My Year Off Read online

  And yet I found myself moved by Donne and strangely unmoved by Bauby. With Donne, we follow, because he is as we are: ordinary; when he writes of the ‘variable and therefore miserable condition of Man’ we know what he’s talking about, and we share his perplexity. With extraordinary Monsieur Bauby we spectate, dumbly, from a distance, awestruck and horrified, no doubt, but not touched in any way that can register on the Richter scale of everyday human feeling. I had expected to be dead; I had been there; it did not interest me to go back, especially in the company of one so coldly cerebral as Monsieur Bauby (although he had very little choice).

  Gradually, I came to terms with the fact that, although I had indeed survived, my old life was well and truly dead and buried. As I realized why this should be so, I began to face up to the reality of my new life. This was distinctly different from the experience of my ‘new life’ as a stroke-patient in Queen Square. In retrospect, I was beginning to do that from day one of my time in rehab.

  [10]

  Better Dead

  25 August – 27 September

  Meanwhile, where is God? This is one of the most disquieting symptoms. When you are happy, so happy that you have no sense of needing Him, so happy that you are tempted to feel His claims upon you as an interruption, if you remember yourself and turn to Him with gratitude and praise, you will be - or so it feels - welcomed with open arms. But go to Him when your need is desperate, when all other help is vain and what do you find? A door slammed in your face, and a sound of bolting and double bolting on the inside. After that, silence.

  C. S. Lewis, A Grief Observed

  My transfer from the National Hospital in Queen Square to the Devonshire Hospital, adjoining Harley Street, went smoothly. I said goodbye, with end-of-term sadness and excitement, to Cheryl, Phil, ‘Phirrip’, Linda, Hanifa, Mamie and especially Julia, whose sweet good nature had won both my heart and Sarah’s. When I said goodbye to my physiotherapist John Marsden, he said in reply that he expected to see me back as an outpatient before too long. I found this an almost unimaginable thought. Dr Lees looked in for a final check-over, and then the Great Ormond Street ambulance took Sarah and me on the short trip across London to Devonshire Street. The trip through the backways of Fitzrovia was one I’d thoughtlessly made countless times in my car in the old days on hurried rush-hour journeys to west London, but now it seemed symbolic, a new chapter in a journey whose outcome was still dark and uncertain, though just to be moving, to feel the wind in the street and to see the blue of the sky as the stretcher was loaded into the ambulance seemed to offer a breath of hope, a glimmer of light in the prevailing darkness.

  My new room, 304, on the third floor, was much smaller than the one I’d left – the ceiling low, the wood dark – and the street outside seemed much noisier. I missed the Queen Square nurses and the routine of the Nuffield ward, and felt rather trapped. I lay on my new bed, taking in my surroundings, while various members of the hospital staff came to introduce themselves: two black nurses, Cora and Dorothy, then the nursing sister, and then a nurse called Mary, an Irish woman, who told me she would be looking after me for the next several weeks. Gradually I became aware of what it meant to be in a small private hospital (compared to a private ward in a National Health hospital): a level of personal comfort, and twenty-four-hour attention, generally unavailable in the NHS. Finally Davina Richardson, the physiotherapist I had been told at Queen Square would be in charge, poked her head round the door. She looked very attractive in her grey hospital culottes and stripy-cream blouse. I found myself brightening at the prospect of physiotherapy with someone who seemed at once so friendly and intelligent. After these visits, I was soon very tired, and suddenly quite depressed. Sarah was wonderful: she settled me and my things into the room, and eventually I fell asleep. Fatigue was both a friend and an enemy in those early weeks.

  During that first night at the Devonshire I dreamed very intensely, and found myself crying in my sleep. I cannot remember the dreams, but it was the first time I had dreamed so vividly since the stroke. I woke up with tears on my face.

  When the nurse came in at eight o’clock next morning, and asked me how I was, I found myself saying to her, ‘I am still alive.’

  ‘Oh, I’ve never lost any of my patients!’ she replied cheerfully.

  The Devonshire is one of Britain’s top rehabilitation hospitals, with superb physiotherapy facilities, a place favoured by injured sportspeople – and convalescent yuppie skiers. Its regular clientele, however, is made up of wealthy Arabs. During my stay, there were no sportsmen, and no skiers, just some sad paraplegic cases from Saudi Arabia, nearly incoherent victims of desert car crashes. The hospital itself, situated opposite Odins restaurant, a fashionable late-sixties hang-out, is a bit like a small private hotel, though at times the atmosphere on the shadowy, wood-panelled corridors was frankly Oriental, a claustrophobic mixture of bazaar and mosque. Confined to my room for most of each day, I gradually became aware of this when I was wheeled downstairs each morning for physiotherapy. The male nurse who usually took me down to physiotherapy was a wiry, gentle Arab called Mohammed – indeed, all the people who worked in the hospital seemed to be Arab, or Irish, or Greek. I soon guessed I was the only English person in residence. Sarah said she had seen an old colonel on the next floor, but since his stroke had knocked out his speech, we decided that I was the sole in-house representative of the English language.

  I had chosen to come to the Devonshire Hospital (known to its staff as ‘The Devvie’) for its specialization in physiotherapy. My priority, from the first, had been to get myself back on my feet. The physiotherapy gym – a row of adjustable exercise benches and a collection of brightly coloured inflatable balls – was in the basement.

  The first time I came into the gym and saw my fellow patients (of all ages) stretched out on their exercise benches, I thought I was hearing things. Was it really the case that this attractive nurse was weirdly urging her patient with the exhortation ‘fuck, fuck, fuck’? What kind of advanced therapeutic procedure, I wondered, was happening? What was going on? I asked Davina, who explained, with much laughter, that the Arabic for ‘up’ was a word that sounded like ‘fuck’. The nurse was simply asking her charge to lift his foot.

  Sarah would join me down in the physiotherapy gym most mornings, politely deflecting questions from other Arab visitors about the number of children she had. Several old Arab gentlemen, attending brain-damaged teenagers, did not disguise their dismay at my apparent failure to have yet produced an heir.

  Thanks to this regime, and Davina’s expert attentions, my physical restrictions lessened, but with excruciating slowness. In hindsight, I see that she was concerned to get me standing and walking again. She was less concerned that my left arm remained lifelessly out of action (it was, in fact, almost a year after the stroke before I got the use of it back in a limited way). To me, however, the terrible frustration of trying to make a connection between my brain and my fingers, of imagining movement, while staring hopelessly at an immobile hand, was unquestionably among the lowest moments of these weeks. For much of the time, indeed, my lifeless left arm remained strapped across my chest to prevent accidental damage. Plus, there was the fact that I could still barely stand upright.

  For the first twelve weeks after my stroke, I had to move around in a wheelchair, pushed by Sarah or by one of the nurses. The prevailing sense of helplessness was very difficult to come to terms with. I had no control over my feelings, particularly when we were outside, and I would rage horribly against whoever was pushing me. Nobody would say when, exactly, I’d be well enough to walk again, and at moments like these I saw a life of infuriating confinement stretching out before me, a vista of utter helplessness. Sometimes I wondered how I could possibly cope and more than once thought that if this was to be the best that my life had to offer, I would be better dead.

  Later, when I read The Diving Bell and the Butterfly I came to feel ashamed of my mood at this time. Although I could understand and s
ympathize with what Bauby was describing, my afflictions, compared to his, were trivial. But never mind. At the time, like many stroke-survivors, I was shut away in my own sad little world, seemingly incarcerated at the centre of a miserable universe in which the phrase ‘better dead’ aptly summarized my feelings.

  Fortunately, in the universe I could control – the tiny orbit of my hospital bed – I was not completely out of action. I could scribble in my Black ‘n’ Red diary, and write letters or postcards with my ‘good’ right hand; I could see friends and take an interest in the outside world, even though the world itself seemed terrifyingly noisy and overpowering whenever I was in it. Once I was into the routine of daily physiotherapy at the Devonshire, I had to face up to the slow process of recovery.

  SARAH’S DIARY: FRIDAY 25 AUGUST

  R. lies on his back while the physiotherapist moves his leg up and down. He can bend it but not all the way up. He lifts his butt up and down, up and down, and tries to put weight on the left side (he can). He’s gaining balance and symmetry, she says, and strength. I ask Davina, the beatific physio, how she thinks Robert is doing. ‘Very well,’ she says. She’s really pleased. ‘Will he walk?’ I ask. ‘Yes,’ she says. Then she says, ‘Fingers crossed, he’ll do fine.’ Which sounds great. I feel temporarily relieved, then terrified again soon afterwards.

  I think that one of the problems with stroke is that, as a condition, it offers a moving target. Compared to, say, cancer, stroke is not a degenerative condition. If you survive the initial crisis you are – with luck – constantly and imperceptibly getting better. I had to learn to adjust, and also to wait. Even now, two years later, I think the lesson in patience I learned during these weeks is the one that I value most highly.

  Most mornings, Sarah and I would take the wheelchair to the delightful seclusion of the Paddington Street Gardens two blocks from the hospital. The air was now much cooler, and autumn was on the way.

  SARAH’S DIARY: SATURDAY 26 AUGUST

  Dull weekend due to the bank holiday and new routines to adjust to, including the tiny size of the room, which means that whenever Robert goes to the bathroom, the bed and table and chair need to be moved. I opened the door this morning and sent a vase of flowers smashing to the floor. R. is making tiny incremental progress – he can stand more easily, seems to be able to bend his knee, but I so hate hovering over him and making him do these things, and I know it shows him how nervous I am. I have been rubbing his hand and foot which aren’t moving to remind him that they are there, and that they are loved. I stare at R.’s feet and think I see flickers of movement but I don’t want to depend on it or make a big fuss. Dream of being alone in crowds. I spent the afternoon at Marcus and Stephanie’s [American friends] yesterday – two more strangers there – I felt very isolated, covered in a little invisible bubble of misery while they chatted on about work and pregnancies and babies. I joined in but felt I had a huge stamp on my forehead: Wife of Stroke Victim.

  R. finally talked on the phone this afternoon to Peter Carey. No one can tell what an effort it is for him to talk so that he is understood. He has to think so hard about the things he has always taken for granted. I took him out in his wheelchair to a tiny green flowery park a couple of blocks away. It was agony – he becomes so acutely aware of the tiniest bump in the road, or the fact you can’t get into most buildings, or do the things you might like to do. I read aloud again from Charlotte’s Web in which we have reached the place where Charlotte spins ‘some pig’. R. says discovering this book is the one good thing about having had a stroke.

  The weather has suddenly turned autumnal after a dry, bright and very unseasonably (everyone says) hot August. It seemed to mock us, because we spent all of it indoors. I dread the change of climate, of being alone in the sad weather. It is as if we missed our chance to have a sunny, carefree time. At the moment I feel as if I’ll never be carefree again.

  My own mood seesawed wildly – at times I felt almost euphoric with relief and at the satisfaction of being alive, at other times almost suicidally depressed. I had a lot of bizarre sexual fantasies, mixed in with the general mood of depression. On my first Sunday, at three o’clock, I had a visit from one of the physiotherapists, Alex, a New Zealander, who put my paralysed left arm in a sling. With Alex, the exercises became almost sexual. It was strange to feel her breasts pressing against my hand, and to catch the scent of her body, though she did not seem to notice my reaction. I had a fit of giggles as she pressed down on my torso. The seriousness of the physiotherapy soon returned (I don’t think Alex had any idea why I was smiling), but some of the positions she put me in were comically reminiscent of sexual foreplay, and I fantasized about asking her to have sex. The same afternoon, by chance, a nurse came in and gave me some Stroke Association literature, including a hilarious document entitled ‘Sex after Stroke Illness’, a comically old-fashioned leaflet – very sober and literal-minded, with definitions of orgasms and so forth.

  That was also the day I tried to eat Sunday lunch at the Devonshire. Perhaps remembering the happy days of childhood, I chose roast beef and Yorkshire pudding. This was a mistake. With my left hand immobilized, I had difficulty managing the knife and fork and became terribly frustrated. Besides, I still had no proper sense of taste, and did not enjoy my food. I felt bored and tired and disaffected. I noted in my diary that, on a scale of ten, my mood was two.

  It was a symptom of my mood at this time that I found myself at war with the nurses, and I complained bitterly about the cramped conditions of Room 304. I felt angry and helpless. To cap it all, when the catering manager, a friendly Greek, came in and asked how I was, he called me Mr Crumb. As I corrected him, endeavouring to keep my temper, I realized I’d reached a low point to be worrying about such matters of politesse.

  Things slowly improved. I was beginning to make progress in speech therapy, though the effort of articulation remained a problem for me long after I left hospital.

  Each morning, when I woke up, I would repeat as clearly and sharply as possible: Round and round the ragged rocks the ragged rascal ran; and then (Sarah’s favourite):

  Theophilus Thistle,

  The thrifty thistle-sifter,

  Thrust three thousand thistles

  Through the thick of his thumb.

  I was in the middle of these exercises one morning, lying in bed with my eyes closed, when I became aware that the catering manager was standing at the foot of my bed staring at me in amazement. It was clear from his expression that he’d decided I was not only sick but mad as well.

  Veronica, my new speech therapist, turned out to be firm, friendly and positive, not at all reluctant to say what was all too obvious to me: my speech was still badly slurred. That was quite normal, at this stage, apparently. Veronica, a brightly dressed, maternal woman with large spectacles, also told me I had a right to feel exhausted all the time. She was very direct and down to earth and breezily bossy, a change from some of the therapy I’d had at Queen Square. She was the first person who really spoke the truth about what had happened to me, and she gave me quite a hard time about my speech. Early on, she asked me to describe my day, then criticized the slurred way in which I articulated. As a contrast to Veronica, I think I found the nurses’ and doctors’ reluctance to commit to definite pronouncements about my condition and my likely convalescence the most frustrating part of these months.

  SARAH’S DIARY: TUESDAY 29 AUGUST

  I sat on a stool beside R. when he had physical therapy today. He lay on a table and tried to move his leg. He can bend the knee up and, once it’s bent, he can keep it there. A contrast to the first weeks, when it would slide back down like an ice cube on a hot surface. His arm is in a sling because they don’t seem to think there’s any movement in it, and they’re afraid it will flop around and be pulled out of its shoulder socket. He can’t move his foot yet (though I thought I saw movement there yesterday). When we got back to his room he got out of his wheelchair and tried to get on the bed, and miscalculated
and fell helplessly. He ended up on his stomach and couldn’t manoeuvre himself around. His leg and arm got caught and it was very painful for him, and very sad to watch, like a beetle tipped on to its back, or a fish on shore. I feel like my heart is very slowly deflating. But even as I see him go through this I am filled with such love.

  R. just phoned. When he gets tired, his voice gets fuzzy and slurred. They say that will go away over time but, like a lot of this, it’s an alarming feature and you worry that it will be permanent. He’s been moved to a better, bigger room, so some of the nightmarish circumstances of the last few days – having to move all the furniture around so he can be wheeled into the bathroom for his shower, for instance – won’t be repeated again. He says he still feels blue. But he says his blueness has a bit of pink around the edges.

  The part of convalescence that I found most profoundly humiliating and depressing was occupational therapy. Here, the admission of cerebral failure was even more stark. I was reduced to playing with brightly coloured plastic letters of the alphabet, like a three-year-old, and passing absurdly simple recognition tests. Sitting in my wheelchair with my day-glo letter-blocks I could not escape reflecting on the irony of the situation. If only Milan Kundera, Kazuo Ishiguro, or Mario Vargas Llosa, whose texts I had pored over with their authors, could have seen their editor at that moment!