Editor’s note: This piece contains discussion of death, medical procedures and chronic illness.
Illustration: Rachel Ang
‘And who are you to think you could get through life without pain?’
——Winifred Holtby
August 1998
7am: Woke up and breathing by herself, but still with the ventilator.
8.20am: Saw her and she was distressed by the tube. Going to sedate her due to her distress and her trying to talk. No surprises there.
Later that afternoon: She wanted to talk and we finally understood what she was trying to say with the help of an alphabet board. She pointed out ‘Am I alive’?’, to which we all laughed and nodded, then she pointed out ‘I love you’. Her first words. Wow.
Twelve hours before my mother and sister scribble these words into one of my old university notebooks, I am dying. As I’m wheeled into theatre, every muscle and nerve is flailing on the outside of my body and it’s oddly alluring—it’s the most alive I’ve felt in months.
For what seems like the longest time, I’ve been a body in a bed, the timbre of my breath all thick and craggy. I hear the final infection coming—roaring like a diesel engine into my living corpse, my lungs filling with blood and mucous. Cystic fibrosis is an insidious disease. It is cruel and slow, where you sweat your skin off and get a grain of salt in return. While I want to let go of the world, the world wants me to stay. And so I do. Like an unarticulated vow, I stay.
On life support, my body resembles a human wishbone. On the fourth day I am awake and breathing on my own—in part, because I’m breathing with another person’s lungs. I am in such a stupor of pain that I am convinced someone has poured fuel all over my chest and drop a lit match; but when I look down, all I see are four tubes the size of garden hoses poking out just beneath my breasts. Later, I would allegorise that searing pain as the husk of my old body falling away; like a slipping of skins and that exquisite agony of being caught between being a girl and a woman.
But first, back to life. In the first week, I manage to impress people by lying awake in a bed. The first time I sit in a chair is a cause for celebration. My first walk is like a ticker tape parade. When I fart for the first time, my nurses cheer. The news of my first shit—brutal in its delivery—sweeps across the intensive care unit garnering nods of approval, wishes of ‘well done’ and fist pumping as though I’ve just won an Olympic medal. I should feel elated, but I am certain I’m going to die. Again.
While I want to let go of the world, the world wants me to stay. And so I do.
Seeing and feeling myself die is the strangest thing I’ve ever done, but the hardest thing is recovering from death. Death is what I’ve prepared for, but instead of bursting back into life I want to scarper into the wilderness like a mortally wounded animal. It feels like the world is pushing its way into my body without my permission.
And there’s the rub. I’ve come back too fast, like a spaceship breaking up on re-entry. I’ve gone from peace and stillness only to return to life with such violence. It is too much, and I break apart; my mind splinters off into the atmosphere and I am gone. It will take nearly two decades to return to myself.
*
When I was dying, my father smoked cigarettes like they were his tether back from his grief because he could not fix me. I hacked up blood clots as he sucked back nicotine, both of us wending our way out of the world, one faster than the other. In the year before the transplant, life had been tearing me apart faster than I could put it back together. Preparing for death while maintaining hope is no simple feat.
With a childhood steeped in grief, I was insulated by suffering while tragedy pummelled me into compliance. I always felt I was being punished, though I was never sure of the crime. For anyone without the full picture it must sound utterly Kafkaesque.
*
Over the years, a faint memory—of surgeons pushing through skin, muscle and fascia, then cutting through the strata of my chest until they strike bone—grows into something more tangible. I imagine a dull sound, much like hitting bedrock with a shovel. I still wake with my palm instinctively on my sternum. My scar stretches the breadth of my chest, rising in the middle as though reaching up in prayer. Though it might be pale, twelve years later I’m still pulling out little shoots of suture as they worm their way through my skin. What happens in our lives writes itself into our flesh. The body remembers.
*
August 2018
Just before the twenty-year anniversary of my transplant, I resolve to visit the cemetery where my donor is interred. On a Saturday morning in late August, I write in a card and pick some roses from my garden. Mum cuts some crucifix orchids and we make a little posy that I clutch for the ninety-minute drive. We arrive at the tiny cemetery just as a squall picks up and after a few minutes of walking around, my Dad gently calls out, ‘she’s over here.’
I had known there was a photo of my donor on her gravestone, but it’s still a shock to see her face. Up close, she is effortlessly radiant and seems to be all-knowing, a corona of light floating above her head. She exudes grace and there’s a tenderness behind her eyes.
What happens in our lives writes itself into our flesh. The body remembers.
It turns out we’re not the only ones paying our respects this weekend. A large white envelope is weighed down with rocks beneath her gravestone, like an invitation, and we wonder out loud who it could be from. After a few minutes I squat down, place my hands onto the stone and close my eyes while my parents stand not far away.
There is a sense of reverence and grace here. It is a place of pain, but it’s also a place of peace. Over and over again I whisper, ‘thank you.’ When I stand up and look across to my parents, Mum is crying and my father’s face is red. They offer their thanks and my father walks over to plant a kiss where my hands have been.
‘It’s all because of you,’ he says.
Not expecting this, I begin to cry. My father clears his throat, pulls his sunglasses down and walks away. He would probably give anything for a cigarette right now.
The following Saturday night, I have a party with my closest family and friends, many of whom were at the hospital the night of my surgery. After we’ve toasted my donor, my father does an impromptu speech where he breaks down recalling our visit to the cemetery. Later, I speak to some friends who were there as I was wheeled into theatre, howling because I was certain I’d never see my family, my friends or my lover again.
‘It was like listening to the end of the world,’ one says, the others nodding in agreement.
‘I’m so sorry,’ I say. ‘That would’ve been awful.’
*
The more time passes, the less I feel that I’ve done enough to honour my donor’s life. Have I made her proud? I feel a constant need to atone—like a permanent declaration of gratitude, a debt I can never repay. I know there is no logic in this, but I can’t help but feel complicit in her death.
When I was in hospital as a kid, the fluorescent lights seemed to hum above me as if they were alive. It was only at night that I felt like I could breathe. Being born with cystic fibrosis in the 1970s was a death sentence. My mum remembers when my first friend died; I was three and the curtains were drawn around her bed in a room full of other kids. Her parents walked out of the ward howling, and my mum saw her future.
It’s strange what I remember; the asymmetry of Meagan’s freckles, the angular features of Sean’s face, the curvature of Melinda’s spine, Ineka’s rackety breaths that would crackle through the night. People have told me I live in the past: If anything, the past lives in me and has grafted me to my future. I know I’ve been selfish, nearly killing myself with prescription drugs, and making deals with death I didn’t know about. Buckled with grief and guilt, my whole life has been spent pin-balling from trauma to trauma and death to death. I’ve often compared my disease to a series of small brutalities, but the trouble is that small brutalities add up, and I fear leaning too hard on other people.
The more time passes, the less I feel that I’ve done enough to honour my donor’s life. Have I made her proud?
Sometimes the only person I can trust to grab onto is myself. I’ve long been too heavy for others to carry, so I wrap one hand around my wrist like a tourniquet until I feel my pulse thrumming under my skin and I whisper, ‘you’re okay, you’re okay,’ like an invocation; as mantra, as prayer. I tell myself I’ll be okay as long as I survive this next disaster; this becomes something of a bargaining tool for when I can’t get through on silent will alone. I want to ask how other people deal with this type of trauma but then I remember that everyone I want to ask is dead.
*
No one spoke to me and my friends about death, even as trolley after trolley of dead friends rolled out of ‘the dying room’ behind hastily closed curtains, even as I was dying myself. I never once heard my doctors mention death growing up—such was the loaded nature of the word—and their silence made us feel all the more unnerved. It was only in the inky black of night that one of us would pipe up and ask, ‘I wonder who’s next?’ The blatant denial of death unfurled our curiosity, so while there was silence from the medical fraternity, it was second nature for us to talk about it.
Western culture does not ‘do’ death. Birth and death may be the bookends of life, but rarely do we speak about the latter until we’re in the full throat of it. I hate the militarisation, the euphemisms; I am affronted every time I read that someone ‘lost their battle’, when it was never a fair fight to begin with. I find it insulting to the person who has died. Death doesn’t scare me—it’s the dying that has always chilled my blood. The untrammelled pain, the possible need for terminal sedation, the loss of body autonomy and having the choice of ending my life surrounded by my loved ones completely wiped off the table.
When you grow up with a terminal illness, you’re never guaranteed a future, yet I always held hope close like a second skin. Making plans always gave me a sense of direction, even if the needle of the compass kept flying off course. But with the unrelenting threat of death, I was a financial mess.
I might only have a couple of good years, so I might as well buy those bright blue cowboy boots; I’m on borrowed time and need that fancy Italian easel. I never did paint but I did wear the boots.
I never once heard my doctors mention death growing up—such was the loaded nature of the word—and their silence made us feel all the more unnerved.
My spending hit fever pitch after my transplant. Awed that I could walk around a shopping centre without an oxygen tank or the fear of keeling over in front of strangers, I thought nothing of frittering my money away. I never expected to live into my twenties, let alone make it through my thirties and into my forties. But buying things I didn’t need was never going to fill a grief shaped hole, and it was a temporary salve until I bought the next thing. When I was addicted to drugs, my propensity to spend money was so blithe, mysterious parcels would arrive on my doorstep I had no recollection of buying.
*
2007
Nine years after my transplant, I’m diagnosed with cancer. After trying every non-invasive option, in November 2007 I undergo an eight-hour surgery to save my life. The physicality of disease has not shown itself this visibly since before my transplant. The cancer has colonised my sex organs and it’s palpable and visual; the colour of my vulva going from a blushing pink to a dove grey along with visible lumps and lesions growing at an unsettling rate; there are so many my oncologist could draw a dot-to-dot and create his own constellation had he been feeling artsy. The irony is that there is no irony; cancer is such a cliché. Sickness has a way of making people seem less banal, and there’s great romanticism attached to suffering. But for me, it was incredibly mundane.
The surgery nearly kills me and I end up in intensive care, the doctors unsure if I’m brain damaged from the massive seizures I’ve thrown. When I’m in the coma, my sister puts music buds in my ears. It’s said that hearing is the last sense to leave the body when you’re either dying or in a coma, but unlike when I was intubated after my transplant, I don’t remember any sound. She tenderly brushes my hair, matted from the violent shaking of rigours. Hers is one of the first faces I see and all I can think is, where are her four young boys?
After several days in a coma I wake up, this time not terrified of living, but of dying. I say to Mum, ‘this feels like another transplant,’ and the thought of going home with an ileostomy for three months repulses me. When cancer patients finish chemotherapy they get to ring a chemo bell—a highly emotional release heralding a person’s return to the world. There is no chemo bell for me, and after three weeks I leave the hospital with barely a whimper. No offers to debrief or suggestions for counselling. I might not have had my breasts lopped off, but I’m close to broken. I won’t return to myself for some time, and again, I’ll have to do it on my own.
*
There is no manual for being in such close company to death and people expect different emotional responses. As grateful as I am to be alive (again), it’s almost shocking to me that life has gone on. I tell my mother that I have an exit plan if the reversal of my ileostomy in three months’ time doesn’t go to plan and I end up with a permanent colostomy.
‘Well, I’m coming with you.’
I worry she isn’t joking.
Sickness has a way of making people seem less banal, and there’s great romanticism attached to suffering. But for me, it was incredibly mundane.
When I get home I’m reminded of the anxiety I felt after my transplant; as soon as I was well enough, I was going to finish my degree, do post-grad, learn Spanish, get a job, travel, relearn how to play my cello, fall in love. The burden of wanting to do everything and be everything to everyone sends me flying back into addiction.
I watched Meet Joe Black once. Death is nothing like that. There is no Brad Pitt. There is no New York City. There are no fireworks. There is no romance. There is no talking to death. There is no bargaining and there is no time to atone.
The thing about contrition is that there is seldom an endpoint to it. I did all manner of things to silence the racket of guilt—a ten day silent meditation retreat, learning how to chant in Tibetan, screaming into the night sky until my throat was raw in the hope that stars would fall and shatter me into stardust. There was even a small part of me that thought that if I could befriend death, I could beat it at its own game. I have come to realise that I’m really quite bad at dying; and while my aptitude for it isn’t great, it seems to me—and everyone around me—that I do well at living, and some days that has to be enough.
*
2017
I’m at my best friend’s fortieth birthday, talking to my friend Toby about how I never expected to be here for a celebration like this.
‘Mate,’ he says in his posh drawl, ‘do you think you’ve finally come around to the idea that you’re probably going to be here for a good while?’
No one’s ever asked me this before. My mouth opens as if ready to give him an answer, but no words come out. His green eyes bore into me and I eventually say, ‘I think so?’
‘You say that like it’s a question.’
‘I know. Well tonight, I say yes.’
Toby levels his glass with mine and we make a toast.
‘Tonight you say yes.’
