My Year Off (23 page)

Liz, who has a dark-eyed Italian look, with boyish romantic curls and clear pale skin, nods vigorously here. ‘You wouldn’t recognize the way I used to be,’ she says. She’d been a tireless worker and partygoer, getting by on four or five hours’ sleep a night. The effect of her stroke was to paralyse her speech, slowing her processes of articulation almost to a standstill. Hesitantly putting one word in front of the next, so that you can almost feel the enormous effort of will that lies behind the simplest everyday statement, she says, ‘I still have difficulty finding the words. I have to think, think, think, three or four times before I speak or write. My reading’s getting better but it’s still slow.’ There have been times in the past three years when she thought she’d never recover. She has run the familiar gamut of post-stroke emotions: anger, despair, frustration and constant depression. She has now reached a point of reconciliation within herself, but feels that there’s a medical timebomb inside her waiting to go off (unlike many young stroke-sufferers, who can be fairly certain there’ll be no relapse, Liz had a small second stroke in January 1997). ‘I think I’ll live for the day,’ she says. ‘I don’t make many future plans.’

Basil is another of Donal O’Kelly’s Saturday afternoon team who has to think hard when I ask him about the future. ‘I still get very severely annoyed,’ he says, after a long pause. ‘I have to take it from day to day. In my thoughts I can become very aggressive. I ask myself: why has this happened to me?’ Basil has Jamaican parents and, at the time he fell ill, was about to take a place on a TV
Gladiators
show in Australia. To meet Basil, a very good-looking athlete with immense charm and physical presence, you’d never know he’d suffered any affliction. Actually, he says he ‘nearly died’ on 11 March 1995. Over two years later, he’s unable to work (he used to be an engineer) and has to supplement his modest earnings by occasional stints of lucrative modelling. He comes to the YMCA every Saturday because it’s the one place where he can swap stories with people like himself. In theory Different Strokes is about exercise; in practice, it’s the talk that’s really therapeutic, breaking down the isolation that so many young strokes feel.

Liz, for example, believes that her illness came between her and her old friends; it was as though they were frightened by what had happened, frightened and unable to cope. She still finds it ‘nearly impossible’ to meet new people, and says sadly that ‘I tend to stay as lonely as possible’, even when she plucks up the courage to go clubbing like any normal twenty-something. She says that the problem with the men she meets is that they have no idea what’s happened to her or what she’s gone through. ‘They can’t handle it,’ she says, choosing each word with care. ‘They shy away and the next day they just won’t speak to me.’

The stigma the stroke-sufferer experiences is something no doctor will tell you about, but it is a common complaint among younger people, who are more likely to be still forging new relationships, and to be active in the world, especially those, like Basil, who appear to make a full recovery. Today, he is the picture of fitness - until he starts to walk. ‘When I got the brain-attack,’ he says, ‘it felt like I was drunk. My limbs went haywire.’

When he came round he discovered his life had gone haywire, too. His ten-year marriage collapsed (‘my wife couldn’t take it any more’), many of his friends let him down, and he began to feel, he says, that ‘I was no good to nobody.’ Things were so bad that ‘I considered committing suicide.’ He got through the first part of convalescence, but still admits to feeling ‘severely bitter’, another common reaction among young strokes, but not generally recognized in the wider world.

Donal, who has also become quite expert in the statistics of this brutal affliction, told me that each year in Britain some ten thousand people of working age will have a stroke - nearly two hundred per week, of whom one in five will be under forty.

Regardless of age, the physical and psychological damage is the same. The majority of stroke-survivors will have a paralysed arm and many will be unable to walk normally. Liz, Amanda, Basil, and many others like them, suffered blindness, aphasia and various kinds of paralysis. Those who suffer a ‘right-side stroke’ seem to find fewer threats to long-term recovery.

The psychological and social damage of stroke is immeasurable and often it will harm those who are affected even more than the quantifiable physical damage. Between 30 and 50 per cent of patients will
experience clinical depression; about a third of these will still be suffering from clinical depression after one year. As many as 80 per cent do not return to their previous vocations.

Amanda, twenty-seven, is not untypical. When she was struck down, Amanda couldn’t walk or speak, and her hearing and eyesight were also affected; she found the experience profoundly distressing and humiliating. A year after she fell ill, Amanda decided she had ‘to make a new start’, and left Toronto for London. ‘I was determined to get better,’ she says now. ‘I couldn’t relate to my old friends any more. I had to get on my own two feet.’ When she started coming to Donal O’Kelly’s afternoon sessions at the YMCA, she was delighted at last to discover some young people whose experience put her own sufferings into perspective.

Finally, there was Donal himself, who’d brought us all together. Perhaps his story was the most remarkable of all. In June 1993 he was a successful barrister, forty-three years old, recently divorced, without children, a member of a busy chambers. Aptly enough, he was cross-examining a police sergeant about a ‘vigorous arrest’ in a North London courtroom when he felt a pain in his neck and then, as he puts it, ‘all the lights went out’.

He goes on, ‘I was loaded into the ambulance, unable to move and unable to speak. I was taken off to the nearest hospital and carried into casualty still wearing my barrister’s outfit. My words were not coming out right and the staff assumed that I was a drunken actor. Then I felt that pain again and, unable to breathe, my limbs seized up, I passed out and was gone for days. When I woke later I was paralysed on both sides. It was
as though my brain had closed down so that I couldn’t take on the enormity of what had happened.’

After two months, O’Kelly was discharged from hospital, feeling shattered and bereft. He’d discovered that for long-term illness the National Health Service was of little practical assistance and he’d used up much of his savings to pay for private physio and speech therapy. Back in the world, putting his life together, he found that the established stroke organizations did not seem terribly interested in young people who’d suffered as he had.

Gradually, the idea grew in his mind that he should devote his energies to the cause of young strokes. ‘At first I worked as a volunteer with the Stroke Association. I wanted to do more for young strokes, but I got nowhere. Basically, I think they thought I was after a job. Anyway, after a national conference in November 1995, which wasn’t a huge success, a lot of people who’d come expressed dissatisfaction, and out of that dissatisfaction Different Strokes was born.’

However, when Donal described the extent of his initial disability, I felt encouraged. He had been blinded (his sight soon returned) and paralysed, yet now he was walking unaided, and his speech seemed normal, if slightly hesitant. Donal’s example was one that persuaded me to believe in the potential for recovery. Now I go quite regularly to Different Strokes, and Donal and his friends make me feel immensely welcome. When you are recovering from a stroke, the world seems a hard place, and sometimes I would think: No one understands me, or what I’ve been through. It was good to have Donal’s friends to share my experience with.

Soon after I went back to work I was thrilled to
receive, in the post, my disabled person’s orange parking badge. (This was one of the few felicitous side-effects - almost a perk - of the stroke, a
laissez-passer
that, in some provincial towns, changes hands for £1000 on the pensioners’ black market.) The orange badge would enable me to park, I believed, pretty much wherever I wanted. Never mind that it was associated in my mind with elderly people in the high streets of the Home Counties. Perhaps I was at last coming to terms with my situation. I soon discovered the limitations of the Orange Badge in the borough of Westminster. Thus:

A few days later, a small victory: I received a note confirming that I would only have to pay half the fine (£30).

During the working week, I continued to make my regular trip to Faber & Faber, usually after a daily session of physiotherapy. One day in February of that first year, I went to a publishing party, supporting myself with my cane as usual, and found myself being asked, ‘Did you hurt your leg?’

‘Yes,’ I replied, moving away, ‘but it will get better.’ I felt obscurely angered by this innocent question, as if I wanted recognition for what I’d been through. Why did
I feel angry about such things? Why did I expect people to know? Shouldn’t I be glad that my recovery had gone so well?

As I resumed my old life, two things struck me as symbols of that lost world. First, shoes; and second, clothes. Throughout my time in hospital I was either barefoot, or I wore cosy thick white gym socks, but never shoes. It was physically impossible for me to pull a shoe on to my paralysed left foot. Now that movement was returning I was wearing shoes again, shoes I’d not worn for about six months, footwear that seemed strange, even exotic. I felt like a child discovering the adult world of mobility. There was one pair of black shoes, in particular, which I found almost impossible to put on. I’d bought them perhaps two weeks before I’d fallen ill and worn them only once. They seemed to symbolize that lost world to which I could never return. (Some months later I gave them away.)

With clothes, the feeling of alienation was even more acute. For weeks in the Devonshire I’d worn shorts and a T-shirt. Now I was learning to pull on a shirt, fumbling right-handed with the buttons, occasionally dragging myself into a suit, a strange garment that seemed to belong to quite another person, and then struggling hopelessly with a tie. Until my left arm began to move again, a well-tied tie was an impossibility. I came to accept that I’d have to go to work in an open polo shirt.

Meanwhile, I was still having physiotherapy treatment at Queen Square, and being reminded, by the interest taken in my condition by various experts, that this was a research institution. On 13 February, Sue Edwards took me to see John Rothwell, a research doctor who was testing a system for ‘transcranial magnetic stimulation’.
I found him situated at the top of 23 Queen Square, above Dr Greenwood’s office. He worked in a room like a train-spotter’s garage, full of Meccano-style shelving, wires and computer parts. It was hard to imagine, looking over the chaos and clutter, that this was the centre of a highly sophisticated inquiry into the workings of the brain. Amid a litter of reused items, Rothwell was conducting experiments into the vitality of areas of the brain. The chair in which I was seated had been filched from an old Jaguar. Rothwell, a cheery, chatty character, a kind of neurological Dr Who, attached electrodes to my arms and began sending magnetic signals to my brain, stimulating different parts of the body - left arm, left leg, etc. - in an attempt to determine exactly which part of my brain was no longer functioning. At first I did not find the low level magnetic click on my head much of a problem, but when he turned up the power to get a response from the damaged right side of my brain, it became troublesome and anxious-making. I felt, not for the first time, as if I was a stroke-recovery guinea pig. Sue Edwards and her colleague Jo watched in fascination. During one break from his investigations, in response to my questions, Rothwell produced a section of a brain in a bottle of formaldehyde. This was the first time I had seen the crucial organ separated from its protective skull and I was fascinated. Rothwell’s sample brain looked like a giant grey nut; it was cut in half like a Damien Hirst. Rothwell pointed out the damage to the basal ganglia, identical to my stroke. It was shortly after this that I arranged, courtesy of Michael Dunnill, a distinguished Oxford anatomist, to visit the brain sections on display at the College of Surgeons in Lincoln’s Inn Fields.

Sarah, meanwhile, was determined to uncover the
cause of my stroke. In quest of this, and with Dr Greenwood’s blessing, we paid a visit to Mr Thomas at the Lindo Wing of St Mary’s, Paddington. I showed him what I could do. This was February 1995, and at this stage, I walked with a stick and a limp, moving better when my arms moved freely. I could now flex the left wrist and move my fingers, though I could barely grip a sheet of paper in my left hand.

Mr Thomas looked at my MRI scans and suggested that he could perhaps see signs of a tiny congenital abnormality in the veins of my brain and suggested that I get my blood retested by his colleague, Dr Hannah Cohen.

So, sure enough, three weeks later in late February, we went back to St Mary’s for another consultation, and another blood test. Dr Cohen’s concern was that I might have a blood deficiency known as Lupus Anticoagulant, which would make my blood prone to clotting. Dr Cohen was perceptive, friendly and articulate, but her account of what my blood might be like left me depressed and fearful. If I had a clotting abnormality, I’d be treated with warfarin (rat poison) to thin the blood. I nearly fainted as she took blood, and felt woozy afterwards at the thought of the inevitable blood-monitoring that might be necessary in the future. For many stroke-sufferers, a daily dose of warfarin is a routine treatment, but its effectiveness depends on close scrutiny of the blood, and runs the risk of causing internal bleeding. Mercifully, the upshot of several complex tests was that I was declared to have absolutely normal blood.