SARAH’S DIARY: WEDNESDAY 30 AUGUST
R. took his second occupational therapy class today. Yesterday, he had to go through a list of letters and check off all the Es, and then look at a row of trees and put them in order of size – some people are so badly off, apparently, that they can’t do those things. Today they taught him how to get out of bed – but he can already do that, too, using his good right leg.
My new room had a much bigger bathroom, and less street noise. On the telephone I found myself telling callers I was ‘blue’, which was an understatement. I realized I had to get used to a long-term approach. If I was lucky I might be on the road to recovery by Christmas, but not sooner.
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Deficits
1–27 September
Neurology’s favourite word is deficit, denoting an impairment or incapacity of neurological function: loss of speech, loss of language, loss of memory, loss of vision, loss of dexterity, loss of identity …
Oliver Sacks, The Man Who Mistook His Wife For A Hat
In the Devonshire Hospital, devoting two or three sessions a day to my gradual rehabilitation, I became more than ever acutely aware of what I had lost, of my ‘deficits’. I seemed to have been pitched forward into old age, and much of my anger came from the daily war between a youngish man’s spirit and imagination, and what I cursed as an old man’s body. Outside my window, even the changing season seemed to conspire to underline that I had fallen into ‘the sere, the yellow leaf’.
When the early-September rain came, it was like a curtain being pulled over the high season. Once autumn arrived, I felt robbed of the hot summer, and this no doubt contributed to my depression. Autumn had always been, for me, a good time of year, and not being able to have it, I felt very frustrated. Autumn was the time of beginnings, of the new school year, of fresh starts, and yet here I was, trapped and helpless. I longed to get into a car and drive two hundred miles to the waves and wild wind of the West Country. Instead the Christmas holiday, then four months off, became my personal goal.
I told myself that if I could be home and semi-recovered by then, things would not seem so bad. Throughout my recovery I found it helpful to set myself limited short-term personal goals of the kind I had a reasonable expectation of achieving. At this stage, I still could not imagine being able to walk, though Davina reassured me that this would happen. Having a goal for the immediate future made the present more bearable, and gave me a target towards which to direct my convalescent energies. I told visitors to my bedside that my top priority was ‘myself’, and in the circumstances this assertion seemed neither self-centred nor unreasonable.
SARAH’S DIARY: FRIDAY 1 SEPTEMBER
I can’t believe it’s been the whole month of August. It seems like forever, actually. R. put weight on his weak leg today (with Davina’s help) and was able to take steps with the other one. Better, he said, than he could do yesterday. I spoke to the occupational therapist who said walking depended on Robert – that if he did it his way, he’d be able to walk within a month, but badly, but that if he was patient and waited and did it the way he was told, he’d be restored 75%–90% of what he had before. It’s hard to comprehend all this. I try so hard not to think about what our life is going to be like later, because it’s wrong (or counter-productive) to flood my mind with enticing fantasies, and equally wrong to flood it with black, doomed scenarios. R. looks so healthy; it’s hard to believe this has happened. I’m afraid for him to come home because the contrast for both of us will be so great, his condition now, compared to his condition before. The occupational therapist wants to come home and look at the house and see if we need to put a ramp in (for wheelchair access). Temporarily? I said. Temporarily, she replied. I feel close to panic all the time.
Meanwhile, as a milestone of progress, I was sent for another MRI scan. It was, I suppose, a measure of my recovery that I was now taking an interest in the technical side of Magnetic Resonance Imaging (MRI), a technique for scanning the brain which exploits the fact that hydrogen atoms resonate when bombarded with energy from magnets. Like its cruder predecessor, the CAT (Computerized Axial Tomography) scan – which I’d had on first admission to University College Hospital – MRI displays three-dimensional body images on a screen; its main advantage is that it does not involve radiation.
If my mind was sufficiently recovered to enjoy this kind of scientific information, physically I was still incompetent. I was still being bundled in and out of the ambulance on a stretcher. Now that I was much more alert than previously, I could take in, and respond to, the experience of MRI. The scanner – a narrow, cigar-shaped capsule – seems terrifyingly claustrophobic to some people. Sarah, for instance, said she could not imagine being in a space so narrow and cramped and loud, ‘like blood pounding and people operating heavy drills and alarms sounding’, but I found to my surprise that it was an interesting experience, not frightening at all. I think we both wondered what the scan would reveal. Would it, for instance, explain why my left arm was still not moving? My thoughts ran on: what if it never moved again? How would that change our lives?
The next night, Dr Greenwood, whose punishing work schedule with National Health and private patients always necessitated late-evening visits, came and showed us the result of the MRI scan. The clot – still a black blob the size and appearance of a Rorschach ink-blot on the negative – was much reduced in the brain. When I questioned him about my left arm, he admitted that when it came to the convalescent powers of the brain he and the other experts were still pretty much in the dark, though the current orthodoxy was to believe in cerebral ‘plasticity’. Richard Greenwood was obviously a clever man, and I found myself wanting to impress him. I told him I’d come to the conclusion that having a stroke was like having one’s personal wiring ripped out: everything stops, the electricity of one’s body fails, and the wiring of one’s association with the world also. So the things that had once seemed so important for everyday existence no longer seemed important at all. At this time, I was in a mood of existential crisis, a mood that can still easily recur, lending the world a strange, provisional air, even now.
SARAH’S DIARY: MONDAY 4 SEPTEMBER
Robert seems to get a tiny bit better each day, and that does seem to be what they told us would happen, and the best we can hope for. Today he was actually sliding his foot around a little (with help from Davina), and taking the first tentative steps. He’s not strong enough to do it on his own. As R. made what to me felt like a breakthrough, the two other mats in the gym were filled with two other stroke victims. One, a young Arab man, was groaning and drooling and listing wildly to one side. He couldn’t seem to move at all, and one of his eyes was mostly closed. He looked so weak and lost. The two therapists with him asked him what number his room was, and he couldn’t (whether mentally, or just physically, I don’t know) answer. They told him, and one said, ‘I want you to remember that when you go upstairs.’ She sounded like a nursery-school teacher. Behind him was an older man who can’t move, either, and who just sat in his chair and stared listlessly. Occasionally he tried to mumble things, and the therapists tried to interpret what he was saying. Thank God, thank God, thank God, this hasn’t happened to R. Compared to them, he’s as good as sprinting in the 100-yard dash.
My convalescence continued, inexorable and infinitesimal from day to day: after about a week in the Devonshire, I had mastered the daily washing ritual. I could manoeuvre myself out of bed into the wheelchair, and wheel myself with one hand into the bathroom. There, I would have a one-handed shave and clean my teeth. I would gingerly transfer to the plastic chair under the shower, turn on the water – braving the first chilly blast of cold water – and wash my hair. Then I would pull the cord to call the nurse, take the towel, dry myself, transfer back to the wheelchair in the room, slowly get dressed, dry my hair with the hair-dryer, sit in the chair and write my diary. It’s easy to describe, but in practice every step was painfully slow and laborious, fraught with the fear of falling over.
I was grateful, meanwhile, for the steady flow of visitors; occasionally I sensed that I’d become an object of mild social competition among some of my friends. I found that visitors in hospital are fascinating. Some people (whose blushes I will spare) became quite indiscreet, almost confessional, at my bedside, both much more personal and more forthcoming. I was told things in the privacy of my hospital room I would never have heard in a decade of drunken evenings. Perhaps, confronted by the stark and unavoidable evidence of human failing, my visitors felt obliged to expose their weaknesses and share their own private foibles. Such moments created some very special bonds with a wide range of friends and acquaintances, and sometimes with the people I least expected.
I remember that my friend the writer Michael Ondaatje, who turned up one morning unannounced, and who was usually so cagy, became positively voluble. He was passing through London en route from the filming of The English Patient in Italy, and spoke effusively about the performances of Ralph Fiennes and Kristin Scott Thomas, and about the magic of the Tunisian desert. It was wonderful to see him, and we talked for over an hour. Another visitor, who braved the crowd of robed Arabs habitually clustering in the hospital foyer and whose irrepressible presence brought great energy and joy into a black moment in my life, was Salman Rushdie. Of all the people who came to see me, it was he who somehow managed to leave behind his very considerable tribulations at the door and to focus his attention on me. I had been attempting to read his novel The Moor’s Last Sigh but, physically unable to hold it open for more than five minutes at a stretch, had been failing miserably. I shall never forget the moment when Salman very sweetly read a page from the opening chapter, ‘doing the voices’ with characteristic brio.
One of my most regular visitors was an old friend, Brian Wenham, a distinguished BBC broadcaster who’d suffered a heart attack as a young man and retired early in his fifties. I cannot say exactly what it was that Brian brought to my bedside, apart from sympathy, several bottles of superb white wine and some very good jokes, but I always felt much better for his appearances. Brian always spoke of having a stroke or a heart-attack as like being caught in a ‘biological car crash’, that is, a totally random event, without meaning, and quite beyond our control, which was a helpful and consoling way to look at it. Brian Wenham died very suddenly as I was writing this book and his death removed one of the most vital props of my convalescent life, a mentor in the truest and fullest sense of the word, someone I trusted completely and who provided the kind of wisdom that no one else could match. I cried at his funeral in a way I had not cried since my days in the National Hospital.
After my visitors had departed, I would watch sports programmes on television, wondering when I’d be able to move freely again, and when my left arm would come back. (Even now, I still watch people running across the road or hurrying through the streets with envy for their spontaneity.) As Stephen Pinker points out in How the Mind Works,
Legs come with a high price: the software to control them. A wheel, merely by turning, changes its point of support gradually and can bear weight the whole time. A leg has to change its point of support all at once, and the weight has to be unloaded to do so. The motors controlling a leg have to alternate between keeping the foot on the ground while it bears and propels the load and taking the load off to make the leg free to move. All the while they have to keep the centre of gravity of the body within the polygon defined by the feet so the body doesn’t topple over.
On countless occasions during my convalescence I became aware of the perils of losing my balance and helplessly toppling over as I struggled to relearn the fine art of walking, something I’d taken for granted for at least forty years.
The battle to recover the use of my leg was one thing; the quest for the use of my left arm and left hand was something else. I’d been told that neither would ever again be ‘useful’, and where some stroke-patients go into denial over the loss of previously functioning limbs maintaining, against all the evidence, that ‘I never really used that arm/hand/foot etc.’, I found that I could not accept this loss and would spend hours fruitlessly trying to think my way into reactivating my motionless hand, staring intently at its lifeless fingers.
It was the Greek physician Galen who pointed out the exquisite engineering behind the human hand, its astonishing capacity for manipulating an astonishing range of sizes, shapes and weights, from a log to a heap of seed. ‘Man handles them all,’ Galen noted, ‘as well as if his hands had been made for the sake of each one of them alone.’ So the hand can be shaped into a hook grip (to pick up a bucket), a scissors (to hold a cigarette), a three-pronged vice (to hold a pen), a squeeze grip (to hold a hammer) a two-fingered grip (to turn a key) a disc grip (to open a jar) and a spherical grip (to hold a ball), and each one of these everyday manoeuvres involves an astonishing range of cerebral activity. Needless to say, for as long as my left hand could perform none of these tasks, I felt profoundly depressed and disabled.
When my hand wouldn’t respond, I used to say to myself that, at least, if I could walk and be independent, I’d be okay. I still had no real idea exactly how bad the stroke had been, or how it compared to others, but I was glad to be alive and was becoming increasingly determined about my recovery. I could sense tiny, almost imperceptible changes in my left side, and even though the regenerative wiring of the body and the so-called ‘neural pathways’ remained a mystery, I felt quite expert about my own capacity.
But at times, I still felt horribly frustrated. Every time I got into the wheelchair I felt vulnerable and helpless, stupid and ashamed. For some reason, I felt better when I was fully dressed in it, rather than just in shorts and a T-shirt, my habitual hospital garb, and my uniform for the daily round of physiotherapy.
SARAH’S DIARY: THURSDAY 7 SEPTEMBER
R. lies on the table and bends his knees up to his chest, in a modified form of sit-ups. Davina helps him by pushing the left knee up and supporting it as he leans his nose in. But gradually she takes her hand away – and he continues to do it. Each day, as he takes steps with his right leg, she supports the left leg less and less. It really is coming back. She says she feels things in the shoulder, and now in the elbow, but I don’t want to think that way – I don’t want it to be the only way of gauging achievement. So many of the achievements are mental, finding new attitudes about things or realizing that you can do things you didn’t think you could given your level of mobility. He’s starting to stand up and pee in the toilet now, instead of using the little bottle they leave by his bed. That to me is a huge achievement.
The truth is: we live in our bodies, and any failure of a bodily kind seem doubly terrible. The body fails; you fail. A stroke brings you face to face with these limitations: the human scale of everything that we do. Reduced to this amount of movement I began to wonder: How much space did I actually need? A single room? Ten feet by twelve? More? And what possessions did I really need? Marcus Aurelius had told me that ‘Were you to live three thousand years, or even thirty thousand, remember that the sole life which a man can lose is that which he is living at the moment; and furthermore, that he can have no other life except the one he loses.’ What did any of it matter if you are in a wheelchair, or confined to a bed? When you are reduced to one room, what are your true requirements? A modem? A satellite? I found I was watching television incessantly. I love reading, but often felt so tired and incapable that I couldn’t read for long. It was too much of an effort to hold a book, and quite impossible to fold a newspaper. Meanwhile, with so much frustration and depression, my relationship with Sarah was going through some vertiginous moments. Both our diaries record its ups and downs at this time, the shift in the balance of power between us.
SARAH’S DIARY: SATURDAY 9 SEPTEMBER
We had a big fight this weekend when I insisted that R. go to the park. (It was a beautiful day, I think there must be something unhealthy and horrible about being cooped up in the same room for weeks on end.) He didn’t want to go, and t
hen I had trouble manoeuvring the wheel-chair over the bumps in the street crossing. He began to snipe at me. I started to cry. But it precipitated quite a good talk. R. said he felt helpless and angry. I told him that I was as unnerved by all this as he was, that his being immobile felt just as bad to me as if it were me immobile. What I couldn’t say, though, was: I never learned to push a wheelchair that had my husband in it. I never expected this to happen, or prepared myself for it, or imagined it. Why do you expect me to know what to do?
I was terribly ashamed of the fury I’d directed at Sarah who was, after all, only trying to do her best. I rationalized that I had a right to be angry, but even now I still recall the moment with the wheelchair trapped on the street corner by the pedestrian crossing – me raging, Sarah in floods of tears – with horror and embarrassment.
As the September days passed, and my mood darkened, Sarah thought I should ask Dr Greenwood if I could see a psychotherapist. Despite everything that had passed between us, I still believed in my own powers of recovery and was unsure that the time had come to call in outside help. When eventually I did see Greenwood, and raised the question of my low spirits, we discussed my depression and moved on to the circumscribed world of the room, the cell, and the school dormitory. I compared my stroke to the experience of boarding school. It was not just that the architecture of hospital (corridors, staircases) is evocative of school. There were other, curious parallels: being in the hospital was like being sent away to school for a term, even though just at that moment I could see no end to being there. My answer to the question of psychotherapy was to say that I felt it would soon be time to see my psychoanalyst friend Adam Phillips again, and have another chat.
My Year Off Page 13