‘COM­ING SO CLOSE TO DEATH MADE ME EM­BRACE ALL THAT LIFE COULD OF­FER’

Nov­el­ist Mag­gie O’Far­rell con­tracted vi­ral en­cephali­tis, a sud­den swelling of the brain, when she was eight years old. She de­scribes its last­ing legacy

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Nov­el­ist Mag­gie O'Far­rell de­scribes the life-long im­pact of con­tract­ing vi­ral en­cephali­tis when she aws eight eyars old

Ire­call 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

At school, peo­ple would trip me up just for a laugh, pull my hair and call me a re­tard

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

I viewed my con­tin­u­ing life as a bonus: I could do with it what I wanted Mag­gie win­ning the Costa Novel Award for The Hand That First Held Mine, 2010, left, and, op­po­site, in 1976

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 €17.99

Mag­gie as a child in 1973, above, and, left, on va­ca­tion in Is­tan­bul

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