Beyond the High Blue Air (22 page)

We scatter Ron's ashes, the children and I, at the house in France that he loved so much, our first house together. A white butterfly follows us as we move through the garden in the early cool of dawn. A dance of the ashes. Pearl-like, mother-of-pearl, the wind blows the ashes on our hands, clothes, hair, in our mouths.

I've gone to Paris again, to stay in the quiet of our friends' apartment and try to understand what has happened. Sitting in the sunshine on the window ledge with my cup of coffee, the church bells opposite begin to ring in a strange way. It's mid-morning, they don't normally ring at this time. Each toll of the bell is stark, it stops dead instead of lingering and melding into the next, and the tone is different, harsh, alarming. Something is wrong. As I open the window to look out the old familiar melodious bell begins to toll over the first, becoming louder and louder until it is an unapologetic riot of sound. I wonder if it is a wedding and the bell-ringer is new and got it wrong to start with. There is no one about, only a dark car with its tailgate open parked at the entrance to the church, and then I watch as four men in black suits appear, slowly descending the steps carrying a pale wooden coffin. Not a wedding but a funeral; the bells are inviting us to celebrate this life that has just ended. A priest in rich purple and gold follows the men down the steps and stands to one side as they lower and slide the coffin into the open car. People in dark dress are coming out of the church now, embracing one another, stepping aside as the four men reappear down the steps carrying out great stiff wreaths of flowers which they place on top of the coffin, leaning in carefully one after the other. The back door of the hearse is closed and as it is driven away the mourners begin to disperse. The priest in his splendid robes waits on the steps until there is no one left and then he is gone too. Silence again; nothing remains.

The journey by car to Gael Lodge is an easy one, driving through the alternatingly elegant and bleak residential streets of South London. I listen to the radio, music or people talking a necessary distraction. Today Bruckner's
7
th Symphony is playing, one of Ron's favourites, and I am thinking of him as I turn up the last long hill, past the delicatessen where I sometimes stop to get an instant supper on the way home and then the Baptist church whose Sunday crowd are so colourfully dressed it could be a carnival. Reaching Gael Lodge there is nothing to signify it being an institution, comprising as it does three conjoined houses in a street of similar Edwardian detached and semi-detached homes. It is a quiet street and the residents appear unconcerned about their proximity to a home for seriously brain-damaged people.

What must have once been large front gardens of the three houses are now paved to allow for a small number of staff and relatives' cars to park. Miles's room is on the ground floor, his bay window facing the street, and today there is a free space right in front of it. His blinds are open so he must be in the day room; when he is in the room the blinds are kept at an angle to allow for privacy. I pull in and park, but the Bruckner is still playing and for a while I remain in the closed car and luxuriate in the music, my eyes closed. It ends and I turn off the engine, get my bags together and open the car door.

What I hear then is the deep, bellowing sound of a creature in distress, a sound so loud and so terrifying I'm gripped by a kind of primeval fear. I've never heard anything like it. It does not sound human; such distress, such pain, could not be borne. It's coming out of Gael Lodge; how can the residents of this street live with such a sound? Another drawn-out, anguished, roaring cry of pain – it is coming from Miles's room. The blinds have just been angled down. This is my son I am listening to.

When I reach his room I find Miles raised up in mid-air in the hoist, being moved from his chair to be put to bed. His face is puce, his jaw rigid, his eyes dark with a rage that says everything there is to say. The two carers are distraught and they are frightened by him. He looks frightening. He suddenly started doing this in the day room, they tell me, so we thought it might be best to put him to bed. We can't understand what's wrong.

Oh my god, Miles, I understand. Your frustration – that is too weak a word – your total powerlessness to control any single aspect of your life, every moment of every day. How can you bear it? How can I help you? He leans forward in the hoist, he is staring at me, beseeching, demanding my help, but I am powerless too. I cannot help him.

Suddenly, in the midst of the bleakness there is what feels like a glorious blast of joyful news. Will is getting married to Albi, and the girls and I could not imagine anyone lovelier or more loved to be joining the family. To compound the happiness, Albi is pregnant.

It is going to be a private civil wedding, because more than anything Will wants Miles to attend. There will be just the two families present and Belinda and Amelia, followed by a festive lunch at home; a larger party for friends will be held in the months to come. Will searches for a venue for the ceremony that can accommodate Miles; there must be either ground floor access or a lift that can take him in his wheelchair. His left leg is now rigid, the knee locked in extension, which requires a minimum of
2
metres in all. After numerous unsuccessful visits he finds the perfect place, ten minutes from home. Rangers House is an English Heritage Georgian house set into the wall of Greenwich Park and the wedding will take place in the beautiful first floor Gallery, the lift unusually large enough to take Miles.

Claudia has offered to drive to Gael Lodge to collect him and take him to the ceremony and Moses will accompany him. It was extraordinary, she tells us later. Miles was waiting in the day room with Moses when I arrived and I have never seen him so alert and so intensely calm at the same time. He knew where he was going. Once he was in the van I told him I thought he should try to rest on the journey, or even sleep if he could, because it was so important he should be awake for the ceremony. He closed his eyes – he understood.

Claudia and Miles are early and waiting in the Gallery when I arrive with Will and Marina. I almost cry out on seeing him; he looks so intimidatingly alert, strong, normal, that for a ridiculous flashing moment I think he's back just as he was. His chair is facing the door and he is clearly calmly waiting for things to begin.

I had feared this moment, as much as I am thrilled the wedding is taking place. I had feared he would be having a bad day, might be contorted with spasticity, or coughing, or doing his signature roar of frustration. Albi's large family has never met him before and I know how difficult people can find it, being exposed to his situation. I want to protect him from their embarrassment and, in truth, protect us, the family too. I have spoken to Moses, have asked that, should Miles make a noise, could he please take him quietly from the room. It would be so very painful for Will to have the ceremony ruined in that way.

But now I am standing next to Miles, introducing him one by one to Albi's parents and her three siblings and I am brimming with pride. Miles is formidable, his interest in them a tangible thing, his authority palpable. When we move on to the ceremony he remains vividly alert, his body quite still, looking intently in the direction of the Registrar as she performs the ritual of joining Will and Albi in marriage.

Back at home we stand around the fire in the drawing room and toast the newlyweds and Miles is still actively with us. There is a point when I look across the room and see Albi standing by him. She has taken his hand and is holding it on her pregnant stomach and they are sharing an intense communication. He is looking up at her with an expression of great tenderness and pride mixed with fierce protectiveness; I can imagine him looking down at her with the same expression if he had been standing here today, undamaged. It is unbearably poignant, not just his love for this beautiful girl, but also as though he is more attuned, now, to an existence beyond the present everyday, that he knows he is feeling a new life under his hand, in the way a blind person's sense of touch and hearing are made keener through their loss. Look at Albi and Miles, I say to Claudia, who is standing next to me. I know, Mum, she says, a few moments ago I went to join them and I had to leave, I felt as though I was interrupting a very private conversation.

Finally the time comes for us to have lunch. An ambulance has been booked to take Miles and Moses back to Gael Lodge; he has been in his chair for five hours already and to stay on for the meal would take him too far beyond his seating tolerance. His absence leaves a space that can't be filled, but he has clearly and generously given Will and Albi the most precious thing he could have given them.

Rachel, the formidable manager of Gael Lodge, has her office situated immediately after the entrance to the building. The glass wall and open door exemplify her management style: open and direct, she misses nothing. This morning she calls me in as I walk past, as she does every now and then. We chat about Miles for a while and then she says, I must ask you something, Lu, which I'm afraid I have to ask all relatives connected with the high dependency wards. Have you ever thought about Miles being considered NFR – Not For Resuscitation? This is a shock. No, never, I reply. Not at all. Must I be on the alert again? Only here at Gael Lodge have I never felt the need to be in armed combat on Miles's behalf, as I was before he moved here and as I still must be whenever he visits another hospital or even enters an ambulance. But I know Rachel understands Miles and she understands the family; I know, too, that her first concern in every instance is for her patient.

If he suffers a cardiac arrest, she asks, do you want us to apply CPR?

Cardiac Pulmonary Resuscitation. I think of Ellen on the ward, whose heart five years ago stopped seven times and seven times the paramedics started it again. Pictures of her before her heart attack show a slight, sweet-faced girl with two small children, her tall shy husband, the sense of a quiet, self-contained family. Her husband no longer brings the children to visit because they suffer nightmares afterwards, remain withdrawn for days. Ellen must wear a gum guard to stop her grinding her teeth for her mouth works continuously, gaping open, lips bared, her expressionless face frozen in a scream without sound, blank eyes roaming unaligned before suddenly she clamps her jaws down together with shocking force.
Clamp
, open, freeze,
clamp
, open, freeze, all day long. Nothing else. I have to think how much better for her, her husband, her children, if the dedicated paramedics had not restarted her heart the seventh time. I would agree to NFR for Miles.

So I tell Rachel I will speak to the family and get back to her. Four years ago I would have wanted to destroy anyone why dared to suggest NFR. I think of Dr Mosley back at UCH; part of his cruelty lay in saying what he said to Will when he did. I understand how difficult it must be for doctors who see the MRI of a patient's brain and foresee the consequences of their injury, but must face the relatives who have no knowledge, no comprehension at all of TBI. How could they, unless they have had first-hand experience? Believing, hoping their loved one will recover is a necessary part of the means to cope, a crucial survival mechanism in those early stages of fear and confusion. It is the doctor's responsibility to respect this.

I leave Rachel's office and go to find Miles. It's late October, winter is near, the sky a wash of pale blue and a feeling in the air of snow having fallen somewhere far away. Despite the sunshine the garden is empty and I want to take Miles out into it. I need to be on my own with him, away from people. A carer helps me wrap him up, two rugs, the striped multi-coloured scarf he always wore snowboarding, gloves and a beanie; if it weren't for the rugs he could be relaxing in a ski resort. He's vividly alert, one of those days when his nearness to the surface is electric, a force field around him. Hey handsome! Denise calls out from behind the nurses' desk as I wheel him through the day room, and I think, she's right, he looks magnificent today.

There's a bench under the pergola at the end of the garden that has the sun all day and is sheltered from the wind. I wheel Miles there and for a while we sit in silence in the enclosed warmth and stillness. I love you so very much, Miles. You know that, don't you? I take his hand and he looks at me, clear-eyed and calm, but it's a look of such intensity I could believe he knows what's in my mind. Rachel spoke to me today. He continues to look at me and I feel the familiar crumple of pain somewhere deep inside me. I'm doing everything in my power to help you get out of this, my darling. But if there is a risk of further damage, a setback – I don't want you to take it. I don't think you would want that. Would you? He closes his eyes slowly and then he opens them again, and his expression has changed, softened, it speaks to me in the clearest way of love and
pity
. How can I burden him with pity as well? Miles, you know I sometimes think now that you don't want to continue. Am I right in thinking that? Still looking at me his right thumb begins to tremor and then slowly, unbelievably, quiveringly he presses down on my hand. It is the movement he used to be able to make to signify affirmation, before his spasticity became so severe. I thought he could no longer do it. It is the lightest pressure, but there is no doubt it happens.

The children come home for supper and we discuss Rachel's question. Our individual journeys to this point have been gradual and though shared there are things that have not been said, perhaps because they have been too difficult to confront. We now all accept that Miles will not recover in any meaningful way; we all consider his life to be an unbearable existence for him. We see it as one long stretch of unremitting misery, the agony of absolute loneliness, punctuated by extreme pain, discomfort, anger, irritation, humiliation, boredom, and only perhaps the very occasional, slightest relief, like being turned by gentle carers rather than careless ones when he has been too long in one position. What can be pleasurable, apart from the oblivion of sleep? Our armour throughout these past few years, the protective shield of hope, has gradually worn thin, but we have not fully confronted that yet; its admission would be too final an acknowledgement of loss. I will continue to push for any treatment that can ameliorate his condition, but really I know it will only alleviate the discomfort. We all know that nothing can bring him back across the void that separates his life now from his life as it should have been lived.