Take a deep 'Breath', you'll need it

UQ Master of Philosophy (MPhil) student and 2022 UQP Writing Mentorship winner Carly-Jay Metcalfe has written a memoir that will leave you breathless. Literally.

Her recently published Breath is a gut-wrenching, ‘no-holds-barred’, near-death story of hope and perseverance that inspires and provokes in equal measure. A searingly honest tale that, ultimately, is about living your best life.

But it also reveals how being much-loved and a bit cheeky helps.

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So, how did she get here?

Since drawing her first breath 47 years ago, Metcalfe has struggled.

Born with cystic fibrosis (CF), a genetic condition that impacts cells, tissues and the glands that make mucus and sweat, she ‘failed to thrive’ as a baby. Her body was creating huge globs of viscous mucus that clogged her lungs, pancreas and intestines, making it difficult to breathe or absorb food.

“The upside was that I could eat whatever I liked without putting on weight – until being given massive doses of corticosteroids, that is!” she laughs.

The downside was that she didn’t have the strength to easily traverse the recurrent respiratory infections she was prone to, nor the digestive disorders that plagued her enjoyment of food. She was in and out of hospital, living with the constant prospect of death yet, ironically, savouring life to the fullest, aiming to ‘feel’ as much as possible.

“Back in the ’80s, CF kids had a reputation for being naughty – breaking in to the hospital kitchen and chapel, holding seances and wild parties,” Metcalfe said.

“With a low life expectancy, we felt we had nothing to lose. Swearing was an effective coping mechanism as a child!”

Reckless behaviour also helped numb the pain when yet another friend died from the condition.

“I was always wondering who was next, hoping it wasn’t me.”

Images of Carly-Jay as a child with her sister Nikki in hospital..

Carly-Jay with her sister Nikki. Images: supplied

But at age 21, it nearly was her

As her body began ‘rotting from the inside out’, Metcalfe spent almost 9 months gasping for breath, slowly dying on her hospital bed with only books for company, until finally being called in for a double lung transplant. The start of a new life. And, back then, the only viable ‘treatment’ for CF.

But it wasn’t easy.

“I wanted to know how the nurses had let a lunatic into intensive care to pour fuel over my chest and drop a lit match,” Metcalfe writes in her book.

She later allegorised the agonising pain as ‘the husk of her old body falling away’.

Unfortunately, one casualty of that old body was the loss of her voice. A ‘one in one hundred thousand’ side-effect of the transplant saw her left vocal cord paralysed, effectively quashing her long-held dream of becoming a professional actor/singer. But, ever the pragmatist, she changed her degree major to writing and contemplated recording her life story.

“This book has been 35 years in the making,” Metcalfe said.

“I have always wanted to keep the memory of my friends alive, to give them representation, tell their story, and show people what happened. No-one has really written in this way before anywhere in Australia, maybe even the world.

“I finally got serious in 2018 because people kept asking me about it and, after drafting the pieces of my book, won a scholarship to complete my MPhil (Creative Writing) at UQ.

“I then applied for the 2022 UQP Writing Mentorship and within 5 months of winning, had secured a publishing deal with UQP.

“I was very lucky – but the writing process was by no means cathartic.”

Reliving the joys and horrors

Part of the retelling of a life means the re-experiencing of it, both good and bad.

The comfort of a loving family and close-knit circle of friends: “I won the parent and friend lottery in life: I couldn’t have asked for better.”

The joy of wowing an audience with her sultry singing and dancing, with praise from her grandmother: “I knew you could belt it out, but my god!”

Loving school, loving her friends, loving romance. Loving reading and the places it took her. Loving her body and the pleasure it created.

But, hating her body and the pain it generated: breathlessness, headaches, depression, endometriosis, diabetes, osteoporosis, fatigue and – possibly the cruellest irony – a rare cancer caused by the very drugs meant to keep her alive: her post-transplant anti-rejection medication.

Enduring periods of low income as her poor health prevented her from working.

Losing friends, so many: “I estimate I’ve lost between 70 and 80 friends to CF.”

Causing perhaps the most harrowing, survivor’s guilt: “I’m better than I was. I used to punish myself for being alive when so many of my friends were not, but then I realised I owed it to my donor and her family to look after myself so that she lives on.”

Metcalfe used to be a risk-taker but is now risk-averse, and is hyper-aware of her transplant, celebrating her ‘transplanniversary’ every year.

An image of Carly-Jay Metcalfe standing with her new book, Breath.

Carly-Jay talks with her doctor ahead of her double lung transplant. Image: supplied

The big reveal

Being so close to death – her own and others’ – on so many occasions means that for Metcalfe, many of life’s ‘social niceties’ lose importance. Spirituality, sexuality, bodily functions, mental anguish, and intense ‘meaning of life’ debates are all topics for discussion.

So too are society’s ‘not-so-niceties’: organ donation, opioid dependence, post-traumatic stress disorder (PTSD), assisted dying, hospital politics and procedures, and the casual cruelty of some – certainly not all! – health practitioners.

But how did it feel to reveal so much of her ‘private’ self and her medical experiences in her memoir?

“I did care what my parents thought (they were both fine with it); however, I had often felt like my body was on loan to the doctors taking care of me and, when I got really sick, I felt abandoned by my body – so it was good to get those emotions out,” Metcalfe said.

“Also, as a recovering people-pleaser, I wanted to acknowledge the tremendous support I’ve received, and I think that CF has helped me become more resilient and adaptive.”

And she had a point to prove.

“My next book is tentatively titled Twice dead.”

Exceeding expectations

Growing up with CF meant society imposed few expectations: being alive was enough. But Metcalfe was determined to ‘under-promise and over-deliver’ with minimal complaint, and not to be a quitter.

“I think because I’ve been fussed over my whole life, I don’t like to make a fuss,” she said.

So, as well as excelling at school and university, she found work – both paid and voluntary – in retail, academia and even as an agnostic hospital chaplain. She enjoyed several relationships, and indulged her love of music, literature, art and nature.

She endured incredible pain with humour: “If you don’t laugh, you die.”

And she survived to tell the tale.

Which was very fortunate because a new wonder drug, Trikafta, finally came along that means she has no more sinus issues, nor its associated invasive surgeries. And her gut issues are manageable – although she still lives on a razor’s edge because: “Anything can (and does) go wrong with transplant: COVID was a nightmare.”

For other Delta 508 genetic carriers like her, the good thing about Trikafta is that it should remove the need for lung transplants to extend life expectancy.

Is she glad she didn’t just give up when so much of her life hurt? Has all the pain been worth it?

“Definitely, but it’s come at a great cost. I don’t feel defeated, I feel enriched. I love life and am living a wonderful life.” Metcalfe said.

“But I do hope my next life will be a little easier.”

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