Authors: Robert McCrum
My Year Off (17 page)
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.
ARAH’S DIARY
: T
HURSDAY
7 S
EPTEMBER
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.
ARAH’S DIARY
: S
ATURDAY
9 S
EPTEMBER
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 then 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.
One of the high points of my recovery at this time was the inspiring kindness of my friends Don and Hilary Boyd who, seeing the depths of immobilized melancholy into which I’d sunk, simply breezed in one day and announced that they were taking me to the cinema. Don is a film-maker. From this outing (my first recreational moment since I’d been hospitalized) was born what we came to call the McBoyd Cinema Club, a regular Saturday afternoon movie-going fraternity of four which, throughout that autumn of 1995, attended some of the deadliest films of the year, possibly of all time, from
Braveheart
to
The Bridges of Madison County
and
Rob Roy.
However, it was from these outings that I learned what it might mean to be permanently disabled and in a wheelchair. I discovered, for instance, how awkwardly the world is constructed if you cannot walk, and how, on a crowded pavement, the majority of passers-by simply do not see the disabled person, and/or treat you with a mixture of ruthless disdain and pitying arrogance. Experiences like these made me more than ever determined to get on my feet again, if possible.
The conundrum of stroke recovery is that while one’s conscious efforts are devoted to recovering one’s lost self, the cruel fact is that this former self is irretrievably shattered into a thousand pieces, and try as one may to glue those bits together again, the reconstituted version of the old self will never be better than a cracked, imperfect assembly, a constant mockery of one’s former, successful individuality.
As I felt stronger, I felt close to being able to do more work. I began to wonder if I should start to type up my diary. Or perhaps I should dictate it into a tape recorder? I couldn’t decide, and in truth didn’t really have enough energy either for one-handed typing or dictation. I
wasn’t sure, either, that my speech was up to a tape recorder yet. Time hung heavily every day.
Time
– the word appears throughout my scribbled diary:
Time, time, time
… Time the healer, time the gaoler. I still had no measure of my progress, and was resigned to taking things week by week, and day by day.
I found myself wondering what I should have done without Sarah: she was a miracle, a total support, a truly wonderful wife. When we’d first met she had liked to tell stories against herself to suggest her unfitness to function in the world (for example, the time when, as a cub reporter, she had attended a press conference about an unfortunate incident on Staten Island in which a man shot and killed his wife and then himself. Sarah had listened to the hard men of the press corps firing questions at the police spokesman – what kind of gun? when did the police arrive? where were the bodies? what were their names? etc., etc. – and had finally plucked up courage to ask a question on behalf of the
New York Times.
‘How many shots?’ she yelled out. Dead silence. ‘Who asked that?’ barked the cop. Sarah mumbled her name and the
New York Times
and the cop said witheringly, ‘Sarah, a guy shoots himself in the head, he shoots himself once.’). Now I was discovering that my apparently scatterbrained wife was secretly a triumph of organization and competence, as well as being supremely capable of soothing my manifold anxieties. When she read aloud in the evenings – we had moved on to
Pride and Prejudice
now – she made me feel calm and good again, and almost relaxed. The continuing routine of physio and speech therapy had become a source of comfort and solace, its very repetitiveness strangely reassuring.
ARAH’S DIARY
: T
HURSDAY
14 S
EPTEMBER
Strength is slowly, steadily returning to his leg. Davina makes him sit down and stand up for hours at a time.
After about two weeks in the Devonshire, I found that the toes in my left foot, formerly cold and lifeless, were starting to move. On 15 September, I noted in my diary that ‘today Davina noticed that my toes were gripping the ground, just for a moment, blink and you’d miss it – but the first actual toe activity in a month.’ This was an emotional moment for me, the first sign of recovery in the left leg. (When it was immobilized it was always ‘the’; only when movement came back did I claim it as ‘my’.) The excitement was intense. Later that same day, when Sarah was taking off my socks in the evening, we suddenly saw independent movement. There they were – my left toes moving! It was like finding life on Mars. All at once, I began to imagine that I might get regular use back to the other ‘lost’ parts of my body.
ARAH’S DIARY
: F
RIDAY
15 S
EPTEMBER
I was helping R. take off his socks last night, and – miracle – his three biggest toes wiggled! And then he did it again. I began to cry, which seems to be my reaction to most things these days. It’s a tremendous effort to do things that aren’t related to R.’s illness. I feel upset if that’s all people want to talk about, and then upset if they don’t talk about it, as if they had no right to go on with their lives while this horror was happening to us. So I force myself to see people and to accept invitations. But I feel sometimes like a cartoon character who runs off a cliff and begins to fall – but only after he’s looked down and seen that he’s walking on air.
After five weeks of an experience I’d come to think of as prison, I found myself wondering: does the flickering in the toes of my left leg mean the beginning of new life? I could spend literally hours staring at my immobilized foot trying to ‘think’ a connection between my brain and my toes. These were among the most frustrating moments of my recovery and I would exhaust myself in my futile efforts. This was indeed a humiliating lesson in one’s impotence over one’s body.
And now Sarah, ever the indefatigable researcher, found an acupuncturist, Dr Zhu, to encourage this recovery. Rather sheepishly, we decided to ask Dr Greenwood whether he would approve of our getting in touch with him. In my conventional English way, I was dubious of the efficacy of alternative medicine, but my feeling was that it couldn’t do any harm, and given that I still had no feeling on the – my – left side, it might do some good. Despite Davina’s supreme efforts my progress was still painfully slow. I remember telling Sarah at this stage that I was willing to trade becoming a pincushion for a bit of feeling and sensation in my left side. In orthodox medical matters I had hitherto been profoundly sceptical: now, as well as entertaining the possibility of acupuncture, I was reading books with subtitles like
The Breakthrough Medical Programme that Regenerates Your Mental Energy, Memory and Learning Abilities.