Beyond the High Blue Air

by Lu Spinney

  I think about the time when Miles was at primary school and there was a little boy called Ted who suffered from a rare degenerative disease. He was small and delicate, his movements severely unco-ordinated and his speech slurred so that it was difficult to understand him. The class was small and the teacher a beautiful fey young woman whom the children loved, wrapping themselves in her long skirts whenever they needed comfort; she understood and delighted in their differences, allowing no pressure to intervene in the business of being a small child.

  One day when I collected Miles after school he was quiet and remained preoccupied as we walked home. Usually the walk was a tumble of stories from the day in between climbing walls and leap-frogging over bollards or racing with the other children, but today he walked silently, holding my hand. When we got home and I closed the front door he burst into tears: Ted weed in his chair and it went all over the floor and everyone laughed. It was horrible for Ted, it wasn’t fair, Mama, he couldn’t help it. Will the doctor make him better?

  Ted died a year later. I didn’t know his mother well and was surprised when, seeing her in the street and wondering what I could possibly say to her, she came across to me. You’re Miles’s mother, aren’t you? she asked. I said I was, and how sad I was to hear about Ted. I felt awkward; I remember thinking, and then saying to her, that I couldn’t imagine anything worse than losing a child. She waited for me to finish and then she said, I’ve wanted to speak to you because I wanted to tell you how kind Miles was to Ted. He told me that Miles always protected him when he was teased by the other children. I’m very grateful to him for that.

  Saturday early evening and Ron and I are driving home after spending a long afternoon with Miles. He was awake and alert for most of the time so it should have been a good visit, but I am in tears and Ron is struggling to console me. Something has suddenly given way, I can’t help myself though I know how he hates it when I’m unhappy. It is my greatest aim, he said, just after we met, that you will never be unhappy again. I remember thinking that I understood for the first time how it felt to be truly cherished.

  What is it, exactly, lovey? he says. He is driving and keeps looking at me concernedly and I would prefer him to keep his eyes on the road. Miles looked well today, he says, and I thought he was very much present and with us, didn’t you? He seemed more relaxed than usual too. I don’t reply and he continues. You were wonderful with him today . . . It’s no use, he gives up now and we drive on in silence. My eyes are closed, I don’t want to hear any more, I am consumed by this fresh wave of pain that has welled up and threatens to suffocate me and all I can do is concentrate on trying to find my breath to keep myself from drowning in shame.

  Shame, and guilt. Ron has cancer, he is undergoing chemotherapy and he has spent his Saturday afternoon at Putney. And I’m feeling guilty because I took the easy option with Miles. I didn’t have the strength to keep up with the burden of a one-sided conversation, the effort of finding something new to say, of trying to imagine what he really wanted to hear. The trouble is, I just don’t know what he really wants to hear from me. All I can think of now that I’ve left him is the sound of my facile glib chatter and the relief I felt when for a while he closed his eyes and I no longer had to speak.

  When we get home Ron takes me in his arms. Would you like to go out for dinner? he asks. Would that help take your mind off things? I feel deadened and it’s Saturday evening; I must pull myself together. No, darling Ron, let’s stay in and I’ll cook something easy. I love you. How could I manage without you? Let’s just celebrate being here together.

  I must not think about Miles lying alone in bed in that room.

  Twelve months have passed since Miles’s accident, the vaunted one-year marker of recovery. We have travelled a long way since the idea consoled us, when a year seemed a lot of time for improvements to happen. Now it seems too short. Miles has been officially diagnosed as MCS, in a minimally conscious state, as opposed to PVS, persistent vegetative state. PVS, that terrible rubric that demeans a person already demeaned through the tragedy of irreversible brain damage, somebody whose conscious life has been extinguished but whose body remains alive. How needlessly painful and insulting that word vegetative is. Coined in 1972 by Scottish surgeon Bryan Jennett and American neurologist Fred Plum in an article in The Lancet, its use is now firmly entrenched but bitterly resented by any relative of someone actually in that state.

  Miles is MCS: definitely aware but his awareness inconsistent. The irony, that now we know that to be MCS is infinitely more devastating a sentence than to be PVS. He is able to suffer excruciating pain, humiliation, anger, misery, frustration, loneliness, boredom – all the same sensations and emotions as before, but imprisoned in a twilight world of incommunicable solitude. And what does this mean, in terms of the one-year marker for his prognosis?

  For us it means that one moment he is with us intensely, responding to what is being said with his, by now, familiar movements and expressions, and the next he may be out cold, as it were, he might as well not be present even though he’s awake. He crosses over into consciousness; he retreats. He slips back and forth. There is a constant sense of the permeability of consciousness, of Miles’s existence in a place of fog and swirling mists that now and then will lift to reveal patches of pure blue sky. And there is the unbearable thought that at those moments he understands and is aware of what he no longer is.

  We cannot accept that this is all the future holds for him. Doctors no longer refer to his long-term prognosis; I understand what I suspect is their reasoning, that if we can’t accept it, there is no point. For, emphatically, I will continue to fight for Miles’s future prospects. I will do everything in my power never to allow him to be sidelined into an acceptance of stasis.

  The diagnosis of MCS means that we are in this for the long haul. We need to find a care home that is closer to where we live. I am shocked to discover that the Primary Care Trust (PCT) has designated Miles as needing minimum funding for future treatment such as physiotherapy, occupational therapy, etc. A battle ensues – in effect this would mean giving up on his rehabilitation and I am determined that Miles should continue to have ambitious treatment. He is a young man who, some of the time, is vividly aware; it is inconceivable that he should be allowed to atrophy physically and mentally, stuck away somewhere out of sight and out of mind. The severe and painful deformity that occurs in TBI patients denied regular physiotherapy is well established.

  Rosemary, the redoubtable Putney social worker, is supportive and arranges a meeting for me with the appropriate person at the PCT. Going to the meeting I feel like a barrister defending against the possibility of a life sentence. I have done my research and planned my argument but, above all, I know I must not let myself become emotional. The result today will be pivotal to Miles’s future; the matter is deadly serious. Each of the PCT’s patients in Miles’s position represents a tragedy so I cannot plead for him by using my grief, much as I want to weep with despair at what the meeting really represents. For in truth, what I am asking for is that my brain-damaged son should be allowed a future with some hope, rather than a future with no hope at all. It is as simple as that. At the end of the meeting it is impossible not to cry with relief when Miles is given the go-ahead for continuing rehabilitation.

  The children and I have been visiting possible care homes. They are so bleak and dispiriting, the people in them so wretched, the atmosphere so inured to suffering, that despair begins to take hold of us all. And then Will and I visit Gael Lodge, a care home in South London twenty minutes’ drive from us, and as we walk through the doors we know we have found the right place. We see an extraordinary thing, a residential care home where, despite the severely damaged men and women whose home it is, the atmosphere is not unhappy. It is clean and bright and homely. Most importantly, it is immediately clear that the residents are being treated with respect; in fact they are all being treated as people.

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  The date is set for Miles’s move. The manager of Gael Lodge, Rachel, a former palliative care nurse, has been in touch with me to discuss Miles’s requirements. She is surprising and formidable. Extrovert, dyed blonde hair, a vibrant dress sense and exuberant jewellery, she is the type of whirlwind character who carries everyone along with her, sweeping away their problems in her wake. Underneath the colourful exterior I sense a serious, steady core and know that at last we have found a safe haven for Miles.

  Rachel invites me to visit Gael Lodge before Miles arrives, to see his room and talk about his needs. The room is in the small high dependency ward and it is being freshly painted, as is the custom before a new arrival. I’m able to make a decision on the available furniture and can choose a chest of drawers rather than the tall wardrobe at present dominating the room. I’m introduced to Jana, the ward sister, a motherly, softly spoken woman whom I warm to.

  On the day of Miles’s move I get there early. He arrives by ambulance, seated in the wheelchair that now belongs to him. It is one of the advantages of Putney that it has the expertise and facilities to customise the wheelchairs, in Miles’s case overseen by a remarkable inventor and engineer, Dr Steve Cousins, head of the Biomedical Engineering Services at the hospital. Talking to him helped me understand the importance of accommodating the complex seating and postural needs of TBI patients and I realise what a luxury it is to have this chair for Miles, perfectly customised for his particular disabilities. Despite the many disagreements and upsets during his time at Putney, I am aware that there were a lot of people who committed time and skill and great effort to his rehabilitation.

  Today, in spite of the long journey from Putney, he appears relaxed and clearly alert. There is no doubt he is aware that he is somewhere new, and he is curious. As I look at him waiting expectantly in his chair while introductions are made, I realise that what I am seeing on his face is a new expression, it is one of hope, and suddenly I am filled with a misery so acute I feel faint. The innocence in his look, the innocence of his hope – I have betrayed him. With deep dread I think of the conversations I have had with him, telling him about Gael Lodge, how excellent it is, how here he will begin to recover. I have wanted to protect him from despair, from the knowledge that he will now live forever in a care home. Am I protecting only myself? How will he deal with the inevitable truth? How can I have let him down like this?

  Unlike Putney, Gael Lodge is a care home and as such it lacks hospital facilities. There are a number of occasions when Miles is required to attend hospital for outpatient appointments, such as having his PEG changed, his wheelchair adjusted or for specialised Botox injections to help his spasticity. The normal method for transporting him to and from hospital is by ambulance, but their timing is unreliable and particularly so on the return journey from Outpatients, by which stage he is usually rigid with distress and exhaustion yet can be left to wait with his carer for hours before being brought home. I have decided to look into buying a customised van that will accommodate him in his wheelchair and do the journeys myself, and I am able to do so because of the generous financial help Miles has received from his company. Having our own van will also mean we can bring him home for the day at weekends, which we all hope will be enjoyable for him as well as giving the children respite from the arduous public transport journey they must make to visit Miles at Gael Lodge.

  Now that I have the van, accompanying Miles to hospital becomes a mission I dread. First I must collect him at least an hour before the appointment, finding somewhere to park with enough space behind it to allow for the metal ramp to be let down and have Miles in his wheelchair positioned at the end of it. This is a delicate process since his left leg now protrudes at right angles from his chair, the muscles rigid from spasticity and the knee joint permanently locked, and to bump his leg accidentally will cause him severe pain. Once he is properly positioned, two giant metal hooks at the end of a long mesh cable must be fixed either side of his chair, which is then winched up the ramp by means of a hand-held electronic control. The ramp is steep and Miles tilted at an alarming angle and the tension as he is slowly pulled up into the van is shared by us both: mine the fear that the cable might break or come loose and the chair hurtle back down; his alarm, always evident at this stage, compounded, I imagine, by the sensation of perilous tilt and movement as well as the high whining noise of the controls. When finally in the van his chair must be firmly secured with more hooks and welts, the ramp folded back up and a final check made that I have all the necessary equipment, suction machine, sterilised water, required drugs, syringe, etc., before we set off. A Gael Lodge carer will accompany me, sitting in the back with Miles.

  Arriving at the hospital the ramp procedure must be done again, even more alarming in reverse as Miles’s chair descends backwards down the steep ramp. But it is entering the hospital I fear most of all. The sudden glare of exposure, people staring at him, lingering to see in close-up this young man suspended outside their world, his head and body strapped into a chair, his distorted limbs rigid with tension. Miles dreads it too. His eyes are blank and unseeing, but somewhere inside he is all too clearly sensing the attention. Humiliated and proud, his jaw begins to tighten and I see his mouth turning down on one side in the way I know means furious misery. And I am filled with furious bile – I hate all these gross people with their pig-eyed billowing faces, the shrivelled old people with their smoked grey skin and corncrake voices, all filling our space, intruding into our painful private world, staring. Every one of them unabashedly staring. Fuck the lot of them, I whisper in Miles’s ear, you are magnificent. These people can go to hell.

  What is this? Is it inverse self-pity on my part? Or misplaced pride? Or just plain viciousness? For I am mean-eyed too, as I continue pushing Miles through the crowded foyer, I am shrivelled and sallow. These people round me are not here for choice or amusement, it is a hospital and I know nothing of their stories. But I could, I feel like I really could, without a tremor of guilt, kill anybody who intrudes into Miles’s pain.

  I have been watching the Gael Lodge doctor on his rounds, Dr Jensen, or Matthew as he is known. A tall, dark-haired man, there is something about him that makes me think of Miles; he is probably not much older and I can imagine them as friends. His manner with his patients is at once contained but assertive, business-like but kind. There are a lot of patients demanding his attention, even those who haven’t been referred for this visit, and I watch him listen attentively or engage in their banter, his warmth and humour with such damaged people an uplifting thing to witness. It takes a particular type of person to relate to them in this way, seeing through to the inner need of each without their being able to articulate it.

  Although he knows Miles, we have not yet formally met. Today he comes over to where I’m sitting in the day room next to Miles, who is asleep now, and introduces himself. He asks how Miles is doing and we chat for a while. I have seen you with him, he says, and I’ve observed his times of obvious awareness. When he is awake and alert he is very actively present. He understands his situation, doesn’t he? There is a clear sense of determination about him. It must be deeply frustrating for him and very painful for you.

  I am flooded with relief – here is a doctor thinking about the situation from Miles’s point of view. Dr Stizer in Innsbruck, Dr Stephenson at Queen Square – it is a rare thing. I can let down some of my guard, I need not be on continual high alert, a vigilante day and night protecting Miles’s interests and feelings from the danger of being overlooked. Miles will be safe with him.

  Miles is turning ten and I let him decorate the cake I have baked for him. It’s a round chocolate cake and he makes it a face with Smarties for eyes and liquorice strips for nose and moustache, and then he carefully cuts a strip of fake red shoelace, the violent coloured sweet that dyes the children’s mouths bright pink, to add a small, mean, down-turned mouth. When the time comes to cut it, It’s Mr Palin! he cries, who is the hated m
aths teacher, and all the little boys join him whooping with delight as he plunges in the cake knife.

  Today birthday banners have been strung across the room by the care staff, balloons are bobbing from the ceiling hoist and bright cards are out on display along the shelf above the suction machine. Later we will add our own and those from friends, the inscriptions tender, the truth unwritten. At midday we arrive to find Miles sitting in his wheelchair grim-faced amidst the bunting, his jaw set and his mouth turned down, and with each breezy Happy Birthday Miles! from the nursing staff and passers-by he looks more murderous. Their cheeriness, I suppose, is understandable, but each time it’s said I want to block his ears. How can he want to be reminded that another year has passed?

  He is looking painfully handsome in a deep green tee shirt the colour of his eyes, a birthday present from the care home, and I can see that he’s had his hair washed, as well as a good, close shave. Of course, it’s a Monday, which is one of the three shower days of the week, and so this morning he would have been wheeled through on the trolley from his bedroom to the wet room, a sheet over his naked body for decency. The carers tell me he likes having his hair washed, it being so thick they can mass up the shampoo and give his scalp a really good long massage, and each time there is a slight lift to the left side of his mouth, an acknowledgement of pleasure if not quite a smile. I see from his file that the carers on duty today are Cheta and Joseph, two especially decorous, gentle Nigerians, and they are his favourites.