My Year Off

by Robert McCrum

  SARAH’S DIARY: FRIDAY 3 NOVEMBER

  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.

  SARAH’S DIARY: TUESDAY 14 NOVEMBER

  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.

  SARAH’S DIARY: THURSDAY 16 NOVEMBER

  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.

  One of the effects of a dramatic stroke like mine is that you feel shaken free from the concerns and obligations of the world. You care less. Matters that used to seem important no longer seem so crucial. And in one important way, I feel absurdly privileged. I also feel I’ve become a very minor expert in a subject of extreme fascination, the catastrophic failure of the brain.

  Once I was home in St Peter’s Street, and alone with myself again, my fir
st thought had been to review the weeks leading up to my stroke in the hope of finding a clue that might yield some kind of explanation for my sudden plight. Other thoughts crowded in. All my life I’d been fascinated by the dramas of the mind, and I’d often feared that I too would one day have some kind of nervous collapse. The stroke seemed like a massive fulfilment of that fear, and once I was home, with time to reflect on things, I became haunted by the terror that I might now actually go mad.

  Back in the bed from which I had fallen all those weeks ago at the end of July, I was forced once more to confront the question the paramedics had put to me as I lay on the floor by the grandfather clock in the shadows of evening, an inch or two from death: What’s your name? or to put it another way: Who am I? It was a question that would nag throughout my year off, and even now I am still not free of a persistent, and possibly pointless, anxiety about the existential and psychic meaning of my illness.

  [14]

  Seizing the Carp

  13 December – 5 January 1996

  I don’t know why we live - the gift of life comes to us from I don’t know what source or for what purpose; but I believe we can go on living for the reason that (always up to a certain point) life is the most valuable thing we know anything about, and it is therefore presumptively a great mistake to surrender it while there is any yet left in the cup …

  Henry James

  The more I faced up to what had happened, the more I found my ‘black dog’ mood beginning to lift: somehow, somewhere, I found a new determination to get through. In the middle of December we set off for the Caribbean for a holiday in the sun, a generous gift from my mother-in-law. This was what Sarah liked to call ‘seizing the carp’. Sarah’s love of language, its quiddities and absurdities, was one of the qualities that had drawn us together, just as her obsession with grammar and spelling is one of the things that gives us both so much harmless enjoyment. Before I fell ill, we used to joke about carpe diem, a Latin tag that became, for both of us, ‘seizing the carp’, i.e. living life to the full.

  It was hard, in those first few months of recovery, to imagine seizing anything, but I am glad we did what we did. Still nervous about negotiating even the pavement outside my house, I was extremely apprehensive about going, but once we’d established that British Airways had wheelchair facilities, we set off in a spirit of adventure. A holiday that for ordinary people would seem like pure junketing became, in my enfeebled state, a huge effort of will-power, but it did make a big difference, and was an important milestone on my return to health.

  Even the mundane experience of flying became a moment of extraordinary release. All too soon, it seemed, we were circling to land at Bridgetown, Barbados, in the balmy Caribbean twilight, and I was being helped by kind hands into a wheelchair to make the journey through the terminal to a waiting car. Sarah and I quickly discovered that this was the fastest route through any immigration line; later, when it was no longer necessary to ask for wheelchair assistance, we used to speak nostalgically of the days when we’d been treated like VIPs. It was quite dark when we arrived at our hotel, but we could hear the ocean waves beating on the shore and knew that after so many weeks of drab greyness and oppressive restriction we would, in the morning, be greeted by the tropical warmth and dazzling equatorial sunlight of Barbados. For the first time in weeks, I did not feel exhausted by the prospect of the day, or the effort of getting through it.

  It was luxurious in so many respects to be away from the UK in December, but the real joy of our holiday was the opportunity for daily swimming in the soothing waters of the Caribbean. At first I was nervous to do this, and felt intimidated by the waves’ power to knock me off my feet, but gradually I became confident about floating on my back in the water, paddling with my right arm and kicking, where possible, with my left leg. Walking on the beach was still a huge effort. I could make progress over the sand only by supporting myself on Sarah’s arm, but in the water I was free. Floating on the crystal water, and staring up into the dazzling empyrean, I could almost forget what had happened and feel, for a few moments, that I was myself again.

  We had nearly three weeks in Barbados, and by the time we were ready to come home, I felt renewed and positive - prepared for the next stage of convalescence. It seemed appropriate that the New Year had arrived. Together, perhaps, we would find a new purpose.

  On my return to London, I discovered a new mood of acceptance inside myself. Okay, I told myself, so things were not so bad. I could hobble about, with a stick. My left arm, though still paralysed, was beginning to show flickers of life. I was now being told that in the long run I should make a ‘fairly good’ recovery. In other respects, I was beginning to feel pretty much myself, and the dramas of the past several months were beginning to seem in retrospect strangely dreamlike, even hallucinatory. Perhaps, I thought, in the end, I would look back on the whole experience as an interesting episode that would make me realize more than ever what an extraordinary place the world was, and how lucky I was still to be in it.

  The next milestone, in January of the New Year, was my return to work, to the offices of Faber & Faber, about six months after I’d fallen ill. This I found extraordinarily difficult, despite the generous and friendly support of my colleagues on the staff. Initially, I felt incredibly remote from the business of the office, and often terribly tired. The mundane matters of executive life now seemed utterly unimportant to me. Looking back on it now, I see that I was a long way short of competence to function in a busy office, and yet until I was actually at my desk in my old room there was no way of gauging the extent of my convalescence.

  Associated with my alienation from the everyday concerns of Faber & Faber, there was also the question of shame. This was one of the most unexpected and yet most crippling of my psychological afflictions at this time. An eighty-four-year-old stroke victim, Edwin B. Jelkes of Decatur, Georgia, explains in his unpublished account of his illness (one of the many very moving stroke-related documents I received during my year off) how ‘shame’ afflicts the recovering stroke-sufferer:

  At some point in time after the reality that you have actually had a stroke sinks in, you progress to a state of being ashamed to be seen by anyone and are afraid to get out of your stroke shell. This fear of being seen grows until the mentally healthy person gets tired of being ashamed. Hopefully, this tired feeling leads to adventure, and adventure leads to small trials. Desire to get back into the real world that was so natural to you before the stroke finally overcomes the embarrassment you feel, and you step out. And then the fun begins. It took me two months before I mustered enough courage to get out of the house and go somewhere. I chose a movie away from town where I would not be seen by anybody I knew (still ashamed but not so bad).

  In this state of mind, simple things, like a visit to the next-door office, seemed like major expeditions, and duties that in the past I’d managed with ease now seemed burdensome and difficult. Sarah told me that I looked distinguished with my stick, but I was embarrassed by and ashamed of it. I also found that to conserve my energy I had to stay immobile at my desk, and try to use the telephone to conduct business as much as possible. Here was another problem: my speech was still slightly slurred and I had difficulty in constructing complex sentences. I could easily imagine what I might say - I would, for instance, find no impediment to committing my thoughts to paper - but then have the greatest difficulty in expressing the thought in spontaneous speech. I noted in my diary that ‘limitations of mobility and articulacy strike at the heart of who one is as a person’. I was comparatively fortunate in this; those who suffer a left-side stroke will, characteristically, experience far greater obstacles to speech recovery.

  Actually, what could I now do? I could walk with a stick. I could move my left arm about a bit, with difficulty. I could close the fingers of my left hand, but not open them. My mobility was much improved, but I still needed the AFO splint strapped to my left leg to achieve real movement, and I could only wear it inside an extra la
rge pair of Adidas trainers.

  Sleep continued to be one ally in my convalescence. I still slept long and heavily. I would go to bed at ten and rise twelve hours later, feeling heavy and sluggish. This, I suppose, was depression. I know now that I was much more depressed than I realized at the time.

  Dr Greenwood had referred, imaginatively, to ‘the rapids’, but in practice I felt as though I was becalmed, as idle as a painted ship upon a painted ocean.

  Like a prisoner in a cell, I had good days and bad days. On bad days I was terribly aware of my body and its limitations; I was acutely aware of what I could no longer do. I fought the constraints and regretted the past. I mourned, I grieved, and I wailed inwardly. And just as prison throws you back on books and the constantly reiterated assertion ‘This is not the end’, so in the aftermath of my stroke, I read voraciously and refused to admit defeat. There would, I told myself, always be the good days. On good days, I did not fret over the uselessness of my left arm or left leg. I was at peace in my body, and my mind was keen and alert. I felt complete, alive and good. Such days were rare. Tiredness was always creeping up. If I could vanquish tiredness, I told myself, I would be fine. I admonished myself not to be impatient. Everything takes time. Time can be your friend as well as your enemy. Time, time, time … When would I ever feel myself again? On some days, when I woke, even the smallest thing seemed impossible. I fretted over arrangements and logistics, and the world seemed so threatening.

  The worst of any day was always getting started, finding the energy to haul my body to the edge of the bed and struggle into the bathroom. For several months I was able to run myself a bath and gingerly climb into it, but I then lacked the strength to get myself out and had to be hauled out backwards by Sarah, an ignominious procedure that neither of us enjoyed. Bathing became less of a drama when Islington Council supplied me with a plastic shower chair specially designed for use by the disabled. When I had the strength to stand upright in the shower, I soon discarded this chair, but Islington Council never forgets. More than a year later, I received the following letter (from the Neighbourhood Services Department & Community Health Service):