by Maggie O’Farrell
Novelist Maggie O’Farrell contracted viral encephalitis, a sudden swelling of the brain, when she was eight years old. She describes its lasting legacy
I recall my encephalitis, in its most acute phase, in flashes, in staccato bursts, in isolated scenes. Some things are as raw and immediate as the moment they happened. Others I have to almost force myself to confront and I watch them as I might a film: there is a child in a hospital bed, in a wheelchair, on an operating table; there is a child who cannot move. How can that child have ever been me?
Of its aftermath, I have a stronger sense. The coming home from hospital, the weeks and months of being at home, in bed, drifting up and down on currents of sleep, listening in on the conversations, meals, emotions, arrivals and departures of family life below. The visitors who came, bearing books and soft toy animals and, once, a man from over the road bringing a basket of baby guinea pigs, which he let loose in my bed, their tiny, clawed, panicked pink feet skittering up and down my wasted legs.
Convalescence is a strange, removed state. Hours, days, whole weeks can slide by without your participation. You, as the convalescent, are swaddled in quiet and immobility. You are the only still thing in the house, caught in stasis, a fly in amber. As the only sound you hear is that of your own body, its minutiae assumes great import, becomes magnified: the throb of your pulse, the rasp of hair shaft against the cotton weave of your pillow, the shifting of your limbs beneath the weight of blankets. The mattress presses up from underneath, bearing you aloft. The drink of water waits beside your bed, tiny silvered bubbles pressing their faces to the glass. Distances that used to appear minor – from your bed to the door, the stretch of landing to the loo, the dressing-table to the window – now take on great, immeasurable length. Outside the walls, the day turns from morning to lunchtime to afternoon to evening, then back again.
Later, I could be carried downstairs, where I might lie on the sofa, under a blanket, watching the birds swoop from leafless tree to bird-feeder. It was hard to stay warm that winter: body heat is so dependent on movement and I was unable to generate either, my fingers curled into themselves, inanimate and blue.
There were exercises and stretches that had to be performed to keep my muscles and tendons from atrophying. My father would wrap a glass bottle in a blanket and arrange my legs over it and tell me to lift my ankles, pounding the floor if I managed to produce a minor movement. A man much wedded to statistics and research, he kept graphs of my progress. These he still has, records and results, in fading green ink, numbers in millimetres, weight in grams, ankle, knee, arm and thigh. He has a sheaf of my efforts to relearn handwriting, which range from spidery, illegible runes to shakily recognisable letters.
Mostly, though, my sisters were at school and my father at work, so it was just my mother and me in all these empty rooms. There was hydrotherapy at a pool, where I was encouraged, again and again, to lift my foot on to a submerged step, in the hope that the surrounding water would offer the support my wasted limbs needed. There were endless sessions of physiotherapy at the local hospital. I was the only child in physiotherapy outpatients in 1981 and I loved it; the physiotherapists seemed delighted to see me each day, as were the old ladies having their arthritic fingers coated in white wax, the elderly men recovering from strokes, squeezing rubber balls in enervated hands, lifting ankles weighed down with kilogram beanbags. ‘There you are,’ they used to exclaim, as my mother pushed me over the lino, as if my appearance was all they had been waiting for.
I don’t recall the name of the bearded man from the Valleys. I knew it once: he and I saw each other most weeks. He used to say, ‘How come you’re still lying there on the floor? Time you got up, you lazybones.’ He flirted with the physiotherapists, called all the old ladies ‘darling’, making them blush and laugh. He made a bet with me as to which of us would be able to take a step first. I see now, of course, that it was a ruse, that he was never going to walk again, that he wanted me to get up on my feet, in the full knowledge that he never would.
A black and white film exists somewhere, maybe in the archives of a South Wales hospital, of me, aged nine or ten, dressed in the kind of velour suit normally sported by inmates of Florida retirement homes, attempting, with varying degrees of success, to walk along a ward, to climb some stairs, to wield a pen. I look around at the camera and smile, as if I’m appearing in a holiday ciné film, not medical-research footage. There is another, a few years later, where I am lankier, more sullen, more reluctant, wearing drainpipe jeans and a shapeless woollen sweater pulled down over my hands. There are probably doctors, paediatricians, neurologists, physiotherapists out there who were shown these films during their training to teach them about cerebellar disorders.
Physiotherapy outpatients, the staff and the patients I met there, are the reason I am ambulatory today. That they didn’t give up on me, that they believed I was capable of movement, of recovery, when the doctors didn’t, meant that I walked. If someone says you can do something, if you see they really believe it, it puts that possibility within your grasp. ‘Come on,’ the bearded man called out, as I struggled to lift my knees from the mat. ‘You can do it,’ nodded the old ladies from their place at the wax machine. ‘Give me your hand,’ said the physiotherapist, ‘I won’t let you fall.’
It also lulled me into a false sense of how accepted I would be, as a child who could barely walk or hold a pen, had lost the ability to run, ride a bike, catch a ball, feed herself, swim, climb stairs, hop, skip, a child who travelled everywhere in a humiliating outsized buggy. I was loved there, I was special, I was cheered on: everyone wanted only the best for me. It gave me no preparation for what was waiting for me when I eventually went back to school, where people would call me a spaz, a moron, a joey, would demand to know what was wrong with me or what they would catch. Where people would trip me up just for a laugh, spit on me and pull my hair, tell me I was a retard. Where the education authorities agreed to move my classroom downstairs but not the lunch rooms, so every day I had the choice of either going without lunch or climbing the stairs the only way I could, on all fours, like a bear, like a baby, with the whole school watching.
I ate a lot of packed lunches in the downstairs toilets, with the door locked, my feet tucked up so no one could locate me. The smell of bleach, of a certain type of paper towel, always takes me back to this: misshapen peanut-butter sandwiches, eaten alone, cross-legged on a cistern.
* * * * *
The illness comes in and out of focus for me, in adulthood. I can go for days without thinking about it; at other times it feels like a defining event. It means I have to scrawl succinct yet numerous sentences into those too-small spaces on forms that ask, ‘Any other medical history?’ It has meant I need to explain certain things to people I spend time with: why I might fall over or persistently drop cutlery or knock over mugs; why I can’t walk or cycle long distances, why I need to do a series of exercises and stretches several times a day.
It means that my perception of the world is altered, unstable. I see things that aren’t there: lights, flashes or spots in the fabric of vision. Some days, holes will crackle and burn in the centre of whatever I look at and text disappears the minute I turn my gaze upon it. The floor might lurch like the deck of a ship. I can turn my head towards a noise and my brain will suddenly inform me that, instead of standing up, I am lying down, that the room is the wrong way up. I can turn over in bed and somehow my cerebellum won’t keep up and will be left facing the other way; I have to close my eyes, press my fists to my face, breathe deeply until my brain decides to catch up with me. My two-year-old child can knock me over with little effort.
‘Is it just me,’ I will ask my husband, ‘or is this sofa tilting sideways?’
‘It’s just you,’ he will answer patiently.
‘And the ceiling isn’t shaking either?’
‘No,’ he will say, ‘it isn’t.’
It means that my life ever since has involved, for almost as long as I remember, a series of cover-ups, smoke-screens, sleights of hand. I sleep with a light on so that I don’t fall if I have to get out of bed at night. I don’t drink alcohol; never have or will because I cannot touch anything that might affect my already shaky motor control. I stammered appallingly for most of my childhood and adolescence; I still do, on occasion, when confronted with a hostile voice, a sceptical stare or the bald head of a radio microphone.
I fall or stumble if I don’t concentrate. When I ascend or descend stairs, I have to look down at my feet and apply myself to the task of meeting each tread. Don’t ever talk to me when I’m climbing stairs or negotiating a doorway: these acts require my full attention.
I will never play blind man’s buff or wear high heels or ski or bounce on a trampoline. Tables crowded with cutlery, water glasses, jugs, napkins present me with huge problems. I sit down at them with a sense of dread, eyeing them as you might a challenging exam paper, with a mixture of fear and incipient humiliation. It is a sensory, spatial overload that can result in spilt water, dropped forks and broken glass: too many demands on my faulty senses, too many things to navigate. I carry a lot of bruises, blackish-purple leopard spots down my legs and sides, from encounters with bookcases, door jambs, table corners, chair legs. I dread book festival stages with steps – to fall, in front of an audience! – but I refuse, absolutely, to accept assistance.
My left arm is pretty useless; it can just about hold a bag of shopping or the hand of a child or steer a bike, but anything more is too much. I was in a Chinese restaurant with my friend recently: I lifted the teapot with my left hand and missed her cup by about five inches. Scalding dark liquid shot out over the table, over our food, causing us both to dissolve into inappropriate laughter.
I also have a powerful aversion to small, enclosed spaces. When my first child began to walk, I took him to a soft-play centre near where we were living in London. It was enormous, made of cushioned steps, spiralling slides, pits filled with brightly coloured balls. How he loved to run along its corridors, to climb the stairs, to dive face-first into the balls. He was ahead of me as we ran along a padded floor, and then he vanished into a narrow blue tunnel, speed-crawling into its shiny plastic mouth. I was just able to see his socked feet disappear.
I crouched by the tunnel’s mouth; I called his name. Come back, I said. He laughed by way of reply. I assessed the play structure. Was there any other way to get to where he was without using the plastic tunnel? No.
The tunnel was probably the width of three hand spans – I would have to squeeze myself in, possibly wriggle like a snake. And it was longer than my body. It would take several seconds for me to reach the other side.
My son, framed by the tunnel’s exit, was beckoning, saying, ‘Come, come.’ Is it terrible to admit that I hesitated? I couldn’t, in that moment, think of anything I would rather do less than enter that narrow space.
I did, of course. Maternal love is a great force, greater perhaps than all others. When I got to the other side, I was shaking. My son patted my cheek and muttered what I said when I wanted to reassure him: ‘S’aright. S’aright.’ It’s all right.
* * * * *
Coming so close to death, as a young child, only to resurface again into life, imbued in me for a long time a cavalier, even crazed, attitude to risk. It could, I can see, have made me a person hindered by fear. Instead, I leapt off harbour walls, walked alone in remote mountains, took trains through Europe on my own, arriving in capital cities in the middle of the night with nowhere to stay. I cycled blithely along what is dubbed South America’s Most Dangerous Road, a vertiginous, crumbling track cut into a steep peak, the verge of which is liberally punctuated by shrines to those who have fallen to their deaths. I walked across frozen lakes. I swam in dangerous waters, both metaphorically and literally.
It was not so much that I didn’t value my existence but more that I had an insatiable desire to push myself to embrace all that it could offer. Nearly losing my life at the age of eight made me sanguine – perhaps to a fault – about death. I knew it would happen, at some point, and the idea didn’t scare me; its proximity felt instead almost familiar. The knowledge that I was lucky to be alive, that it could so easily have been otherwise, skewed my thinking. I viewed my continuing life as an extra, a bonus: I could do with it what I wanted. And not only had I tricked death but I had escaped a fate of incapacity. What else was I going to do with my independence, my ambulatory state, except exploit it for all it was worth?
I am, I am, I am: Seventeen Brushes with Death by Maggie O’Farrell will be published by Tinder Press on Tuesday, price £18.99; to order a copy for £14.24 (a 25 per cent discount) until 5 September, visit you-bookshop.co.uk or call 0844 571 0640; p&p is free on orders over £15.