through the mist of our incomprehension. Hope comes to the rescue, that primordial survival mechanism – how else could we face this? If the tumours are removed and the cancer hasn’t spread, then that will be the end of it. Ron hasn’t lost weight, that’s definitely a good sign. There is no history of cancer in his family. We know lots of people who have survived cancer and are still going strong.

  We’ve exhausted the subject by the time we get home. Belinda and Amelia, Ron’s daughters, are waiting for us. Now in their late thirties, they are of a different generation from my children, but the merging of our families has been a happy one and Miles’s accident has cast a shadow over their lives too. Now Ron must tell them that he has cancer. They lost their mother to cancer ten years ago and I know what dread this news will hold for them. By the time we have supper together the subject has been exhausted, the shock absorbed. The girls’ relationship with Ron is a close one and both live nearby; there will be a lot of us on hand to support him through whatever lies ahead. We don’t talk about cancer over the meal and instead enjoy a bottle of the wine we normally save for special occasions, though our conversation is tinged with strange urgency.

  I wake in the night and realise that
light is coming from under the closed office door, the room next to our bedroom which is usually left open. I get up and Ron is sitting at the desk in his dressing gown, writing. It’s all right, he says, please go back to sleep. I just need this time to work things out. I go back to bed. I understand; Ron has a habit of facing any problem, work or personal or of someone else who has asked for help, by writing it out to reach the decision that he will stand by.

  Before he leaves for work the next morning he brings me my morning cup of tea and sits down on the bed. I have made up my mind, he says. We are going to put this on the back burner. I want life to continue as normal – you’ve got enough to deal with and it must not intrude on our total commitment to Miles. Oh Ron, how can you say that? I take his hand as we share the crushing weight of this new, pernicious thing that has entered our lives with such callous timing. I can’t possibly put it on the back burner, I tell him. Of course I can face both things together. And we will emphatically face this together.

  What I can’t acknowledge is the truth, that loving Ron with the intensity I do, it’s not the same as a mother’s love. I don’t want to be put to this test. I must not let Ron feel he is taking second place, on the back burner.

  Two days later Ron undergoes surgery to remove the tumours. I am with him when the surgeon tells us the pathologist’s results. He has Grade IV cancer that has metastasised to his liver.

  The surgeon inspires confidence, he is serious and concerned and he is not unoptimistic. Ron will have chemotherapy to shrink the small tumours in the liver and then surgery to remove them. He could remain clear of cancer after that for some long time.

  This cannot happen to Ron. We cannot let this thing happen to Ron. How does the mind respond to calamity? But this time we understand – I think we do – what the calamity is. It is cancer and it can be targeted. Ron can survive this. He must survive this. He is talking calmly to the surgeon who sits across from us at the end of the hospital bed and they are discussing logistics, when the chemotherapy should begin, how long it will take. The surgeon says that time should be allowed for Ron to recover his strength from the operation, which was major surgery; chemo will begin after that.