by Lu Spinney
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.
I tell the children about my conversation with Miles this afternoon and my thoughts about Ellen. As painful as it is, I think NFR should apply to Miles’s future treatment. If I were in Miles’s position, Will says, if I was told that some amazing treatment might be available in ten, five, even, actually, a year’s time, I would still not want to continue my existence. We’re all silent. He has a knack, Will, of articulating succinctly something which one has not yet thought through. If it were me, he continues, I would definitely not want to be resuscitated after cardiac arrest, especially if the chances are that I’d be even more damaged than before. Claudia agrees with him. It’s unthinkable to have to be talking about Miles in this way, she says. But I try to imagine him in the circumstances. I imagine if he was here now, having to make this decision about one of us. He would never tolerate the prospect of dragging on such a life.
Marina has been quiet throughout the conversation, and now she is quietly adamant. I think NFR is a decision only Miles can make. I don’t think we have the right to make it on his behalf, much as we all agree that his life is not worth living any more. We all understand what that means. It is a decision we respect, and so the next day I tell Rachel that until Marina changes her mind, NFR does not apply to Miles.
One evening some weeks later Marina returns home from visiting Miles and tells me she has changed her mind. She accepts Miles should be considered NFR. If he were given the chance to die it would be a cruelty to condemn him to a longer existence, she says. He was so bitterly unhappy today. It was the darkest, bleakest misery. He can’t bear it. It’s the least we can do. I ask her what happened. I can’t describe it, she says. It’s too painful. But he made it clear. I am quite certain he does not want to continue in this way.
I think now of Marina’s words all those years ago in Innsbruck, that our hope for Miles was like a love affair; now they seem even more apt. A failing love affair, only ever some small epiphany, some small climax, but never resolution, never full emotional satisfaction. The hope we sustained at the beginning slowly destroyed in the end by ennui, by the burden of reality.
Before I return to Rachel with our decision I speak with Miles’s GP, Matthew. He confirms what we already know, that resuscitation in Miles’s current condition would be likely to leave him in a significantly worse state. Remember, though, he reassures me, that you can always change your mind if you have any doubts about what Miles would wish, or if at any time he gives an indication about what he wants. His opinion and his wellbeing will continue to remain our first priority.
Claudia has just returned from Gael Lodge and we have poured ourselves a glass of wine and settled on the sofa in the sitting room to watch the Channel Four news. Miles wants to die, she says. I turn off the television. What do you mean? I ask her. What made you say that? He told me today, she replies. It was extraordinary. He had already been put to bed when I got there and he was coughing really badly. The carer on duty said they had given him a nebuliser but it made no difference. I raised the pillow end of the bed to try to help and I suctioned him, but nothing worked. You know what it’s like when he coughs and coughs and cannot clear it. And then he did one huge, terrible cough that made him retch violently and after that he just roared like I’ve never heard him before. It was the most wretched sound I’ve ever heard. I’m so sorry, Miley, I wish I could help you, I said to him, and with that he just lifted himself right out from the pillow staring at me with such intensity, such anger, that I knew exactly what he was saying. He was saying, You know you can help me. Do it. Please do it.
There is nothing I can say. I understand what she is describing, have seen and felt that anger directed at me and have dreaded its meaning. Claudia takes a long sip of wine, puts down her glass and then looks at me carefully. I told Miles I would, she says. I told him I would help him die. I said I couldn’t do it for a while but I would find a way. I promised him. You cannot imagine the look of relief on his face as he sank back onto the bed.
I know Claudia is serious. She means to do this. Perhaps it is strange, but I am not surprised. You cannot possibly do that, darling, I tell her. Apart from the fact that you don’t know what the appropriate drugs are or where to find them, you would go to prison. I don’t mind, Mum, she says. You’ll all come and visit me and I’ll study there, do something. I know I’ve got an unrealistic view of it, but the most important thing for me is that Miles will be free from suffering. He would do this for me. I know it won’t be easy – it will be horrifying, terrifying. But it wouldn’t be a fraction of the hell he is suffering.
It’s out of the question, Will says when I tell him. We can’t let her. I won’t let her. It would destroy Claudia, Marina says, she hasn’t thought it through. She would not be able to live with the knowledge of what she had done, even if it had released Miles. I realise how far we have travelled that there is no shock for any of us in hearing Claudia state her intention. The truth is, we all believe it is exactly what Miles does want. For the moment only she has the recklessness to say it, and mean it.
I miss Ron. Miss, such a slight, quiet word, but it says everything. He is missing and his absence permeates every moment of my life like an elusive scent that reminds me of something familiar but never present. I carry it with me day and night. Private and invisible, it sustains me. How I need him here now.
The spasticity in Miles’s left arm has got so bad that there is no option left but surgery. The muscles of the arm and the hand have now contracted so that the arm is permanently bent at the elbow, his hand clenched into a fist pulled up to his shoulder, the fingers so tightly clamped it is almost impossible to prise them open. This attempt at prising open has to be done daily, because the skin inside his hand has broken down into weeping open sores. He is in permanent pain but the added pain of having his fingers bent back to clean the hand is quite clearly excruciating.
As I start to warn him that we need to open his hand to clean it he hunches back into himself, presses the fist further into his shoulder, both legs lift from the chair and his face contorts in anticipation. To wash his hand is to perpetrate violence. No compensation that the cruelty is imperative, that however painful, infection of the skin will increase his spasticity even further. I begin by touching his hand and holding it for a moment. I’m so sorry, Miles, I wish this didn’t hurt you, but I have to do it. Your hand is getting infected and it needs to be kept clean and dry. I love you so very much, my darling, I hate to inflict this pain on you. Please let me try to open your fingers, I’m going to do it as gently as I can. But as I try to open the hand I am entering into combat with Miles and he is so furiously strong my frustration eventually turns to irritation – open your hand, for god’s sake. I am fighting him with all my strength now, I am his enemy, the enemy of this heinous thing that has destroyed him, reduced him to a dumb, suffering parody of the powerful y
oung man he was. Teeth clenched with the effort, I feel the tremors of a violence that would destroy us both.
An appointment is made for Miles to see an orthopaedic consultant, a hand specialist. There is nothing for it, the surgeon explains to me, after examining Miles. The only way to relieve him of this problem is to sever the ligaments of his hand and arm. I’m afraid he won’t be able to use the arm or hand again. The surgeon looks at me and it is unspoken, that that won’t be a meaningful loss for Miles. But, he says, with sudden fierceness, I can relieve him of this pain. He looks at Miles and I see what he sees, a healthy young man utterly dependent on somebody, anybody, anybody at all, to help him. He looks back at me and I can read the pain refracted in his eyes; he understands. I will put Miles’s procedure at the top of my list, he says. He should not have to endure this one day longer.
Sunday evening and Marina and I have arrived at the hospital early to be in time for Miles. We stand at the entrance, watching as yet another ambulance parks in the reserved space and the driver and his assistant hop down from their seats to walk round and open up the back. The doors are opened, the mechanical ramp activated and the two men wheel down a stretcher with practised ease. What I see is a handsome, dark-haired young man lying frozen on his back, one arm disturbingly bent back on itself and one leg strangely raised, pointing into the air, as straight and stiff as a gymnast. He has got stuck in the middle of a complicated movement and so too has his face, frozen in a long drawn-out moment of raw misery. Jesus Christ, that’s Miles. Marina and I turn to one another; our clarity is shared.
There are times like this when reality suddenly intrudes through the fragile lens of normalisation that makes participation in Miles’s world bearable. In the way that the safety glasses a welder must wear will save his eyes from the sparks of burning metal, we have acquired a protective filter that allows us to deflect the small, constant shocks. But sometimes, like now, the lens fails and I’m caught off guard. It can happen when I see Miles reflected in a mirror, or when I suddenly see him in the distance, perhaps a carer or a friend in the garden talking to him or pushing his wheelchair, or like now, looking down from the top of the hospital steps. I have remained outside the scene, looking in. And how can Miles bear this? There is no protective lens for him; he is living it from the inside every moment.
We walk quickly down to the ambulance. Hello Miles darling, I say, kissing him hello, Marina and I are here. Marina leans down to kiss him too and as she does so his face softens and he closes his eyes as though savouring the moment. We’re at the hospital, Miles – that surgeon who was so helpful when we saw him together last week will operate on your arm tomorrow. He is certain he can release you from the pain you’re enduring. We’re going up to the ward now, Marina and I are coming with you. Yelena, the carer from Gael Lodge who is accompanying Miles, appears from the other side of the ambulance carrying various bags, the paraphernalia of Miles’s existence – his medication, splints, sanitary pads, conveens, his toothbrush and razor, some clothes. Marina and I take them from her as the three of us follow the men pushing the stretcher through the hospital foyer and up to the ward.
It’s a men-only surgical ward, a cavernous room that looks as though nothing has changed since the First World War. Metal beds in rows down each side, wooden locker one side and chair the other, dreary blue curtains on overhead rails an attempt at privacy. It is clearly not an acute ward since none of the men in here looks particularly unhealthy, though each is either waiting for surgery or recovering from it. Some of the men have visitors but everyone falls silent as Miles is wheeled down the centre aisle to his bed at the end of the ward. Perhaps he is too unnerving a reminder of what can happen. Perhaps he makes them feel more vulnerable at a time when they need reassurance.
The operation is scheduled for 8 the next morning. I get to the hospital early, and buying a takeaway coffee at the café in the huge domed atrium I feel the charge of the place. At this hour everyone has a clear purpose, greetings ring out, brisk footsteps echoing as doctors, nurses, therapists, technicians, cleaners, all the cogs of this vast machine of expertise and dedication arrive for the day or leave after the night’s work. On accompanying Miles down to the operating theatre I find the place is already a-buzz, the surgeon transformed from elegant-suited doctor to virile man of action. I could fall in love with this man for what he is doing for Miles. He greets us both, greets Miles so respectfully, before introducing his anaesthetist, a small wiry South African who puts me at my ease. You can stay with your son while I give him the anaesthetic, he says. That’s not normally allowed but this is kind of different. Miles is wheeled into the pre-op room and the anaesthetist chats to me as he makes the preparations. I watch Miles’s eyes close as he drops straight into unconsciousness and I don’t have time to ask how much anaesthetic is required in the circumstances, to go from minimally conscious rather than from fully conscious. I hope it is the same; the experience of pain is certainly the same.
Three and a half hours later I am called to see him in the recovery room. My trepidation as I enter is replaced by the sweet thrill of relief and gratitude – the surgeon has worked a miracle. Miles is transformed, his face calm, his body relaxed, and – the miracle – his left arm, though heavily bandaged, is resting for the first time in years in a natural position in front of him, supported now by a pillow on his lap. I feel the familiar stirrings of hope begin to rise; I am hoping with all my heart that this operation has removed the pain and maybe, maybe, if he is no longer distracted by pain and no longer muffled by heavy pain relief, he might start to communicate. Just maybe. But then I hear myself being admonished by despair. Don’t be a fool, it tells me, you know how long it’s been. You know there is no hope for the sort of life Miles wants to live. We’ll see, says hope. I’m walking the tightrope again.
Miles remains comfortable throughout the day, cushioned by the slowly waning after-effects of his anaesthetic. When Will, Claudia and Marina arrive to see him in the evening I leave them, reassured that the operation has been a success. Yelena is back for her night shift and the nurse on duty seems competent; Miles appears set for a calm night. I plan to come in early again tomorrow, to meet with the surgeon on his rounds before surgery.
It’s still dark when I leave home the next morning. Ordering my coffee in the hospital café I feel a strange, subdued but growing sense of excitement – I am about to see Miles and he may be pain-free. That will be a new and wonderful thing, a black knot of horror excised. Arriving on the ward the curtain has been pulled around Miles’s bed and I imagine he is having his early ablutions before the surgeon arrives. But when I pass through the curtain what I see is a young man who could have spent the long night in a bombed-out crater in No Man’s Land, wounded, alone, in agony. His back is arched away from the bed, his face mottled purple, his eyes are wild and staring, his teeth bared. He is pouring with sweat, his tee shirt dripping wet. I can see even the sheets are soaked through. I have never, not even in a horror film, ever seen any person or animal in this state; I could not possibly have imagined it. WHAT is happening? I shout and then I see Yelena, terrified, on the other side of the bed. For god’s sake, Yelena, what’s going on? I try to touch Miles but he arches still further away from me, eyes now staring into my eyes, my son, my beloved son, staring at me like a wounded wild animal in a trap. Where is the nurse? I go out into the open ward and find the nurse. Come here, I say to her, please come here immediately. She looks annoyed by my peremptoriness but follows me. Look at him! Just look at him! I’m ice-cold with anger. What has been going on? What pain relief has Miles been given? I’ll have to check, she says coolly, but I know we gave him 1000mg paracetamol an hour ago. You must be joking, I say, you gave him paracetamol? Paracetamol! What does that do for pain like this? Is that what you would give yourself in the circumstances? Miles can’t tell you but couldn’t you see it, for Christ’s sake? Can you see it? You’re a nurse, you’re meant to care for people. Bring me the drug chart, I
want to see what he was given last night. She goes out and returns with the chart.
The only pain relief Miles has received all night is paracetamol. The anaesthetist omitted to prescribe any pain relief for Miles. And, I see with even colder fury, the junior doctor on duty on the first night omitted to enter the prescribed neurological pain relief he receives every night, 400mg Gabapentin to top up the 600mg he has already been given during the day. With no pain relief at all after the operation he has not even had his regular nightly dose. The doctor hadn’t bothered to turn the last page of his medication notes from Gael Lodge. The ligaments of Miles’s upper and lower arm and his hand have been severed during a three-hour operation, with the attendant deep wounds carefully stitched and bandaged. The violent pain he experienced during the night triggered severe spasticity spasms, as a result of which powerful involuntary movements of his arms occurred which Miles could not control. When Yelena asked the nurse on duty for help turning him she complained that it was not her job, that the care home should have sent two carers to look after him. By early morning the stitches had split open and the bandages were soaked with blood. A junior doctor was the only doctor available and was busy, so took some time before attending to Miles. He did not prescribe further pain relief and all he did was re-bandage Miles’s arm.