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The Guardian - AU
The Guardian - AU
Lifestyle
Neha Kale

Tara Rae Moss: ‘So many doctors in different continents told me that I would never recover’

Author and disability advocate Tara Rae Moss will speak at Our Bodies, a panel at the Sydney Opera House’s All About Women festival.
Author and disability advocate Tara Rae Moss, who is in remission from complex regional pain syndrome, is speaking at Our Bodies, a panel at the Sydney Opera House’s All About Women festival on 10 March. Photograph: Jessica Hromas/The Guardian

Tara Rae Moss no longer takes everyday pleasures for granted. The renowned author, speaker and advocate is alive to small flashes of beauty. She is scouting the world for tiny instances of delight. When we meet at the Royal Botanic Gardens on an overcast Sydney Friday, silver clouds loom overhead. The humidity has turned the plants an otherworldly green. There is growth everywhere: ferns spiral tightly, the lilly pilly trees are sprouting hot-pink berries. Moss slips off her shoes.

“I am toddler-level enthusiastic about the feeling of the grass, to be able to walk without pain,” she tells me. “When I was profoundly disabled, everything was disconnected in a geographical way. There were places we had to go by car, and I had a crane lift for my wheelchair.”

She seems to relish her bare feet on the earth.

“I can now go to places a 10-minute walk away. It’s been a joy to discover the interconnection of space again,” she says. “It’s hard to put into words how profound it is.”

Eight years ago, following a hip injury, Moss was diagnosed with complex regional pain syndrome or CRPS, a rare condition that on the McGill pain scale is thought to rival childbirth or amputation of a digit. In 2021, along with her husband, the poet Berndt Sellheim and her daughter, Sapphira, she sold her house in the Blue Mountains, which wasn’t accessible, relocating to a cottage by the water in her hometown of Victoria in Canada. The condition spread, she says, after a ketamine infusion in 2021.

“I was stuck in the biological mode of thinking around my illness and pain,” she says. “So many doctors in different countries and continents told me that I would never recover. I was split down the middle like a ruler and half of my body was on fire, cold fire.”

She was housebound. Her work dried up. “I began to lose the use of my right arm. I already had no use of my right leg. I really had no choice but to push further into the unknown.”

To research her novels, Moss once trained as a private eye and acquired her racing car licence – a level of physical immersion in her characters that was no longer possible. How did CRPS change her writing? “It changed everything, on all levels of my being,” she says, frankly.

Moss, who will speak at Our Bodies, a panel at the Sydney Opera House’s All About Women festival, now goes by Rae or Tara Rae. The reclamation of the name she was born with reflects a newfound acceptance of herself as she is while honouring all the ways she is no longer the same person.

Her bestselling mystery novels – which she started writing aged 25 after an international career as a model – are often set in the past. Growing up she was fascinated by the way ordinary people could be caught up in extraordinary circumstances.

“My opa was taken for slave labour during the occupation of Poland. He baked bread to bribe the foreman [for] a day pass and get out of the compound,” she says. “My oma, who had young kids, rode a bicycle to Berlin and smuggled flour and sugar across the checkpoints.”

Moss’s books are ruled by strong and vulnerable women who are often negotiating a world shaped by structures stacked against them. In the case of her two most recent novels, The War Widow and The Ghosts of Paris, this is Billie Walker, a private investigator navigating a patriarchal Sydney in the aftermath of the second world war. In The War Widow, Billie wears “an ivory blouse [tied] in a pussy bow at her throat”. Her descriptions of clothes – always delicious to read – signal a deep awareness of the relationship between interior and exterior. How we can either become entrapped by roles society prescribes for us or remake them entirely.

“The idea that women don’t have authority is many centuries old,” says Moss, who famously grappled with female archetypes in her bestselling work of nonfiction The Fictional Woman.

***

​​We walk past lemon myrtle trees in the direction of Sydney Harbour. Moss is reflecting on the time before the invasion of Poland, an era, she says, in which disabled people were murdered by the Nazi regime, considered unfit for society. “I can’t write about the 1940s without exploring human rights issues [for people with disabilities] because it wasn’t just about war – there was a strong component of ableism.”

At the lotus pond an ibis sits, legs bent at a strange angle, wearing an expression of distress. Moss moves closer. She speaks to the bird, enquiring after its wellbeing, her voice gentle, soothing. She doesn’t want to crowd it and so, steps away reluctantly.

To dodge the joggers, she suggests we sit on the grass. CRPS, she says, is more common in women. Diagnosis itself is a privilege. “We know that women are less likely to have pain taken seriously,” she says. She talks about the Flexner report, the 1911 study that transformed medical training and established the primacy of the biomedical model of medicine. It undermined, at least in the west, healing traditions based on the connection between the mind and body and world around us.

At the start of our walk, Moss is entranced by an insect ensnared in a spiderweb, held up by threads, like gossamer. In September 2023, doctors at The Spero Clinic, an acclaimed treatment centre, confirmed that her CRPS was in remission.

“In pain circles, we have arrived at the bio-psycho-social model [of healing],” she says. “For a long time, someone broke an ankle, you reset the ankle. Then people realised there was a psychological element [to pain] and that social injustice impacts how we experience the world.

“For me, the extra leap that was made was into the spiritual.”

She went through a radical shift. She went off her medication. “By the time I reached the clinic, I was upright again using my walker. A big part of that [recovery] is the spiritual work that I’ve now trained in.”

Moss, who clarifies that she is not a shaman (a title granted by communities), studied for several years to become a shamanic practitioner. She says that she resonates most with cultural and spiritual rituals that were part of her own ancestral northern European line coupled with an awareness of the land she is on.

“I work with helping spirits and people report incredible experiences of healing,” she says, arguing that despite the hostility sometimes levelled at alternative modes of spirituality, direct experience of the spiritual is our birthright.

We stand up and make our way back across the gardens and wonder, briefly, how the ibis is doing.

“Our worlds are much richer when we connect to everything around us,” she smiles. “We are spiritual beings having human experiences, not humans having spiritual experiences. It is much more interesting than we give it credit for.”

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