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.
SARAH’S DIARY: THURSDAY 14 SEPTEMBER
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.
SARAH’S DIARY: FRIDAY 15 SEPTEMBER
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.
SARAH’S DIARY: MONDAY 18 SEPTEMBER
Davina taped R.’s leg up with a bandage and helped him as he walked around a table! He actually did it. And I saw another flicker in his toes, too. I felt so proud and so happy and so hopeful, and R. was almost ebullient when we got upstairs.
As things come along more with his leg, I’m focusing all my worry and depression on Robert’s arm, which hasn’t shown much improvement besides the flicker of feeling in the shoulder that they started noticing early on. He has more feeling in it, he says, and they say that’s a very good sign, as things go. They say it might come back, but it might not come back. At least there’s still a possibility, and it’s that that keeps me hoping. I think so hard about how bad it would be to have an arm that was totally useless. I suppose in the scheme of things it wouldn’t be that terrible – you could still write, still read, still drive (apparently); it would just require finding new ways of doing the old things, which takes time and, much worse, is an alarming reminder that you’re not the same as you were. You want so much to be exactly the same, to have things go back to exactly the way they were before, and they never will. But what I’m trying to tell myself is maybe that’s not so bad.
As my stay in the Devonshire stretched into September, I found I lost my sense of time and could not, for some reason, keep track of dates. I woke up one morning wondering how long I had been there. Perhaps two weeks? Or was it three? Ever since the stroke had happened, I’d doubted my mental capacity, and now I became convinced, as I did periodically, that I was actually losing my mind. Actually, it had been little more than six weeks since the stroke itself.
I was glad that at least I had kept a record of this experience: regularly at nine forty-five I would sit in the wheelchair, write my diary and wait for the first session of physiotherapy for the day. It was
remarkable what strength Davina had created in my left leg. My left toes were now working fully, which was exciting. The routine of physiotherapy was this: first, being trundled down the corridor in the wheelchair; then, down in the lift, for which we often had to wait interminably. Then downstairs in the basement we’d negotiate the double doors and face a blast of air-conditioning from the gym. Next it was off with the socks, off with the shoulder-brace and left wrist-splint and shirt (here, I was unpleasantly and unavoidably reminded of preparing for outdoor games at school). Then, I’d perform ten ‘sit-to-stands’, then ten more, then some exercises for my arms, then more lower-body therapy. Davina would grip my knees and buttocks and try to get my body to work. She would do this by urging me to attempt the action and then by making the movement herself where I was unable to respond. Every morning while I waited for physiotherapy I’d look at the TV section to see what was on TV to while away the evening. Such was life in gaol.
Dr Greenwood turned out to be totally supportive of the idea of acupuncture, and asked Sarah to ask Dr Zhu, the acupuncturist, to telephone him for his approval. The British medical profession these days is much more open to the idea of alternative therapies than in the past. Dr Zhu was, apparently, properly Chinese, and had trained in Shanghai, which was reassuring.
At the point at which Dr Zhu came into my life, my left arm was still hanging like a dead thing, its fingers seeming as cold and soggy as dead meat. My left leg was like lead, with no feeling or movement apart from the toes. My head ached intermittently. No one seemed to know whether or not I was improving, or if they did, they wouldn’t say. I found the refusal of the experts to commit themselves immensely frustrating. When pressed, the physiotherapists said that they could see what they called ‘flickers’. I could put weight on my left leg. With a bit of luck – ‘maybe’ – I would soon be able to walk. My speech was still slurred, and speaking was an effort. The most frightening headaches seemed to have gone. I wondered: were the headaches something to do with convalescence? On some days, my legs ached as if suddenly released from cramped quarters. Despite Dr Lees’s words when I first went to the National Hospital, any new headache made me afraid. Was this the warning of another stroke? A precursor of a fatal recurrence? I think Sarah felt the same.
Time did not seem so bad now as in the days past. I had been brought closer to many people, including Sarah, whom I loved anyway, but who now seemed totally indispensable. I had also been made aware of things I did not know about; I was older in experience. I had not changed much otherwise – I looked much the same and still felt reasonably young at heart, though often terribly frustrated. If this was a brush with death, I knew now that it could have been much worse. So it was a timely reminder, a tap on the shoulder, a clearing of the throat behind me, a memento mori. I also felt as if I had been given a glimpse of old age – the helplessness and dependency and the waiting for things to happen. Before, in my ‘old’ life, I had always been the youngest in any group; now I would feel like the oldest, at least in experience.
SARAH’S DIARY: WEDNESDAY 20 SEPTEMBER
I dreamed that I was in an elevator that was barrelling up and down in a skyscraper, out of control and not stopping at the right floor, and I began to panic. There was a stranger in the elevator and I ran over and threw my arms around him in fear. When the elevator began to calm down, he still wanted to hug me, and I didn’t want to. When it stopped at the right floor, he stalked away.
Robert is only slurring now when he talks too fast. His breathing is the only thing that seems to be still affected – he runs out of breath at the end of sentences – but it’s very discouraging for him, and hard for me, because I want so much for it to be fine. He calls at work on our special line and my heart lifts and when he can’t make himself so well understood I feel so sad.
The routine went on. Breakfast at eight o’clock (Alpen, grapefruit and coffee), then shower and shave, transfer back to the wheelchair, dress and dry, then sit in the wheelchair and make notes, and wait for the physiotherapist. My moods fluctuated wildly: one morning I had a blow-up with Catherine, the occupational therapist, as I was coming out of the shower. She had come to inspect my feeble efforts at dressing myself (to evaluate the likelihood of my return home), and was driving me mad by watching me struggle into my clothes and offering no help. This was an example of ‘tough love’, and to me it was absolutely infuriating.
Catherine: ‘Everyone is concerned that you are over-using your right side.’
Me: ‘Who is everyone?’
Catherine: ‘The nurses.’
Me: ‘But the nurses change all the time. How on earth can they have any opinions worth having?’
Catherine (defensively): ‘Davina is very concerned about the overuse of your right side.’
Me: ‘She’s never said so. And what do you mean, “overusing my right side”? All I’ve got is my right side!’
I sank into a furious silence. I felt as if I had been treated like an idiot and a child. After this the atmosphere between us became very cool and difficult, a breakdown in relations that was entirely my fault – Catherine is a fine and dedicated professional. I felt better for having written it down in my diary, and added, as a PS, ‘Thank God for Davina!’ In the end, I was saved by Dr Greenwood’s arrival. He seemed to know how vile my mood had been. Greenwood and I then discussed (a) my mood and (b) the possibility of psychotherapy. I mentioned my friendship with Adam Phillips once more but said that I was against seeing a shrink: I couldn’t imagine what we would talk about, or how it would be helpful. I knew I was supposed to feel angry about my situation, and depressed, but when I did get angry, it was fairly unspecific, and came in moments of frustration, rather than all the time. On the whole, I said, I accepted my fate, and was trying to work within the restrictions that had been set down by it. I repeated that I didn’t see how therapy would help. Greenwood said that we were approaching an exceptionally difficult phase that was typical of stroke recovery. He was quite specific about this, and it was clear that he believed this would be a period as trying to Sarah, the carer, as for me, the convalescent. I found him wise and sober and helpful. I had come to trust him completely; and I was determined to get through this phase without becoming overwhelmed by depression and hopelessness.
SARAH’S DIARY: THURSDAY 21 SEPTEMBER
I watch Robert do his physical therapy and get so alarmed when Davina says things like, ‘Your knee’s not really coming in.’ What does that mean? Still nothing in his arm, and Davina is saying if it comes back at all, it might take months, not to expect anything day to day. Robert can shuffle around if he’s wearing an enormous bandage that supports his leg, and if Davina walks along behind him, supporting his waist. He’s been very grumpy and sniping at me a lot. I feel – I feel depressed. Dr Greenwood said we’re approaching what’s in some ways the hardest part, because the more Robert improves the angrier he gets about what he still can’t do.
When I did not sleep well, when I watched the light under the door and wondered when dawn would come, I found my night-time full of fears and thoughts about my future. Perhaps this was a sign that I was finally getting better. Life seemed to be inching slowly towards normality at last; the possibility of going home seemed more feasible. In my daily visits to the physiotherapy gym, I found that I could nearly walk, but my left foot was not strong, and, lacking muscle control at the ankle, dragged badly. As Sarah had noted, the more I got better, the greater my frustration.
It was time for a haircut. Each morning my hair was taking longer and longer to dry, and then I realized – a sobering thought – that it had last been cut just before I got married. When I rehearsed these long, strange weeks since our wedding – our honeymoon in Morocco, our first days at home together in London, the party we’d planned to give for our friends who’d not managed to come to Philadelphia – I recognized that we had been strangely lucky. I felt so close to Sarah now, and hoped that when we got home together we should be closer still. I was sure that the experienc
e had been very good for our marriage in the long term, and we used to say to each other that if we could survive this we could survive anything.
The next big excitement was the arrival of Dr Zhu. He was distinctly Chinese, dressed very plainly in a grey-green shirt and a black tweed jacket, and dark green felt trousers. As soon as he arrived he produced an article about his work from The Times, rather like an author producing his reviews. This amused Sarah and me greatly. He asked the nurse to take a Xerox copy of the article so that we could keep it. I lay on the bed in my underpants and shut my eyes, and then quite suddenly he told me that he had put a needle in my arm. I had felt nothing. I was quite alarmed, but lay there patiently. After my experiences at the National, Dr Zhu’s needles seemed comparatively unthreatening. Millions of people had had this treatment; there was no need to worry. The acupuncture itself was like a series of tiny mosquito bites. Dr Zhu put two or three in my arm, and several in my leg and ankle on the left side, also one in my belly and one in the top of my head, which was a bit more unnerving. After about twenty minutes he removed the needles. I felt very lazy and sleepy after this and wondered if this was connected with the acupuncture. Dr Zhu said he would come again on Tuesday, and then again next Saturday. The evening after his first visit, I seemed to have a slight tingling in my right arm, which, presumably, had something to do with the acupuncture.
My Year Off Page 14