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Still here still — Charlotte Roseby
I dreamed of funerals like other little girls dreamed of weddings. It would be a big production and, because this was the 1980s, set to my cassette of Hooked on Classics, all of us in the processional stepping out to that cracking electronic back beat. This was my party so I got to be alive as well as in the box.
I knew I was about to die. I wasn't sure when, but looking around at the other kids with cystic fibrosis in hospital, the ones looking like skeletons with oxygen tubes stuck in their noses, it looked to me like it was going to be about thirteen. I was twelve.
Most of our medical information was transferred from bed to bed.
Six-bed rooms: teenage girls in one, boys next door; intravenous antibiotics for four weeks at a time.
That we were teenagers was pretty new. Before 1960, a baby born with cystic fibrosis (CF) typically lived just a few months. It had been this way for centuries; in the 1600s these infants were believed to be hexed: 'Woe to that child which when kissed on the forehead tastes salty. He is bewitched and soon must die.'
In the 1970s, eight years was the average survival age. By 1998 it was 29.5. So there we were, right in the middle, rewriting a little corner of medical history.
The nurses had cultivated school-camp cool, against boys putting Fanta in their nebulisers to see what happened when you breathed it in, and spitting 'frogs' into cups and tossing them out the windows. Messages and cassettes left under pillows: 'Do you like him?', 'She likes you', 'He wants to pash you', and the Great Raid of September 1985 in which the letters 'R' and 'O' disappeared in the night from the Royal Children's Hospital street sign and we were all threatened with expulsion. Pretty funny given all we wanted was to go home.
A photo shows us dancing on the olive linoleum. Like wartime platoons we formed strong bonds based on survival, friendships as strong and as long as 'lifelong' could be. Baiting each other: bet you can't pierce your own ear with that syringe / sneak out to the cinema / get those antibiotics into your vein in under a minute. Compared to the banality of life outside, these kids were the liveliest, alive-est, kids I knew.
There was a lot to be frightened about. The total sum of effort towards comfort was a poster of Garfield someone had tacked on the ceiling, so you could watch him mouth 'Why me?' right above your head, while they dug around in your arm for a tired old vein they could stick. If you cried you'd be heard through the glass and get mocked by your buddies, and half-mocked by the nurses who'd seen worse, so I'd have to really concentrate on not.
We sometimes debated who was next. As in, who was next. But quietly, because saying things like that would get you into trouble with the nurses.
To think of these kids' lives as being 'terminal' is to miss what went on here, and what they brought to life. Their lives were rich and hilarious and sad and painful and joyous and in all ways, focused. They had been given the gifts of mortality: lack of pretence, intense focus, intense relationships. Enjoying the small moments and making sure they're funny. Attentiveness to life. And the corollary: a falling away of things that aren't important.
They passed those gifts to me and taught me that on the bedrock of the fear of death, a very full life can be built. Staring death in the face wasn't so bad. Just remember to look away most of the time.
We had so much fun that we started to resent hospital visitors.
Each day my mother brought food in a basket. Dad visited in the evenings, so uncomfortable I kept trying to let him off the hook. 'You don't have to come,' I pleaded. He was a pharmacist specialising in mental health. He was dedicated to his patients, but here he was rendered unbendable. He couldn't seem to sit down on a chair or on the hospital bed, so we wandered the empty night-time corridors, getting ourselves lost and riding the lifts up and down in the deserted shopping-mall wards.
'You have to watch it,' he warned me every visit. 'You'll become institutionalised. You'll start loving the place.' He always spoke like this, over the tops of children's heads.
I sort of understood. You offered up your lungs for repair and offered up every little decision at the same time, starting from the moment the nurses woke you, wheeling along a hot breakfast trolley offering baked beans and cold toast. The cleaners arrived each day midmorning to swirl the mop in the toilet and wetly sop the floor. You settled into place so that your bed number was yours and you couldn't imagine it being anyone else's.
My father shouldn't have worried; these hospital corridors gave me a real education.
Joanne started out well enough in the bed next to me. She was a tiny girl with a sharp wit and unmerciful giggling, coughing, giggling. Her bed was the meeting point for everyone else, and she was the centrifugal force. In the middle of the night she started breathing out with noisy sighs. The ins seemed to be okay, if not a little faltering. It was the outs. Grinding. An electric knife in the night. Like giving voice to years of pain in every breath.
I lay there rigid, hoping the night nurses down the corridor would hear what I was hearing. Then I half-woke as they quietly moved her into the isolation room. By the morning, we all knew what that meant. That's where the sick kids went. Or someone studying for their year twelve exams. Either way, serious.
Her big brother sat on the end of her bed and cried while the rest of her family faced front, looking overly interested in the music videos. I'd never seen a teenage boy cry before. So fascinating. My memory of him is firmly embedded along with Bonnie Tyler and Foreigner.
Joanne taught me how you die from a respiratory illness. How I would die. The fast breathing seemed to just rip the weight off. Faster at the end. Joanne sat on her island bed, skinny crossed legs in front, spine curved in a ball. Somewhere under that rounded back there would be nasal oxygen cannulas pressing in the air. I could start to pick the sick ones because they started leaning over.
I realised what Joanne's sounds were, years later. Those ones that pierced the half-darkness of the hospital room. Cheyne-Stokes breaths (or as I thought at first, 'chain-stoking' – dragging a heavy chain around made perfect sense). Dying people often experience them, to the distress of those around them but of no distress to the one doing the breathing.
Joanne's mother Margaret was just above her daughter's height. A stocky, devout Catholic with lots of children at home and never without her button earrings and a hairbrush. She was a constant presence, stepping out of that isolation room to check in on us all. How are you? How are you doing? I was doing embarrassingly well.
Four days later, Margaret wanted us to be allowed to view her daughter's body, which she had lovingly laid out herself.
It was an extraordinarily generous gesture. The CFs, the anorexics, the depressives, the asthmatics, the diabetics were ushered in; that's how they called us and we called ourselves, two by two.
It was my first real sight of a laid-out dead body, one looking exactly like an angel in a lace and satin full-length nightdress with a pie-crust collar and perfectly straight, brown combed hair and her hands set. I didn't mean to view the body. I just followed Christine in the room because she was fifteen, and I was not quite. Christine probably thought she was saying it inside her head, but she burst into tears and yelled it out loud – 'Yuk!' Joanne's mother was very understanding about that.
Usually, you only knew someone had died because they worked so hard to hide it. A nurse came along and ushered you into whatever room was closest. We all just looked at each other. A lock-in. This was interesting. I'd never even noticed there were doors. They did the long wheel down the corridor with the body, making sure no-one saw. Or, more correctly, making sure no-one would comment. Then a designated nurse took us downstairs to the park for consolation, on the dry, dusty plain of yellow grass. After someone died, a nurse, Peter, gave me a small red leather coin purse that unfurled like a flower. Here you are.
Kelly was hunched over her feet in her isolation room. The position. Rounded back, crossed legs, sucking up that oxygen. She cried, aloud, for days on end. She sometimes howled. I guess while she still could. Behind the safety of the nurses' station, they rolled their eyes to each other and muttered, indignant somehow, 'Oh my god, there she goes again.'
How unprepared, how ill-prepared, those nurses were. How unable to provide anything beyond what was prescribed.
This was the mid- to late-80s, a period of looming medical leaps. The mapping of genes. Isolating the CF gene. The first Australian lung transplant in Melbourne in the early 1990s.
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'.
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.
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.
Excerpted from "Women of a Certain Age"
Copyright © 2018 Jodie Moffat, Maria Scoda, Susan Laura Sullivan.
Excerpted by permission of Fremantle Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Still here still – Charlotte Roseby,
A case for forgiveness – Goldie Goldbloom,
Ignorance – Anne Aly,
Black boxes – Jeanine Leane,
Memories that shaped me – Tracey Arnich,
Work in progress – Maria Scoda,
A fortunate working life – Jenny Smithson,
Flying kites – Mehreen Faruqi,
Djana ngayu – Who am I? – Pat Mamanyjun Torres,
Seeking singular single older women – Susan Laura Sullivan,
Living at Clarkie's Camp – Sarah Drummond,
Sexy old women – Krissy Kneen,
On relationships – Brigid Lowry,
What took me so long? – Pam Menzies,
Everday sadness – Liz Byrski,