My Year Off (22 page)

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 first 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.

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:

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 large 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):

In the world of medical disability, there are some things you simply could not make up.

I found, as I reached this stage of recovery, that it was comforting to be in the company of those who’d experienced and understood what I’d just been through. I became more and more interested in what had happened to me, and involved in stroke-relief organizations. I was visited by a former lawyer named Donal O’Kelly who was in the process of setting up a young-strokes pressure group, Different Strokes. I’d first come across him in the Devonshire Hospital when he’d sent me a photo of himself, and a note suggesting that we get together some time soon. His picture seemed rather promising, I thought. We seemed to be the same sort of age, fortyish,
and he looked pretty fit to me. Just then, that was something that mattered. I was terribly lost and lonely and was very glad to hear from someone who seemed not only to understand how I was feeling, but who also offered a ray of hope for the future. When, in due course, we did meet, we found that we had a lot in common and arranged to stay in touch. Donal suggested meeting up one Saturday, and mentioned a venue at the Tottenham Court Road YMCA.

The first time I met Donal and his friends, a mixed group of young people who’d survived recent such brain-attacks, I was astonished to learn that an affliction which had seemed horrifyingly exceptional to me, and which I’d always believed to be an old person’s illness, was actually rather common among the younger generation.

On the face of it, the people who gathered at the YMCA (under the organization of Different Strokes) seemed like any other weekend fitness group. There was Liz, a delightfully attractive Anglo-Italian tour guide. She had been just twenty-four when she was struck down in Milan on 5 March 1994. She’d had a bad migraine for twenty-four hours and when she came to get out of bed she fell over, more or less unconscious, and couldn’t get up. Her boyfriend called an ambulance, and she spent the next five weeks in Milan’s university hospital before she was shipped back to the Home Counties. Liz had had a blockage in her left carotid artery, and though she’d been on the Pill, she says the doctors still cannot find a medical explanation for what happened.

Amanda, from Toronto, was not much older, slim, dark and seemingly normal. She was twenty-six when she’d been struck down, in her sleep, with a right-side hemiplegia on 11 November 1993. ‘I don’t remember
the first two days,’ she says now, ‘and for a long time I didn’t even know I’d had a stroke. All the doctors could say was “You’re so young.” ’ After ten days in hospital and three months in rehabilitation Amanda was able to walk and talk again, but she could not feed herself properly or get dressed on her own and relied on her mother to look after her. ‘She’d watch over me,’ she says. ‘It was terribly frustrating; it felt like being a child again. I’d forget to do things, or leave the gas burning, and she’d be behind me checking that I was okay.’ Like many young strokes, she says that the worst of the aftermath was feeling as if she’d become a different person somehow: ‘adapting to a whole new you’.