by Lu Spinney
Every day at Queen Square Miles spent some hours seated in a wheelchair, as he did in the last weeks at Innsbruck. I have learnt that it is a crucial aspect of his rehabilitation, helping to alleviate spasticity and the risk of bedsores as well as keeping his chest clear by being upright. It is easier to cough sitting up and luckily Miles has a strong cough reflex, but chest infections are a constant danger for unconscious and bedbound patients. He was also given splints to wear on his legs and arms to combat spasticity, to prevent muscle contraction and ensuing joint deformity. Now I discover that at Putney he will not be placed in a chair for the first three weeks during what is known as every new patient’s ‘assessment period’; nor will he wear the necessary splints, which apparently here take two to three weeks to be provided. One of the basic tenets of neuro-rehabilitation is that it is important to be proactive from the beginning rather than have to deal with secondary changes later on. I don’t know who to turn to, and call the Queen Square head injury nurse for advice. She is as shocked as I am, says that if he remains in bed that length of time all their hard work will be undone. Miles’s admission notes from Queen Square gave details of his daily therapy. I don’t understand why they haven’t been acted on and take the matter up with the physiotherapist. I understand it is difficult for her, because she is constrained by the hospital regulations. In the end I tell her that if necessary I will look into getting a wheelchair myself for Miles. He cannot be left in bed for three weeks; apart from anything else, it will be hugely demoralising for him.
It is the second day and I realise that I am probably marked now as a difficult relative. A young speech therapist comes to examine Miles and hearing the end of my conversation with the physio she is conciliatory. I clearly need soothing. It’s a beautiful day, she says, why don’t we go down and have a cup of tea in the garden and I’ll show you the grounds? Sitting on a bench in the sunshine she explains the standard arrival procedure for new patients. You mustn’t be concerned about it, she says. All the patients plateau for the first few weeks after arrival, sometimes for months, and they can regress. But then they will start to go forward again. She tells me this is a necessary part of the very thorough assessment procedure they have, but I have not been soothed. It seems to me frighteningly complacent.
Eventually Miles is ‘fast tracked’. He gets a chair in twelve days and splints in ten. In the meantime his spasticity has increased and he has developed a chest infection from being immobile, which must be treated with antibiotics. His mood is bleak and we fear he is retreating.
Miles is being put to bed and I am waiting, as one of us waits every evening, to make sure that he has been comfortably positioned for the night. We sit on the sofa of the day room while two carers wheel the portable hoist into his room and close the door behind them. It takes about thirty minutes and if Miles is lucky the process of hoisting him out of his chair to swing him onto the bed, remove his leg and arm splints and then his trousers, change his sanitary pad, empty the urine bag, wash him and clean his teeth before positioning him for the night will all be carefully and gently done. Otherwise we must endure the sound of Miles’s groans or more often the long drawn-out roar that has become his signature sound. That’s Miles, people on the ward will say, hearing it from afar. He’s certainly got a good pair of lungs, the father of a patient in the next ward said to me, no doubt trying to cheer me up. It is a sound that reverberates through me. I hear, I feel, his anger, his humiliation; I want to roar with him. And I am ashamed of myself, because I am embarrassed by the noise, by the exhibition he is making of himself; I am ashamed on his behalf and also, sickeningly, on my own.
Tonight the groans and roars are continuous and I’m concerned it may be more than furious humiliation. I’m about to go into the room to find out when the door opens and the carers, Bula and Sam, take their leave, saying goodnight, their job done. As I enter his room Miles is lying on his side facing me, his face flushed deep red and sweating, his eyes too wide. God, darling, what on earth has happened? I test his pulse rate with the portable finger clip and it reads 120. Is something hurting you? His eyes widen even further and I notice his right arm is bent at a peculiar angle underneath him. Pulling back the sheet to adjust it I am astounded to see that his hips and buttocks have been positioned flat on the bed with his legs stretched out straight. His torso is twisted at the waist, the upper half of his body on its side, his shoulders at right angles to the bed, while the lower half is flat and parallel to it. Oh Jesus, Miles, no wonder you’re uncomfortable! How could they have done this? I’m so, so sorry you have to endure this. I try to turn his hips but he’s too heavy. I can’t move you on my own, Miles, I’m going to call those two idiots back to do their job properly.
I find the men and ask them to come back to Miles’s room immediately. Being a carer is a thankless job and underpaid, but right now all I am concerned about is that they have done their work carelessly and the consequences were traumatic for Miles. One look at Miles without the sheet covering his lower half and both men understand. I ask them to read the physiotherapist’s guide on positioning Miles and watch as they reposition him. When they have finished he is lying at ease at last, the tension gone from his face. Thanking them, I ask them to stand in front of me for a moment before they go. They look understandably sheepish but I am adamant. Maybe if they can understand Miles’s discomfort they will think about it more closely when positioning him, and other patients, in future.
So I ask them to stand facing me, and then to twist their right shoulder forward and to the left as far as it will go without moving their hips. I do the same. It is extraordinarily uncomfortable and none of us does it longer than a few seconds. The carers apologise, saying they didn’t realise how uncomfortable it would be. Then Sam says, Our problem is that normal human beings can tell us when what we’re doing is not right. The room is very small and the three of us are standing right next to Miles’s bed; he has heard and I watch his eyes slowly closing. Okay, you can go now, I tell the men.
Miles, oh god Miles, Sam is not educated, he is a kind man but he has the IQ of a bear. He doesn’t know the meaning of what he’s saying. But Miles knows what he meant and so do I. There is nothing I can do to retrieve the situation; the words hang in the air. I feel him retreating far within himself and all I can do is lean over the bed and put my arms around him, staying like this until I know he is no longer there.
Before I leave I find Sam and tell him I would like a private word with him. We go into an empty side room and I ask him if he is aware of what he just said to me in front of Miles. He has no idea and looks concerned. You said: The problem is that normal human beings can tell you when what you’re doing isn’t right. As I emphasise the words Sam realises, looks appalled. Oh, that’s awful, I didn’t mean to say that, I’m so sorry. I respect Miles very highly. There are tears in his eyes. I am so sorry for him, he says.
Of course he didn’t mean to inflict pain. I’m tired and I want to go home now. Thank you, Sam. You understand. I take his hand and we remain for a moment facing each other, sharing the terrible pity I dread for Miles. I’ll see you tomorrow. Good night.
Ron is abroad on business and, lying alone in bed that night, unable to sleep, I am thinking about Miles lying those few miles away from me across London. How can he sleep, how can he bear it, even when he is properly positioned? Stuck in one position for a minimum of four hours until the carers come and turn him over? And then to lie on his other side for the next four hours?
I am going to do an experiment, to find out what it feels like.
First I need to get up and take some extra pillows out of the linen cupboard. Then I get back into bed and turn on to my side and try to remember the position that has been devised to help his spasticity, the stiffening left leg and left arm in particular. He will have been placed on his side because he cannot be left on his back for fear of him choking. I turn onto my left side, left leg very slightly bent and right knee bent over
it, supported by a pillow. My hips are more or less in a straight line, at right angles to the bed. Left arm bent out slightly away from my chest, right arm stretched a little further and the elbow resting on a pillow. Two more pillows under my head, my neck aligned with my spine. I think that’s it. I know there is also a large plastic oblong wedge placed between Miles’s back and the raised metal side of his bed to stop him rolling backwards, but I can’t set that up. Now I’ll time myself and see how long I can last.
Four minutes pass and I have to stop. It is impossible. What began as a slow growing claustrophobia, an internal stifling, inch by inch spread outwards into my limbs – arms first, then my back and legs, my feet and ankles, particularly the ankles, then my neck. A deep physical agitation which I could feel building up to a crescendo of what I can only describe as psychic pain. And Miles must endure the physical pain too, his muscles and joints already painfully stiffened, slowly atrophying.
Miles has been at Putney now for three months and my life has evolved into a routine. Visiting hours are from twelve in the morning until eight in the evening. The journey by car takes an hour on a good day, so I leave Greenwich at eleven, driving the circuitous route that avoids congestion charging. Through the Old Kent Road, Elephant and Castle, the Oval, down to Lambeth Palace and then along the river, past New Covent Garden, Battersea and the glinting ranks of glass and concrete apartment blocks that have begun to fringe the Thames. I love this city, as did Miles; we often talked of it, trying to understand its essence, the vibrancy and recklessness, Miles said, and yet its calm containment of all our hurtling lives.
Turning away from the river now to enter Putney, driving up the final hill and the hospital looms into sight, its solid façade upholding the ordinariness of this respectable suburb. The irrational anger I feel for the building, for that sign Royal Hospital for Neuro-Disability belying the shattered lives it fronts. Entering through the porter’s lodge, driving past the elegantly manicured parking area reserved for hospital management, the road winds round the side of the building past Miles’s ward to the visitors’ car park at the back. I dread the moment of looking up and knowing that he is there, behind that window, contained and separated in every conceivable way from me, from us, from his life as he should be living it, thinking it. Longing to see him, dreading the confrontation with his reality.
But at least I am expecting to see him now, unlike the evening Ron and I were in a cab being driven back with friends from a night out in West London. It had been a good evening, theatre and dinner afterwards, a happy distraction with old friends. Ron or Michael had said something funny and we were all laughing when I looked out of the cab window and saw the great stone building lowering from the side of the road. Miles was there, yards away from us. The shock, like being unexpectedly stabbed; our terrible echoing laughter. Lights were on in the day room. Was he awake, lying in the same position he’d been put in hours before, in pain, unable to move or call anyone? I prayed he was asleep, but what sort of night does he have, turned every four hours by carers only longing for the end of their shift? Ron reached over to hold my hand as I cringed back into the darkness.
When he can, Ron comes from his office to visit Miles at lunchtime, a treat for me as well. Most days I spend the afternoon with Miles in his room or, when the weather is fine, take him out into the garden where I try to find somewhere shady and isolated. The gardens are the luxury of Putney and it is possible to be on your own. I have come to recognise the relatives who feel as I do, who glare at anyone who dares to share the same bench or park a wheelchair too close. There are the others who gather together, their charges ranged in a cluster of wheelchairs beside them as they exchange banter like old pub friends. It is all a matter of survival.
In the evenings the children or friends arrive after work, for everyone involved a valiant effort, given the laborious journey required to take the train from central London and the long walk from station to hospital. We chat together for a while with Miles and then I leave. Re-crossing the city it is rush hour now and I long for the sight of a red light ahead, knowing I will have those few blissful moments before it turns green to close my eyes and imagine sleep before I have to set off again.
I drive to Putney and drive back in the comfort of my car with music I’ve chosen to listen to and I know at the end of each day I will return to a house I love and a man I love. Ron will be there and as I shut the front door I can let go of the thing that has held me together, can unravel whatever it is and know I am safe here. Ron will pour us each a glass of wine and together with him the peace of the house will absorb, for that moment, the pain. I imagine another mother who might return from the hospital after a long, crammed tube ride to her home, perhaps in one of the bleak tower blocks I pass on my journey, its dimly lit stairwell and graffitied lift offering no respite and a partner waiting for her who demands and does not understand, maybe a partner whom she has disliked for some long time even before this devastating thing happened in her life. How does she survive? Or the families that have lost the breadwinner to brain injury, where there are young children who must come to terms with a mother or father in such a condition. How do they manage?
During his time here Miles is exposed to various different approaches to occupational therapy. There is music therapy, massage therapy, there are audio books that can be started or turned off by a nudge of his thumb, sensory sessions with textures, smells, colours, lighting. Large printed instruction cards are held up in front of him: BLINK, STICK OUT YOUR TONGUE, CLOSE YOUR EYES. There are visits to the computer therapy room on the ground floor where a selection of advanced computer hardware and software is available for use by the severely disabled, with specially adapted keyboards and switches as well as eye-gaze systems, whereby the patient’s eyes can direct the cursor across the screen. All the therapies attempt in some way to stimulate the senses, reawaken memories, goad interest; the phrase used is ‘to evoke potential’, which means to find something, anything, that will reignite and fire up the dormant consciousness. Above all, the goal is to try to find some way in which Miles can communicate.
We are amazed and thrilled when on a number of occasions Miles responds positively. He blinks on command to the instruction cards held up in front of him or he puts out his tongue, and although his responses are not consistent it does mean that he has retained some kind of vision. His most consistent response is a slow blink to indicate that he is listening and suggesting assent to a question, though there are also times when he is awake and attending to the therapist and does not blink to respond. It all confirms what we have known from the beginning, that he is undoubtedly aware some of the time. What it also reveals is that even when aware and attentive, he is unable to initiate; he can only follow a command. To know Miles is to know his particular proactive nature and this is one of the most distressing diagnoses to accept.
He begins each new therapy with clear interest, his eyes wide, the look on his face the one we now know means he is listening intently. He makes an obvious effort to do what is required of him, often involving huge physical effort as he is made to work against his spasticity. At the beginning there is a strong sense of his own optimism, that he too is hoping this will be the key, and as we cheer him on we feel the familiar mix of hope and pride rising: this is Miles, he will do it, he always has done. Excitement tainted by a sadness too painful to acknowledge as we watch him quivering with the physical effort to follow the simplest demand. Yet as the sessions are repeated in the damning quest for the therapists’ Holy Grail of consistency, so Miles’s interest wanes and his responses drop off. He cannot keep it up, he is defeated. I have seen him sometimes, awake and alert with me before a session, immediately close his eyes as the occupational therapist begins to speak. Nothing more happens. Eventually she puts the cards away, turns off the audio book, shuts down the computer. To begin with she assumes he is too tired to participate. We’ll try again tomorrow, Miles, she says. You’ve been doing so well, bu
t I think perhaps you’re too tired today. When she leaves the room I want to shake him despite his misery, You’ve got to keep going, Miles, no matter how boring and repetitive it is and no matter that you sometimes can’t do it. You’ve got to keep trying. You have to show them you’re there. It’s not enough that we know. We love you so much, we adore you, you know that, don’t you? I am ashamed at my cruelty, constantly goading him on like this. I don’t want to accept that he can’t do it; if I do that there can be no more hope for him, and hope is our lifeline. The therapist is guarded at the end of the session. I’m afraid it is a symptom of the minimally conscious state, she says to me, the inability to respond consistently. We know Miles is aware some of the time. Perhaps a different approach will be more successful with him; I’ll keep working on it.
Miles is asleep in his wheelchair and Marina and I are sitting in his room with the door closed, enjoying our shared closeness to him in this rare interlude of peace and privacy. It’s a Saturday, and since the therapists don’t work at weekends there will be no interruption; we can relax together until it is time for him to be put to bed in a couple of hours. Marina has come up from Oxford on the Oxford Tube and will return this evening, so it’s a luxury to have some time with her on my own and to catch up on her news. She makes this journey to see Miles a couple of times a week and, knowing the pressure of work she’s under, I am concerned about her health – she contracted glandular fever last year and her immune system is not robust. I am concerned, too, about her dealing with Miles’s situation on her own, for I fear that, away from home and the support of the immediate family, she internalises her deep distress, despite the number of friends she has. It is too private a thing to share, too painful, too difficult to explain. Her friends are young, they’re students living their own lives at full tilt; the ordeal she is undergoing is not yet within their experience and it is easier for her not to burden them. So she keeps it to herself and leads a double life.