The Inside Voice

I’m sitting in an aged care facility. A good man I love – who shaped the good woman I love – is dying. We’ve been here for a few days now; Jim always liked to have plenty of time to spare when he was getting ready to travel places.

A writer who lost his wife to cancer described the last days of someone’s life as a time when “the barrier between … two worlds grows very thin.”

On this side of it, shoes squeak along the corridors. There is a woman who keeps pacing the halls. She looks younger than the other residents and well turned-out; she’d be mistaken for a staff member but for the fact she keeps repeating, “I can’t find my room. Please can you help me find my room?” She is led back to her room, only to return a few moments later – “I still can’t find it.” Another resident sits in the hallway and confidently directs proceedings. “You need to go straight, then right, then right again.” She regards me with suspicion from her orthopaedic throne. I’m on her turf. “Make sure you lock the door,” she tells a passing nurse, not shifting her gaze from me.

Further down the hall, some carers are playing cards with the residents. There are squeals of delight. Down yet another hall, a group is being led in a rendition of ABBA’s Money, Money, Money. A woman sitting in a wheelchair heads toward the sound, using her legs to propel herself around like a marathon runner. Step, roll, step, roll, step, roll. She’s fast and purposeful and seldom stops, always going in one hall and coming out another.

The bed whirrs every few moments to ease the pressure on Jim’s tired body. While nurses attend to things, we step out to make arrangements for When-It-Happens. I’ll ask someone to help with the sound system at the church. I think a caterer should do mixed sandwiches. I know a florist. We clear our calendars, cancelling meetings, forwarding work to other people to handle. Palliative planning. There’s nothing more to do.

A resident comes and stands next to us, the way you do when you try to join an established group at a cocktail party. We open up to his presence; perhaps he knows a florist, too. But, if he does, he’s keeping it to himself today. In the background, someone called Shirley announces that she isn’t talking to someone called Lorraine.

Back at Jim’s side, that Other World seems close. The barrier between here and there isn’t transparent; it’s more like the stained glass you see in churches than the clear stuff that normally fills a window. But even though you can’t quite see through, it’s true that the barrier’s so thin in places that you often feel something push against the other side. It brushes against your skin and gives you a sense of what’s there.

It seems to have the same properties of whatever element Love is made of. It makes your body feel too small for you. It makes you feel totally warm while giving you goose-bumps. It makes you look at things you’d otherwise overlook, and overlook things you’d otherwise fixate on.

Jim’s been non-responsive for days now. Yet still, every time a nurse approaches him she says his name. A cook comes in and kisses Jim’s head. “Thanks for being a good receiver of my produce,” she whispers to him. It’s an act of grace so pure that the thought of it makes me want to cry. A man at the end of his night shift pops in: “I heard that Jim taught at the University that I did my Master’s at. I just wanted to say goodbye.”

My wife asks me to go onto Spotify to find Suzanne Clachair. It takes a moment; she isn’t a household name. Her Wikipedia page is overgrown and neglected: “Almost a decade after winning Quest, a TV commercial feating [sic] Clachair sining [sic] ‘Barcarolle’ was the catalyst [sic] Clachair’s recording career.”

In any event, that recording career produced an album that Jim played over, and over, and over. He played it so many ‘overs’ that the only explanation for any family member ever wanting to hear it played again is Love. It was playing when they painted the study. It was playing when the newsreader announced another war in Afghanistan. It was playing when Jim was doing this, and doing that.

It’s been a while now since Jim did this-and-that. With his Parkinson’s disease, he kind of became like a photocopy of a photocopy of a photocopy of himself. The original details became more and more faint over time, though the form remained more or less the same.

His young granddaughter says she feels like she didn’t really get a chance to know him, so my wife traces back over the picture. He was a swimmer like you and he’d always take us down to the beach and he had a little brush in his car to get the sand off of our feet. He was super-organised but he’d get himself totally flustered if things didn’t go to plan, the way your dad sometimes does. He was whip smart and taught himself to speak Mandarin in the nineties using cassette tapes, and every year he’d read whatever German book he could lay his hands on – often some bodice ripper left behind by a tourist in one of the caravan parks we stayed at – so that he wouldn’t forget the words he learnt in high school. He did courageous things like protesting the Vietnam War and living in China back when tall ginger men were few and far between over there. And, as well as being serious, he was funny and fun and never too proud to order himself a Fluffy Koala milkshake at a cafe, or too shy to watch a bit of Buffy.

Through these stories, our kids have convinced themselves that they’d choose Da to be their partner if they ever went on that reality show The Amazing Race.

So, here’s to the next leg for this gentle, Sino-German speaking, ginger giant of a man. I don’t know what’s on the other side of the barrier that holds us all here but, when you press your face against it, Love takes on shapes you’ve never seen before.

And, if that’s the preview, then I reckon the next season’s bound to be bloody good.

The thing I dreaded most wasn’t telling him he had cancer; it was telling him that he was going to lose his hair.

Cancer’s meaningless to a seven-year-old. It doesn’t get in your eyes when you swim, or get sweaty when you run, or messy when you sleep.

As a kid, there was so much he still didn’t know. What he did know is that he had blue eyes, a September birthday, a best mate called Beau, and a head of brown hair.

His lashes were the first to go. They’d fall into his eyes or land at the end of his freckled nose. Initially, instinctively, we’d hold them between our fingers to make a wish. It wasn’t long before that ritual felt too cruel and futile to observe.

The rest of his hair followed soon enough. It mostly rubbed off while he slept. We started using dark pillowcases so that he wouldn’t notice. Eventually, he did.

So, he started wearing The Cap.

He added something, so that he wouldn’t be defined by what he had lost. Instead of being The Kid without The Hair, he became The Kid with The Cap.

He’s a year into his remission now.

His hair has grown back.

And he still constantly wears The Cap.

Only now he doesn’t use it to hide his cancer. Instead, I think he uses it remind us of it.

What he now knows about himself is that he has blue eyes, a September birthday, a best mate called Beau, a head of brown hair … and he had cancer.

It’s why he’s scarred from one side of his tummy to the other. It’s why he missed so much school and still doesn’t quite understand fractions, and sometimes cheats in tests. It’s why he’s shorter than lots of his mates, a bit worse at soccer and a bit slower in races. It’s why he cries uncontrollably when he gets needles. It’s why he has such big reactions when things don’t go his way. “My Nintendo is broken, I came fifth in the race and I had cancer. My life is not fair!”

For him, being The Kid without The Cap is an affront to his suffering and sacrifice. In not wearing the hat, he would be hiding the most difficult year of his young life from public view. People might forget. He’s not ready for that.   

He’s not ready to be gas lit. He’s not ready to be convinced that the world is normal. He’s not ready to be told that all is well and that he looks great without it.

In that little cap, he’s carrying all his fear and courage, his pain and healing, his uncertainty about all that was and all that might be.

In that little cap, he’s asking us just to “forget not yet”.

Forget not yet the great assays,

The cruel wrong, the scornful ways;

The painful patience in denays,

Forget not yet.

– Thomas Wyatt

Quick recap: The Bell rang, The Enemy was vanquished, we would all live happily ever after in 2020.

Present-day: I walk around, elbows in, assiduously avoiding touch, using previously redundant parts of my middle-aging body to open doors like an osteoarthritic Nadia Comăneci.  I view everyone as a “bipedal distributor of infectious agents”.  Yesterday someone kissed me on the cheek and I promptly performed a crude chemical skin peel using a hospital-grade bathroom cleaning wipe.

In light of this, my wife and I have decided to keep our kids at home while still trying to work.  The schools haven’t shut down but our attitude to risk has changed.  After your kid gets a 1 in 10,000 cancer, the phrase ‘low risk’ becomes akin to other meaningless concepts like ‘looking forward to the new year’ and ‘vegan cheese’.

It is Day Two of the homeschooling experiment.  What I lack in pedagogy, I make up for in chalk.  Think John-Nash-hosting-a-kids’-show-called-A-Beautiful-Minder quantities of chalk.  Sidewalks and pavers, driveways and walls record my attempts at ‘lessons’.

The theme for today is ‘cycles’.  We talk about the water cycle and the breathing cycle.  I draw circles of things, leading to things, leading to other things, leading back to the first thing.

I think it is clear to them that I actually don’t know what I’m doing and that they are leaderless and in peril, chalk notwithstanding. Today, they used the contents of my shed to create a post-apocalyptic settlement on our back lawn, like a scene from Mad Max.  Empty boxes, pipes, camp chairs, rocks, rugs, a Peppa Pig phone, pretend tins for food.  The clear implication of their shantytown is that Chalk Man cannot help them.

At 2.35pm with 15 minutes left of my ‘shift’, I decide to teach my eight-year-old to Google a question.  As I do so, I worry that everything else I try to do from this point forward will seem redundant to him.

Education sorted, I show him that funny little YouTube clip of those nice children being tackled to the ground while their father gives an interview to the BBC about South Korea.  Then, totally unrelated, I announce that I’m about to dial into a video conference.

Point taken, he goes to the lounge room to watch Netflix and I spend the next forty-five minutes not hearing most of what the other participants in the call are saying because my bandwidth is straining under the pressure.  By the end, I think I’ve agreed to do something but I have no idea what.

Taking a lesson from my own book, I think to ask, “Hey Google, when the fuck will this end?”

“I don’t know how to respond to that”, comes the reply.

Me either.  But I reckon we’ll get through it.

In the hospital, there’s a Bell. It’s a thing so sacred I’ve only heard it ring a couple of times. The sound cuts through the din of I.V. fluid dispensers, nurses’ shoes on vinyl floors, chemo pumps and children’s television. Its peal is resonant with relief and pain, science and prayer, hard work and dumb luck.

The Bell rings when a child finishes their cancer treatment. And, soon, it will be my kid’s turn.

For this, he’s waited and wished and begged for nine months – the same time it took my wife to make him. Nine months to create a life, nine months to restore it.

We’ve started to talk about it – his Bell Day. Mostly it’s about the sports he’ll be able to start playing again or the kind of party we’ll throw. But this time it’s deeper. This will sound weird, he confides, but I’m a bit scared about chemo finishing.

It doesn’t sound weird at all. I know exactly what he means.

Make no mistake; this side of the Bell is a hellish place, filled with grief and pain and panic.

But, it’s a kind of utopia too.

Here, trivial things don’t matter. You have license to say forbidden things like, fuck it, it’s only work and sorry, this isn’t the right time.

People are forgiving of your mistakes, mindful of your struggles and conscious of your priorities. Disapproval, judgment, anger, impatience all wither in response to my kid has cancer. In their place, love metastasises.

It’s a blueprint for a better world.

Just as church bells once served to call a community together, this Bell ought to remind us to be kind and patient, forgiving and empathetic. To relax arbitrary rules. To give things away for free. To feed our friends and to ask people how they are doing and what they they need.

Our new Golden Rule for life is this: treat everyone like they might have a kid with cancer.

May the message reverberate well after the clapper has hit the cup.

My kid’s a superhero. He’s different from the rest, though. He doesn’t wear a showy costume with a big letter on the front. Instead, there’s a Big C inside of him.

The Big C is part of his origin story, like the spider that bit Peter Parker. The mutation started in his left kidney and then spread a little further. But, rather than giving him super-strength, it’s made his physical form weak and vulnerable.

Cancerboy doesn’t have any super powers at all (he barely has an immune system). He’s more like Batman, getting help from a league of sidekicks who possess different skills – O.T. Woman, Doc Onc, Pharma-boy.

His mum and I are in there too. We weren’t always his sidekicks, though. We used to be his superheroes. If he was hungry, we’d magic him a meal. If he had a question, we could often answer it with certainty. If he was sick, we’d bring him back to health within a few days.

The disease changed all this.

Now Cancerboy is never hungry – all his food tastes like metal.

His questions don’t lend themselves to “Yes” or “No” answers – there’s a lot more I-don’t-knows and let’s-wait-and-sees.

And, worst of all, there isn’t a fast acting antidote to give him. Rather, there’s a long regimen of treatments which have the cruel effect of making him better by making him worse. They pump in chemicals through a central venous catheter implanted in his chest which they hold from the outside and then push a needle into. Cancerboy hates this. He screams, yells, resists, pleads.

He’s angry with his mum and me for not being who he thought we were. We can’t fix this one for him, and he can’t understand why. He looks at us and shouts things like “Do something!” and “Make it stop!” and “Why can’t you help?!”

There’s no malice. He just feels forsaken.

In these moments, the psych suggests to treat him like a loveable drunk friend. “Come along, mate. I’ve got you. You’re alright. You don’t really mean that. Let’s get some rest and talk about it in the morning, bud.” You show patience, love, get him home, encourage him to drink lots of water, and help him sleep it off.

But, of course, this isn’t enough.

In the end, the kid is left with no option but to rely on his own resources to get through it.

He tries psyching himself up by listening to a playlist. He tries calming himself down by breathing. He tries positive self-talk: “You’ve got this. You can do it. This will make you better.” He tries self-pity: “I hate my life. This is too much for a kid.”

Whatever he does, he cries. He cries big and loud.

We’re not used to seeing our superheroes this way. The heroes in our dimension are stoic and still. They tend to meet their challenges nobly, eagerly, uncomplainingly.

But, the fact is, heroes walk in other dimensions too. Courage doesn’t have to be fast or beautiful or selfless or instinctive or transcendental.

Sometimes courage is just about facing your destiny and showing up again and again, each time being open enough to let it unfold in all its messy, frightened, complicated ugliness.

In the beginning, there was darkness.

It was midnight. The lights in the emergency room were dimmed. The scans were showing a shadowy “mass” inside the boy, our baby.

The “mass” was hard. The “mass” was big. The “mass” had caused his kidney to cleave in two.

It inspired dread, but allowed for hope. As long as the “mass” lacked a proper name, we could try to explain it away – make it trivial, innocuous.

But, eventually, we felt compelled to meet this stranger. We needed to see its face, and size it up. So, we asked the question. We asked it hesitantly, knowing the answer, but hoping hard for something else.

“Could it be cancer?”

“I think probably,” came the response. “We’ll know more tomorrow.”

That night, we pictured the cancer spreading through our baby’s body like ink diffusing in water. Entropic. Irreversible. We walked ourselves to the abyss of Life Minus One, we stared into it, and we grieved.

The sun rose.

Through pricks and probes, the adversary took shape. The Thing That Could Not Be Named revealed itself to be intimidating, but not indomitable.

Of course, the kid never doubted this. He had the sort of wisdom that comes from knowing less. He didn’t think about mortality, or treatment outcomes. He experienced the world as a series of moments. Catheter, bad. Gift, good. Cannula, annoying. Lump, inconvenient. Life, ongoing.

This was how we wanted it to be. Our job was to scan the horizon and navigate the safest route. His job was to look down at the path and focus on the next step. We hid our fear and our uncertainty deep inside us, where it could not distract him and cause him to stumble.

We hid our fear as he slipped into the darkness of the ether-induced slumber. And we hid our fear as he awoke with a wound that started on one side of him, and almost finished on the other. A life in two halves.

For the poet Rumi, “the wound is the place where the light enters you”.

For our little family, the light came from all directions. The darkness exploded into a galaxy of beauty and love and insight.

Some of the lights were close and familiar – dear acts from dear people. A prayer said. A text sent. An errand run. A garden watered. A pet housed. A gift chosen. A kitchen cleaned. A coffee delivered. An ear offered. A meal cooked. A chemo hat purchased.

Other lights were entirely new. Casual acquaintances volunteering to babysit. Parents of friends organising prayer circles hundreds of kilometres away. A new colleague offering a casserole and a personal loan.

In the hospital, strangers bathed our son, and checked on his pain, and tended to his wounds, and fed us, and spoke words of comfort and wisdom, and made him laugh.

It is easy to forget that we are surrounded by light. We close our eyes to avoid being distracted. We have jobs to do. Bills to pay. Places to be. Things to do. Judgments to make. Egos to protect. Mistakes to avoid.

But, the lights are always there. They’re just more obvious in the darkness.

The siren rings. They are free.

I ask them how their day at school went but they can’t remember.

The youngest is clutching a drawing of a seascape. I spot a chance to connect.

“What’s this?” I ask.

“That’s you being smashed by a wave,” comes the reply.

“Oh. And what’s that you’ve drawn on the sand?”

“A toaster.”

We get into the car. The radio is on and a news story starts before I can turn it down. Shit.

A troubled little voice emerges from the back seat: “Did they just say someone died?”

I say what I always say in these situations, which is “no, no. I’m pretty sure they said dived.” He accepts this, and I wonder what he makes of this world of people making regular, headline-grabbing entries into the water.

We get home. They cast off their shoes which, at this age, are really just receptacles for a metric tonne of playground sand. I empty the shoes’ contents into a pile which I will soon use to lay the foundations for a new patio.

They are suddenly Ravenous. Like “I’m-On-The-5:2-Diet-And-Your-Face-Looks-Delicious” Ravenous. I hurl the contents of the pantry at the advancing horde to save myself. Muesli bars, fruit leathers, crackers, a jar of pasta sauce, 400 grams of coconut cream, a kilo of flour…it all disappears.

Bellies full and fingers sticky, they are recharged. We spend time playing games that are mostly rigged against me. “I spy with my little eye something I saw two days ago” games. “You be paper and I’ll be scissors” games.

There’s laughter and protest, regularly punctuated by the Younger One farting proudly. Then, all of a sudden, I notice urgency in his eyes. I know what this means.

I airlift him to the toilet and pull down his pants. It is too late. I watch helplessly as a sausage of a poo emerges and lands inside his pants. I realise that I’ve never witnessed a defecation at its source, until this moment. If anything can be criticised for being too organic, it is this.

I try in vain to extract his legs without disturbing the fresh deposit. I fail. He emerges from the toilet naked from the waist down.

As we frogmarch toward the bath, we are greeted by our new puppy who starts snapping at my son’s penis, presumably mistaking it for a chew toy. There are screams, tears, barks, growls.

After a bath that is abruptly ended because someone wees in it, I am back in the kitchen playing the part of short order cook for a capricious dictatorial regime.

“I said I wanted egg without the egg on it,” shouts one.

“Is this chicken chicken, or meat chicken?” asks the other suspiciously. Not knowing the right answer, I respond with an ambiguous “yes” and hope for the best.

We read a bedtime story, although the term ‘story’ lost its meaning two years ago. Instead of Lewis, Rowling and Dahl, I recite vital stats from a Pokémon handbook.

“Arbok. Weight: 65.0kg. Height: 3.5m. Type: Poison. Abilities: Intimidate; Shed skin.”

The lights go out. The calls to the Night Desk begin.

“Water, please!”

“Have you seen my torch?”

“I’m still hungry.”

Soon, there’s silence. And in that silence, I think of them and this blessed life of messy-cheating-smelly-sobbing-impatient-happy-beautiful chaos.

They wake us before it’s light, clambering into the bed. Their warm, little bodies wriggle next to ours, stealing blankets and inflicting physical pain – an elbow to the ribs, a knee to the pelvis.

In the darkness I fumble for our phones and hand them over, like we’re the victims of a mugging. The little thugs take them, temporarily sated, and I relax into the reprieve.

It is short lived. “The phone died-ed,” says one. I smile at the endearing repetition of the verb tense, but quickly see that it is accompanied by a look firmly implying I could be the next “deaded” casualty.

I’m taken hostage to the couch. The TV goes on. They watch. Eventually, they become hungry.

I jam slices of bread into a toaster with just two settings – (1) Bloody Useless or (2) The Colour That Comes After Black. I’ve burnt so many pieces of bread that only the end crust bits of the loaf are left. I still have lunches to make. Fuck.

I write out a canteen order and begin the desperate scramble for $4.10 in change. I mutter a silent curse to the cash economy as I stick my hand behind car seats and couch cushions, finding half masticated sultanas but no coins. My eye catches a glimpse of their piggy bank, filled with the profits from missing milk teeth. I raid it remorselessly.

As we are due to leave the house, we take a moment to observe the Holy Feast of Lost Things. Today’s absent friends are a right shoe, a library book, a left shoe, any pair of remotely matching socks, an extremely-small-extremely-important toy they’ve never shown an interest in before this moment, my keys, the other kid’s right shoe, the other kid’s left shoe and, briefly, the other kid …

I begin to recite the Litany of Threats. “If you don’t get in the car now, there’s no TV/treat/play date/phone/ice cream …”. I work backwards through Maslow’s hierarchy of needs to no effect, stopping just short of essentials like water, warmth, protection, the right to housing. I need to leave something in the arsenal, I think to myself.

The children emerge from the house, sobbing. One refuses to get into his car seat and starts planking while I try a series of origami folds to make him fit.

In the car, I realise I’ve forgotten to pack their drink bottles. I reach into the back seat and find some forgotten, half-empty vessels. I do a mental calculation of the risk of the kids contracting cholera, consider it to be “moderate”, and shove the bottles into their school bags.

Pantry moths fly around the car. They feed off the crumbs from after-school snacks and have decided that the supply is sufficiently reliable to make this a good nesting place. Each day there’s more of them. Today it’s a plague of locusts. The kids have taken to calling them their “moff friends” and weep as one escapes through an open window. There’ll be more, I reassure them confidently.

We pull into the school and all the parking spaces are gone, except for the “Kiss and Ride” ones. I consider parking there, but know it is likely that a photo of my car will be posted onto the parents’ Facebook group and my tyres will be slashed when I return.

I park down the hill, instead. The Younger One doesn’t want to walk today so I make like a Sherpa and commence the ascent. By the time I reach the summit my shirt is drenched with sweat.

The siren sounds. I’m free.

But, like so many hostages, I miss my captors.

There’s this Thing that I live with.  

I can’t remember when we met. We were both younger; old acquaintances.  Yet it’s not true to say that we grew up together.  The Thing‘s a bit of a shape shifter, really. Sometimes it’s bigger than me.  Other times it shrinks to nothing.  

When it’s small, The Thing feels distant; a theoretical possibility, like TB or terrorism. It lurks in the background as a shadow, making me alert but not alarmed. 

But when it’s big, The Thing is wild and mean. It eats everything and tastes nothing. It locks me inside, and tells my friends I’m not home. It wakes me up at night. It drags me down in the day. It makes me go places late and leave early. 

The Thing reminds me of every time I’ve misspoken, failed, and not been enough. It curates my memories and packages them as a “Worst Of” compilation which it plays on repeat. Track 1 is Pain. Track 2 is Embarrassment. Track 3 is Guilt. Track 4 is Rejection. Track 5 is Sloth. Track 6 is Hubris. And on it goes. 

In those times, The Thing feels impossible to tame. It doesn’t listen to reason. It isn’t soothed by kind words or promises.  It won’t go for for walks, or be tricked by distractions. 

I can’t always guess what will make it big.  It feasts on different things. Some are old staples – mistakes, grief, disappointment. Other meals are unexpected delicacies – a passive aggressive email, an awkward dinner party conversation, a careless remark, a look, a tone. 

I try to starve The Thing of opportunities to grow.  I stay on well-worn paths. I keep my head down. I make myself unthreatening, invisible. 

But, in the end, I realise The Thing is starving me.

The trick to outfoxing The Thing is as frightening as it is freeing. You beat The Thing when you make yourself most vulnerable to it. You run towards it – into the unknown – wincing and waiting for the blow, the bite, the drop. 

You say ‘yes’. You send emails, call friends, introduce yourself to strangers. You try things you might not be able to do. You plan. You create. You write. You tweet. You RSVP. You make. You do. You hope. You ask for help. You allow yourself to dream of more. You trust you can fail, and still have worth. 

You make yourself bigger and stronger so that however big The Thing makes itself, you feel safe in the knowledge that you are always bigger. 

Because you are, my dear. You are. 

So, run on.