Beyond the High Blue Air (25 page)

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 has 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.

Miles's partially sentient self – is it the same self as before? If it is a different self, is he still the same person? The children and I drew up a list together once with a friend of Miles's. It was a list of what had defined Miles, and what defines him now.

Before
After

A protector Defenceless

Determined Helpless

Powerful Vulnerable

Intellectual Brain-damaged

Decisive Unable to make decisions

Strategic thinker Unable to think ahead

Articulate Mute

Witty Mute

Funny Sad

Proactive Unable to initiate

Irascible Long-suffering

Impatient Long-suffering

Artistic Impaired vision

Enjoyer of good food Unable to swallow

We could have continued; the point was that in every conceivable way we could think of Miles had been rendered the opposite by his accident.

Now something else comes to mind, to complete the list:

To be Not to be

When Miles was thirteen he was chosen to play Hamlet in the annual school play. The actors' parents helped backstage if they had the time and I was put in charge of doing the make-up. It was huge fun for me – small boys between nine and thirteen are a joyful species – but the English master was serious in his aim of showing what his boys could rise to; he told me he had always wanted to produce
Hamlet
and knew when he first taught Miles aged ten that he had found his man, as he put it. The school gym was adjacent to the main hall where the production took place and a number of thick mattresses were laid out on the floor for the boys to sit on while they waited to go on stage. I would wait there to touch up their make-up if necessary and I have fond memories – I think of Ophelia, a slight eleven year old as pretty as a girl in his pale make-up and long white dress, coming off stage and in repressed exuberance taking a flying leap on to a mattress with a resounding tearing of lace.

But at thirteen Miles was beginning to leave that exuberance behind. The painful clouds of adolescence were lowering on the horizon and with them came sudden unexpected squalls of introspection and self-doubt. The newness of them informed his delivery and Shakespeare's words were expressed with a moving rawness quite different from that of a more mature actor. Now when I read those words they have quite another resonance for me: To be, or not to be, that is the question . . . To die – to sleep, No more: and by a sleep to say we end the heart-ache . . .

I have made an appointment to see an eminent barrister, a QC who specialises in Court of Protection and medical decisions. The children and I meet with my solicitor Brian and his assistant at the barrister's chambers and make small talk as we wait. Brian has advised me kindly throughout the raft of administrative measures I have had to deal with in my position as Miles's legal guardian and I know he is concerned about this new situation. He is involved with both his local church and local hospice and I am sure it runs against his belief. What he would not understand is the bitter irony in me feeling that I am about to appear before a judge of the highest court to plead
for
Miles's life, not its ending, as though everything that has happened over the past four years now hinges on me to resolve.

I have done my homework for this meeting as requested, have sent the QC in advance a summary of Miles's life and his character before the accident and a chronological assessment of his life and treatment since the accident. The barrister arrives and ushers us into the meeting room. He looks every part the classical lawyer, silver-haired, distinguished, but his manner is immediately informal and he puts us at our ease as we hesitantly seat ourselves around the intimidatingly large and gleaming boardroom table. He is empathetic about Miles's predicament. He asks us all our views and listens respectfully. He has clearly read everything we sent him and he has got the measure of Miles's character.

By the end of the meeting he has reached the opinion that he is prepared to take on Miles's case. Having listened to what we have all had to say and having read the two doctors' reports, both Dr Davies and Dr Jensen, as well as the reports from Miles's time at Putney and Addenbrooke's in Cambridge, he is of the opinion that the Court might consider Miles's case sympathetically. From these reports he understands that Miles is not aware all of the time but is definitely aware some of the time. He tells us that, as a barrister, he has seen many families who interpret signs from loved ones optimistically, but it seems to him that we are not such a family. He understands the irony of our situation, that we had spent our time since Miles's accident arguing that he should be receiving better treatment but that now we are fighting for Miles's life and his suffering to be ended, which is a total shift from our initial feelings. He understands that it is no longer in Miles's best interests to continue; were he in the family's situation, he would feel the same. If we are prepared to face the very difficult and long process of an application to the Court, he is willing to help us. We should discuss among ourselves what we have learnt of the process and whether we still wish to go ahead and instruct him.

As we leave the chambers and walk together down the Embankment to Charing Cross I think about that sunlit walk four years ago along the river Inn in Innsbruck. So much has happened, and so little.

The gravity of our situation is onerous. Our lives, the children and mine, are weighted with the knowledge of what we may be embarking on, though there is no dilemma as to its rightness. It is a mission of mercy. I speak about it with a few very close and trusted friends, Jennifer, Matthew, a lawyer Andrew and his wife Madeleine; their support and advice is invaluable. I'm given the name of a rehabilitation expert, Dr Lazard, who has acted in end of life cases as the patient's so-called ‘litigation friend' for the Court of Protection's Official Solicitor and I contact his secretary. She tells me a good time to call him and when I do we speak on the phone for over an hour; though he doesn't know Miles or me, his experience allows him to understand the situation precisely and he is unexpectedly supportive and sympathetic. But his advice is clear: the law only allows end of life requests to apply to patients who are PVS. He does not believe a Court of Protection judge would grant the request. In his view it would be a long, painful, expensive process for nothing. And then he confides in me that he knows there is a ground-breaking case going through the Court at the moment for a person who is MCS; he can't tell me more than that but we should wait to hear the result before we embark on any proceedings. Call me in six months' time, he says, and I will be able to tell you more.

This news is both reassuring and frustrating. I wish I could know the story behind the other application, could contact the family to share our experience and give them our support. If they are successful it will pave the way for our application, just as the initial PVS case of the Hillsborough victim Tony Bland changed the law in
1993
. If they are not successful, Miles's situation will be even more difficult. We must wait and Miles must continue to endure his existence.

Ray has been in and out of hospital for the past month, and one day Tracy asks me what the word palliative means. I've been told a palliative care doctor is coming from a hospice to see Ray, she says. He doesn't need a new bloody doctor. What's he coming for? She has no idea what it means but she knows what a hospice is and she is alarmed and angry.

I don't think it's for me to tell her that the doctors believe Ray's life is nearing its end. All I can do is suggest that she telephones the hospice, explain who she is and ask to speak to the palliative care doctor who is going to see him. I hope the doctor will be understanding and undeterred by her anger. I wish I could protect her from the horror that must surely engulf her when Ray dies, for I fear her love for him is the one stable thing in her life. It has been an illuminating experience, a privilege, to witness the courage of this young woman whose life has been so narrowed down in every way, and her refusal to accept that the tragedy of Ray's situation should have made him any different.