Beyond the High Blue Air Read online

  There are twelve beds on the ward and the patients come and go. Patrick arrives on the hottest day in mid-July and in the badly ventilated room the smell of him is shocking. He lies on his back unconscious on the bed, a delicately built man with a mass of wild, matted curls framing something terrible and purple that was his face. We call him Panda Man because of the huge black circles where his eyes should be, but really he looks more like a little elf that has been in a violent punch-up. It turns out he has been in a punch-up of sorts, having been picked on by a group of young men who knocked him down and kicked his body repeatedly for that Saturday night’s entertainment. Apart from the broken bones so much of his brain was damaged that he is here now, in this Acute Brain Injury ward. Over the next few days he regains consciousness and his face pales into beautiful shades of lilac and violet as the bruising subsides. He speaks in a surprising, mellifluously precise voice, choosing his words with great care as he refuses to co-operate with the nurses’ attempts to wash him or clean his teeth, change his pyjamas or brush his hair. He will not endure any attempt at personal hygiene and his cracked and blackened feet and ragged yellow toenails reveal years of neglect. His meal tray is still untouched when the carer comes to collect it because he will only eat when he feels like it. Often he’s nowhere to be seen, until we realise he is asleep on the floor under his bed; sometimes he will squirrel round and round and round into position on the chair next to his bed before going to sleep there instead. He doesn’t like beds, he says, they’re too soft, he isn’t used to them, and tells the social worker he preferred his cardboard box. A nurse bends down to coax him out from under the bed, in the patronising sing-song voice reserved for brain-damaged patients that we’ve got to know and resent so furiously. Oh gracious, Patrick, I can see we’re under our bed again. You’re very clever at hiding, aren’t you? I’m sure it must be awfully nice and quiet down there but perhaps you’d like to come out and join us this morning? There is silence from under the bed and the nurse bends down even further, peering under the bed as she tries again with exasperation now overlaying her coaxing tone. Come out now, Patrick. Maybe there is something I can get for you? Slowly Patrick emerges and sits up on the floor. Thank you, how very kind, he says. I would very much like some roasted peanuts and a glass of dry white wine.

  Some days later he disappears and this time is not to be found. Still under treatment, badly bruised and in obvious pain, he had gathered his few bits of clothing and walked out of the hospital, back to his life on the streets where he wanted to be. I hear later from the social worker that he was a highly educated man from a cultivated background who had chosen to become a tramp – it was the result of a clear decision. He had no contacts and no official support. He did not draw the dole or claim any benefits and when pressed to do so he retorted that he considered it immoral to accept help when it had been his choice.

  Miles has been out for the evening with friends from work. They went straight from the office to a bar and then on to dinner, and now he is waiting for the bus to take him home. It was a good evening and he has had more than a few drinks. There are two other young men waiting at the bus stop who are very drunk; it appears from their conversation that they have been drinking together for most of the day. One is small and sharp-faced, his movements a little too jittery for comfort, his friend larger and slower but not un-menacing. They’ve ended their evening with takeaway pizzas and the smaller man is enjoying kicking the empty pizza boxes around the bus stop. It is bothering him that Miles is standing there in his suit. Miles knows he must look a prat in a suit at this hour and has been on the phone to his girlfriend, trying to ignore the comments and the clearly provocative kicking of pizza boxes. The small man can’t contain himself any longer. Hey you, are you looking at me? he sneers, lurching up to Miles who ignores him and turns away, continuing his conversation with Annabel. The man is even more insulted and he persists. Did you hear me? I said, you wanker, are you looking at me? Still Miles ignores him, but after a few more taunts the irritant hits its target. Okay, says Miles, putting away his phone. Yes, I was looking at you. And I was looking at my phone, and at this bus stop, and at a load of other shit all around the place. He has given Jittery Man just what he wanted; he could have ignored him or given the pacifist’s reply but he hasn’t and he has hit home. You can fucking piss off, you fucking posh twat. Been at the office today, have we? Fucking wanker with your fucking bonuses, and he comes closer, weaving in for a fight. Hey, hey, calm down boys, says the larger man, restraining his friend with his left hand, but as Miles steps back the large man uses his free right hand to deliver a surprise punch hard in Miles’s left eye. Miles reels back as his eye immediately puffs up and closes but he recognises with a surge of pleasurable adrenalin that his boxing training can finally be put to use. One right hook removes the large man’s front teeth and his second punch knocks the smaller man to the ground. He walks down the road and hails a cab.

  When he tells us the story he makes it wryly funny. He is ashamed, but a part of him is pleased. Only one eye and he still knocked the bastards out, even though he’d been fool enough not to keep a look out for the second man. But I know I was an idiot, he says. I should have walked away.

  The physiotherapists are fighting a losing battle against spasticity, one of the most common side-effects of brain damage. Miles’s feet are beginning to turn inward, arched like a dancer on pointes. As a consequence of the initial injury having been to the right side of his brain, his left foot is the most affected; his left hand, too, is beginning to stiffen inwards, the fingers becoming clawed and difficult to stretch out fully. The physiotherapist makes splints to support his feet and hands and to hold them in an open position, and his anti-spasticity medication is increased.

  I remember being surprised when the physiotherapist at Innsbruck asked if I could bring in a pair of Miles’s shoes. Will found a pair of his trainers but they wouldn’t do – stiff leather shoes were required, she said, they needed to support his feet when he was sitting up in a chair. I didn’t understand, and found the incongruity distressing, seeing him sitting up strapped into his chair, eyes closed, in a coma, with his black leather office shoes on. Now I understand.

  I wish it wasn’t called spasticity. I had not heard the word before Miles’s accident, only knowing spastic as a term used to describe cerebral palsy before it became a term of abuse. I had a friend who worked for The Spastics Society when the name was changed to its present name, Scope; the word spastic had been an issue for some time with its members and finally research was undertaken to ascertain its effect on the charity. Parents were not contacting the Society for help because they feared their children being branded as spastic, and business corporations were not supporting it because they did not want to be associated with the derogatory image. In 1994 it was relaunched as Scope. I remember the public relations exercise, the billboards: Pillock, Nerd, Spastic, Moron: which is the odd word out?

  At the time I had thought that the condition of being spastic only occurred with cerebral palsy. Now I learn that it can follow from traumatic brain injury, stroke or disease and that it is damage to the upper motor neuron that causes the stiffness and involuntary, uncontrollable muscle spasms. Even though I’m not sure exactly what the upper motor neuron is, I know that spasticity is a chronic, debilitating, painful condition, prevention of which is key to acute neurological rehab. If Miles’s spasticity is left untreated, his limbs will continue to stiffen as the muscles contract and his joints will lock, eventually becoming immobilised. I see pictures of untreated brain-damaged patients curled up into the foetus position. If unhalted he will be in severe cramp-like pain from the contractures, which will further exacerbate his spasticity, and the immobility means he will be more liable to develop bedsores. I understand it is a race against time.

  Queen Square leads the field in the treatment of spasticity. Alongside conventional treatment, homeopathy is offered, and I meet a therapist on the ward one day who wo
rks at the National Homeopathic Hospital next door. He has just given Miles a massage and Miles looks so peaceful I ask him to show me how to do it. He does so, and suggests I bring in some essential oil to massage him myself. It seems a good idea.

  The next day I tell Miles what I am about to do. He is seated in his chair, eyes closed, possibly asleep. As I begin to massage in the pungently scented lavender oil I’ve brought I’m uncomfortable, it feels somehow presumptuous, assuming that he will enjoy my doing this. We are a tactile family and my relationship with Miles is a close one. But I am sitting at his feet, anointing them with oil in public; what does that signify to him? I try to remember the movements the homeopath used, slowly pressing down on each toe to lengthen them, kneading the arch of the foot with my thumb. Slowly Miles’s face changes, a slight twisting of his mouth and a movement of his forehead that could almost be a frown, and I can’t tell whether it is an expression of embarrassment or disgust or simply that I’m not doing it properly. Does he find this demeaning, for himself and for me? I stop and rest my head on his knees and cry with bitter shame and disappointment at failing to get this right, to bring him some little pleasure at least.

  A friend has come to visit Miles whom I have not met before, though Miles has often spoken of him. Mitran is a photographer, at present helping children in Afghanistan by teaching them to skateboard and have fun despite the war they are living through. He looks striking in the orderliness of the hospital ward, his wild hair and laid-back appearance a refreshing contrast. Ron and I like him instantly on meeting him and I can see his warmth and unaffected charm is attracting the nurses too, who seem to have converged around us. He is in London for a short visit and he has brought a photograph with him that he took on holiday with Miles. It is extraordinary – not only is it perfect as a composition, but he has managed in the split second it took to capture the essence of Miles’s particular vitality, of his energy and his joyfulness. Oh wow, the nurses are saying as they look at it too, that explains so much about Miles. What an amazing picture! As it is passed around I think I must frame this photograph and leave it next to Miles’s bed. Anybody treating him will understand him better when they’ve seen this.

  Miles had invited a group of friends out to our house in France for a week of sunshine and poker. We had a brilliant time, Mitran says. We swam and messed about in the day and in the evenings we barbecued and drank that sweet fortified wine you have down there and played poker into the early hours. His photograph catches Miles ‘messing about’ with another friend: there is a short lawn which ends in a 2-metre drop to the stone-paved poolside, and Miles and his friend are leaping over the gap with flying kung fu kicks into the pool beyond. It was a particularly dangerous drop, one we worried about when we bought the house. We had expressly asked that no one attempt to jump into the pool, half-knowing that the challenge would be irresistible. Now I’m glad that Miles did it – Mitran has caught them mid-air and the expression on Miles’s face is one of pure exhilaration, vividly alive. It is a powerful affirmation of his vitality and his daring, but now it reveals something else to me too – fragile, existential, of life and living, our dreams and hopes and eventual isolation and loss.

  People so often say to me now, when the subject of Miles arises: I don’t know how you manage. I have no option, I tell them. But it sets me thinking.

  In the end I suspect it is the small, routine pleasures in life that make the best building blocks for survival. The things that have to be continued with, the unavoidable humdrum facts of just living: I try to engage in those moments and make them, at least them, enjoyable. What to have on my toast in the morning, tart marmalade or sweet honey, making sure the toast is still hot while I butter it. Getting the ratio of milk to coffee just right. Putting together clothes that please, then finding the earrings to lift my mood. In the evening time to sit down with Ron and whichever of the children is at home, to have a glass of wine the colour for the day, warming red or a cool white. Time to sit over dinner, even if I don’t have time to cook any more and it’s another Tesco’s fish pie. The final treat, an unhurried bath to end the day.

  Though not infallible, these are the everyday things that, made pleasurable, help for that particular moment to keep reality at bay. My evening bath is a case in point: with deliberate care I will set about to run myself the perfect one, testing the water from the mixer taps for the right proportion of just too hot to cold, adding a few drops of a favourite bath oil to scent the water, rose geranium or lime and basil, placing a large, clean towel within reach on the floor and fetching a book to place it safely on the edge of the bath in case I feel like reading. When the bath is run I undress and slide into the water, letting my skin register with a delicious shock each slow second of not quite scalding immersion. Then, taking a deep breath and exhaling the day with relief, I can finally rest my head on the bath’s edge behind me. As the water stills around my submerged body I luxuriate in this fleeting, scented interlude of peace. For the moment physical sensation takes over to soothe away the clamouring thoughts.

  Cushioning reality, distracting the mind through the small pleasures of living. Although not entirely unmuffled by grief, they offer a small coating of armour against the day. Sometimes, though, reality intrudes. I may be buttering my toast at breakfast when suddenly Miles is there across the table, reading the paper with uninterruptable concentration over great piles of toast and peel-thick marmalade, his coffee cooling to the temperature he likes it. Or at the supermarket, absorbed by the choices in the cold meat counter, I’m suddenly aware of the music overhead, a song Miles discovered as a teenager and played over and over in the car on our long journeys to and from school. Standing there, holding a packet of smoked ham and feeling the cold air drifting out from the counter, I see Miles as though in technicolour beside me, his face just beginning to elongate into adolescence, the first few spots broken out, his strong, decisive hands as he slips the Cure CD into the player; then, for a moment, I am lost in the joy of his company, the way our conversation covered everything that mattered, the way he could make me laugh until I ached, before the familiar blinding pain follows and I must concentrate on nothing else except holding myself together until it passes. Or I may be lying safely in the bath at the end of the day and suddenly remember another bath-time, the night of Miles’s birthday on the Sunday before he left for St Anton, when I had heard the familiar ping of a text message received and read the thank you he’d sent: Best cake ever, Ma, Will and I just polished off remains. Thanks for great birthday. Love you loads and see you when I get back xx. And so memory continues along its barbed, relentless course and I’m not safe after all. Now I remember the awful prescience of my reply: Had just been thinking how much I love you! It’s been 29 wonderful years, and then his reply: And I love you very, very much. The following Sunday I would be on the plane to Munich; twenty-nine years and one week later his brilliant, funny, undomesticated, risk-taking, fearless, vital selfhood would be extinguished in one catastrophic blow to his brain. There is no escape. The bath water is beginning to get cold. I must get out and get ready for bed.

  George is in the bed opposite Miles and he is soon to be discharged. Like Patrick he too is homeless, but it has not been his choice. In one of his regular fights with fellow tramps he sustained a serious head injury, but is now recovered and walks about restlessly in his blue hospital pyjamas. Garrulous and disinhibited, perhaps as a result of his injury, broken nose flattened to one side, not a full set of teeth, his presence is disconcerting with its hint of bewildered aggression.

  He likes to come over to Miles’s bedside when I’m there. Miles is a good man, he says. It’s very sad, Miss. Please call me Lu, I ask him, but he refuses. Miss is easier, he says. He looks down at Miles and I can see George is genuinely sad, his tenderness like a secret gift he reserves for Miles and me, for his treatment of the nurses is abusive and his behaviour towards the other patients dismissive and resentful.

  One morning whe
n I arrive on the ward he calls out excitedly before I can get to Miles’s bed, Miss, Miss, Miles is talking! I heard him talking last night! I was so happy for you. For a wild moment the whole world tilts and lifts and I am flying to Miles. He can speak! Nothing will matter any more now that he can speak – however slow his recovery might be, he will be back with us and can tell us what he wants, what he feels . . . What did he say in the night? Did he call for us? I can ask him! As I reach Miles’s bedside the physiotherapist who is attending to him gives me a look that tells me everything. No, it’s not true, it’s just George’s imagination and he’s not quite right in the head.

  The physiotherapist finishes her session and takes her leave. I want to be alone with Miles, away from everybody. I want peace, and silence, just the two of us. I’m tired. I’m so tired of negotiating people. But here is George, standing awkwardly in front of me. There are tears in his eyes. I’m so sorry I made that mistake, Miss. I was sure I heard him speak, but I think it must have been someone else. I’m really sorry. It’s a dreadful world. He looks so forlorn, this big man with his crushed face, that what I feel for him could almost be love.

  Two days later George absconds and is found by a nurse sitting in the sunshine on a bench in the square outside the hospital, drunk. He had got some beer – how, in his pyjamas, nobody knows. The nurse brings him back up to the ward and he glowers like an insolent schoolboy at the ward sister as she admonishes him. You are not here for fun, George, the ward sister says sharply, and you know very well that you are not allowed to drink alcohol because it will prevent your recovery. I will have to tell the doctor that you have disobeyed his instructions. Now go to bed and sleep it off. George sulks for the rest of the day, does not co-operate with the nurses or therapists and growls at Hussein, the patient in the bed next to him when he does his choking cough, George blocking his ears with his fingers like a child.