Beyond the High Blue Air

by Lu Spinney

  For the past ten hours at least Miles has experienced no pain relief of any kind. What was going through his mind? Where did he think he was?

  I am ready to destroy the entire medical staff of this hospital in a hail of bullets. But when the surgeon arrives he is on my side, is as appalled as I am, immediately instructs the nurse to get some intravenous morphine. He examines Miles’s arm. I don’t understand, he says. She returns and he injects Miles, watching over him as his body slowly subsides onto the bed. I don’t understand, the surgeon says again, Jack is a very good anaesthetist. Well, I understand, I tell him. It is simple – because Miles is unable to speak for himself he was treated with contempt. We’ve seen it before. If you are helpless, if you are damaged and can’t communicate, there are people who will treat you in a way they would not dream of treating an animal. I could destroy them all. I understand, the surgeon says.

  Miles should remain in hospital for a further five days, but I want him out of that ward as soon as possible. After telling Rachel about his experience she immediately agrees to have him back at Gael Lodge. We are perfectly capable of giving him post-operative care here, she says, and what’s more he won’t risk picking up any of those awful hospital infections. She always bangs the drum for Gael Lodge and she’s right; in fact he will receive the sort of post-operative care that NHS hospital managers can only dream of, professional, scrupulous and attuned to Miles’s individual needs.

  Rachel asks if I will make a formal complaint to the hospital. I don’t have the extra reserves of energy, I tell her. I am so hugely grateful to the surgeon for his compassionate treatment of Miles and I’m certain he won’t let that happen again under his care. He told me he has dealt with the anaesthetist; the experience with Miles has been a salutary one, in particular as the hospital has just been designated one of the four major stroke and trauma centres in London.

  But I think somehow the experience has been salutary in a personal sense for him too. On his final round before discharging Miles I take the opportunity to thank him for the manner in which he has treated Miles. I want to remain unemotional, but as I speak the vivid memory rises unbidden, Miles, wild-eyed, arched up in his bed, and the matey little anaesthetist beforehand, chatting casually to me as he administered the drugs. If only you had known Miles before his accident, I say to the surgeon. He was so much the greater man – he would have seen off that little anaesthetist. I’ve lost it now, the tears are coming fast, but looking up I could swear there is a tear in the surgeon’s eyes too.

  March is the cruellest month, unravelling memory as it brings with it Miles’s birthday and the anniversary of his accident, one week apart. I thought at first that 19 March could be no worse than any other day, but it always is. However hard I try not to think about it, each moment of the day takes on a painful significance, a slow countdown of retrieved memory as vividly recalled as if I were living it again.

  Today is the fourth anniversary and the children are all at home for supper. Four years ago Miles was in the operating theatre and we were on the start of our journey, flying out to Munich. Four years have passed for Miles and nothing has changed. We talk about that and somehow, tonight, it becomes clear that because nothing has changed, everything has changed. We are reaching the end of our long journey of hope. Like a tree planted to block out an unwanted view, hope has slowly, unnoticed, been withering at the root. Now it has fallen away and all of a sudden the view is visible again. It’s no use continuing to pretend it isn’t there; we all now acknowledge the bitter truth, that there can no longer be any hope of recovery for Miles.

  What has brought us to this point is that Miles knows nothing has changed. He knows. He has been making it clear. For some time we have noticed the shift in his mood, a darkness of expression, a marked stiffening of his jaw, a dismissive shutting of his eyes whenever we make our usual upbeat statements. You’re looking wonderful today, Miles. I’ve just seen Shasha and she says the acupuncture session yesterday went really well. She thinks you’re getting more movement in your right arm. It’s great to hear you managed the tilt table twice this week, the physio­therapist says he’ll try to fit you in for two sessions next week as well. You’re going to make it, Miles, you’re going to come back and do all the things you planned to do. Only ever upbeat, over and over, the words worn thin with overuse. He never could tolerate dissembling.

  Over supper the children and I discuss tactics, as we so often have over the past four years. We have to change our approach with Miles. We all feel certain he is asking us to stop the false rallying, the pretending to be hopeful, we have all seen him shut down as we begin to be upbeat. How can we be honest with him? It would seem cruel beyond imagining. Or would it? Jean-Dominique Bauby, Tony Judt, Tony Nicklinson come to mind, all of whom found relief in stating the truth about their existence. Knowing Miles is to know he would take the same approach. If only he could communicate he could direct us. I can’t help thinking – perhaps he is directing us?

  Together we make the decision that we will no longer refer to Miles’s future when we’re with him. It begins to feel as though we have been unthinkingly callous, putting impossible pressure on him to try to meet our apparent expectations. All we can now do is continue to be there for him, try to interest and distract him, let him know how central he is and will always be to this family that loves him so intensely. How proud we are of him, how much he has achieved, how loved he is.

  What else is there, in the end, but love?

  Some days after we take this decision Rachel calls me again from her office as I walk past on my way to see Miles. I wonder if you think I’m right, Lu, she says, but I have noticed a difference in Miles. In what way? I ask her. I can’t put my finger on it, he just looks more relaxed. His spasticity has decreased and he hasn’t seemed as angry or frustrated as he so often has been lately. It’s very strange, she says, really a marked difference, as if he is in a sort of Zen place, waiting calmly for something. I could hug this remarkable woman; her dedication and sensitivity to each one of her fifty-five patients is borne out over and over again. I tell her about the family’s discussion and that the children and I have also seen the change in Miles in these last few days. Since putting our decision into practice it is as though a huge and terrible burden had been lifted from him. He no longer has to perform. I wish we had understood what demands we were making on him, I say to her. We were always urging him on, thinking we were helping him in keeping his spirits up when instead we were simply asking the impossible of him. But you had to do that, Rachel says, it was entirely necessary, both for him and for you all. You had to give him every chance. The most important thing is that you and he have reached this point together.

  The following Saturday I have friends over for lunch. Will is due to join us but he’s late. I know he was going to Gael Lodge first before coming and I wonder what has happened to hold him up. He arrives halfway through the meal and, although I suspect our guests haven’t noticed, I can see he is preoccupied. As soon as they leave I ask him how the visit went.

  Something extraordinary happened, Mum, he says. The consultant rehab guy was there, Dr Davies, doing his Saturday rounds and he asked to speak to me privately. Then he asked me if we had ever considered the possibility of applying to the Court of Protection to end Miles’s life. Will gives me a quick concerned glance, checking to see how I react. He continues. Dr Davies said he believed Miles was on the outer edge of MCS, that he would continue in this condition indefinitely and that, having come to know Miles, he did not believe he wished to continue living. He said he had been wanting to speak to you for some time but had not been able to bring himself to do so.

  I know Dr Davies, a consultant who treats all his patients at Gael Lodge with a scrupulous old-fashioned politeness, though he is proactive in his treatment. I am shocked and – what? – strangely elated by his statement to Will. It is as though I can see a light flickering in the blackness that descended after our
discussion the other night and I realise, with absolute clarity, that to release Miles would be the greatest gift we could give him. Will and I look at each other for a moment in silence. It’s what Miles wants, isn’t it, Will? I say. Yes, Will answers. He puts his arms around me and we stand for some time in silence. What a rollercoaster you’ve been on, I say to him. First Dr Mosley all those years ago and now Dr Davies. I know, Will says. I thought about Mosley when Davies was speaking to me. The weird sensation, having more or less the same conversation, but delivered so differently, under such changed circumstances. And this time feeling that I was being given good news for Miles.

  I put off contacting Dr Davies; I’m not ready to have this conver­sation. I have spent so long keeping reality at bay, have become an expert at it. Four weeks later I arrange to see him on the ward. Miles is asleep in his chair so we leave him in the day room and go out to the wooden deck that leads onto the garden. There is no one else around. I am about to have a conversation to discuss the death of my son. What does that make me? There is no dilemma. I am still certain the greatest gift I could give him now would be to release him. Will told me you wanted to speak to me, I say to Dr Davies. He told me your thoughts about Miles. Dr Davies looks apprehensive. I have watched you with Miles, he says, and your dedication, your family’s dedication . . . He hesitates before continuing. Dr Davies, I say, wanting to reassure him, Dr Davies, we could not be more grateful for your intervention. It shows us your extraordinary, real concern for Miles, because you have understood him, understood that he doesn’t want to go on. We know that. He has made it clear to us. I look at Dr Davies and his eyes meet mine with a look of such compassion I wonder how he can bear to do the work he does, every one of his patients so impaired, their lives so impossibly reduced.

  I am grateful to him but I don’t think he’s right. As it currently exists, the law only allows for the Court of Protection to make end of life decisions on people who are clearly diagnosed PVS. Miles has been diagnosed MCS. The formal definitions could not be more precise: patients in PVS are in a state lacking all consciousness. MCS patients show minimal but definite evidence of consciousness. To apply to the Court on Miles’s behalf would be to ask for the law to change.

  Dr Davies thinks it is worth looking into, that it is possible the Court might consider his case. Miles has not improved and in his view he has no hope of recovery. Both the medical staff treating him and his close relatives believe he does not wish to continue living. The law is an ass, I say to him. Either PVS, lacking all consciousness, or MCS, minimal but definite consciousness and able to suffer. Which life is worse for the patient? If only Miles were PVS and knew nothing, felt nothing. We would not be having this conversation.

  I thank Dr Davies again for his concern and tell him I will seek advice on the matter. He leaves and I return to Miles. He is still asleep in his usual position in the day room, tucked away behind the pillar and facing out into the garden. I pull up a chair next to him and take out my book to read. I can’t read. He looks so peaceful asleep, his face in repose void of any pain. In the background the television is blaring out, MTV and gyrating girl dancers providing the backdrop for a strutting, bejewelled rapper. The music thumps through the room. From where I’m sitting I can see two of the patients whose chairs are facing the screen, Ray and Alex. Like Miles, both men are MCS, but unlike Miles their vision is intact. They are watching the dancers with interest and, it is obvious, with pleasure, Alex with his sly, quiet smile and Ray waving his arms about and grinning wildly.

  I watch them with a sickening envy. If you were to ask them, I do not think either of these two men would wish to end their lives, despite the catastrophe that has decimated them. Ray’s moods are complex and much of the time his unhappiness is painfully obvious, but the joy he expresses when seeing little Ray overrides everything – in those moments he clearly loves, would celebrate, being alive. Alex I have never seen look even mildly unhappy or uncomfortable. He appears content with his life as it is, sitting in his wheelchair with his arms folded, observing the world around him with his quick, dark eyes or humouring the carers when they tease him fondly. You like the pretty girls, don’t you, Alex, they say and he giggles delightedly. They’re right; Marina and Claudia find his observation of them unsettling, for somehow he conveys a lewd interest. And why not? If it gives him pleasure, it does no harm.

  Turning back to Miles I take his hand in mine, gently so as not to wake him, and as I feel his living warmth something deep inside me tears in half. I have failed him. I have not been able to help him. His predicament has been too profound for me. With a new deadened anger I think: what Miles has to suffer is greater than most of the abhorrent things humanity has inflicted on itself throughout the ages. Being stoned to death, burnt at the stake, drawn and quartered, crucified, is to endure a horror that is, mercifully, finite. Six hours on the cross seems infinitely more bearable. The impotence of my anger, the thing that cannot be squared, is the knowledge that it was the laudable, civilised, humane response to Miles’s accident that has put him in this position. Modern medicine and technology saved him from dying but it could not give him back a life worth living. I think of the words I read in a legal journal on the subject of the Mental Capacity Act: profound cognitive impairment as a result of traumatic brain injury leads to ‘a twilight zone of suspended animation where death commences while life, in some form, continues’. In some form. When we talk of the sanctity of life we think of life, not existence in some form. For someone like Miles, to lack autonomy and the capacity for self-determination, renders life meaningless.

  And if, by any wild chance, the Court of Protection allows Miles to end this existence, the death it authorises will be barbaric. The doctors will be given permission to stop hydration and nutrition, setting in motion a process that can take anything from ten days to three weeks or more before his body, starved and dehydrated, finally gives up. The doctors may treat his distress, but despite having permission to end his life they may not hasten his death in the way a dog would be relieved of its suffering. It seems pure cowardice on the part of the legal system. One precise dose of barbiturates, given by a doctor who understood and cared for Miles and with all the family present, would give him, at least, an easeful death.

  I wish Miles had died the beautiful, violent death he faced that ice-clear morning. Then it would have been as it should, a quick, brilliantly lit thing, a leap for joy into the glittering sunshine and the high blue air. No suffering, no pain, just an end, clean and quick, like his clean, quick, brilliant mind.

  The music continues its inane background thump. Miles’s hand is wet with my tears. He is still asleep. Taking a tissue from my bag I dry his hands and kiss him on the cheek. I should go home and reassemble myself.

  The person I need to speak to is Matthew, Dr Jensen. I want to know his views on Dr Davies’s comments. He is the doctor most familiar with Miles; he talks to him, and talks about him to us, just as if he is still the person he used to be, and I see Miles responding to Matthew’s quietly authoritative voice with a particular attention, his body stilled, intent on listening.

  On my way in to Gael Lodge the next afternoon I see him in the distance and we arrange to meet at the end of his rounds; he says he will come and find me in Miles’s room when he’s finished. Miles is awake in the day room as I arrive, sitting in his chair with the bleak, resigned, fed up expression he mostly has nowadays and as I hear myself greeting him brightly as usual the inanity of what I’m saying reverberates through me. Anything other than acknowledging the hopelessness of his mood and his situation feels like a betrayal, a betrayal of the honest and direct relationship we have always had. By not acknowledging the truth I am also infantilising him, and yet to speak the truth is simply not possible.

  Miles is asleep when Matthew finally comes to find me. Even so, I don’t want to have the discussion in Miles’s presence and so Matthew finds us an empty office. As I start to tell him what Dr Davies h
as said, the reality of what I’m saying confronts me afresh: I want Miles, my precious oldest child, my extraordinary, beloved Miles who has so enriched my life, I want him to be allowed to die. No: face the truth. I want someone to be allowed to end his life. I am unhinged; I am no longer normal. What mother can let herself think like this? In the silence that follows Matthew looks at me in the way I have so often seen him, listening, observing, but not judging. Dr Davies has spoken to me too, he says. I share his belief that Miles’s frustration at his situation has made his life intolerable for him now. He understands, and I believe he does not want to continue. However, he is not PVS and even though we all may think it is clearly in his best interests, I do not think a court would allow withdrawal of nutrition and hydration. Unfortunately I don’t believe they would see the futility of Miles’s present situation in the same way. I have watched you fighting for Miles’s life, and I understand why you would now be prepared to fight the case for his death. But you have all been through so much already, and this application would be a protracted process, long and difficult and, I believe, ultimately unsuccessful.

  Whatever Matthew’s views of the Court, I am not unhinged, I am not abnormal. He cares for Miles, and he understands.

  Some years ago, after Miles and I had both read The Diving Bell and the Butterfly, we discussed the tragic events of the story and our admiration for Jean-Dominique Bauby’s extraordinary lack of self-pity. I remember we were sitting on the verandah of our house in France. It was early evening, the light was softening over the hills and sea below us, bats swooping under the eaves. We were having our first glass of St Raphaël, an aromatic local aperitif which nobody else likes but we loved, served on cubes of ice with a quarter of a lemon squeezed in first to counteract the heavy sweetness. Ever since he was a small boy we had loved our talks together, the sense of intuitive intimacy in whatever we discussed. We talked now about the horror of being sentient but unable to communicate. He thought there could be nothing worse and in those circumstances he would not want to be kept alive; he was emphatic about that. I agreed. Now I know there is something worse: to be partially sentient, and unable to communicate.