by Jodie Moffat
CF was beginning to symbolise all the technologically driven developments of the twentieth century generally. Starbursts of brilliance in a lab somewhere, slowly making their way to the ordinariness of a hospital ward.
There were other changes. Clever antibiotics used much more cleverly. A realisation that kids spending time together in hospital, and sending kids away on jolly CF camps, actually meant they were sharing a whole lot of nasty pathogens – that a separation of bacterial powers was needed to slow down cross-infection rates.
I was starting to survive. I seemed to just gently bump my head against the life expectancy average, and as I grew, so did it. Just lucky at birth I guess.
When we were fifteen, Rebecca and I made a pact to make it to twenty-one. It didn’t seem that far away, but the years for her were all just wrong, in the way that they were going right for me.
Rebecca needed and wanted a new-on-the-scene transplant. Her family threw her a jubilant ‘six stone party’ when she finally managed to put on enough weight for the doctors to begin to consider her for the transplant list. That’s thirty-eight kilos.
Six men raised Rebecca up in her coffin. In the flicker of an eye, or maybe just of my eye, it looked like they overestimated the weight and had to lower her back down to their shoulders.
I loved a funeral, enjoyed the ecstatic grandness of the church, the cool and the dark, but not the tinyness of that coffin. I thought about crying, but with my mother next to me, that would be too embarrassing for both of us.
Despite the technological leaps, there was still no way of knowing who would be on what side of the line. You still couldn’t pick it for sure. This isn’t a ‘how long have I got doc?’ disease. The trajectory has never been that fixed, which is why a good doctor will appear distantly vague if asked.
There’s no success or failure, no winning or losing, no battle. It was a day-by-day constant, unlucky–lucky thing. For this group of kids, it just was. Until it wasn’t.
Until what? Until progressive lung infection with more and more acute exacerbations mean that death eventually crowds out life. Infection. Phlegm, mucus, fluid. It’s not a cliché to say dying from CF is like drowning. It is drowning.
There is serious work involved in living even a single day with CF. The daily upkeep to keep the lungs clear and the body with enough energy to fight infection: hours and hours of physiotherapy and airway clearance, exercise, nebulisers, puffers, enzymes, antibiotics, mucolytics, high-energy diet, and the burden grows greater the sicker you get. Sometimes five hours treatment for three hours reprieve. Just to set you up for the next day. The tide goes out, it washes in again.
Life and death is imprinted on daily life. This is what makes CF so interesting. You really have to want to live to do all that. If you are talking to someone with CF, you know that they want to be there talking with you. They have worked bloody hard to be there.
‘It just must become like brushing your teeth,’ people say. No, it never does. The daily regime is a life-affirming, life-wanting act that teeth brushing can only aspire to.
Someone with CF could give it all up, just relax and let it slide, but I’ve never even heard of that happening. Five hours work a day for a little more living? Ten hours? Sure. Life gets addictive.
CF can give you the rock-star, ‘die young, look good in your coffin’ blasé attitude for a while, but if you make it past that, what it eventually makes you is extra careful. With all that time and effort invested, risk-taking just starts to look ridiculous. It would be such a waste of all that time and effort to then go and get hit by the proverbial bus (which could still happen, so I’m very careful crossing roads).
I kept surviving. For a while there in my thirties, I enjoyed pointing out the obvious: ‘Well, it looks like I’m going to live.’ My cousin Jason was furious because he thought he’d missed some family pronouncement about my ever-impending death – yet again – and stamped his feet: ‘No-one tells me anything.’ I agreed utterly. No-one told me either. If I’d known I was going to live, what would I have done differently? I can torture myself for hours with that one.
Although I was medically treated the same, it turns out that I was probably just not as sick as those sick kids in the first place. They didn’t know then that different genetic mutations for CF give people a range of different outcomes, that for some, CF can be just annoying. I was somewhere in between, stumbling about ‘in the kingdom of the well and in the kingdom of the sick’.1
Turning forty coincided with a medical pronouncement that I could expect to live for years yet. At twenty-two I’d already felt the sting of old age, and I couldn’t put my finger on the strange, anticlimactic portent I felt at this news. ‘I know,’ said my friend Monique, triumphantly. ‘It’s disappointment. You’re disappointed you’re not dying anymore … Now you have to share death with the rest of us.’
She was right. I’d always thought I would be good at dying. I knew what it looked like. What it would look like on me. Now I’m too late to do it young and I’m too old to do it looking like a beautiful angel.
Yes, now I’m old. Really old – over forty. In CF dog years that’s about 106. And I’m as surprised as anyone – as any old person will tell you – it really did sneak up on me.
I find myself staring at people on a crowded beach thinking about young people. Doing absolutely nothing while waiting for an appointment, and not minding. I nearly fell asleep on the CT scan table because it was so comfortable. The world shrinks when you get old, and thank goodness for that, I say. Imagine the feeling of missing out, otherwise. Or the intensity of noise, and colour, and action.
After the trauma, heartbreak, drama and grief that you collect just by living this long, you understand that boredom is a treat to be savoured.
The small wonders still live large, and CF taught me those are the best ones. When I giggle with my son, it’s heaven. Sitting up together in bed reading. A homegrown apricot eaten with the sun on my face really is the most joyous thing in the world. Look at that leaf, and see those snails climbing up the flower stalk while it’s bending dangerously back to the ground. I wonder if they know they’re doing that. Is it intentional?
I get complacent like anyone. It’s hard to hold onto a feeling of aliveness all the time. I’m glad for a good kick in the grateful now and again. Getting changed into a gown ready for a recent bone density scan, I was babbling. I wish I could lose just that last tricky five kilos, and ha-ha measure me but no, I haven’t grown much taller lately. The lovely white-haired radiographer told me her niece had CF too. ‘Isn’t it great how things have changed so much in CF?’ I say. ‘No,’ she responds. ‘She’s sixteen. This one won’t make old bones.’
I can’t believe how young the doctors are, and they don’t even seem to realise that this was a child-killer disease so recently.
Death is much better hidden behind the sheer bulk of medical technology now, but she’s there, in the corner. I try to keep hold of the almost exquisite, enlivening feeling when you hold hands with death, the surest companion you’ll ever have.
Notes
1 Susan Sontag, Illness as Metaphor. New York: Farrar, Straus and Giroux, 1978, p.3.
A case for forgiveness — Goldie Goldbloom
On April 3rd, 2014, after not speaking to my father for over forty years, I call him. The telephone call is the culmination of a long process that began when I signed up for my first writing class in 2008. I live in Chicago. My father lives in Brisbane, Australia. I mess up the time difference. He is woken from his sleep at five in the morning. I can hear him floundering around, sneezing, blowing his nose. ‘Who’s that?’ he asks. He sounds exactly the same as he does in my imagination. Angry.
‘Goldie,’ I say.
There is a long silence.
‘Clairsie,’ I say then, giving him my English name, the one he’d used for me in the 70s, just in case he didn’t recognise my voice. The name I don’t connect with myself anymore.
He begins to cry.
He cries for four minutes and thirty-seven seconds and then hangs up. I know that because my phone keeps a record of the length of the call.
I’m old now. I like being old because things that used to be sharp and painful have become blurry and soft. After forty years of his absence from my life, I’ve forgotten what my father looks like. I’ve lost the single photograph I had of him, a panoramic black and white snapshot from the 50s, a group of youths in leather jackets and white t-shirts and heavy boots on a train platform. Tattooed and grimacing, they are grouped around my father, their leader. His gang looks cool and dangerous, the first unofficial Hell’s Angels gang in Albany, Western Australia; the Albany Angels. I have nothing to point to and say, yes, that’s my dad. Each time I call my father, I hold the phone out to my children and put it on speaker for a few moments so they can hear his voice. It’s all I have to give them.
I can’t remember the simplest detail of his face, the colour of his eyes, the curl of his hair. I think it’s his hands I remember when I picture thick fingers, freckled, sandy hair across the knuckles, heavily scarred by sea urchins, stonefish, cobblers, rays, jarrah floorboards, engine grease, fibreglass, knives. But they might be my grandfather’s hands or my brother’s. They might be a stranger’s.
I try calling my dad a second time, a month after my first effort. I call later in the day when he has already been awake for a few hours, when he is out in his garage, tinkering with an engine.
‘Who the bloody hell is this?’ he asks.
‘It’s me, Dad,’ I say. ‘Goldie.’
Again the intake of breath. Again the catch in his throat. Again the long silence. But now he says, ‘How are you, love?’
And that word, love, hangs in the echoing air between us, so very wrong, and yet somehow, so inexplicably right that I struggle for breath.
What do you say, after forty years, when you are asked how you are?
I’m good, Dad. On a lot of days, I’m good, but there’s been some really terrible times too. Oh, and by the way, I know it’s going to be a bit of a surprise, but you’re a great-grandfather. I have eight children and the oldest is twenty-seven. The youngest is fourteen, two years older than I was when I stopped talking to you.
I’m fat now, a grandmother with a bun and no bra. I keep chickens. I teach writing at an Ivy League university. I am a novelist. My work is published around the world. I drive a tiny green Fiat and grow my own vegetables. I speak fluent Italian and Yiddish and Hebrew. Those Jewish languages will probably be a surprise to you. I’m a Chassidic Jew. Don’t blame yourself for my conversion.
I don’t say any of this.
After my father asks how I am, I am silent. I don’t know how to compress forty years into a few sentences.
‘Are you there?’ he shouts. ‘Fucking phone!’
A chain rattles, the sound familiar to me from weekends spent watching my father and brother take apart motors. He’s quickly lowering the engine block into the carapace of a truck. A wrench hits a steel table. I wait for the sound of him chugging a bottle of beer. I let him bash the screen of his phone with his blunt fingers a couple of times, roaring, before I ask what he’s fixing and it turns out he’s repairing an old flatbed Toyota he bought at auction. It’s winter in Australia and he’s hoping it doesn’t rain while he’s outside. He’s had a heart attack, no, he’s had two heart attacks, and the latest one left him vulnerable to damp and raised blood pressure. But he’ll never bloody take the medicine they give you at the doctor’s because that’s the stuff that really kills you. He uses a black salve that he keeps in a jar at the back of his fridge for the skin cancer that keeps on popping up on his ears and his neck and his chest. His buddies have all died as a result of butchering bloody doctors but he’s going to make it to a hundred.
‘How old are you, Dad?’
Until I stopped talking to him, he always said he was twenty-one. I have no clue how old he is now. If I have to guess, I’d say he’s close to eighty.
‘Twenty-one,’ he says, and down the line comes the sharp snap of him popping out his front teeth and then clicking the bridge back into place and his self-satisfied hum at hoodwinking me yet again.
I want to laugh. It’s like I am six or seven, sitting in the front of his ute, him pulling potatoes from my ears, pretending I haven’t washed behind them well enough, cracking jokes, teasing his little girl, telling her he’s twenty-one. He wasn’t all bad. I know he wasn’t. I know he wasn’t.
‘Happy twenty-first,’ I say. ‘I hope you had a bash.’
During the third or fourth call, my dad tells me about my great-grandfather, a man who left school when his own father became crippled in an accident. I’ve never heard this story before and I desperately want it to be true. As Dad talks, images rise in my mind: an emaciated man, my great-grandfather, in a top hat and tails – he’s an undertaker – flogging the horses that draw the hearse in an effort to get back from the cemetery in time for a cricket match. The tall black hearse with its velvet drapes and etched glass windows swaying and creaking, the horses galloping along, their emu-feather headdresses blown backwards over their ears, dirt flying from under their hooves.
And later:
A story about teaching our puppy to piss on a peppermint tree. My father’s leg raised. ‘Like this!’ he shouts. For a moment, we are not in Chicago and Brisbane. It’s Western Australia. Flamborough Street, Doubleview. A tiny asbestos house on a hill near the sea. 1966. And as he recalls the gentle humour of that summer afternoon, I am reminded that once, he was my father in more than name.
These calls feel like some kind of healing for me. Afterwards, I sit outside on my verandah and listen to the birds and I am full of something approaching forgiveness.
For a man who didn’t finish school, my father has a surprisingly deep love of language. Gutless cowering. The knock on kinship. The irksome burden of trust. The more I talk with him, the more I notice how similar we are. I am not sure how I feel about discovering that the gifts I most value in myself were all inherited from him: my imagination, my aesthetic sense, my obsession with books, my ability to write and draw well, my fascination with building and construction, my dark sense of humour, my love of cooking, my wordplay. Had I known this earlier, would I have suppressed these traits, grown more like my mother in an effort not to be like him?
In one exchange:
The cold steppes of electronic isolation. A gnat’s tit of philosophical insight. Queynte of the decade. Beggars belief. Who are you bullshitting? Copping some stick. Rubbishing. Oily praise. Intellectual chicanery. Punch to the face. Patently a fraud. Threadbare relationship. Steady downwards spiral. Haymakers. Sporto. Man up. Balls.
Queynte, it turns out, is an ancient and obsolete form of the word cunt. I write it into my little book of ancient and obsolete words, many of which I use on a daily basis. I include the word in a novel I am writing, delete it, put it back.
Before I cut him out of my life, my father liked to teach me things. He thought of himself as an educator. He taught me not to chew with my mouth open or let the spoon click against my teeth when I ate or to slurp soup and he taught me never, never, never to allow chewing gum or peanut paste or marshmallows (all American inventions) into my mouth. He taught me that people who drive automatic cars are lazy and that good drivers drive fast and talk fast when the police stop them. He taught me that words are delicious. He taught me that I had to finish everything on my plate even if it made me vomit. He taught me that if I did something I should do it well. He taught me that doing one thing well is not enough; I had to keep on learning new things all the time. He taught me ‘I can’t’ really means, ‘I don’t want to.’
He taught me that the best bloody place in the entire universe was Western Australia and that the best part of Western Australia was the ocean and that the best part of the ocean were the fish and the best part of the fish was the eating. He taught me to tell the truth even if it meant I would be punished, because the punishment would be worse if
I got caught telling a lie. He taught me to be on time and to write good letters and to thank people sincerely and to clean underneath my fingernails every day and to cut my toenails to the nub after softening them in a bath with eucalyptus leaves floating in the water. He taught me that if I brushed my teeth for five minutes three times a day I would never get false teeth, and that doctors and dentists are highway robbers who are out to fleece the common man and that if I was smart at all I would steer clear of them all the days of my life. He taught me to pay more for toothbrushes with boar bristles instead of that crap nylon that was probably scratching the enamel off my teeth so dentists could put more of his money in their pockets. Sugar rotted the teeth so I should never have lollies, but if I did, I should brush my teeth right away. He taught me to polish the brass buttons on his army jacket every week with a square of newspaper folded behind them so that the Brasso wouldn’t end up on the fabric, and he taught me to give a hundred polishing strokes with a toothbrush before each button was finished and he taught me to clean the skirting boards on my hands and knees each Sunday with a toothbrush. He taught me to clean my shoes with a toothbrush dipped in linseed oil and he taught me to repaint my white sandals with a toothbrush dipped in whiting. He taught me to brush dirt over newly planted seeds with a toothbrush and he taught me to spatter green paint by rubbing a toothbrush over a bit of flyscreen and he taught me to scrub smashed flies off the walls with a toothbrush dipped in bleach. He taught me to pour hydrogen peroxide onto the bathroom tiles and then to clean the grout with a toothbrush. He taught me never to throw away toothbrushes and to categorise them as above the waist and below the waist. Above the waist could theoretically be cleaned enough to use on your teeth again in a pinch. Below the waist was permanently tainted. He taught me that gold teeth are the only kind of falsies to get if I was forced to replace something, though why that would happen if I was brushing three times a day he didn’t know. He taught me it’s a good idea to keep a spare above-the-waist toothbrush in your pocket. He taught me to push a piece of thread through the handle of the toothbrush and make it into a loop, so that if I got orange stuck in my teeth, I could get it out. He made me a small metal hook to dig other junk out from between my teeth. He taught me to brush my teeth for five minutes after every meal by standing behind me with a stopwatch in his hand. He taught me that farming is a mug’s game. He taught me that the laws of society are hokum. He taught me that I could be a pirate if I robbed an institution but I couldn’t touch anything that belonged to an individual. He taught me that if I took a hit off the nitrous oxygen canister in the shed at the farm that my voice would sound like Mickey Mouse’s. He taught me that social homosexuality is a very real thing amongst Australian drinking men. He taught me to hate bullshit artists, even though he was one, and he taught me to hate cheats, though he was a cheat too. He taught me that fathers don’t need to walk as slowly as their children. He taught me that men don’t need to be kind to women. He taught me not to bellyache about things that didn’t matter and not to whinge about the things that did unless I’d lost a hand or an eye. He taught me that Swan Lager is the best bloody beer on the planet and that you could drink ten bottles of beer and still drive home without hitting anything besides a few light poles and Blackie the cat. He taught me that drunks have wicked aim when they decide to throw something at you, and that when they can’t find something small, it’s okay to throw the drawer across the room. He taught me that leather is best when it comes time to discipline the children, but the back of a hand hurts worse than the palm. He taught me that children should be seen and not heard. He taught me that women’s breasts are made to be worshipped and that bikinis are the best way to view a great variety of them. He taught me to play poker and Slippery Kate and Liar and Cheat. He taught me that blacks aren’t as good as whites and that Jews aren’t as clean as Christians and that Catholics aren’t as intelligent as Protestants and that bloody damned Liberals didn’t care about the working man as much as the Labor party and that intellectual snobs in their ivory towers didn’t have half as much intelligence in their hands as the average yobbo laying bricks and that labrador retrievers were better than bull-mastiffs and that all dogs were better than all cats and that fishing was better than reading books and that dicks were better than tits and that men were smarter and faster and stronger and more ethical and kinder and more honest and more companionable and more parsimonious and less childish and more virile and infinitely more responsible and definitely more faithful than women.
