Some practicalities, though, I remember as clearly as if I’d witnessed them yesterday.
To brush his teeth he was brought a glass of water, his toothbrush and toothpaste in a small kidney-shaped metal container. He couldn’t lift his elbows from their resting place, but could raise his forearms off the wooden surface of his tray, which was always on the front of his wheelchair whenever he was in it. The tray was a polished piece of plywood and attached to a chrome bracket at the front of his chair. I didn’t ever do much to assist in my father’s getting dressed, but I did sometimes bring him the little bowl so he could clean his teeth.
Later, when I was big enough to carry it, I learned to secure his tray. The tray helped him sit upright and kept him from tipping forward. He wrote letters on his tray, ate meals on it. He cradled, carried and sat his children on it and, much later, his grandchildren.
Some of my father’s physical restrictions were masked by a few ‘tricks’. His tray helped him a lot with these. With his left forearm flat on the wooden surface, his wrist bent back and hand extended, he could use his fingers as a cradle to support the weight of his other arm. From there he was able to complete simple tasks on his own, like brushing his teeth, eating meals, holding up flat-bottomed glasses to drink and rolling his own cigarettes and smoking.
He was stubborn about his independence, but he was happy to let go of some things. He brushed his teeth, but preferred someone else to brush his hair. The extra effort needed to lift his hand just those few inches higher to his head could be better used elsewhere.
He made peace with his mobility limitations, accepting what he could and couldn’t do physically. He decided what really mattered was how he presented himself to the world. He worked hard at not letting himself go, at not looking disabled despite the undeniable reality of his chair.
Fourteen
There were good reasons for our double life. It was important for all of us that the outside world didn’t see the fissures. I don’t remember my brother or me ever being explicitly asked or told, but we knew never to let on that anything was other than how our parents said it was.
That silent directive (yet as loud, to me at least, as if they’d screamed in my ear) did not concern only the emotional underpinnings of our lives, but the physical ones too. I’m sure that no one other than my father’s parents knew just how hard it was for him to participate in even the simplest activities. When my parents turned up to a party, they made it seem like they’d walked there, arm in arm, just like every other couple in the room. They ate and drank and smoked cigarettes along with the rest. My father’s motto: no matter what, turn up smiling.
But the reality was very different. The preparations and logistics of doing something as simple as turning up to a party were hugely time-consuming and complex. If any single step was missed the consequences were never as small as they might appear in isolation. No wonder I found myself in a career managing complex logistics – I’d been groomed for that work from birth.
In public we were a happy family and the facade worked. We were all complicit in the ruse. We played perfect hosts to friends and visitors to the gallery. From the age of about five, I learned to stick cheddar cheese cubes with toothpicks for the exhibition openings. It felt like there could be hundreds of them to stake for a single opening and I did them all as patiently and carefully as a child could. Hugh was an old hand and showed me how to politely offer the snacks to the guests on a platter. A bit later, he taught me to pour a glass of wine from a flagon without spilling too much. We were our parents’ miniature hosts – cute additions to the already infamous openings at their hip gallery.
Inside, though, when the doors were closed and we were just the four of us, everything changed. Sweetness left the moment the visitors did.
From the age of five, I developed chronic croup and often woke in the night, gasping for air as desperately as if someone had their hands tightly around my throat. Croup is a common childhood affliction, which manifests as difficulty breathing and a cough that sounds like a barking seal. Many children have mild or one-off episodes of croup, but mine was regular and alarming.
Some years ago, I read asthma is called ‘the silent scream’. That the disease represents not only a physical condition but an emotional one too. Since croup is the childhood version of asthma, I immediately recognised that this was what my illness had really been about. Being sick was a way for me to check out from the situation at home. I may not have said in words or actions that our life was hard, or that I needed attention, but I was screaming it with croup.
When I got sick, I usually went to hospital and stayed for days in a special bed that had a clear plastic tent over it. The tent had a large zipper – like the entrance to a camping tent – except that this zipper only had a tab on the outside, so there was no escaping. My tent also came with a wide plastic pipe stitched into the side that attached to a pump, which sprayed a vile chemical mist into my afflicted lungs and throat.
My tent was totally different to my father’s iron lung, but there I was, locked in my own breathing machine with lungs that didn’t work properly.
No matter how sick, I begged not to have to go to hospital, not to be put in the awful tent. To try to ward off the emergency room, my mother carried me into my father’s bed, placed me beside him, pulled his upper arm underneath my neck to rest my head in the crook of his right elbow, and he ‘jigged’ me – a small jerky back-and-forth motion of his forearm that was as soothing to me as rocking.
I gasped and barked in his arm while my mother prepared ‘the towel’. The towel was actually a towel, but drenched in a concoction of vinegar, methylated spirits and hot water. She wound the sodden, stinking cloth loosely around my neck. There I lay through the long night, in my father’s arm, inhaling the cutting fumes until my breathing settled and I was lulled into sleep by his jig.
Sometimes this routine saved me from the hospital, as did sitting on my mother’s lap on the closed lid of the toilet after she shut the door and filled the bathroom with hot steam from the shower. But more often, she called a cab to take me to the emergency room, leaving my father and brother in their beds.
On the occasions I was in hospital, my mother must have called my father’s parents, a neighbour or a friend to come over and look after my father and brother. Either that or she left me with the doctors and nurses, returning to see me during visiting hours. I do remember often lying in my hospital bed wondering where everybody was. My illness was exhausting and terrifying for everyone, including me.
My childhood croup turned into asthma. I was about twenty-seven when I had a particularly dramatic attack in a doctor’s surgery. I’d been bedridden and coughing blood for about a week before my boyfriend insisted I see a doctor and drove me to a clinic not far from our house despite my protests that I’d be okay. We’d been waiting about an hour to see the doctor when one of my hacking coughs turned into gasps for air. I felt like I was drowning.
The receptionist ran to the doctor in the examination room. He excused himself from his patient and rushed me, blue by this stage, into an adjacent room. By the time he got the syringe full of adrenalin out of the mini-refrigerator, my veins had collapsed. My boyfriend almost passed out as medics arrived in an ambulance, put cardiac monitors on my chest and wheeled me out on a stretcher. I spent a week in hospital being injected with morphine and steroids for severe asthma and pneumonia in both lungs.
The morning I was discharged, the doctor gave me a list of prescriptions along with two fistfuls of pill bottles.
‘How long do I take these?’ I asked, staring down at the medications in my hands.
‘Every day for the rest of your life,’ he said.
I couldn’t stop crying after that. It was not the last time I heard those words from a doctor, and not the last time I ignored them.
I had similar episodes in various hospital emergency rooms throughout my twenties and early thirties. That first attack had been in August, which was the month in wh
ich my parents had finally separated, years earlier. It sounds like magic foo-foo, but I’m sure it was no coincidence. For more than two decades I could count on spending most of August sick in bed – or hospital, more likely – wheezing and coughing.
Some scientific-minded people may wince at the idea that a body can manifest emotional illness, but I believe it to be true. My body bore the scars of my parents’ miserable marriage.
I never learned to register or express my own needs, because compared with my father’s physical needs and my mother’s emotional ones, mine were so far down the totem pole they were insignificant.
My father was the sick one. He never said it or intentionally made me feel this way, but to my mind his polio trumped anything I could possibly be going through, even when my croup was actually very serious. He’d gone through all the life-threatening stages of polio when he was first hospitalised. All I ever thought was, ‘He can’t walk, what can I possibly complain about?’
It’s something I still struggle with. I have to be very, very sick before I take myself to a doctor. Even then, I might just opt to stay in bed taking over-the-counter drugs when what I really need is steroids, morphine and someone to look after me.
A few years ago, I went to an exhibition of the artist Ed Ruscha at the Whitney Museum in New York City, where I stood transfixed in front of his painting:
The text was written on an angle in large white capital letters across a hazy orange circle. It looked as if the words were on top of a whirlpool, on their way down a drain. I couldn’t move from where I stood.
My croup and asthma were the silent scream, but air wasn’t the only thing I needed inside that plastic tent. I was screaming for someone to hold me. I needed contact.
My childhood bedroom had blue floral wallpaper with curtains of the same soft hue. A large, framed window looked out on an overgrown strip of garden that around the time of my birthday bloomed with generous cascades of white flowers. In the winter, when the flowers were stripped bare, I could see through to the neighbour’s house. My curtains had matching sashes of thick blue cotton trimmed in pink piping. On either side of the room was a brass single bed, painted white, with blue bedcovers also with pink piping that matched the curtain sashes. The curtains draped open perfectly, so when I put my toys away and made my bed the room looked like a picture in Home Style magazine.
I loved my bedroom, but at the height of our parents’ trouble, when I was about five, I began to notice where the sheets of wallpaper didn’t line up properly, making jagged, disjointed flowers. It seemed like sloppy work.
I lay in bed one morning before anyone else was awake and picked away at one of the misshapen flowers until I got enough of it under my fingernail to lift it off. The paper didn’t come entirely away from the wall; the backing clung fast to the plaster underneath, but two or three flowers ripped off and the room felt a little more honest.
It was a small act of rebellion on my part, hardly worth noting, except that it mattered greatly to me to have evidence that my home wasn’t as perfect as we were pretending. When I told my brother about it and showed him what I’d done, he grabbed at a loose edge and pulled it further so my rebellion would have been obvious if anyone had cared to look. Our tiny mutiny accomplished, we went out to the kitchen to make ourselves breakfast.
Apart from these small acts of defiance, my brother and I tried to be on our best behaviour. Sometimes it was hard to know what was our best behaviour, even harder to know why we were in trouble or people were screaming.
We tried to help as much as we could. I wasn’t big enough to push our father in his chair, but as well as doing most of the shopping from the little deli at the end of our street, I did the family’s laundry once I’d run out of clean clothes. For a long time we had a semi-automatic washing machine, but it only had manual rollers to wring out the water at the end of the cycle. The wet washing was too heavy for me to lift out of the machine so I devised a way to catch and twist the sopping wet laundry around a broom handle, hoist it up into the air and then feed it through the rollers, the squeezed towels, sheets and clothes spat out on the other side flat like a biscuit.
My father enjoyed watering the garden at the end of the day, after the gallery closed. I helped him with the hose and took over when the spray of the water couldn’t reach into an inaccessible nook from where he sat. Best of all, no one bothered us when we were watering the garden. It was quiet time.
He couldn’t get close enough to the thick bed of nasturtiums we had on the far side of the garden, so I always took over to drench them. I couldn’t fathom how the water didn’t wet their leaves at all, it pooled into balls – like iron solder does when it heats up – and rolled off into the dirt. The nasturtiums gave off a different scent to the rest of the flowers, too. They had a sweet and sour smell.
My brother, bigger and stronger than me, pushed my father’s wheelchair and did a lot of the other chores. Even so, we were no shortage of work ourselves, and my father wasn’t much of a sweet-talker just for the sake of it. If you were in his good books, there was no end of praise, but he didn’t abide bad behaviour.
By now his firm assessment was that my mother was behaving badly most of the time, so she can’t have been getting a lot of joy or encouragement from him. What self-esteem my mother had, or what empathy she received, she had to make for herself. Or find from other sources.
She could have left the usual way, packed up her bags and probably her children as well. Although I suspect we were just part of her entrapment at this stage – I think she would have been quite happy closing the door on the lot of us. Instead she used other exits – pills, booze and then other men – in a desperate attempt to blank out our miserable home.
When she joined a book club, my father knew it was a hollow alibi for infidelity. Sometimes if I got croup in the night my father would call her friends, trying to locate her. When she couldn’t be reached, Grandfather was the one who delivered me to the doctors in her stead. I’m not sure how my father admonished her when she returned, or if he did at all. By this stage, he may have just decided to turn a blind eye. He was at her mercy, after all.
Fifteen
Miraculously, my father got a second chance at happiness and my mother got the opportunity for a guilt-free escape. Although in the end only one of them embraced the gift beyond the first rush of freedom, at least for a moment, light returned to our troubled home.
Surely neither of my parents believed their silent – and not so silent – dreams could ever come true. From anyone’s perspective it seemed highly unlikely that either of them would find happiness again. Yet it did happen, for my father at least, in 1972, shortly before my seventh birthday.
Rebecca – Becky – Roberts was a beautiful young American drama student in her early twenties. My mother employed her as a housekeeper and nanny while she went on an art-buying trip to Sydney. Here was her saviour, in knee-high boots, a miniskirt and a poncho. ‘You are my sister,’ she told Becky, holding her shoulders and kissing her cheek before her trip.
What happened in the weeks she was away was that my father and Becky fell in love.
It would be easy to think that my father somehow manipulated a seemingly bright-eyed, naive and trusting young woman from America’s Midwest. How else would he be able to escape his misery? He was in a desperate situation, in an unhappy marriage with two small children, and who could blame a desperate man resorting to desperate measures and all kinds of trickery?
Since Becky was the closest thing to a lifeline my father was likely to find, it’s not difficult to imagine him doing anything he could to interest her. But the truth is, quite separate from all the mess, he fell for Becky and she fell for him. That he got to escape his situation was an incidental bonus.
My father was still a relatively young man. Being in a wheelchair didn’t change that. Suddenly he had a twenty-something-year-old dressing and undressing him. Someone who didn’t resent and despise him. My 95 per cent paralysed father did wha
t any young man in a miserable marriage would do: he seduced her.
At first my mother was as happy as my father. When he told her what had happened in her absence, she told Becky, ‘You are my way out.’ She went interstate to celebrate her new freedom. All of a sudden, the leash binding her to that backyard post of her childhood was severed. She couldn’t have been happier.
Becky moved in and continued to care for the three of us, except that she was now openly sleeping in my father’s room. My brother and I missed our mother, but she wrote us lots of postcards and letters and we spoke on the phone every now and then. Life went on. Becky was good to us and our father was happy, so we were happy too.
One night after my brother and I had been put to bed, my father asked her, ‘Do you want to come on an adventure with me?’ At the time, I think they both thought it would be a short adventure, that my father wouldn’t live all that much longer, given his polio. She said yes, and that’s exactly what they did.
I don’t remember how long my mother was away. Children have a very different sense of time to adults, but it didn’t feel like a small amount of time. Perhaps a couple of months?
Why she returned when she did is unknown to me, but one day she suddenly appeared. Now we were five. She told me and my brother that she wouldn’t be staying in the house. She asked Hugh to help her carry the mattress from the spare bed in my room out through the back door and across the lawn to the gallery. That’s where she stayed. On a single mattress on the floor of the art gallery. The rest of us slept in the house.
In the morning, before the gallery opened, she and Hugh hauled the mattress into the woodshed. Like a modern-day GPS gone off course, we all recalibrated. I’m not sure whose idea this set-up was, but it was a bad one. Anyone could see it was a kerosene-soaked bonfire ready for a match.
Who wouldn’t make themselves scarce in this arrangement, if you can even call it that. I don’t remember all five of us being in the house together, except for one night. There was something in the air all that day. Some kind of shimmering expectation. I have no idea why, but the day was different.
Diving into Glass Page 8
