Breath

by Carly-Jay Metcalfe

Queensland Literary Award Winner
2024 Queensland Book of the Year People's Choice Award

'I am dying. I know that I’m dying, despite not having been told by my doctors that I am dying. I know I am dying because I’m in the dying room.'

Carly-Jay Metcalfe was born with cystic fibrosis, survived a double-lung transplant at the age of twenty-one and faced a rare cancer at the age of thirty. What she has endured should have killed her, but her humour, courage and optimism became her best survival skills.

From her hospitalised childhood to her many friendships, loves and losses, Carly-Jay shares the fickle nature of life with candour and warmth. She writes with compelling insight about organ donation, opioid addiction and survivor's guilt, while still managing to find joy amongst the wreckage.

'Brilliant, funny, visceral – and real. Those who live close to death really know what it is to be alive. 'Breath' is more than memoir; it’s a conversation we should all be having.' Inga Simpson, author of Understory: a life with trees.

‘The only thing more remarkable than Carly-Jay Metcalfe’s story, is the way she tells it. This book is a love letter to the sublime human mess called life; an invitation to pay attention to every precious lungful.' Beejay Silcox

‘‘Breath’ is a taboo-busting examination of illness, propelled by a lust for life and language. Carly-Jay Metcalfe scrutinises the beauty and brutality of the human condition in a voice that is witty and original and true.’ Lech Blaine, author of Car Crash and Australian Gospel.

'The most surprising – and refreshing – thing about Carly-Jay Metcalfe’s memoir is how raunchy and raucous it is, especially for a book about lifelong illness ... It is, ultimately, a deeply affirming book, as big of heart as it is gutsy.' Fiona Wright, author of Small Acts of Disappearance.

Genres: Memoir, Nonfiction, Audiobook, Death, Biography Memoir

272 pages, Paperback

First published February 27, 2024

About the author

Carly-Jay Metcalfe was born with cystic fibrosis and has survived a double-lung transplant at the age of twenty-one and faced a rare cancer at the age of thirty. Her debut memoir 'Breath' (UQP) was published in February 2024 to critical acclaim.

Her writing has appeared in Griffith Review, Sydney Morning Herald, The Guardian, Kill Your Darlings and TEXT journal.

At the 2024 Queensland Literary Awards, Breath won the Queensland Book of the Year People's Choice Award.

Reviews

[Suz]

I WAS BORN TO LIVE, and I was born to die.
Say that to yourself right now.
Now, say it again.
I was born to live, and I was born to die.

I lost my original review when my computer died (yes I do a word doc, this didn’t save me). All mistakes are my own as I don’t have the physical book to refer to, and not happy to have lost my original.

I sat on this review for a few days as is quite usual after an excellent book. Waxing lyrical about it last night in book club, another member with a chronic illness appreciated my recommendation, I told her she’d love it.

I felt I had a lot in common with the author growing up around the same time, the music, the general vibe, the lack of proper rules, the technology, or lack thereof! What I did not have in common was knowing what it was like to grow up with cystic fibrosis. Accessible and engaging, I felt I continued to grasp her experience and what it was like.

Carly-Jay’s dad had a bad flu once, feeling beyond awful, he lamented, how did you do it? Only now understanding how sick his beloved daughter would have felt her entire life. She did it, she just did, it was all she knew.

I was (embarrassingly) unaware a young person had to fight for their life after, a lung transplant, a completely an uphill battle. She was dying pre transplant, she was dying afterwards. Carly-Jay was often very sick, then tragedy struck again, this time another life-threatening illness to grapple with, even her transplant doctor questioned the necessary surgery. So many serious decisions to make, so many times.

At no stage was the tone pitying or self-indulgent, I was entranced by Carly-Jay’s eloquent story telling. I felt a commonality in curiosity and learning through books (her saviour) when later in life diving deeply into nonfiction to learn about why she is Carly, how she has survived, and the implications of the consistent theme of trauma. A PTSD diagnosis eventually was realised, I believe mostly because she refused to give up in helping herself.

Carly-Jay was always supported by a loving family and a massive crew of friends, those she helped and conversely those who were there for her. She was the rock for many. Most doctors were there to fix, not to help with empathy. Sent away with ‘you are ok, you are alive’ throw aways. A lifetime of dear friends dying, growing up while those around her did not. Life in hospital school, running the corridors, breaking into locked wards, and outof isolation, socialising and playing with her sick friends. Then back to normal school, her other friends at the flick of a switch. Living in two worlds.

At one point she’d had enough of one particularly useless doctor who, after a generic apology, said what can I do? She decided to draw blood from him (she was a young girl at the time), her mate was with her, the doc lay down, she applied the tourniquet and carried the procedure out like a pro. The doctor unbelieving.

She did all the things. Camps, beautiful boyfriends, lots of booze, university, eating shit food to pay the rent. Questioning her survival, while burying many loved ones. She became an aunt, loving those around her fiercely. Surviving. Thriving. Writing. I cannot forget to say this though - Carly-Jay is devilishly funny in the telling.

I listened to this via the BorrowBox platform and my public library, lovely to hear the author introducing her work. There is nothing remotely debut-ish here.

[Caitlyn]

If you are going to read 1 memoir/non-fiction/not-your-usual-genre book this year, I urge you to choose this one.

Breath is an unflinching and unrelenting memoir of a woman who has survived over and over and over again; cystic fibrosis, a double lung transplant, cancer, addiction and seemingly every complication these could possibly bring. Carly-Jay leads us through her youth which was probably quit similar to yours or mine (falling in love, rebelling, finding your people) but if you also had to live in a perpetual state of grief, guilt and pain. Then at the age of 21, she was the recipient of a double lung transplant that many observers may consider ‘the end of the road’ or ‘resolution’ but we see every uncomfortable detail of the trials she faced in the following years. Her ability to even write this book, let alone actually endure all she has and come out with such a positive outlook and passion for helping others speaks volumes to what a remarkable and courageous woman she is.

I know this author is talented because despite having almost nothing in common to my knowledge, I feel such a camaraderie and a sense of kinship with her after reading this book. The tone of her writing and the back-and-forth throughout her life really feels like you’re sitting down with an old friend with whom you have a lot to catch up on. She has taken me on an objectively unrelatable journey and I feel like I didn’t miss a single step. She’s used Breath to speak 100% candidly about chronic illness, being failed by medical professionals, womanhood and how we perceive our own, and the of spirituality in her life. I don’t consider myself a spiritual person for the most part but this book had me asking myself important questions about life and death and what happens in between that I think everyone can benefit from.

I was expecting tears and there were definitely a few throughout but I can’t say I’ve ever gotten misty-eyed reading acknowledgments before. Breath comes to a close somehow finding harmony between morbidity and hope, and aside from sharing her story, this book feels like a love letter to those who have died and those who have done everything in their power to keep her from joining them.

[Jaclyn]

don’t think I’ve ever read such a searing and honest and funny account of illness and disease. Metcalfe has a wonderfully irreverent sense of humour and her jokes at incredibly difficult moments were delightful. But she also understands gravitas and I wept my way through her feelings about her organ donor. The novel Heartcease was also partly about organ donation so I reiterated my wishes to my family as both books were a good reminder of the good that can come from death. Metcalfe has endured more than most and I found her telling of living and almost dying to be beautiful and moving. A really powerful reminder that we will all die, hopefully a ‘good’ death, and all we can do until then is live as best we can with the hand we’re dealt.

[Rui Niu]

As a surgeon and medical educator this is a must read for any health professionals who want to understand life, death, patient doctor communication, the health system and finally, the humanity of our important and incredibly privileged positions on the other side of the bed/table.
Thank you for your vulnerability in sharing, this book is firmly imprinted in my mind and I have taken a lot away. Brilliant.

[Tommy Maker]

Years ago I used to raise funds for Cystic Fibrosis during the late 1980s through to beginning of the 2000s, every year, rain shine or snow. I had a family friend who was a sufferer, seeing him struggle at times, to do things we take for granted was soul destroying, may he rest in peace.

This is beautifully written, from a birds eye view of a sufferer, who witnessed friends and fellow sufferers succumb to death.

Carly is an inspiration to all CF sufferers, and is a survivor. It has moments that brought tears to my eyes, like when she found the grave of the women who donated her organs upon her death, and humorous moments, that helped her cope.

It was such a joy to be able to experience reading this story, and I'm happy Carly became an ambassador for CF, her life is truly amazing.

As she says we are born to die, that's the sole purpose of our lives, and that couldn't be farther from the truth. Life is what we make it!

I highly recommend everyone to read this powerful, and heart warming story of the struggles of life, living with a chronic condition, where timing is everything.

[Ali]

“There are a slew of grief memoirs out in the world for a reason. They not only speak to people grieving death, they also speak to those of us who are constantly grappling with loss - loss of loved ones, relationships, outcomes we’d been expecting, identities, and even bodily functions.”

As a reader who has spent 30 years working in the health system, including years as a paediatric nurse caring for kids with CF, cancer and other life-limiting conditions, but also as a human who has experienced loss and grief, I connected with this book on many different level. Thanks so much for writing your memoir CJ.

[Sheila Pritchard]

Phenomenal! What an incredible woman! From being born with Cystic Fibrosis to years of horrible illness and the death is so many young friends to a double lung transplant and the many struggles beyond…
Becoming a hospital chaplain and death doula … and writing such an inspiring memoir! All I can say is: Wow! Thank you!

[Gay M. Liddington]

Carly-Jay Metcalfe takes no prisoners in her memoir Breath. Her unrelentless truth-telling of living with cystic fibrosis, a double lung transplant, cancer and endometriosis, kept me reading voraciously. The author weaves her pain with gob smacking and irreverent humour. This skillfully written memoir is a story of hope, courage and victory against all odds. Metcalfe is my new super-hero.

[Kaz Grambauer]

Absolute truth and honesty

It was a honour to read this book. I love the rawness of it. I've sat here all day and read this end to end. I've laughed, I've cried and I've been touched deeply.

[Carly-Jay]

Spoiler alert: she lives.

[Cass Moriarty]

I’m a firm believer that books often come into your hands at exactly the time you need them. Carly-Jay Metcalfe’s memoir Breath (UQP 2024) is hopeful, funny, exhilarant, optimistic and wise (what I need to read right now) although the content is raw and visceral, covering death, chronic illness, addiction and survivor’s guilt (some of which I am experiencing right now). It is a finely balanced scale of trauma and triumph, and everything in between. It is brutally honest, scathing, compassionate, insightful, authentic and at times extremely funny – the kind of gallows humour that chronically ill or dying people need to escape being chronically depressed and sad.

Metcalfe tears open her chest and invites the reader to examine the messiness of the human body, to reflect on what constitutes a good or worthwhile life, and to be grateful for every precious breath of air that continues to allow the blood to pulse through our veins. Memoirs written by people who have come close to death are tinged with a special perceptiveness that perhaps only occurs during those critical moments. Metcalfe has had a lifetime of such moments, growing up with the genetic disease cystic fibrosis (an illness that touches my own family). One delineating moment was when she was 21 years old: the before and after of receiving her double lung transplant, which itself introduced a host of other medical and ethical problems. She struggled with an opioid addiction and describes the highs and lows of this with courage and candour. And she shows the reader her life now, working with other people who are dying, a death doula, a kind of midwife for those who are coming to the end of their lives, some old and some way too young, some ready and some fighting to the end, some peaceful and content and some angry and frustrated.

Breath will obviously resonate with anyone suffering from a chronic illness, or living with someone who is dying. But it also has general appeal for the incredible insightfulness with which Metcalfe confronts difficult and uncomfortable topics, and the generosity of her knowledge, experience and variously held opinions about these issues. This is a book that will deepen your compassion, no matter what your life situation.

She also covers the practical and ethical complexities of organ donation: the life-long immunosuppressants required to cope, the idea of carrying around a vital piece of someone else in your own body, the trauma that led to that donor making an organ available, the terribly cruel circumstances and subsequent discussions that must have led that person’s family to decide to donate, the anxious wait on the donor list, the thrill of receiving a page on your beeper to advise you that a match has been found, the delirium of receiving healthy organs to replace your own diseased and non-functioning ones, the daily guilt versus thankfulness that an organ recipient feels towards their (probably) unknown donor. So many different aspects to this complicated area. Certainly this book has boosted my already positive response to organ donation and the magical difference it can make to the lives of ordinary people.

Perhaps most importantly of all, Breath invites a more open discussion around death and dying, the process and how we all deal with it. There were (interestingly) so many points or topics in this book that resonated with me. I was constantly messaging the author as I was reading, saying ‘that happened to me!’ or ‘that is what my family member suffered!’ and these strange synchronicities continued until the final pages, where Metcalfe discusses trying to establish a Brisbane chapter of Tender Funerals, which operates in the southern states. For the last 10 years or so, a group of dedicated and passionate people have been trying to start this in Queensland – a different kind of death experience, focussed on family-led and traditional processes rather than the cookie cutter mega funeral industry that most of us endure. My close friend who died of brain cancer less than six months ago had also been instrumental in this endeavour; just another coincidence (for me) in this warm and tender memoir.

Breath traverses rage, anger, frustration, love, tenderness, fragility, honesty, survival, death, humour, wit, grief, loss, guilt, addiction, hope, lust, the medical system, anxiety, friendship, family, sacrifice and hope. It is about what we would do for our children. What we might give to a stranger. How being chronically ill might challenge every view we have of ourselves but ultimately demand of us that we face the discomfiting but inevitable certainty that death will come to us all, and that the questions that should consume us are not how long do we live, but how well do we live, and how far kindness and optimism go towards the creation of a fulfilling and well-lived life, no matter our age or circumstances. A remarkable and very moving memoir.

[Jo Skinner]

Breathing is the most fundamental thing that links us to life. We can survive without food for around thirty days providing we are well nourished to begin with. Without water, we only survive for around three days but without breathing, we last around three minutes.

In her moving memoir, Breath, Carly takes us on a visceral journey through her lived experience of cystic fibrosis, a common genetic disorder characterised by faulty gene (CFTR -cystic fibrosis transmembrane conductance regulator) that affects the movement of salt and water in and out of cells. It is associated with recurrent infections and the production of thick, sticky mucus in the lungs and digestive system.

Despite straddling life and death throughout her childhood and early adult life, Carly’s irreverence and sense of humour make even the most difficult pages a joy to read. She is frank about her survivor’s guilt after experiencing the death of so many of her CF friends and talks openly about the impacts of being the recipient of a new set of lungs. Despite the horrors of invasive medical procedures, she embraces life and grits her teeth through adversities.

Carly crushes taboos about living with chronic illness and despite flirting with death through infection, rejection, invasive medical procedures and the diagnosis of a rare cancer, her life is fuller than most. She reminds us that, ‘I was born to live, and I was born to die,’ and invites us to repeat this fundamental truth out loud. It is the acceptance of this reality that is central to her ability to confront the possibility of death with such honesty and humour.

As a reader, we struggle to breathe with her as her diseased lungs falter in the hours before her double lung transplant and are then taken on a roller coaster of emotion through her love life, friendships and weight losses and gains as her sense of self is repeatedly challenged. Carly doesn’t shy away from the humiliation of clearing up her own shit, losing herself in a fog of narcotic oblivion and scrambling to understand the complex, messy human condition we call life. She is loud and proud and not frightened to discuss embarrassing topics.

It is impossible to read this book and remain unchanged. It will challenge you to embrace your own life with all its flaws, challenges and joys. To swear and laugh and dare yourself to live in the right now. To inhale deeply and appreciate every breath of air that fills your lungs, whatever difficulties you might face.

[Andrea Barton]

Right from page one, I was mesmerized by Carly-Jay Metcalfe’s memoir Breath. How anyone can survive a double lung transplant, cancer, and live to tell the tale with her sense of humour intact is nothing short of a miracle. Carly-Jay has done just that. She made me laugh, cry, think, nearly faint (!) and want to wrap her in a big hug. Her honesty, humour and warmth shine through all the way.
Being exposed to death and dying all her life has given her a unique perspective on death. Her thoughts about this are enlightening, and I hope this memoir stirs more public discussion about what constitutes a good death.
This isn’t an easy read, but it’s full of life and love alongside the trauma and I recommend it with all my heart.

[Julie Dunlop]

Carly-Jay I have no words. As a transplant nurse most of my 36 yr career ( Livers, kidneys and SPK’) and I only wish I had this book to read from the beginning.
You said everything and I will always remember and try and instil your experiences and thoughts into my practice in the future.
Every person working in a hospital or a hospice should read this and gain a greater understanding and respect for what a person goes through.
I am like your Dad every time I have a flu I imagine what it must be like to be properly sick!
Thank you thank you thank you for writing this very important, special and incredible book.
I could go on and on but that might become a book!!!!
Thanks to you for being brave and doing this.
Legend - hope you keep living happy.

[Dani Netherclift]

This beautiful, amazing book! I urge everyone to buy it, read it, stock it! I have turned down pages and have been recommending it all over the place. Carly-jay tells her life story as the glorious, grateful, carpe diem experience she has lived her life by. I laughed and cried at times on the same page. Although CJ had a double lung transplant in her youth because of her cystic fibrosis, has also had cancer and has nearly died a number of times, while so many her loved CF friends succumbed to the condition, Breath is a million miles from grim, it is funny, profound, poetic and I hope it will make you think about what it means to say you will donate your organs when you die. So much love for you and your book, CJ. I already carry the card in my wallet, and this makes me remember why.

[Jamie]

If there's one memoir you should read or add to your shelves this year, then make it this one. Brave, funny, heartbreaking and beautifully written, the story of her illness (CF) before the arrival of ground breaking medication is a rollicking tale (I read the book in a day). I mention this because there aren't any books that cover about sheer awfulness of CF with such honesty and humour.

It's amazing to read what the author has been through and how she's managed to thrive despite everything (and I mean everything) being thrown at her. The grit and resilience is next level and the stuff on death is earth shattering.

[Kyra Geddes]

Carly-Jay was born with cystic fibrosis (CF) and survived a double lung transplant at the age of the twenty-one, only to be hit with yet another life-threatening illness in the form of a cruel and rare cancer at age thirty. What she has gone through to simply to stay alive each day and take another breath is difficult for most of us to comprehend. And yet Carly invites us to share her journey with unflinching honesty, humour, humanity and a rare gift for writing, which left me wholly in awe of her strength and talent, and determined to carry a little piece of her courageous irrepressible spirit into my own life.

[Rebecca]

Reading this book is like sitting beside someone who has danced with death and comes back to tell the truth.

It’s not just a memoir about surviving cystic fibrosis or enduring a double lung transplant—it’s about what it means to live when every breath is hard-won...“Breath is the most precious thing we have, and yet we take it for granted every single day.” This reminder lands differently coming from someone whose life has depended on every inhale and how those inhales and self-identity change with new lungs.

What I appreciated most was how Metcalfe doesn’t shy away from the full weight of illness...“Illness doesn't just affect the lungs or the organs—it lives in your relationships, your dreams, your sense of self.” That complexity resonated deeply.

Breath is more than a personal story—it’s a gentle confrontation of how we, in the West, fear and avoid death. Through raw honesty and quiet wisdom, Metcalfe urges us to see death not as a failure or a horror to be hidden, but as something that can be embraced, met with presence, ritual, planning and even gratitude.

Her voice made me stop, breathe, and think differently about death, life and its inevitable end.

[A R]

Brilliant!! Literally ‘“Breathtaking”!!
I read this book in one sitting, it is so engrossing! Carly is a natural writer and storyteller. Her prose is lyric, her stories raw and honest. If you appreciate the human journey, in all its glory and messiness, then this book is for you!

[Mary D]

4.5. Rounded up because of a solid ending, providing valuable insight and understanding I didn’t have before and that can be applied to other situations and not just CF. It’s an easy read. There is the occasional C word, but only with in context. Well written. I’m glad I read this book.

[Hannah Sparke]

A painfully beautiful and important memoir. Thank you Carly-Jay.

[Barb Rose]

Find your purpose in life and how to live. Ponder questions about death and dying. A great read written by an inspirational lady.

[Reader]

Fucking fabulous.

[Michelle Upton]

Raw, honest and so beautifully written.

[Sue Gould]

2.5

[Sheila]

I can’t rate a book like this with stars. But it was worth reading.

[Ann Koenig]

Memoir of Carly-Jane’s life with cystic fibrosis - extraordinary story of grief and suffering.

[Lauren]

So glad I picked this one up.

[Porscia Lam]

An incredible story placed in the hands of a talented storyteller.

[Marleena Lopizzo]

3.75⭐