Type
Essay
Category
Dignity
Grief
Illness

The appointed season

She feels it close now, the appointed season
The invisible thread is broken as she flies;
Suddenly, without warning, without reason,
The guiding spark of instinct winks and dies.

– ‘The Death of the Bird’, A D Hope

 

When we arrive at the house, my parents aren’t yet home. We are here as a couple for the first time, Tris and me. Anticipation heavy upon my shoulders. 

The backdrop is a large Victorian weatherboard and a patch of lawn speckled with jonquils the colour of sunshine. There’s a touch of the absurd having him here, in this frame with me; a gentle reminder of how ludicrously incompatible we are. I’m 23 years old and a young 23 at that, still naïve enough to take comfort in a rigid worldview. Tris is two years older, and more seasoned, having lived through addiction, poverty, a life-threatening illness, half a lifetime under a Christian God, and another half-determinedly turned away from Him.

We tour the place in the natural order – front yard, house, backyard. But Tris has no interest in the natural order. He surveys the canvas of gum trees and a body of chlorinated water, smirks with the birth of an idea, then flings off his t-shirt, jeans, underwear. Strips himself to bare skin.

‘My parents will be home any minute,’ I scream in horror. He laughs at me as he races across the deck and sweeps his nakedness into a ball, dive-bombing into the pool. I stand by the water’s edge, thrilled and appalled. Intoxicated by him. Afterwards, streaming with water, he bounces on the trampoline in the far corner of the yard; his tall, nude frame sinking low into the mat above an enormous hole my father dutifully dug for us kids many summers ago.

In all the weeks and months and years that have passed since Tris chose to end his life, this image of him in my family’s backyard endures. The boyish leanness of his limbs, the unfettered swinging of his genitals as his feet pad across warm bricks, and the grin that says, ‘just try to contain me’. That wildness in his heart.

 

Tris didn’t do things by halves. Neither did his illness. By his early 20s, a severe case of ulcerative colitis had ravaged his body, leaving it an angry and inflamed version of its former. On the precipice between life and death, he’d lost more than 30 kilograms. A solitary photo from this time shows the devastation. He stands in a hospital room leaning on a walking stick, a bushy beard covering his jawline, his chest a rack of bones. He looks like a prisoner of war, captured in colour and sixty years late.

In 2000, in a life-saving medical procedure Tris was relieved of the diseased part of his body and was presented with a J-pouch, the small intestine formed into a J-shape to act as a ghoulish and imperfect replacement for the missing parts. While the J-pouch healed, he endured nine months living with an ileostomy, often referred to as a colostomy bag, or stoma. In that time, Tris had to contend with many terrible side-effects – humiliating leakages, painful irritation and infection, learning to accept that what should be inside is now out. The experience was not just physically uncomfortable; it tore at his soul. It was dehumanising. A monumental loss of dignity he learned to endure, but never to accept.

The only thing that made the experience bearable was the hope that the J-pouch would heal and ‘normal’ life would resume. The reality was that even without the bag, normality never returned. By the time we met in 2001, there were new companions, new burdens; fistulas, infections, digestive pain, and the constant threat of another stoma. He was forever scarred by the memory of that year. Throughout the five we were together and the following decade of friendship, he would often tell me ‘I can’t do it again, darl. I’d rather be dead.’

In the years after his death, in one of those strange twists of the universe, stories of people living with stomas would pop up in my social media feed. People who said things like, ‘I owe this bag my life’. Of course, a young person can enjoy a full and happy existence with a stoma. Of course, for most people life goes on. But for Tris, it was different. Perhaps because he had first experienced it as a young man, perhaps because he was sensitive and proud and vain, perhaps it was just him. It wasn’t the only thing he found unbearable. The endless tests and hospital stays, the weeks on end bedridden, the brusque manner of medical staff when he was raw with pain, and always the sense of being lost in a vast system, floating between wards and specialists and medical disciplines, never with the comfort of feeling wholly cared for.

It must be said that he wasn’t the best patient. Nurses sensed his barely-repressed rage the moment they entered his room. Some days he presented as rough and hardened and hard to help, his desperation masked by anger. He found solace in the doctors he felt did care; in scripts for Valium, Xanax and Oxycontin. Addiction was not new to him, but at this point he suddenly had access to a steady stream of legal and powerful narcotics, and new terrain opened up. One insurmountable mountain wedged against another.

There was also the reality of his maimed body. It seemed from the outside that Tris experienced his illness and the necessary medical interventions as a form of violence, and he carried the trauma of it. Science is only beginning to make sense of the connection between the brain and the gut, and the link between intestinal inflammation and mental health. But to those who loved Tris, it seemed clear that those elements, combined with Tris’ own complex personal history, formed a chequerboard of risk. He was plagued with depression and anxiety for much of his adult life.

 

It was not always easy being close to him. One week, we’d be awake until 3am discussing world affairs, ranting and raging and laughing and loving each other, wondering if others felt this alive. The next, a sadness like gravity would plant him on the couch, strumming melancholy notes endlessly on his guitar. Other times he’d be gone for days, lost to party drugs and booze; he would appear at the front door in the morning, his keys lost, vacant-eyed, stumbling and unable to say how he got home.

Tris loved unconditionally but had great contradictions: a serial monogamist scathing of monogamy; fiercely loyal, but not always kind; a lover of Springsteen and The Cure, Tolstoy and Bach, drawn every weekend to the footy. He could be abrasive one moment and tender the next, weeping at the sight of an elderly person shuffling along the street, and in the next breath breaking into a rage at a stranger’s minor transgression. His barrier to the world – the membrane most of us keep thickened and under constant surveillance – was porous. He pushed people away before they had a chance to reject him, but in trusted company he could be flamboyant, witty, utterly seductive. He was unmoldable, untameable, and yet he desired to be famous, a rock star adored by many; he strived for it with single-minded determination.

He questioned the world and the people who inhabited it in a way I had never seen; without affectation, with natural intuition and earnestness, yearning. His endless searching became my teacher, and I its eager student.

Breaking-up is often characterised by anger, vitriol, jealousy and pain. With Tris it was the opposite. We had been moving towards it for so long, we had been through all the ugliness – had fought and screamed and called each other names until there was nothing left to say but I love you and hold me. When the time came to separate we whispered the required words, wept for the chasm ahead of us, and pledged to stay friends. And so, we did. He continued to live in my tiny flat, sleeping on the couch and sharing meals with me. When he found a place of his own, we talked often. The weeks stretched into months and years. His daily dispatches covered the breadth of his life but most often centred on his aspiring music career and a young woman who had bewitched him.

In some ways our friendship became more important to me than our romance. I felt tied to Tris in a way I had never experienced with another human, and while I was relieved to have reclaimed my own ambitions, I liked having the anchor of him in my life.

 

It’s 2011, just weeks after Tris’ beloved little brother Sam died from cancer. I fly from Adelaide back to Melbourne to be near him. Tris has fallen into a coma after inhaling his own vomit. We don’t know if he will make it. His devoted mother and family, his ex-girlfriend and I spend hours in hospital corridors, waiting for our turn to sit with him. I read Anna Karenina aloud as the ventilator forces little puffs of air into his chest, uttering the words until they warp and weave and seep.

For 10 days, he floats between here and gone. There is talk of a tracheotomy, and more of how he would despise it. Ethical dilemmas are measured.

One day he wakes and he is going to be okay. Well, as much as he was before, which is to say not really.

After, when we talk on the phone, he is surprised to learn his friends and family rallied around him. He asks questions and tries to reconcile reality with the synaptic pulses that inform his memory of being strung up on the ceiling, attached to something resembling a giant spider’s web, looking down on his motionless body in the hospital bed. Machines alarming, the doctors and nurses coming and going, and the humdrum of the ICU ward carrying on without a glimpse of a familiar face. This memory of abandonment lasts what feels like days; utterly alone.

I tell him his memory could not be more wrong, if only he could have felt the love that surrounded him during that time, and he scoffs and says the hallucination of the spider’s web is his memory. He can’t simply click his fingers and replace it with a fairy tale. The naked boy in my backyard unshackled from worldly care feels very far away.

 

It’s 2015 now, April 23. I am in a work meeting, when a pain stabs me in the gut. Irrational fear spreads through me like a hot flush. I hesitate; I let the mundane utterances of my colleagues waft by as I try to regain control. Eventually, I can’t bear it. When I’m out the door, I call my son’s childcare centre. Next, my husband at work. They are fine. There is nothing to worry about. The fear dissipates nearly as rapidly as it arrived, and I move on with my day, crediting the experience to the panic of new motherhood.

The following evening, as I step out of a cinema onto a dark street, my phone rings. ‘Tris is gone,’ his mother tells me. I’m both shocked, and not at all surprised. In all the years I have known him, this was one of the rare months I was not worried for him. He’d seemed happier and lighter than usual.

He’d spent much of the preceding two years languishing in hospital beds, first with bowel obstructions, and then when all other options ran out, with surgery to construct a new stoma. The following year, he’d undergone another operation to rebuild it after constant complications. For more than two years, he had endured what he thought he could not. But he clung on to the hope that a second J-pouch could be constructed, even in its increasing unlikeliness.

Finally, a fortnight before he died, he met with his specialist. By all accounts, the doctor was kind and encouraging. ‘Maybe in eighteen months’, he had said. But something in Tris snapped. Perhaps reality had finally caught up with him; the prognosis was in his own former words, a death sentence.

The most private thing I can tell you about the most private man is this. Even though he was jaded and pessimistic and angry, he was hopeful in his own strange way. That boy in my parent’s backyard was hopeful above all else. Hope was his beacon. He could steer by it even when its light was faint.

All the world is draining from my eye.
It’s filling up and falling while I cry.
Fall asleep and wake me when it’s over.
Fall asleep and dream that I’m alive.

Lyrics by Tris, ‘I Know Why’, circa 2006

I once had rigid moral views: tragedies and wasted lives.

 

I ask myself all the questions. Did I try? Yes. Could I have done more? Maybe. Then someone’s voice whispers inside me, almost certainly. Would it have made the difference? Perhaps, perhaps not.

As the years unfurl, I miss him strangely more. My grief has morphed into something almost entirely selfish. I want to tell him things and ask him things. In the time of Covid and Trump and the stripping away of democracy, I wonder what outrageous views he would have on the state of the world.

And with every thought of him, I am reminded of the spectrum of grey that spans our black and white views. I think of how rarely we allow ourselves to imagine other people’s suffering, and especially what it is like to suffer a loss of dignity that can never be reclaimed. I think of how little room there is for people with complex illnesses to express their sadness, and how quickly we judge them when they do.

How should I feel about Tris’ choice? Should I protest? Cry out to the heavens and demand they give him back? Mutter under my breath what a waste?

Motherhood has added a layer of complexity. The constant pull of this purpose keeps me buoyant in a way that escaped me as a younger woman. And quite besides that, these days I find solace in ordinary experiences. The sun warming my cheeks on a bitterly cold day, dappled light falling between shadows, a child laughing until it hurts.

Perhaps I should have worked harder to persuade Tris of life’s beauty, should have forced him to see things my way. Screamed at him, ‘Can’t you feel the miracle of your own breath?’

But then, I am struck by the patent absurdity of this. How could I preach endurance to a man who endured his predicament for two decades?

No-one, including those burdened by his loss, ever had to actually experience his pain, his humiliation, his rage. His decision was informed by previous experiences, he was cognisant of the medical options available. He had been planning his death for some time. And in his final hours, after years of torment he moved past rage, and came to a place of deep and certain peace.

In the end, I hold one comfort: to love him is to let him go. Without question, or fury, or judgment. To respect his breaking point for what it was, an immoveable, impenetrable threshold unique to him.

 

 

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Chloe Adams is a Melbourne-based writer and journalist. She has been published widely by Fairfax and News Corp mastheads and previously worked at the Australian Broadcasting Corporation. She is the author of a chapter in the book of essays, The Future by Us, published by Hardie Grant in 2009, as well as the first journalism textbook written for East Timorese journalists and published in the official language of Tetum. She is a recipient of the ASA's 2019 Mentorship Program.

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