‘ MY DARKEST DAYS’ Author Caro Llewellyn on her MS diagnosis
Caro Llewellyn hit rock bottom when she was diagnosed with MS
After learning she had multiple sclerosis, whenever Caro Llewellyn took a taxi across her adopted home of Manhattan, she would ask the driver to avoid going via Fifth Avenue. A regular runner before her diagnosis, Llewellyn had frequented the track that flanks Central Park and the iconic New York street almost daily. It was also where she had first realised something was seriously wrong.
“I had been noticing that when I was walking I had this strange sensation. I couldn’t lift my toe off the ground and I had this weird dragging feeling,” explains Llewellyn, 53, whose memoir, Diving Into Glass, explores her life before and after MS. She booked a doctor’s appointment and continued with life as usual.
Soon after, the 44-year-old went for a run. “I thought, ‘I can’t even feel my legs.’ [But] I was determined to keep going,” she tells WHO. “I was getting pretty freaked out, then I stopped and I realised I had wet my pants. I walked into the bushes because I didn’t know what to do and I wanted to get out of sight because I was so embarrassed.”
Tying her sweatshirt around her waist, she managed to get home where she threw her clothes in the washer and ran a bath. “I remember thinking, I can’t scream in my apartment so I put my head under the water and screamed,” she says.
At the forefront of Llewellyn’s thoughts in the days and weeks that followed, when she underwent tests that eventually confirmed the MS diagnosis, was the promise her father, Richard Llewellyn, had made frequently while she was growing up in Adelaide. “My father always said, ‘I’m your fall-guy; you can go and live big and bountiful lives because I’ve taken a karma kick big enough for our whole family.’”
At 20, Richard contracted polio and was left with 95 per cent paralysis. In an era before equal rights or provisions for those with disabilities, her dad was, says Llewellyn, “a trailblazer”. By the early ’80s, he was at the forefront of the birth of Australia’s disability rights movement, becoming an adviser to then South Australian premier John Bannon. “He always said to us that his life wouldn’t have amounted to much had he not had polio. He really believed it was the making of him. He was a fighter,” says Llewellyn, who was head of the Sydney Writers’ Festival and moved to New York to run the PEN literary festival in 2006.
In the aftermath of her diagnosis, Llewellyn couldn’t suppress her anger. In the months that followed, she smoked and drank too much, and suffered intense depression and suicidal thoughts. “I just wanted to numb it all,” she says.
The medication she had injected three times a week had no guarantee of working and made her feel physically sick and emotionally wretched; it stopped her periods and made her gain weight. She stopped taking it and six months later had a serious fall. With her father’s voice ringing in her ears, Llewellyn had a moment of clarity. She writes, “from somewhere in all that darkness came a small but significant voice, ‘Pull yourself together.’ It was my father’s legacy taking control.”
Out of shape, weak and barely able to make it around the block without her leg dragging, Llewellyn made an appointment at a local physical therapy studio.
Five years on, Llewellyn is back in Australia, working full-time and appreciative that she’s very lucky compared to other relapsing-remitting MS sufferers. She’s also thankful her father never witnessed her MS, but agrees his determination is now always with her. “People are very generous and want to talk and give advice but it’s hard when you think, ‘you have no idea what my life is like’,” she explains. “My whole thing is, I have to turn up smiling. I have to go to work and be put together and look good. And that was what I learnt from my father.”