Corpus in Extremis: A Memoir

LIFE IS A BOX MARKED ‘FRAGILE’

(And I may as well be made of cardboard)

Bloodlines—mother

My mother Lyn-don’t-ever-call-me-Lynette Smith née Little, was short and petite with curly brown hair and large blue-grey eyes. She had high expectations for herself and her family. We were meant to be the picture-perfect version from which she could escape her own childhood. The stories from her past were often laced with cruelty and disappointment—or at least that’s my recollection because those were the stories filled with tension and drama. Mum learned to swim by being thrown from her father’s shoulders into the deep end of the local creek and, by her account, almost drowning. Mum never got to go to high school and the nuns, who ran her Catholic primary school, controlled their charges by threatening to lock them in the ‘black hole’—a place under the platform in the assembly hall.

If Mum didn’t end up in the black hole for some minor misdemeanour, she was boxed around the ears for daydreaming in class. The middle child of seven, she’d often felt invisible, as if there were moments people forgot she existed. When she later discovered she was hearing-impaired, I wondered if it was from the numerous childhood ear infections and the reason she was boxed round the ears for daydreaming. ‘Just a minute, I can’t hear without my glasses!’ she often said. Maybe she felt invisible because her eyes were tired and she couldn’t hear everything the world had to say.

She walked with her siblings to early-morning mass every day before school. Sometimes it was so cold the ground was white with frost and her bare legs ached. On Sundays the whole family went to church dressed in their finest, the outfits designed and made by their father, the tailor. There was never much money but on Sundays they looked a million pounds, the pressures of home life hidden in their pockets. The church aisle was their catwalk. For Mum, church felt safer and more promising than family or school. She took to praying a lot.

We must have gone to church on my thirteenth birthday, being a Sunday. It was rare for us to miss the weekly sermon. People at church must have wished me happy birthday. Was there a cake? I think there was a cake. I recall my mother smiling but seeming sad, distant, even a little distressed.

My body hadn’t registered adolescence in the least: no sprouting of hair, pimples, breasts, nothing. I was as dormant as our winter garden, bare-limbed and bud-less. Mum said once you become a teenager the hormones kick in and all sorts of changes occur, including acting strange and moody. But the only person acting strange on my thirteenth birthday was my mother.

I didn’t want anything to be wrong on my thirteenth birthday.

I didn’t know how to ask her what might be wrong.

I didn’t want to be the thing that was wrong.

Mum had told me that every time I cried at night Dad would hit the roof. Mum had never seen this side to him. He was a mild-mannered gentleman. He was the one she’d committed the rest of her life to. Dreams of perfect family bliss fell away as dread rained down on her Catholic head. Catholic guilt pressed at the back of my own eyes and weighed down my limbs when Mum first told me this. Dad was very anxious, and it seemed I was the main cause.

One evening Mum cried out, ‘I want to be ME!’

Mum’s frustrations morphed into projects of creativity. She planted pampas grass, wrote poetry, came home with vases from pottery class and macrame to make hanging baskets and, as a child, she dressed me like a fancy doll, with outfits more like costumes than day wear. I had hats and capes, and things with satin and velvet ribbons. I dressed in velvet pants with socks pulled up to my knees in emulation of Sebastian Bear from the Magic Circle Club children’s television show. I was a spy, a racing driver, I could run and play and dance and be anything I wanted to be. I could dress like the little girl in Chitty Chitty Bang Bang.

What did I wear on my thirteenth birthday? Was it the maxi-dress Mum had made with the puffed sleeves and shirred bodice? I thought I looked so glamorous, especially when I got gold sandals to match. Or was this the day I wore my favourite bright multi-coloured suede shoes and new jeans? If it was, I remember standing in the rumpus room in a shaft of sunlight. I wasn’t aware I had my toes turned inwards until Dad walked past and told me to straighten my feet. He told me I looked retarded standing like that. Sad clown feet, a patchwork of yellow, blue and red laughing in the sun. Point toe straight or outward, never in.

Late in the afternoon of my thirteenth birthday Mum disappeared. I eventually found her on the back steps, an Alpine cigarette between her fingers. I stood in the doorframe and looked at my feet. She turned round. Her eyes were red from crying.

‘The doctors said you wouldn’t live long enough to become a teenager. And look at you! A miracle.’ She butted her cigarette out and stood up. ‘The doctors didn’t know what they were talking about!’

I didn’t know, either.

Bloodlines—father

Summer holidays 1983. My friend and I took advantage of the university break and drove north along the coast, feeding my little hatchback with leaded petrol at forty cents a litre. On a nude beach in Noosa we communed with the moon-tides, water in our hearts, our kidneys, our lungs and brains. Even bones are watery.

The phone call arrived at the reception desk of a Sydney youth hostel. The message: phone home.

The receptionist expected us to go to a public phone box to return the call. Did I have the right coins? My hands couldn’t find the slot. The handset was filthy and dead. I only knew I was still gathered inside my flesh because I could hear my breath, fast and shallow. I returned to reception and begged to make a short call to Melbourne. They could add it to the bill. Mum got on the line. ‘Your father died this morning.’

He was fifty-three years old.

The last time we’d spoken it was an argument over something so trivial I couldn’t recall.

We headed for the Hume, an ugly highway but more direct than the coastal route. Solid objects shimmered and wilted. I wound down the window, willing myself to breathe. We pulled into the servo. I took the toilet key attached to a block of wood from the attendant and locked the filthy door behind me.

It was dark and the mirror reflected only the whites of my eyes. I didn’t turn on the light. I didn’t want the light to know I was here. I adjusted to the gloom and stared back at the face in front of me. I brought a hand to my cheek. Who made my face? How much of him is carried in me? What has he left behind? In the mirror I saw his curly hair, though mine is browner, his greying black. I saw his olive skin. I looked at my thumbs. They are his in miniature. I look at my thonged feet. They are the same as his, thin and pointy-toed.

He used to take me out on the wet sand and we’d jog in bare feet to help strengthen my loose tendons. He bought me my first runners, even though I couldn’t run. They were pale blue Adidas ones with navy stripes. Once, he took me into the waves on his back. I wrapped my arms around his neck and rested my chin between his shifting shoulder blades as he swam to the sandbank. A shark siren pierced the sky. I let go and swam back before he had time to turn. My arms have always served me better than my legs.

In full light, the whites of my eyes were a pale egg-blue, an indication of my 1 in 20,000 genetic anomaly. My eyes are large like my mother’s but they are hazel, a mixture of my father’s brown and my mother’s blue. I blended into the dark, feeling this moment against everything that has been and everything that is to come. My father was dead and one day I will be dead too. If I am lucky my face will be given enough time to age.

On the morning before his death, my father picked Mum’s favourite rose from the garden and handed it to her. Around 3 a.m. Mum woke to find Dad breathing noisily. She nudged him, he rolled to the floor, unconscious. My brother attempted resuscitation. He was still breathing when the ambulance came but died en route to hospital. My family was told it was better that he’d gone. Had he lived, his body would have been merely a shell; an empty seashell except for the sound of wind and waves, tiding time.

There was a knock on the door. I splashed my face with water and turned the knob. The elderly woman looked friendly enough, but I immediately resented her for no reason other than she’d managed to outlive my father.

We’d taken three weeks to meander up the eastern seaboard. We took two days to return. I took over the driving. On a curve I hit dry sand, veered to the opposite side of the road and crashed into a wire fence. No damage, just grief, then laughter at cheating the beast. A moment sooner or later and we’d have been collected by a prime mover.

Who was my father? He rarely spoke of his past. We gleaned a little from black and white photographs and stories Mum regaled us with secondhand. A barefoot, tanned child living in rundown rentals on the outskirts of Brisbane. An overbearing mother, with my father’s dark handsome features. His father, a pale, overweight station master with sandy blonde hair, long dead. A brother with club feet who never left home. A sister who married an alcoholic. A work transfer to Melbourne where he escaped and met my mother.

My father was an anxious man made all the more anxious by me, his firstborn, with a rare bone condition the doctors said would not see me live to my teens; watery bones that bent and twisted and broke. He loved us but didn’t know how to relate to us. Little ones were noisy, unpredictable. Five was too many. He worried about money and the weight of responsibility. He worked as a customs agent for the same company for twenty-five years but never received a gold watch. On Saturdays he caught up with neighbours and washed the company car. On Sundays he came to church and gave us twenty cents for the plate—never more, never less—even though he was Protestant, not Catholic, and couldn’t take communion.

I have his childhood tin box of treasures with Keep Out scratched in large, awkward letters on the lid. Inside, there are old coins, a few knucklebones, feathers and a roll of cash. The notes are from World War Two and made by the Japanese as victory currency before they bombed Darwin. Proof of thwarted ambition.

My father, Harold-don’t-ever-call-him-Harry is already in the morgue and I try to square that with the last time I saw him. The big full stop. Until now I’d only lived with commas.

Mum refused an autopsy. What did it matter when nothing would bring him back? And we reckoned we’d worked it out ourselves. Three months earlier he’d jacked up my ancient Mini Minor to work on it. He was under the car when the jack collapsed. His calf became swollen and he decided to bandage his leg. We think a blood clot formed, a blood clot that took three months to reach his heart.

I don’t remember the funeral except that I wore an outfit my mother had made that my father had said was his favourite. At the cemetery the grave smelled like our yard after Dad had mown the grass. As the coffin was lowered, Mum whispered, ‘Bye-bye Hal.’ His headstone lists all our names as if we are buried with him.

I still feel the weight of my old car on him.

I am a rare specimen

1961. A hug. A cracked rib. A cry. A hug. A cracked rib. How many cracks? How could anyone know that every time I was handled it caused me pain? It was before I understood words. I was a baby who learned to cry less, not more. My instinct drew me to stillness, shallow breath, hushed lungs.

It was six months before I gave any outward sign that something was peculiarly different. It was inadvertent. I stood, gripping the wooden rails of my cot, left foot flat, right foot raised. My mother was concerned enough to take me to the doctor but he merely patted her on the arm, told her first-time mothers were all the same, worrying too much. There was nothing wrong. I was a perfectly normal-looking baby he said.

The truth, hidden beneath skin and muscle, was eventually prised open when I fell out of my highchair aged twelve months. I didn’t cry, just slumped like a rag doll with a white-as-porcelain head, broken and floating in cerebral fluid.

X-rays charted my insides. Against a vertical plate, my mother’s enormous skeletal hands held me between my tiny ribs, each shadowy image throwing up multiple fractures, probably one for every time I’d been cradled. So many healed and healing bones. When the specialist momentarily left the room, my mother whipped his notes round and saw abuse? scrawled there.

What was wrong? The doctors mulled while a young trainee nurse visited the children’s ward after attending a lecture on hip dysplasia. She checked every infant’s groin and there I was with my bandaged head. My hip sockets, which should have been worn into even, bilateral grooves by continuous movement of my infant legs were out of whack. My broken skull had brought me here but the doctors had failed to appreciate the top storey was merely an indication of faulty foundations. If I were a building you would want to raze me to the ground and start again.

If it were hip dysplasia alone, I would have been the one-in-six-hundred-baby-girls statistic. But the bone fractures, the slightly blue sclera of my eyes and the overly flexible joints put me in that 1-in-20,000 category that carried the name Osteogenesis Imperfecta (OI). Bones-imperfect-from-the-beginning. I wasn’t being thrown against a wall or pushed from a highchair. I had brittle bones caused by a collagen defect. I was a rare specimen but also a conundrum according to the doctors in those early years of the 1960s. My condition should have been more pronounced. Where was the heart-shaped head? The truncated torso? The barrel chest? The shortened limbs? OI sub-groups were yet to be defined, the mapping of the human genome decades away. I was labelled a syndrome, the patterns of a disorder for which I was not quite fitting the full category. Just as Willem Vrolik, the nineteenth-century Dutch anatomist who first observed the condition and described its various aspects as Vrolik Syndrome, I required a more accurate signifier.

Did I inherit it from my mother or father? Both displayed hyper-laxity in the way they leaned back into their knee joints and my mother was diagnosed with a hearing impairment in her thirties, sometimes a sign of OI. It could have come from either parent but more than likely it was that random mix of one or more recessive genes drawn from each chromosomal pond, though there was—and still is—no cure. OI, I have been told, is a complicated, hydra-headed genetic beast.

X-ray after X-ray on my fragile frame. This angle, that angle, legs up down and sideways. Each time the technician covered me with a large protective lead apron and laid two pennies where he hoped my ovaries were. Beneath the weight I was hardly visible but central to the activity. I understood they were taking photos of my insides but I sensed the rest in the way an animal senses fear, in the lead pinning me down, in the sights of a bright flash from which everyone fled.

The X-rays piled up, a giant family album of skeletons. My father arrived in his business suit and demanded the doctors tell him exactly how many X-rays had been taken. A tally was done and the doctors blanched. At three years old I had absorbed the radiation of over four hundred of them, often taken repeatedly over the same body parts. I didn’t suffer the long exposure burn marks and hair loss of the earliest X-ray patients of the late nineteenth century but medical imaging in the 1960s nevertheless took longer and delivered a dangerous radiation load compared to today’s millisecond image capture. Radiation exposure is cumulative, which is why I was covered in a lead apron and copper pennies to protect me from cancer and sterility. My body was showcased time and again but no one working in the complicated cogs of the hospital system thought to check that the X-rays they requested had duplicate copies. Multiple duplicate copies. And like the ‘X’ in X-ray—first coined in 1895 as an ‘unknown phenomenon’ by German physicist Wilhelm Conrad Roentgen after radiating his wife’s hand to reveal the image of her bones beneath—my condition was little understood and my future experimental.

THE ADULTS ARE IN CHARGE

(But not always incommunicado)

The infancy of infant pain: don’t give a child opioids, oh no

1964. I swing my head back and forth in my metal hospital cot singing ‘baa baa back shee hav oo any woo’ and it shifts the pain threshold. The world spins and the rhythm sends me swimming elsewhere. Anywhere. Everywhere but where it hurts. Swish, swish back and forth. Until I am stopped by a nurse for disturbing the