Authors: Robert McCrum
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.
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.
This is what it’s like at home. We wake up at about eight and snuggle for a bit. Snuggling is hard because Robert hasn’t found a way yet to be comfortable with his left arm. He’s protective of it and when I touch it, either on purpose or by mistake, he gets very defensive. Then I go downstairs and make breakfast: cereal for Robert, and a big pot of coffee in the green art-deco coffee-warming pot, and I bring it up on a tray, with the mail, if there is any. Robert lies in bed. Then, slowly and with great difficulty, he takes a shower, and I help him dry off and get dressed, again very slowly. Then he dries his hair and I make the bed and try to clean up a little. I try to do things but am so keyed-in to him that when he calls out to me I feel like I should be there before he has finished articulating my name. It’s very tiring. There are so many dishes to be washed all the time. All the things that we used to share I have to do now. It means buying light-bulbs, and taking out the garbage, and carrying boxes up and down the stairs, and stripping the bed, and leaving money for the cleaner, and calling the taxi, and remembering about the dry cleaning, and remembering that we need new keys made, and making all the meals, and
organizing, and buying the newspapers and throwing them away after we’ve read them. I’m not very good at it, and I never liked doing it much. Robert hates it that I have to do it, too, but it’s easy for him to slip into the habit of me doing everything. I feel weepy a lot and often find myself bursting into tears when we’re sitting together, out of love for him and latent fears from what happened, that I could so easily have lost him. I feel by turns very sad, and slightly resentful, and very, very happy. He walks better and is slowly getting more energy, but it seems to come and go: some days he’s great, others very dull.
After sleeping for hours at a stretch, I never knew, when I woke, how my mood might vary, or how much energy I might have. I seesawed between listlessness and little bursts of effort. When Sarah and I went out, I found the effort of movement, with my cane, incredibly exhausting. I felt awkward inching my way down the street, and would often not go out until after dark when I would try to navigate my way to the street corner, a distance of perhaps a hundred yards. I was still mortally scared to attempt to cross the road, and would stop at the corner, catch my breath, then, very carefully, turn around and shuffle home. After such expeditions I was always exhausted, but pleased to have achieved something.
I don’t know how much depends on mood and how much on other things, like sleep, or on ineffable factors that we can’t quantify. R.’s arm is gaining in some strength, but still can’t be used for anything. Yesterday we went to see two movies –
Burnt by the Sun
and
The
Madness of King George
, and we had to walk all the way down a long street together to get to the cinema (the traffic was too congested for the taxi). It was very hard for Robert and incredibly slow, and it’s alarming for me to see how precarious you are when you walk down the street with a bad limp and a cane. When people wouldn’t step aside to let him go I glared at them and tried to make them feel bad. I love Robert’s cane and think he looks very distinguished with it.
The struggle of everyday life together brought us closer and closer. Sarah noted that ‘When A.A. [
a friend
] asked me how I was today, “We’re fine,” I replied. There’s no more “I” when it comes to questions of being fine or not; there’s only “we”.’ It’s hard, even two years on, to appreciate how much mental and psychological effort became invested in my nearly useless left arm. I monitored its progress minutely. Sue Edwards was now saying that she could see more than just ‘flickers’ of activity. I was beginning to be able to squeeze with my fingers, but not yet extend them, and could move my elbow a bit. And next to the frustration of this slow recovery was, just below the surface, rage.
Robert shows big flashes of anger, particularly when things hurt him (when the hair on his leg catches in the brace, or his elbow or shoulder is jarred). Part of it is the pain, and part the feelings of helplessness and physical weakness I’m sure he feels. He’s mad too, because he thinks people (me) are poking at him and telling him what to do all the time, and he hates it and lashes out at me. I think this is normal, but I wish he would talk to someone about it. I don’t know the right things to say.
He hates admitting weakness. He’s made quite big progress in walking – he can now begin to lift his foot up. Slowly, slowly, it’s looking like less of an effort. And last night he pulled his arm up at the shoulder, and then lowered it back down! Very exciting. Physically, Robert is improving very noticeably. It’s his spirits that need bolstering these days; he looks terribly depressed, and wakes up with what seems to be overwhelming lethargy and
anomie.
I feel like I’m sniping at him all the time. I want him to have the will to do this himself and feel bad when he doesn’t. But I don’t know quite how to handle it.
This is an authentic record of this most difficult stage of convalescence, and now that I come to write it down I can only add in hindsight that the worst of stroke is the aftermath, when you feel you are on the scrapheap. For me, the lifeline in all this was the thought that I could one day write down my experience, as a reporter from that foreign country, the world of stroke.
By mid-November we were beginning to make plans to take a proper holiday at Christmas. Our idea was to go away and recuperate in the sun and by the sea, probably in the Caribbean. Having missed the summer and the long holiday we’d booked as part of our wedding celebrations, we felt we deserved this. Afterwards we planned to come back via New York, to see Sarah’s parents and some of our American friends, and thus slowly begin to reconnect with the world from which I had been severed these last several months.
At home in London, I was fortunate to have a steady stream of visitors, friends and professional acquaintances. Many of these were people my own age who were curious, I think, to see how one of their number
was getting on. At least that was how it seemed to me. One of these asked me straight out if I’d felt any self-pity. I replied that I could honestly say to him that I did not. Irritation, yes. Anger and annoyance, yes. But not self-pity. It was, however, a good question. Looking back now on the whole experience, it seems like a rather substantial punctuation mark in the course of a long life. At least, I hope so. I began to develop a silly superstition that, just as this had happened when I was forty-two, so I would die when I was eighty-four; one of my visitors told me that Bernard Shaw says somewhere – I have not managed to trace the reference – that to be seriously ill in your forties is to toughen and prepare you for a long life. I also told my friend that I was interested to observe how one of the effects of catastrophic illness was to turn complexity to simplicity. When I reread my journal now, I am surprised how detached I seem to be about my experience, but that, I suppose, lies in my nature.
In my blackest moments I felt that perhaps my life’s significance was bound up entirely in my experience of and response to this ‘brain-attack’. Sometimes, I felt as though I’d spent twenty-something years of effort and literary endeavour to find myself shut into a pigeon-hole marked ‘young stroke-victim’. In my better moments, I knew that I should be grateful to the stroke for giving an enhanced value to my life and for the reminder that one should take nothing for granted. I think I was always given to rumination; now I am more reflective, and less impetuous. I was always happy on my own; now I feel, having survived, that my self-sufficiency had a purpose as a kind of training for the terrible isolation of stroke and its aftermath. I am less impatient; I let things take their course.