My Year Off
Page 16
Six months before, I had been able to slip across the street to post a letter in the time it now takes to type this sentence. When I got home, after my time in the Devonshire, to cross the street and achieve the same result I would have to raise myself up from my chair, find my cane, limp to the front door (say, three minutes), negotiate the steps to the street and make my way to the corner (roughly, five minutes), then hobble back and collapse exhausted on a sofa in my living room, as though I had just run a marathon. Every day I was acutely reminded that there was a world out there, a world I could not be part of in quite the same way. In my new mood of self-examination I was inclined to say, So what? One tangible effect of my illness has been a more Zen-like response to the pressures and anxieties of the world.
The truth is that in my ‘old’ life as a fit person I had become a monster of irresponsibility. For years I had lived for my freedom. I would look up and see the jets circling over London and say to myself, ‘There is no reason why I should not be on a plane to anywhere in the world, at an hour’s notice.’ I revelled in ways of escape. Psychologically speaking, I carried a passport and a wallet full of international credit cards. Before my stroke, I’d been dissatisfied with my lot; in hospital I’d come to recognize that I’d been ambushed by the ‘adventure’ I’d been looking for, and was travelling into a new and strange interior: my heart. Now, my passport was in a drawer and I had not made even a domestic credit-card transaction in four months.
In my new and vulnerable condition, I became dependent on my wife and together we discovered an intimacy that, if things had been different, might have taken years to establish. Sarah, who had married me, she says, in part because I seemed ‘strong and vigorous’, was now seeing me at my weakest and most exposed. It was hard for both of us, and it demanded constant readjustment. Once I left the hospital and came home, I needed Sarah for so many humble everyday routines: to help me in and out of the bath in the morning; to make our bed; to get me ready for the day. Strictly speaking, I could dress myself, but in practice, I could not do without her: I could not tie a tie, or button a cuff. When, finally, I put on my shoes it was Sarah who would ease my feet first into my socks, then, with the AFO ‘splint’ that supported my ankle and foot, into my shoes, and knot the laces. If the morning post brought medical bills to pay it was Sarah who tore the cheques off at the stub, sealed and stamped the envelope. What else? It was Sarah who had to put the breakfast on the table and who brought home the food for our evening meal. Additionally, I had to learn that everything takes time.
I became friends with slowness, both as a concept and as a way of life. In the past I had been noted for the impressionistic speed with which I could accomplish things. At first, the contrast with my present way of life was a source of great frustration. At times I felt an anger inside me, a rage that could come out in sudden and terrible ways. I had to learn to be patient. In English, of course, the adjectival and nominal meaning of ‘patient’ comes from the Latin for ‘suffering’ – patientia. A patient is by definition ‘long-suffering’. It was then that I realized what Dr Greenwood had meant when he had warned me about this post-crisis stage of recovery. ‘You are,’ he’d said, on one of his evening visits to my bedside, in a phrase that both Sarah and I found extraordinarily apt for our situations, ‘about to go through the rapids.’
[13]
The Rapids
8 October – 12 December
The black dog I hope always to resist, and in time to drive, though I am deprived of almost all those that used to help me … When I rise my breakfast is solitary, the black dog waits to share it … Night comes at last, and some hours of restlessness and confusion bring me again to a day of solitude. What shall exclude the black dog from a habitation like this?
Samuel Johnson, Letter to Mrs Thrale, 28 June 1783
In her study of Sylvia Plath and Ted Hughes, The Silent Woman, Janet Malcolm quotes from Hughes’s poem, ‘Sheep’ (about a lamb that dies inexplicably soon after birth):
It was not
That he could not thrive, he was born
With everything but the will –
That can be deformed, just like a limb.
Death was more interesting to him.
Life could not get his attention.
Janet Malcolm goes on: ‘Life, of course never gets anyone’s entire attention. Death always remains interesting, pulls us, draws us. As sleep is necessary to our physiology, so depression seems necessary to our psychic economy. In some secret way, Thanatos nourishes Eros as well as opposes it.’
Depression is as old as the Greeks. In the fourth century BC it was Hippocrates who coined the terms melancholia and mania, and there were days when it seemed as if both had been invented to describe my state of mind. According to Andrew Solomon, an expert in the condition, between 6 and 10 per cent of all Americans now living are battling some form of this illness. Anyway, Dr Greenwood had been absolutely right. After the Devonshire, a new depression rose up and engulfed me like a wave. The fragile vessel of my personality was swamped and buffeted from all sides, and the months after I began to understand that I’d never be quite the same again were to be among the worst of my life, beset with frustration, irritation and the fear of failure. At times, even while I knew that the facts of recovery were on my side, I found myself thinking: My life is over. At the age of forty-two, I appeared to be reduced to the condition of an old man with a cane, watching the world go by, musing sadly on the past. I had been dumped unceremoniously in the land of the unwell (to me, it is no ‘kingdom’) but it was not until I came to this new place that I realized what a charmed life I’d led. For forty years I had hardly seen a doctor or a hospital. Suddenly, my physical condition was top of the agenda every day of my life. What’s more, I was not going to wake up one morning and find myself magically restored to health. The changes in my condition were infinitesimal, obvious only to those who, like Sarah, observed me from day to day. The frustration of this, I decided, was a bit like losing your wallet.
And it was like losing your wallet every day. Your wallet and your Filofax. The same sense of ‘Goddammit!’ and that sense of ‘Oh, no!’ – all those telephone numbers to call, all those connections to remake. All those little short-cuts that make everyday life bearable. Occasionally, when I lay in bed – the bed in which I awoke on that summer morning so long ago – I would think, Perhaps I am dreaming. Sometimes I would say it out loud: Am I dreaming?
Sleep was now my friend, but if I dreamed then I do not recall my dreams. In my depression I was drugged by sleep, drugged and oppressed and anaesthetized and stupefied by its powers. I spent hours and hours asleep. I could sleep late into the morning. Or I could sleep before lunch, and in the early afternoon. I could sleep as the day faded, and again before nightfall. I could sleep early or late, regardless of whether I had spent even twenty of the previous day’s twenty-four hours unconscious. The sleep monster had me in his jaws, and I was happy to be under the covers with him. When I worried about becoming narcoleptic, I repeated to myself what the doctors had told me in the National Hospital: that sleep was the brain’s way of recuperating from the ‘insult’.
Perhaps (I would think on coming to), perhaps I shall wake up and find that the effects of the stroke will have gone away. Yes, perhaps it could be like the ending of the corniest short story: ‘And then I woke up, and it was all a dream.’ Some aspects of these months became muddled and confused. Time lost focus; events telescoped. Did that really happen? Was this really the case? But no, I was not dreaming, I was changed for ever.
Now that I write this I know that what happened during the night of 28/29 July was an irrevocable moment in my personal history. Sometimes it is difficult for me to acknowledge the importance of what has happened. I come from a tight-lipped culture in which the standard response to misfortune is to assert that one is ‘fine’, or that one is ‘perfectly okay’. It is, of course, massive denial to claim that one is coping when plainly one is not. For me to admit that I was oft
en scared and lonely during these long winter months was as difficult as it was to admit that I could, sometimes, feel a profound anger towards the world that had done this to me.
When, shortly after coming home, I was able to discard my wheelchair, and began to think about going back to work, it seemed for the first time in months that I might make a reasonably full recovery. With my cane, I could sustain a very short, leisurely stroll. I was once more getting out and about in the world, the world I thought I had lost, and which, with Sarah, now seemed to me more precious than ever.
Meanwhile, we both continued to write our fragmentary diaries. Depression hovered over Sarah, too, she who is normally the cheeriest of souls.
SARAH’S DIARY: WEDNESDAY 18 OCTOBER
I feel numb and sleepy all the time; it’s hard to work up any enthusiasm for anything. I’m so relieved that Robert is home but in my relief I’m finally feeling the sadness I know I’ve been beating back all this time. I suppose I have to let myself get through this, too.
My own diary at this time contained pages of unprintable fury, interspersed with an obsessive account of my physical weakness. I had spent my weeks at the Devonshire learning to stand and walk again, but while my left leg had responded to treatment, my left arm was still lifeless and inert. In this condition, my left wrist was vulnerable to spraining and my left shoulder, bearing the full weight of the left arm, could still seem incredibly painful, especially at night. My depression deepened further, and Sarah took the full force of it.
SARAH’S DIARY: THURSDAY 19 OCTOBER
Robert is feeling very sad about his arm, and I am, too. I think I’ve made my peace with it not coming back. But Robert has to make his peace, too. He tosses and turns at night and worries about it, and I think he’s doing what I’ve been doing: using it as a symbol for all of this, the pain of loss, the unfairness of this happening. When I look at our actual situation now, I don’t think it’s that bad. But the emotions surrounding it are.
Sarah continued to search for ways of improving the situation, using all her journalistic skills to check out new treatments.
SARAH’S DIARY: FRIDAY 20 OCTOBER
A visit to the Disabled Living Centre, situated very inconveniently for any disabled person, a 15 minute walk from the Westbourne Park tube stop. No park in sight. A sad neighbourhood with ‘To Let’ signs in most of the shop windows, and shuffling old people with plastic shopping bags. The centre was filled with really ugly shoes, and devices meant to help you out. A lot of them are for wheelchair people; but we need stuff for one-handed people. Hooks to help with buttons; special shoelaces and big shoehorns; reading stands – they have them all, and a dim woman who sounded stricken and said she was just volunteering for the day, so she really couldn’t answer my questions so well. But she was incredibly sweet. All the stuff was laid out like a sad rummage sale, and I felt sorry that more people weren’t there for what was supposed to be a Come On In open house. None the less, I left feeling heartened, with a small armful of catalogues and sense of purpose and a feeling that we really can do this.
Looking back, it was Sarah’s determination that was so vital during these difficult weeks. Like many stroke-sufferers, I was so exhausted by every tiny detail of everyday life – even the energy required to get up and cross the room to answer the front door or the telephone – that the stress of ordinary life seemed overwhelmingly daunting, and the idea of addressing a self-generated programme of rehabilitation almost impossible. The more I sank into inky black inertia, the more Sarah battled on.
SARAH’S DIARY: SUNDAY 22 OCTOBER
We just have to grit our teeth and get through this period, both of us. I have to adjust to my new multi-purpose role: wife and lover and cheerleader and physiotherapist and cook and housekeeper and nurse and all around drudge. So I have to separate out my distaste of all that from what’s happening with Robert. He does get better but it’s terribly slow. I worry about his anti-depressants because they make him so dopey at night. I worry that we’ll never be back to normal. I love him so much. Outpatient physio began today, and it was very encouraging. Robert has energetic, no-nonsense Sue Edwards, who’ll whip him into shape, if anyone will. She worked on his arm and, wonder of wonders, we actually saw things happening. Little things, but still things. He moved some of his fingers. He moved his elbow the tiniest of bits. I am flabbergasted.
Now that I was home, my physiotherapy was conducted at the outpatients’ department of the National Hospital. It was decidedly odd, having spent the summer being wheeled in and out of that gloomy Victorian vestibule with its marmoreal Rolls of Honour to the casualties of the two world wars, now to be awkwardly limping in there through the wheelchair-friendly automatic doors with my stout NHS-issue rubber-tipped cane. At first, I was oppressed by memories of the worst days of August, but as I regained the physical use of my left side I began to feel more positive and optimistic. Sue Edwards, the most recent in what I see with hindsight was a long line of first-class stroke-rehab doctors, was indispensable to this. Under her robust and expert direction – she had no time for convalescent faint-heartedness – I began to make quite speedy progress towards my ideal of self-sufficiency.
For instance, once I’d suffered the stroke, I’d been obliged by law to surrender my driving licence to the Licensing Authority in Swansea, and when I’d been in the Devonshire Hospital, one of my goals had been to be able to drive again. Now that I was venturing out and about in a limited way, I was eager to secure my licence as a disabled driver, and I arranged to be tested at the Banstead Mobility Centre, some twenty miles from Central London, in Surrey.
SARAH’S DIARY: THURSDAY 2 NOVEMBER
I’m scared to death that it won’t work out, that they’ll tell him he isn’t ready yet, and he’ll fall into a funk. I would have thought it was too early, but he was so eager; it was impossible to prevent him from going. I hope, hope that it comes out all right.
For me, however, this was another milestone in my return to everyday life. One morning in November, I made an early start and, alone in the street outside for the first time in weeks, nervously took a taxi down to my assistant Emma’s house in Balham, getting to South London by about eight fifteen. Emma gave me coffee and croissants, and then we went on down into Surrey in my Faber company car, with Emma driving. It was exceedingly strange to be back in the old car again, and yet stimulating mentally. In those first weeks at home, the excitement of doing ‘old’ things for the first time once more never went away, and gave the world a thrilling vividness that it had never had before.
The rush-hour traffic was heavy, but eventually we got through Norbury and places like Carshalton and Wallington, and reached Banstead, where the famous Mobility Centre is situated. It is in the grounds of a former children’s polio and TB hospital, on a hill, as so many of them had been. We drove round a circular avenue between autumnal trees. There were little red-brick houses dotted around the grounds, former children’s wards. After a certain amount of difficulty we presented ourselves at the Mobility Centre and waited to be called for the examination. This was my first encounter with the world outside hospital, and it was an exhausting experience.
The first test was ‘orthoptics’, and here I was relieved to discover that, despite everything, I still had perfect sight, and that my left and right fields of vision had not been impaired by the stroke, as will happen to so many. From orthoptics I went down the corridor to a physiotherapist and a driving instructor. The physiotherapist checked out the weakness on my left side, then the driving instructor seated me in a simulator and tested my reactions in various hypothetical driving situations – a woman and baby crossing the road unexpectedly, a cat running out suddenly, a truck braking and so on.
The instructor said my reactions were pretty quick – quicker actually than the national average, he said, i.e. less than half a second. Then he showed me how easy it would be to adapt my car for one-handed driving with the installation of a remote control (like a TV zapper) on the steering wheel
. I was very encouraged by this, and optimistic that I could soon get back on the road. I was sent outside to wait for the actual driving-test stage of the day. Eventually, I was put into a car with the special adaptation made to the steering wheel, and then we drove round a little testing circle a few times, an exercise I found exhilarating but profoundly tiring. Finally the instructor told me that if I had been attempting a real driving test I would have flunked, mainly due to my failure to look in the driver’s mirror. None the less, he said he would recommend that I had my driver’s licence adjusted, so that I could drive my car. This was a great relief, since without Banstead’s (or its equivalent) approval, you are basically grounded.
For quite different reasons, I think Sarah and I were both pleased that I had passed the Banstead tests without too much difficulty.
Perhaps it was not a coincidence that, after my day at Banstead, in physiotherapy I achieved the great milestone of at last getting my left arm to move. It sounds trivial, but after so many weeks of having it hang lifeless by my side, unresponsive to all attempts to move it, the moment when I found I could raise it, even a few inches, was quite extraordinarily exciting. I wrote in my diary, ‘Sue Edwards is a genius, and gets movement where nobody else seems to find it. Sarah was very encouraged by all this, and remained wonderfully optimistic throughout the session.’
Apart from the trips to the outpatients’ department of the National, there was the continuing routine of home life.