Multiple sclerosis took away former Sydney Writers’ Festival director Caro Llewellyn’s ability to read


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April 20, 2019 09:10:42

Caro Llewellyn has long trusted in her reading. As the director of Sydney Writers’ Festival from 2002 to 2006 it was, after all, how she discovered and selected authors.

Earlier, as a young product manager at Random House, she persuaded her bosses to buy thousands of copies of JM Coetzee’s Disgrace, certain it would win the Booker Prize (which it did).

Then one day in 2009, while running in the park in New York — where she was living and working as director of the PEN World Voices Festival — her legs went numb.

A short time later, she was diagnosed with multiple sclerosis — a disease of the central nervous system.

Determined to carry on her role with the festival, she was devastated to discover that she was no longer able to read.

“I couldn’t see properly and I couldn’t concentrate, and I would look at pages and the words would just swirl around,” she told RN’s The Bookshelf, the first time she has shared her story publicly.

“A little while after I was diagnosed, my son came in to me one day and he said, ‘You know what, Mum, the worst thing about you having MS is that I never see you with books any more.’

“And that was a terrible moment … the thing that had given me so much joy and so much meaning seemed to me out of reach.”

A childhood close to books, and disability

Even before her diagnosis, Llewellyn had extensive experience of disability: she and her brother grew up in Adelaide acting as the “arms and legs” for their father, Richard, who was paralysed from the age of 20 due to polio.

Having wooed Llewellyn’s mother from inside his iron lung, married and had two children, in the 1980s Richard became a disability advisor to South Australian Premier John Bannon.

“He was able to build a life at a time when really the attitude about people with disabilities was you stay home, you are not a valued member of society, you will have no worth,” Llewellyn says.

From an early age, books were a big part of Llewellyn’s life with her father. He would often read his daughter her favourite, Oscar Wilde’s The Happy Prince, which centres around a swallow and a statue.

“I used to have to turn the pages for him and then he would read the story. I’m pretty sure … that he knew most of that book off by heart because we read it a lot of times,” Llewellyn recalls.

“So this paralysed man, who was a statue in his own way, [was] reading to a child … and I don’t know if he ever saw that in what we were doing, but certainly I can see that book in a whole new light [now].”

“A terrible secret I had to keep”

Llewellyn was introduced to the literary world by her mother, the poet Kate Llewellyn.

The young Caro regularly mixed with the writers who would come to the house, and went on to forge her own literary career: first in publishing, then as an author, and eventually managing literary festivals in Australia and abroad.

Finding new writers and familiarising herself with the work of her guests required her to read broadly, and often.

But like many diagnosed with MS, she started having problems with her eyesight.

“Things would come in and out of focus … it was just like there were aliens in my eyes,” she says.

“Things floated in and out, things moved around, I couldn’t get focus in one eye — it was just a very moveable feast about what was going on in my eyesight.”

Llewellyn could skim texts for information, but novels were beyond her; she didn’t know if she would ever be able to read books again.

“I knew enough to know that things with MS can change — in the beginning I had numbness in my legs … but that [full sensation] came back,” she recalls.

She told only her closest friends and carried on as best she could.

“I had enough experience [managing literary festivals] that I could carry it off. But it was awful,” she says.

“It was an absolutely terrifying moment that the thing that I had built my career on was maybe going to be lost to me … and it was just a terrible secret I had to keep.”

The book that changed everything

The years that followed were traumatic for Llewellyn: she went from reading between two and three books a week to reading nothing for roughly three years.

She says she can’t remember much detail from this time — but she does remember the moment that things took a turn for the better.

Sick in bed one day, she picked up Sandro Veronesi’s Quiet Chaos, which had been given to her by her friend (and the book’s translator) Michael Moore.

A few chapters in, she realised her ability to read had returned.

“I read it in one sitting,” she says.

“It was just extraordinary. I’ll never forget that book. It was a very profound moment.”

Six years later, Llewellyn — who is now based in Melbourne and working as the experience and engagement director of Museums Victoria — has just received her first pair of prescribed reading glasses.

She has also published a memoir about her father and her diagnosis: Diving into Glass.

In May, she will return to the Sydney Writers’ Festival — this time, as an author on the program.

She says her illness has not stopped her in her career — but she knows that’s not the case for everyone.

“It’s an awful disease and everybody’s different,” she says.

“There are people who have MS who are just debilitated by it and can’t work — and I may wake up tomorrow and be like that, who knows?

“But for today I’m OK, and that’s all I can really focus on.”

Caro Llewellyn will speak about her memoir Diving into Glass in conversation with Susan Wyndham at Sydney Writers’ Festival on May 3.

Topics:

arts-and-entertainment,

books-literature,

autobiography,

author,

non-fiction,

disabilities,

multiple-sclerosis,

sydney-2000,

united-states,

adelaide-5000,

melbourne-3000,

australia



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