Beyond the High Blue Air (26 page)

Four days later Ray died. I was away for a long weekend and Joseph told me what happened. Ray had been readmitted to hospital and then was sent back to Gael Lodge. There was nothing more that could be done for him and he was put on a syringe driver of morphine with no further treatment prescribed. When it became clear he was dying Tracy spent the night in his room and in the morning she went to Rachel to explain that she would now have to call his family because in the Romany tradition all his relatives must come to see him before he dies.

The first one arrived at
10
.
30
in the morning and by the end of the day more than two hundred people had come to see Ray. All of them were travellers, large men and women who crammed themselves into his small upstairs room while their children ran about through the day rooms and in the garden, shouting happily at each other and throwing snowballs at the windows. The adults brought in alcohol and smoked in the ward. One man fell over in Ray's room and cut his head so badly the nurse on duty had to attend to him; another fell off the chair in Rachel's office while asking her to phone Croydon police station because he was on bail and due to report there in an hour – could she explain to them that his brother was dying so he wouldn't be able to make it? Despite the care staff putting up a large makeshift notice warning that the lift could take no more than six people, in the early evening it finally broke down completely between the two floors with ten people in it. One of the men had tried to force open the metal doors, cut his hand, and bled all over the lift and down the lift shaft.

Throughout the day Tracy remained at Ray's side. Her behaviour was impeccably restrained during this final time; she understood what was happening. Little Ray was not with her; he played with the other children. Around
7
that evening Ray died and the last travellers took their leave.

The ward is small and there is only one lift. Repairing it is an expensive and complicated procedure. Luckily Miles's room is on the ground floor, but for the next few days the patients upstairs are unable to be brought down for treatment, while Ellen has been stranded downstairs and has had to be re-accommodated on another ward.

Ray's death affects us all deeply. The ward feels a much colder place without him, without Tracy and little Ray, their exuberance and their innocence.

Six months have passed and I call Dr Lazard. He tells me that the MCS case he had told me about is still under review and he does not think it will be resolved for some considerable time, probably not until next year. He reiterates his view that there is absolutely no point in our applying to the Court until we know the result.

Miles's mood is increasingly bleak and nothing we do appears to distract or engage him. Claudia returns from a visit one day in tears. He seemed so depressed, so utterly desolate, Mum, that I just couldn't help slipping into the old thing of telling him how well he was doing and how he would recover. And then the same thing happened as before – as I said the words he did that awful tensing up he does, his legs lifting rigid and his head pushed forward out of the headrest and he glared at me with such undisguised fury it was obvious what he was saying, he was telling me to stop the lie. It was frightening. I felt I had to apologise and I said I'm so sorry, Miles, it's not true. You understand your situation. I know what you want, and I'm going to look into ways of doing it for you. I will help you get out of this. As I said that he relaxed back into the chair and closed his eyes in the way he does when we've understood him and the effort is over. His anger was shocking, Mum. He still feels so passionately. I can't bear him suffering like this.

None of us can. I see how it is affecting Will and Marina too, the solemn tenderness with which they engage with him and their extreme sadness after each visit, the sense of defeat. We try to make a point of having Miles's friends around on Sundays, so that his visit home is lightened with outside banter to lift the atmosphere. But while the children and I continue to wait for the results of the Court of Protection case, our mood is darkening. How can I describe the fact that we now sit around the kitchen table and discuss how to end Miles's life ourselves? We have heard that it is quite possible to buy the necessary fatal drug over the internet, but the dread-filled, restraining fear is that we don't know the precise, correct dose. I have a number of friends who are doctors. Could I ask them? Do we really have the courage to follow this through? Our desire to help Miles is now accompanied by a growing anger at the realisation that one man or one woman, a judge, a person who does not know Miles and most likely has no personal experience of traumatic brain damage, will be the ultimate arbiter of his life. How can his or her personal beliefs not influence the outcome? It is a deeply sensitive, personal,
moral
issue; it should not be a legal one.

I think of the moment when Miles pressed his thumb down on my hand under the pergola, his look of deep, yearning pity. I can't help but believe that at the beginning, in Innsbruck, he stayed for our sake, the ultimate protector. He has suffered enough for that decision. It is our duty now to let him go.

In cold desperation one morning I contact Dignitas. As I dial the number I sense that the line I am crossing with this call is irrevocable. I explain the situation to the person who answers the phone, though all the time I am aware that Miles will certainly not be eligible because he is not able to express his intention to end his life or to undertake the last act himself, either to swallow or to administer the drug via his gastric tube. The woman I am speaking to confirms my fears, but she is so understanding and sympathetic that I find myself crying on the phone with this stranger. I feel so helpless, I tell her. My son falls outside every avenue of hope – he is not PVS so he doesn't fit the British legal qualification, he is not eligible for Dignitas, and he can't do it himself. Yet he is aware enough to suffer, and to convey his suffering to us and to the doctors treating him. I wish I could help you, she says. Maybe in the future you will be able to help me personally, I tell her. I strongly support the view that, when facing the end of life, if it is what a person wishes, he or she should be allowed to choose the time and the manner in which they die. I do not think it should be for the state to decide.

Putting down the phone I think: I have cut the very last thread of hope. We are in a different place now. And then I think: maybe all four of us should hold the fatal syringe together. We will gift Miles this last thing as one, loving him as one. Let the judges do with that what they will. Put the four of us in jail. How the tabloids would love it. Perhaps it would finally make somebody understand the wretchedness and indignity of the lives so many people are currently condemned to live.

Talking to Jennifer I tell her of the call to Dignitas. She is one of my closest friends and I am losing her to the breast cancer that has now metastasised, though for the moment she is in remission. She is a doctor, a consultant psychiatrist. She has known Miles since he was a boy, has three children of her own, and the prospect of losing her warmth, vitality, humour, wisdom, I cannot absorb. I will do it for Miles, she says. While I lay in the hospital bed after my last treatment I could only think of Miles. I understood, for a while, what he is going through. I had to ask the nurse to stop the hands on the clock above the door – I could not endure the seconds passing by. Time was a terrible thing, unbearable. I would gladly release him from that and you know I no longer have to be concerned with jeopardising my career. But I cannot let her; her remaining life is fragile and I don't want her to take on such a responsibility. It is entirely ours to resolve; and yet we cannot bring ourselves to act.

In a way Jennifer's offer clarifies my dilemma, our dilemma. The desire to help Miles is clear and fervent, but it is a matter of principle, a thing of the mind. The physical act, however we use words, language, to describe our desire for it, is different. It is not our place. We need instruction; we are not doctors, we do not know how. We fear getting it wrong. Compassion is not enough; skill is required too. I have followed the story in the press of a mother who tried to end the life of her son who suffered a traumatic brain injury when, following a pub fight, he was taken to hospital by ambulance but managed to open the back doors and fell out while it was still moving. Two months after his injury she injected him with street heroin in an attempt to end his life, but instead he suffered a heart attack. He was resuscitated, following which his disabilities were even more profound and he was now deemed to be in a vegetative state. She was banned from seeing him, but some months later she gained entry to his rehabilitation unit under an assumed name and this time the dose of heroin succeeded. At her trial the doctors said that her son was showing signs of possible recovery before her first attempt disabled him further. She was jailed, after appeal, for five years.

I do not identify with this woman, though I feel immense pity for her. I find it incomprehensible that she did not give her son a chance to recover, that her first injection of heroin took place only two months after his injury. But then I do not know her story.

If the law were changed, if consent were required and properly given both by the doctors treating Miles and by us, his family, then Miles could be released without dilemma, helped by his doctor as he should be and allowed to go gracefully and painlessly. It is what he wants, but it cannot happen. Perhaps in fifty, a hundred, years' time we will have learnt to accept death when it is necessary, instead of keeping it in abeyance at all costs.

VI

It is the Easter weekend and spring has come early. How blithely the year comes round without Ron, the new buds and growth disconcerting in their tenderness. We bring Miles home on Good Friday and, wheeling him out into the garden, we set his chair in the shade and draw up the deckchairs alongside him in the sun for ourselves. How glad I am the children are all here, books and newspapers piled next to us on the grass and the peace of this garden behind its high walls, all luxuries to be savoured. But Miles is uncomfortable and tetchy, coughing more than usual and finding it difficult to clear his throat. I fetch the hated suction machine, drawing out the phlegm from his mouth and the back of his throat and watch it fill the machine's container. As I stand over him my mind wanders back and I think about how at the beginning Miles would obstruct us, biting the hard end of the tube and not letting go, and then suddenly, today, as he looks up at me with the helpless passivity with which he now allows us to do this thing, it is too much to bear. Stopping the machine I put away the tube and bend down and put my arms around him to bury my face in the curve of his neck as the familiar wave of pain engulfs me. When it begins to ebb away I realise Claudia has left what she was doing and is here too, her arms around us both in a silent embrace. Miles is starting to cough again so we move and I resume the suctioning. You're a darling, I say to Claudia. My back aches slightly; hugging Miles when he is in his wheelchair is never comfortable, you have to bend forward in such a way that the small of the back takes all your weight and I've never found how to solve the problem.

On Sunday morning Marina and I drive to Gael Lodge and we talk about that first Easter in Innsbruck, the earliest memories, fragile now with retrospective knowledge of our naïvety. The colourful stalls on the cobbled plazas of the Old Town selling painted eggs, elaborate breads, marzipan cakes, stout men and women dressed in their surreal Easter rabbit costumes regaling the children, the shock of confronting the festivities as we walked through the April sunshine to visit Miles lying unreachable on his hospital bed. The fantasy, it turned out, that none of us could suppress, that he would wake and rise up from his bed and talk to us, tell us where he had been, what he had experienced. We were sure that could happen. How strange it is now to imagine ourselves then; we are no longer the same people.

Arriving at Gael Lodge we find the in-house service in full swing in the main day room, wheelchairs drawn up and carers in attendance. Some of the residents are able to sing and the priest is helping them along in his splendid baritone. There are bowls of small chocolate eggs dotted around and a lunchtime barbecue in the garden is planned; today is going to be fun for the residents who can join in.

When we get home the day starts peacefully. Miles is awake and we all chat to each other, reading bits out from the Sunday papers and trying to find things that might amuse or interest him. But then the day deteriorates, his cough constant and the effort to clear his throat becoming more and more difficult. By early afternoon he is exhausted, but his coughing has not been followed by the usual roar of anger and frustration; instead he coughs, chokes, arms and legs stiffening with spasticity and his face growing purple before he manages the final gasp of air, then silence, broken only by heavy breathing as his limbs slowly retract. The silence is such a marked change that I am alarmed, his passivity, his slumped calm like the deadened, glassy inertia of someone at the deepest reaches of their depression. I take his hand and find myself pleading with him. Miles darling, please don't go away like this now. We are doing everything we can to help you, though I know how unendurably slow it seems. I cannot bear to lose him like this before he has gone.

Will and I drive him back and I tell Jana of my concern. She will call the doctor on duty. I know there is the ever-present danger of chest infections turning to pneumonia for people who are bedbound. We exist in a strange paradox. While we dread the ordeal he endures day after day and long for his release, the reality of his becoming ill and suffering further is terrifying, to be prevented at all costs.

On Easter Monday the infection escalates. Claudia and I arrive in the morning hoping to bring him home, but it's clearly not possible. He's still in bed, flushed and sweating. When he coughs he struggles to get his breath, but he does not look fearful; it is I who am afraid. There is something about him that makes me feel his acceptance of this is willed, for I am aware of that fierce determination that used to be his defining characteristic, a sense that at last he is back in control. Eventually he falls asleep and we stay on in his room, watching him, checking his oxygen levels, reluctant to leave. Matthew is coming and the nursing here is skilled; there is no more we can do but we don't want to go. He sleeps for the rest of the day and in the evening we leave.

Before going to bed I call the ward and speak to the nurse on duty, who tells me Miles is sleeping well, despite his raised temperature. We will keep an eye on him through the night, she reassures me.

Tuesday morning, the Easter weekend over and the children back at work. Fran, an old friend of mine who lives in Hong Kong, is in London and has asked to see Miles. Our two families would often join together for Christmas in the Alps. Her son, Paddy, became a great friend of Miles and Will, little boys creating snow forts only to destroy them in furious battles and then as teenagers, snowboarding, finding ever more perilous jumps. When Paddy fell into a crevasse off-piste Miles grabbed hold of him, clinging on while Will left to find help. The story still haunts Fran, though she laughs as she remembers that instead of falsely reassuring Paddy when he asked, terrified, Am I going to die? Miles responded frankly, I don't know.

This will be the first time Fran has seen Miles since his accident. I call her and tell her that he is unwell, but I can hear how upset she is at the thought of not seeing him. I won't stay long, she says, I would like just to see him again. I've thought about him so much over the years. He was exceptional. She continues and I'm in tears when I put down the phone. I'm reminded afresh of the waste, the senseless waste.

Jana is in Miles's room when I arrive. He seems more settled, she says, though I'm a bit concerned we haven't been able to lower his temperature. Again the unspoken fear is pneumonia, the sudden escalating of his chest infection. Miles looks more drowsy than usual, neither asleep nor awake, and his breathing appears more shallow, but an infection always does that, especially in his compromised condition. Matthew has seen him and for the moment there is nothing more that can be done. At least, as drowsy as he is, he does not look as though he's in any discomfort. Fran's impending visit may not be as difficult as I thought.

I should not have worried about her. She is immediately at ease with Miles, goes straight to his side and quietly and warmly engages with him. He appears to rouse a little at the sound of her distinctive voice, but it's short-lived. His face resumes the bleak, resigned expression he has nowadays and he closes his eyes. She is undeterred, pulls a chair up to the bed and, holding his hand, begins to reminisce about his escapades with Paddy when they were small boys. Maybe Miles will enjoy that. As I always do when friends come to see him, I'll leave them on their own. I'm going to make some tea, I tell her. Call me when you feel you've had enough time. I'll be in the day room.

The making of tea here is a ritual, a necessary punctuation of the time. I don't want it particularly, nor the stodgily sweet biscuit I take from the guest biscuit tin, but the process is soothing. I will be alone in the small cubby-hole of a kitchen off the ground floor ward and as I wait for the kettle to come to the boil I can stand with my back to the world outside and just for those few minutes let my mind go blank. Then the swirling of the teabag in the boiled water, concentrating on ensuring I get the right colour and strength before removing it and adding the milk. Putting the milk away in the small fridge, finally selecting a biscuit, the ritual is over and I set off, no different, I suppose, from tea or coffee breaks in offices everywhere.

Walking back into the day room there is the usual social banter of being here, greeting a nurse or carer or relative, engaging with the residents from other wards who sometimes wander in. Really I lead a double life; this is my other social world now, a gentle world, a place of curious harmony. There are tiffs and crises, but everyone is safe here and people are kind. All the while the residents who belong in this high dependency ward are ranged around the edges of the day room, facing each other in their wheelchairs, Alex, Ellen, Petros and the others, their world a different one, mute, excluded even from this.

Eventually I pull up a chair and take out my iPod and something to read from my bag. Unwinding the knotted earphones I put them in, scrolling through the titles to find something and stop at Adele, recently added to the list for me by Marina.
Set Fire to the Rain
is playing, Adele's pure, rich voice taking me with her, when I realise Fran is standing at the entrance to the day room calling me urgently, Lu, Lu, come now, come right now. She looks strange, something about her eyes conveying more than the words, her face ice pale, and then she is calling for a nurse, a doctor, Help please, she calls, as I run past her to Miles's room. Please somebody come, he needs help, Fran cries, I think he's choking, somebody, please, Miles is not breathing properly. I run to the bed and lean in to lift him, hold him up, Miles, Miles, are you all right? What's happening? What's wrong, my darling? His face is darkened, his breathing rapid and shallow, but his expression is calm, clear, as though he is seeing through me, past me, far beyond this place and the moment to something infinitely understandable at last. I love you, Miles. A long shuddering breath, his eyes wide open so deep green, so deeply peaceful I freeze. I remember Ron, his last breath, his eyes. I don't understand. It is too sudden. Is Miles dying? Is this what's happening? I know he wants to go but I don't want him to go now, I want him to stay, I cannot endure the loss. I have not confronted the loss. My mind cuts loose and from somewhere far above me I look down and observe a woman holding a young man in her arms, see his strong face, his clear jawline, the thick dark hair and long lashes, so dark now resting on his paling cheek. The woman, me, I am gazing down at them both.

The silence is absolute.

There is no next breath.

Miles's breath erased, breath ephemeral as consciousness.

The door opens and the silence is broken in a blur of activity as Matthew and Jana enter the room. Matthew strides towards the bed and I step aside as he bends over Miles, speaking urgently to Jana who has joined him on the other side. I am suspended, useless, I don't know what's happening and I can't help. Eventually Matthew stands up and looks at me and then I know. Now I want to hold Miles and I climb straight up onto the high bed, the first time I have ever done that. Aware how preposterous and undignified I must look but not caring. Why haven't I done this before? All those times I could have hugged him properly like I am now, my arms around his strong back, my face in the sweet hollow of his neck; it seems unbearably sad that I have never done this before. I'm so sorry, my darling. I'm crying, a strange new sound. I love you, Miles. I love you, my darling, darling Miles. Lying there, even now his face cooling to stone, his chest, his heart beneath my heart holding its warmth. He wanted to go; I must not hold him back. You can go now, my darling, you can leave us, you need stay no longer. You have stayed long enough and we will survive now. You've taught us how to survive. I tighten my arms around him and we have melded, together we are crossing the divide and he is leading me, taking me with him, our bodies on the bed in the small room that is too full of people all disappearing far, far beneath us. Now there is only emptiness and absolute peace. I am void of all feeling; it is the pure peace of nothingness.

Miles, my son, has died.

Some time later – I have no sense of how long I have been there, with him and not with him – I climb down off the bed. The room seems strangely light, the silence immense. Huge Jana hugs me. Fran is sitting down on the only chair in the room, her head in her hands. She looks up and she is crying, Oh Lu, I didn't understand, I didn't know what was happening. I knew he had a chest infection, I thought it was just that, I'm so sorry. Her words float in the silence. I put my arms around her, detached, aware only of this sense of intense calm and emptiness. Please, Fran. He wanted to go. I must call the children and David. I call them, their shock, they will all come immediately.

I can't access what I feel. I remember the Sunday five years ago, watching myself sleep-walking, the same out of bodyness. There are things to do. Later I will talk to Rachel, ask about undertakers, know what happens next. But for now we will stay until they come to take Miles's body away. I don't remember any more.

I have made an appointment with the undertakers to see Miles in the mortuary. At the end at Gael Lodge he was surrounded by people and by all the paraphernalia of his damaged existence. I want to see him again, unencumbered, on his own. I did not need to see Ron again; his death at home was private and complete. I had told the undertakers to come and collect Ron's body in the evening and we had time to be alone with him, at peace in the quiet room and his death so gentle.

Marina wants to come with me. It is a comfort, for there is something, we are not sure what, that feels shared in our relationship with Miles. Perhaps, we say, as we drive to see him, perhaps it is his particular protectiveness of us. A kind of paternal protectiveness, Marina says, even of you. Arriving at the undertakers we are both guarded, this thing so private, Miles so much
ours
that it feels wrong to have to ask to see him. Who does his body belong to now?

A middle-aged woman is at the reception and she is expecting us. Her manner is restrained without being falsely respectful and I am grateful to her. She leads us down the stairs to the viewing room. You may stay as long as you like, she says, and disappears.