Real Life

Why Carly-Jay Metcalfe chose to plan her own funeral at just 21

Through a raft of terrifying health issues, Carly-Jay Metcalfe has remained upbeat, cheerful and bursting with humour. Here she explains why hope and faith are the only path forward.

Just after I turned 21, I planned my own funeral. Not because I was curious about what it might look like, but because I had to. End-stage cystic fibrosis (CF) had forced my hand into making choices I did not want to make, and my remaining hope for survival was in receiving a double lung transplant, the likelihood of which was growing slimmer by the day. Then, with just days to live, I got “the call”.

From a young age I became an expert in the art of adaptation. While being born with a life-limiting (and life-ending) illness may have coloured my life with an underbelly of darkness, I could always trust myself to grasp onto splinters of light in the inky mire of hopelessness. These were key to my survival, even more so when life was peeling away from me.

I was a happy kid – full of life, always singing, dancing, and trying to alchemise both my despair and the despair of others into something that looked like hope. Mum remembers me leaping onto the hospital dining table where, at the age of eight, I could command a room by belting out, “Life is a cabaret, old chum!”. I was deeply in love with my life despite grappling with adult concepts like pain, dying and death, and yet, at my core, I have always had an agnostic kernel of hope – and faith – that I might outlive my prognosis; that death might pass me by after realising I really wasn’t that interesting.

It wasn’t always easy to find hope amongst the dark detritus of my illness. But it didn’t stop me from trying. The Christmas before I went on the transplant list, I draped tinsel around my portable oxygen tank to give it a pop of colour. I refused to be held hostage by my illness, but rather than see an unsightly oxygen tank as something to be hidden, I turned it into an accessory. I may not have been able to dance on tabletops anymore, but at least this way I could be a 21-year-old out having fun with her friends.

Carly-Jay Metcalfe.
Carly-Jay Metcalfe says her family’s love has seen her through the darker days.

Knowing that death is imminent and maintaining hope is a delicate balance. When I first went on the transplant list, I was wracked by the terror of dying. But then something unexpected happened: In the days before my transplant, I befriended my dying. The past 21 years of the “fight” mentality had caught up with me; my mind and body were depleted from infections, invasive medical procedures, and being ripped out of life every time I got sick. Perhaps I was simply too tired to fight anymore.

But as I was shuttled into the operating theatre after saying goodbye to my loved ones, there was hope, too. A hope of not dying on the table, a hope of surviving, of waking up and saying, “Hello, I love you.”

Post-transplant, my recovery bore no resemblance to the ones I had heard about. I never experienced a singular joyous moment where I could breathe unencumbered, and rather than revelling in celebration, I had misgivings about whether I should have had the surgery at all. Having your chest cracked open and your sternum broken is no small feat, but knowing someone has died so that you might live is a mental skirmish that can be all-consuming.

I lost myself, and I didn’t know who I was or how to be in the world.

Carly-Jay Metcalfe with a doctor.
Carly-Jay Metcalfe was just days away from dying when she got “the call” about a donor.

Surviving one of the biggest surgeries a human body can endure left me untethered from life, and with each subsequent medical disaster, I’ve tried to braid myself into a state of hope. I’ve lived – am living – a rich and beautiful life, and there’s a wellspring of joy that comes from that. And when it is time to fall apart again, I am always reminded of my family’s all-affirming love. I’ve said before: “I get cut open, and my family stitches me back together.”

Transplant is the gift that offered me, and the people who love me, the hope of a future. In the psychological abyss of recovery, the physical pain was often beyond the bounds of what my mind could cope with. There were times I had no choice but to surrender to the agony. Ten days following my surgery, I found myself critically ill in Intensive Care, my body rejecting my donor lungs. I wasn’t getting better and I couldn’t pretend to feel elated at being alive; a recognition that plunged me into subterranean depths of guilt. And yet, while I cried with pain and despair every day I was in hospital, I also wept with gratitude. I was later told that I was lucky to survive such a severe bout of rejection. And I am. I am inordinately lucky.

Nearly a decade after my transplant, I was diagnosed with a rare form of gynaecological cancer. The surgery would be protracted and brutal, and to add insult to injury, I’d need a temporary ileostomy to redirect my bowel. Rather than casting a veil of silence over this diagnosis, I seized the moment and threw a pre-designer vagina party. I found my situation so absurd – perverse even – that all I could do was laugh, which might sound maniacal, but this is how I’ve lived my life. And I would need that black humour because five days post-surgery, I began having massive seizures and was rushed to the ICU in a coma. Scans revealed there was no brain damage, but I wouldn’t wake up until several days later and just like after my transplant, I would have to begin again.

There is no template for coming back from the dead, so it was up to me to find joy in each small moment. Simple things mean everything, like the love and devotion of my family and friends, music, reading, writing, my dog, laughter, spending time in nature, and the realisation that I am out in the world, gratefully alive. I never escaped the traumatic aftermath of my transplant, and I’ve never considered myself “healed”. My body has always felt like it was on loan, and the onus has been on me to de-pathologise the versions of myself I’ve been able to salvage.

Breath by Carly-Jay Metcalfe book cover.

When I was on the transplant list, I held onto a simple, yet colossal hope that I would be gifted a second chance at life. The most savage paradox is that I was effectively waiting for someone to die so that I might live. Though it makes no logical sense, I’ve always felt a punitive sense of guilt about my donor and their family. But it’s also been the most powerful exercise in gratitude and grace I could ever have hoped for.

After having over 60 friends die of CF, I do not know how or why I survived – just that I have, and that there is an unquantifiable level of gratitude that comes with this. For me, my survival comes down to a triumvirate of luck, compliance and having a world-class transplant team. This is why I am gratefully – perhaps even miraculously – still alive. As poet Emily Dickinson wrote, “Hope is the thing with feathers, that perches in the soul and sings … and never stops at all.” There is infinite power in hope, and I carry an ever-growing expanse of gratitude with me into each new day.

Breath by Carly-Jay Metcalfe is available to purchase now.

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