Stroke vic­tim: my new brain

Af­ter Lotje Sod­der­land had a stroke at 34, she couldn’t speak, read or even think. Over time she’s worked to re­ha­bil­i­tate her brain and ac­cept what hap­pened to her – mak­ing her in­sights into the mys­te­ri­ous ques­tions of how we think and who we are all the

YOU (South Africa) - - CONTENTS - BY SALLY WIL­LIAMS (Turn over)

RIGHT from the start it’s clear this is no or­di­nary video selfie – the young woman star­ing into the cam­era looks vul­ner­a­ble and scared. You can’t see her head at all, only her face peer­ing from a hoodie she wears to hide her partly shaved scalp and bloody scar – a griz­zly re­minder of the emer­gency brain oper­a­tion she’s just un­der­gone. “Okay, I’m alive,” she says halt­ingly. “I’m not dead. That’s a start.”

Af­ter suf­fer­ing a life-threat­en­ing stroke at age 34, Lotje Sod­der­land awoke in a Lon­don hospi­tal feel­ing like she’d landed on a dif­fer­ent planet. Just a few days ear­lier she’d been a pro­ducer with an ad­ver­tis­ing agency, full of life and en­ergy, al­ways on the move. But un­be­known to her, she’d been born with a tan­gle of ab­nor­mal blood ves­sels in her brain. One night in Novem­ber 2011, for no ob­vi­ous rea­son, it rup­tured.

By keep­ing her in a med­i­cally in­duced coma for two days and per­form­ing surgery on her pari­etal and tem­po­ral lobes – the parts of the brain hous­ing lan­guage and per­cep­tion – doc­tors were able to save her life.

But they weren’t able to do any­thing to re­verse the cat­a­strophic dam­age caused by the haem­or­rhage. She awoke to a world she didn’t recog­nise.

“Colours were much more vi­brant and sounds were louder,” she now re­calls.

“I couldn’t speak at first, or read, and my thoughts weren’t lin­ear or log­i­cal. I knew who I was, and I recog­nised my mother and brother – but I didn’t know any­thing else.”

Un­able to think co­her­ently or ut­ter more than a few words at a time, she some­how fig­ured out how to work the video func­tion on her iPhone. It’s th­ese clips of her­self – some filmed just days af­ter com­ing out of the coma – that would form the ba­sis of an award-win­ning film, My Beau­ti­ful Bro­ken Brain, which is avail­able on the stream­ing site Net­flix. Co-di­rected with So­phie Robin­son, with David Lynch as an ex­ec­u­tive pro­ducer, and filmed over the course of a year, it doc­u­ments the highs and lows of her re­cov­ery.

We see her strug­gling with the al­pha­bet, re­learn­ing how to use her lap­top (her body re­mem­bered how to touchtype but she couldn’t read what she wrote) and try­ing to con­nect with the ghostly traces of her past life.

We also see how, about six months into her re­cov­ery, she vol­un­teered to take part in an ex­per­i­ment.

Some­one less ad­ven­tur­ous might not have been ex­cited, as Lotje was, by the daily zap­ping with elec­trodes, for 20 min­utes at a time, in the hope of re­gain­ing

‘I couldn’t speak at first, or read, and my thoughts weren’t log­i­cal'

cog­ni­tive func­tion, and in par­tic­u­lar be­ing able to read again.

But then things went hor­ri­bly wrong. At the end of the month’s treat­ment (though a link can’t be proved), she had a mas­sive seizure. Much of the progress she’d made evap­o­rated.

“Does sci­ence re­ally know what it’s play­ing with?” she asks.

Lotje ex­plores this and other ques­tions in a new doc­u­men­tary, Make Me a Bet­ter Brain, that’s in the works.

It re­ports on the cut­ting edge of neu­ro­science: the sci­en­tists who re­pair “bro­ken” brains – peo­ple with trau­matic brain in­juries and Parkin­son’s disease. And it ex­plores devel­op­ments in “neuro-en­hance­ment” – med­i­cal tech­niques used to boost the brains of healthy in­di­vid­u­als – as it asks the ques­tion: if we can have the per­fect lips or breasts, why not the per­fect brain?

MEET­ING Lotje at her home in Lon­don I’m struck by how well she ap­pears. It’s dif­fi­cult to be­lieve that this is the same woman who just a short while ago was so pro­foundly dis­abled. “It’s all hid­den,” she says, “all a bit of a mess in­side.”

She ex­plains that she’s blind in the pe­riph­ery of her right eye and will never be able to drive. She’s able to type but still can’t read. She sees print of dif­fer­ent sizes and types but is un­able to make any­thing of it. Read­ing and writ­ing, it tran­spires, don’t go to­gether. The act of read­ing is de­pen­dent on a whole host of pro­cesses in the brain’s word-recog­ni­tion sys­tems, which can break down.

“I use tech­nol­ogy all the time to help me com­mu­ni­cate,” she says. “I use Siri, for ex­am­ple, to de­code an email or a text mes­sage and turn it into sound.”

In ef­fect, she’s un­der­gone a rad­i­cal shift from a visual to a more au­di­tory mode of per­cep­tion. She’s gone from read­ing to lis­ten­ing. She gets her news by lis­ten­ing to the ra­dio and has turned to photography books – vol­umes by Banksy and Hel­mut New­ton are among the few on her shelf – for en­joy­ment. She got rid of most of her old books be­cause it made her too sad to look at them, al­though a few are in the at­tic.

Th­ese days she has to be care­ful, she stresses, be­cause she can eas­ily be­come “over­whelmed” – she’s un­able, for ex­am­ple, to watch a film in the evening. “It’s phys­i­cal,” she says.

“You feel sick and dizzy. My cog­ni­tive re­sponses and pro­cesses and my sen­sory re­sponses and pro­cesses – so vi­sion, sound, the amount of in­for­ma­tion go­ing in – are over-sen­si­tive. Ev­ery­thing is brighter and louder. So it’s very easy to be­come over­whelmed and then,” she clicks her fin­gers, “that’s it. I can’t sleep and if I can’t sleep I’m com­pletely use­less the next day.”

She runs through her rou­tine: 40 min­utes of meditation ev­ery morn­ing; no more than an hour a day on her lap­top and phone; eight hours of sleep a night. And her home re­flects the im­por­tance of quiet in her life. It’s sit­u­ated on a one-way street, which she chose for its peace­ful as­pect. The walls are painted a sooth­ing shade of grey, and there’s min­i­mal fur­ni­ture – a ta­ble, two chairs, a sofa.

This is a huge change, she says, be­cause she used to be “hy­per­ac­tive” and thrived on three hours of sleep a night. “But now it’s very de­bil­i­tat­ing, so I have to lead this monas­tic life.”

De­spite the dam­age the stroke caused she still seems very ar­tic­u­late.

“That’s me hav­ing made an enor­mous amount of progress, and also talk­ing about my brain, which I’m re­ally used to talk­ing about,” Lotje ex­plains. “If you asked me to talk about the war in Syria or some­thing, I wouldn’t be very

(From pre­vi­ous page) ar­tic­u­late at all. It’s just that the brain is my spe­cial­ist sub­ject.”

Make Me a Bet­ter Brain cen­tres on how lit­tle ex­perts ac­tu­ally know about the or­gan. “The more we un­der­stand about how the brain works in terms of what we can touch and feel, the ma­te­rial things, the fur­ther we are from un­der­stand­ing the mind, the in­di­vid­ual in­side of it,” Lotje says. Emo­tions, thoughts, mem­o­ries, dreams, reflections – the essence of what make us hu­man. “Or that was my ex­pe­ri­ence any­way.”

She also voices con­cern about the eth­i­cal di­men­sion of neu­ro­science, which stems from her ex­pe­ri­ence af­ter tak­ing part in an ex­per­i­ment. “It doesn’t make sense to zap a freshly re­cov­ered brain with elec­trodes,” she says. “You wouldn’t teach a child to read by zap­ping its brain, this del­i­cate or­gan we don’t un­der­stand at all. It’s such a risky busi­ness.”

While mak­ing the doc­u­men­tary she wit­nessed some of the won­ders of neu­ro­science, for ex­am­ple moves to­wards “re­cov­er­ing” the mem­o­ries of Alzheimer’s suf­fer­ers, as well as the more con­tro­ver­sial ap­pli­ca­tions, such as the use of tran­scra­nial mag­netic stim­u­la­tion, or TMS, to “cure” autism.

Some stud­ies sug­gest that TMS – a non-in­va­sive pro­ce­dure that uses elec­tro­mag­netic fields to stim­u­late nerve cells in the brain – can help to re­lieve symp­toms of autism, such as ir­ri­tabil­ity and repet­i­tive be­hav­iours, and im­prove so­cial skills.

John El­der Ro­bi­son, who’s in­ter­viewed in the doc­u­men­tary, has chron­i­cled his “emo­tional awak­en­ing” as a con­se­quence of TMS in a re­cent mem­oir, Switched On. While he had an eas­ier time read­ing peo­ple’s emo­tions af­ter treat­ment, he lost “a pro­tec­tive layer”.

He be­came, as he puts it, “over­whelmed with emo­tion”, and his mar­riage col­lapsed. “I thought it was tragic that he was made to feel there was some­thing wrong with him,” Lotje says. “Ev­ery hu­man brain is unique, and he was made to feel he was miss­ing some­thing and had to im­prove him­self in or­der to fit in.”

Given the lim­i­ta­tions of day-to-day life it’s in­cred­i­ble that she man­aged to make the doc­u­men­tary – she came up with the idea, is the pre­sen­ter and had to travel widely, in­clud­ing to Bos­ton, Philadel­phia, At­lanta, Minneapolis and Seattle.

“It was re­ally ex­cit­ing to be on a jour­ney be­cause I love ad­ven­tures,” she says. “That’s some­thing I had be­fore and I still have now.” But of course there were chal­lenges. “Speak­ing is re­ally tir­ing. Peo­ple with nor­mal brains just aren’t aware of what’s go­ing on in the brain when you’re com­mu­ni­cat­ing. It’s so com­pli­cated. So ev­ery evening at din­ner I was com­pletely silent. No fun what­so­ever. I felt a bit use­less so­cially.”

She also nearly fainted dur­ing the film­ing of an oper­a­tion on Deirdre Wild, a woman with Parkin­son’s disease.

“Ac­tu­ally, it was odd be­cause even though I’ve ob­vi­ously had brain surgery my­self, I’d never re­ally thought about what hap­pened un­til I was in the the­atre watch­ing Deirdre have her surgery.”

Lotje was sudde n ly filled with hor­ror: the drilling into the skull, the rat­tle and hum and hiss of all the ma­chin­ery and tech­nol­ogy in the the­atre, Wild ly­ing prone, her vul­ner­a­bil­ity.

“I was pan­ick­ing, full of fear, think­ing, ‘I can’t be­lieve that was me’. One of the ladies who was op­er­at­ing one of the ma­chines could see I was wob­bly and gave me a chair to sit on.”

She saw Wild’s hair be­ing brushed af­ter the pro­ce­dure – an at­tempt to make the pa­tient look pre­sentable for vis­it­ing fam­ily and friends – and with sud­den clar­ity saw her­self. “Ap­par­ently, ac­cord­ing to my mum and my brother, my hair looked all ‘frouffed’ when they came in. But I was un­con­scious. It’s all a bit strange.”

LOTJE was born in Paris in 1977. Her mother was a Dutch fash­ion model and her fa­ther – “a crazy French­man” – was a mu­sic pro­ducer. When she was four her mother moved to Eng­land with her and her older brother, Jan. Her fa­ther was largely ab­sent and she spent much of her child­hood on the move. “My mother was ad­ven­tur­ous and liked mov­ing,” she says. “It made me good at adapt­ing.”

Af­ter study­ing so­ci­ol­ogy at the Univer­sity of Manch­ester, Lotje moved to Am­s­ter­dam and be­came a doc­u­men­tary film­maker, work­ing for a pro­duc­tion com­pany called Sub­ma­rine. In June 2011

she was head­hunted by the Lon­don-based ad­ver­tis­ing agency Mother.

“I was ready to move back to Lon­don. I’d bro­ken up with my long-term boyfriend, and while I re­ally loved my life in Am­s­ter­dam, it was quite lim­ited, and I was ca­reer-minded and wanted to do more.”

Life in Lon­don was a whirl­wind of ac­tiv­ity. “I was work­ing like crazy, trav­el­ling, im­pos­si­ble chal­lenges that I some­how man­aged to com­plete. I loved it. Or maybe I just liked not think­ing about things, be­ing dis­tracted from my­self.” She had a tight-knit group of friends. “When we weren’t work­ing to­gether we’d be hav­ing din­ner to­gether.”

The night of her col­lapse came six months into her job. It was a Sun­day. She spent the evening with friends and then went back to her flat in Shored­itch, where she lived on her own. She re­mem­bers wak­ing up in the night with an ag­o­nis­ing pain in her head. “My brain had al­ready be­gun to haem­or­rhage. I looked at my phone and noth­ing on it made sense. I knew that some­thing re­ally se­ri­ous was hap­pen­ing.”

Drift­ing in and out of con­scious­ness and feel­ing im­mense fear she some­how man­aged to get dressed, take her bag, walk down four flights of stairs and open the front door. She walked across the street, into a ho­tel.

“I re­mem­ber I tried to ask the re­cep­tion­ist for help but she just looked at me strangely,” she says, adding that she doesn’t think this is en­tirely sur­pris­ing. “There’s lots of crazy peo­ple in that area.” She was even­tu­ally found un­con­scious in a ho­tel toi­let, and was fi­nally ad­mit­ted to hospi­tal at 1 pm.

I ask if she wishes she’d been found sooner. “Ob­vi­ously if some­one had found me sooner, the dam­age prob­a­bly would’ve been a lot less.”

Lotje car­ries re­mark­ably lit­tle bit­ter­ness about this. But then her Zen ap­proach is the re­sult of a long process of re­ha­bil­i­ta­tion.

“The first few years were very painful and frus­trat­ing, and it was only when I started the process of ac­cep­tance – which is a long process as well – that I be­gan to value this new brain,” she says. “Ac­tu­ally hav­ing a sim­ple life with fo­cus and value is re­ally beau­ti­ful.”

She says the only way the ar­te­ri­ove­nous mal­for­ma­tion (AVM) – the tan­gle of ab­nor­mal blood ves­sels in her brain – would’ve been de­tected is by chance. “Let’s say I had a car ac­ci­dent and they needed to do an MRI scan, it would’ve been spot­ted, and then I may have had the op­tion of pre-emp­tive surgery, but that didn’t hap­pen.” AVMs are usu­ally con­gen­i­tal; peo­ple are born with them. But they’re not usu­ally hered­i­tary.

What if life hadn’t been so fre­netic? (Ex­perts say the haem­or­rhage could’ve hap­pened at any time, or not at all.) What if she’d been liv­ing with some­one who could’ve sounded the alarm sooner? What if she hadn’t done the ex­per­i­ment? (She’s now on anti-con­vul­sive drugs, and the thought of hav­ing an­other seizure still brings on ter­ri­ble anx­i­ety at­tacks.)

Lotje re­fuses to play the game of what if. “When I was in hospi­tal I was with peo­ple who’d lost the abil­ity to walk, com­mu­ni­cate, speak, com­pletely lost them­selves. I re­alised how for­tu­nate I was.”

Her great pil­lars of sup­port are her mother and brother, who live nearby. She’s also “very happy” in a new re­la­tion­ship with some­one who didn’t know her be­fore. “It’s re­ally lib­er­at­ing be­cause there’s no ex­pec­ta­tion of the old me,” she says. “For a long time all of the peo­ple in my life were see­ing this new per­son and it was an added layer of stress to try to be that old per­son for those peo­ple.”

Does she still grieve for her old life? “I grieve for some of my abil­i­ties, and my work and my lifestyle, but those are all pe­riph­eral, ex­ter­nal things. The essence of who I was is still the same.”

‘I looked at my phone and noth­ing on it made sense. I knew some­thing re­ally se­ri­ous was hap­pen­ing’

© SALLY WIL­LIAMS / TELE­GRAPH ME­DIA GROUP LIM­ITED 2017

LEFT: Lotje Sod­der­land un­der­goes neu­ro­log­i­cal test­ing af­ter suf­fer­ing a stroke. BE­LOW: At home in Lon­don. Al­though what hap­pened to her dras­ti­cally af­fected her life, Lotje hopes her con­di­tion can help sci­en­tists un­lock the se­crets of the brain.

ABOVE: Lotje says colours and sounds are much more in­tense now. RIGHT: She had to learn to write again. FAR RIGHT: She teamed up with Amer­i­can movie le­gend David Lynch to make a doc­u­men­tary about her ex­pe­ri­ences.

ABOVE: Lotje (right) out par­ty­ing with friends in Lon­don in 2011, nine months be­fore she suf­fered herr stroke. RIGHT: With her el­der brother, Jan, and her niece, Matilda.

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