About the Book
Caro Llewellyn was living her dream life in her adopted home of New York, directing an international literary festival. Then one day, running in Central Park, she lost all sensation in her legs. Two days later she was diagnosed with multiple sclerosis.
Caro was no stranger to tragedy. Her father Richard contracted polio at the age of twenty and spent the rest of his life in a wheelchair. Dignified, undaunted and ingenious, he was determined to make every day count, not least seducing his nurse while still confined to an iron lung, then marrying her.
But when Caro was herself blindsided by illness, cut loose from everything she depended on, she couldn’t summon any of the grace and courage she’d witnessed growing up. She was furious, toxic, humiliated. Only by looking back at her father’s extraordinary example was she able to rediscover her own grit and find a way forward, rebuilding her life shard by shard.
An emotionally brutal memoir of family, vulnerability and purpose, Diving into Glass is a searing, often funny portrait of the realities of disability and an intimate account of two lives filled with vigour and audacity.
Contents
Cover
About the Book
Title Page
Dedication
Epigraph
Prologue
Chapter One
Chapter Two
Chapter Three
Chapter Four
Chapter Five
Chapter Six
Chapter Seven
Chapter Eight
Chapter Nine
Chapter Ten
Chapter Eleven
Chapter Twelve
Chapter Thirteen
Chapter Fourteen
Chapter Fifteen
Chapter Sixteen
Chapter Seventeen
Chapter Eighteen
Chapter Nineteen
Chapter Twenty
Chapter Twenty-one
Chapter Twenty-two
Chapter Twenty-three
Chapter Twenty-four
Chapter Twenty-five
Chapter Twenty-six
Chapter Twenty-seven
Chapter Twenty-eight
Chapter Twenty-nine
Chapter Thirty
Chapter Thirty-one
Chapter Thirty-two
Chapter Thirty-three
Chapter Thirty-four
Chapter Thirty-five
Chapter Thirty-six
Chapter Thirty-seven
Chapter Thirty-eight
Chapter Thirty-nine
Chapter Forty
Chapter Forty-one
Chapter Forty-two
Chapter Forty-three
Chapter Forty-four
Picture Section
Afterword
Acknowledgements
Crowdfunding Donors
About the Author
Imprint
Read more at Penguin Books Australia
For Jack
Life changes in the instant. The ordinary instant.
Joan Didion
Courage is being scared to death but saddling up anyway.
John Wayne
Prologue
Shortly after my forty-fourth birthday, I was stopped in my tracks running in New York’s Central Park.
Two days later, I wheeled a little overnight suitcase through the glass entrance of New York–Presbyterian Hospital in Washington Heights. I gave my name to a nurse, who checked me in and wrapped a plastic name and date-of-birth tag around my wrist. Soon I was lying in a narrow bed, naked except for a hospital gown tied underneath me with loose knots, as a neurologist scrawled a terrifying assessment of my condition on a chart, hung it unceremoniously at the end of my bed and left the room.
There was no denying I had been delusional. I’d lived my life like Lois Lane – taking risks and embarking on any number of shady pursuits in the name of truth and adventure, convinced that, just like the comic-book heroine, I had a caped superhero hovering at the ready to save me at the first sign of danger.
Worse still was the realisation that my hovering superhero was the same person who’d inspired my restlessness in the first place. My father always said, ‘I’m your fall guy.’ He’d taken a karmic hit big enough for the both of us and I’d assumed – counted on it, in fact – that this meant I’d skate through life unscathed.
It wasn’t that I thought his pronouncement would get me through without heartbreak or the other upsets and disappointments that come upon a person. I knew I’d have my share of those disasters. But I did believe, on the strength of my father’s say-so, that nothing physically would hurt me. His burden – not that he ever saw or talked about it that way – was heavy enough for the two of us. It wasn’t anything I doubted or even thought about much.
From an early age, I very purposefully set out to do all the dancing my father could not. I made it my business to have adventures for two. I gave myself to fate and became well practised in turning around the ensuing chaos.
I’d survived my father’s situation with humour and good cheer. Standing beside him in his wheelchair, I thought I’d learned everything I could ever want or need to know about humiliation and ardour.
Given all that, I thought I would be prepared for what happened when disaster snuck up and grabbed me like a thug in a dark alley. Yet when my moment came, cutting me loose from everything I thought I could depend on, it was as if I’d learned nothing at all. Grace was the very opposite of what I could conjure up.
But any gambler knows it’s rarely just about the cards you hold. My father was an ace up my sleeve, but that was all I had. The rest of it – what was in my head – was messed up.
When the doctor who’d written on my chart came back to tell me I should consider moving into a home with no stairs, like the places I’d grown up in with my father, I wanted to get up and king-hit him across the ward. He couldn’t know what was in my future just because I was lying in a hospital bed unable to feel my legs.
After everything my father said about being my fall guy, everything I’d seen him go through, there was no way a wheelchair could possibly be part of my life. He’d spoken. It was a given. I was invincible.
My father, Richard Dutton Llewellyn, was a twenty-year-old sailor when he was struck down by a debilitating fever. His temperature was so high, the ship’s captain put him into a tiny boat and ordered two of my father’s shipmates to row him to shore, a mile or so from where they were anchored off the coast of Adelaide. In the darkened spare room of his aunt Molly’s home, in the quiet suburb of Fullarton, he convalesced.
My great-aunt Molly stood four-foot-ten, but what she lacked in height she made up for with understated grit. Molly had been a Red Cross nurse in World War II and, when my father fell ill, it was her diligent and intelligent care that brought him out of his delirium quicker than anyone expected.
One day, shortly after his temperature returned to normal, believing himself to be on the way to a full recovery, my father told his aunt he was leaving the house to run a short errand at the post office.
She warned him not to overexert himself and he said, ‘I’ll only be gone an hour.’
The following morning he tried to reach for the glass of water on his nightstand. But nothing moved. Not his arms; not his legs. He couldn’t lift his head from the pillow.
‘I can’t move,’ he called out to Aunt Molly, who ran to his bedside. Though he later claimed he wasn’t afraid, I knew Molly, and she wouldn’t have run unless she’d heard panic in his voice.
When Molly hooked her arms under the crook of his armpits and tried to hoist him into a sitting position, he was dead weight. Upright, he slumped like a rag doll and gasped for air. Whatever was happening was affecting his lungs, so
Molly knew it was serious. She called an ambulance, which took him, sirens blaring, to the infectious diseases hospital.
By the time the orderlies hauled him onto a hospital bed, he was hardly breathing at all.
Incredibly, the key to the storeroom containing the hospital’s mobile equipment, including respirators and iron lungs, was not to be found on its hook in the nurses’ station. After frantic searching, a phone call was made to the matron, who’d overseen the night shift and had clocked out a few hours earlier.
The matron had lapsed in her own protocols and, after fetching something or other from the storeroom, put the key into her pocket and forgot about it until her home phone rang. Despite the emergency, she refused to return the key until her next shift, which was scheduled to begin later that day.
I always questioned my father about that part of the story. It’s unimaginable that someone could be so monstrous, that a single person could have sealed my father’s fate through such a wilful neglect of duty, but he never budged. The matron had the key. The matron refused to bring it back.
As a consequence, my father’s life lay in the hands of a roster of nurses, doing whatever they could without the one thing they needed to keep him alive, a ventilator. Each time a lack of oxygen caused his eyes to roll back in his head, the nurses slapped his face and prised open his eyelids and shone a bright torch into his marine-blue eyes, pleading, ‘Stay with us,’ over and over.
My father was almost dead. By now he needed more than a ventilator to keep him breathing, he needed an iron lung. When the storeroom key finally returned, the door was unlocked and one of the long rocket-like machines was hurriedly pushed along corridors, wobbling and clattering on its little wheels, until it was parked beside my father’s hospital bed. Four nurses used the bedsheet to hoist him inside. Sealing him in, they flicked the switch and listened as the machine’s bellows slowly inflated and began breathing for him.
By the time the doctor arrived for his rounds the following morning, my father had been moved into a quarantine ward. There his parents had spent a sleepless night by his side, after the long drive to the hospital from their farm in Strathalbyn.
Once he read my father’s chart and concluded a short examination, the doctor delivered his cruel verdict. Polio had rendered 95 per cent of the muscles in my father’s body useless and collapsed his lungs. The chances of him surviving more than a few days were next to nothing. ‘Don’t get your hopes up,’ he told my grandparents, and left the room.
I have always had a very particular image of my father lying in this metal contraption with only his head stuck out, as though he were looking up at the blade of a suspended guillotine, waiting for the drop.
My grandparents were practical people. At home they slept in single beds with two bedside tables between them. Their blankets stretched tight with perfect hospital corners, each of their flat pillows neatly propped up against the narrow headboard. My grandparents’ room was still, as if nothing ever happened in it.
I never saw a touch between them, but in this moment my grandfather, standing beside my seated grandmother, might have placed his hand on her shoulder and given it a single pat.
A year later, my father was still alive. Locked inside the tin can that breathed for him, he longed for a lot of things, but mostly to be back out at sea. He even missed the rigour and fastidious routine of ship-bound life, where he’d once been ordered to clean a deck with a toothbrush.
With nothing to do but stare at the scuffed walls, the chipped paint and the cracked ceiling, he could not help but obsess over the ward’s shabby state. Worst were the brass fittings – the doorhandles, light switches and plaques – blackened by use and time. ‘Filthy,’ he thought, and set his mind to scheming how to fix it.
It didn’t matter that my father’s new posting was aboard a single-occupancy ‘vessel’, he’d still be its commander. With the right co-conspirator, my father could bend just about anything to his will.
This is when he met a tall, good-looking trainee nurse from the country named Jill. She was in the final months of her apprenticeship, on one of the last rotations in her nursing education, when she was assigned to the infectious diseases hospital. He found her to be a willing participant in his ambitions and within days of her arrival she was cleaning the dirty fixtures with a soft cloth while he issued exacting instructions over the whooshing sound of the iron lung.
As she polished and scrubbed, and later as she administered his care, my mother and father told each other their life stories.
Everyone takes something different from their family’s narrative. This was what I took: my father, still game and commanding despite paralysis, charmed a nurse from inside his iron lung. She was equally up for a challenge, determined to protect the weak, to preserve the dignity of this vital young man, so she took up his cause and made it her business to follow his instructions. Why not? They fell in love. Three years later they were married.
They had my brother. Then I was born. They opened a successful art gallery. My mother appeared in Women’s Weekly magazine as Mother of the Year.
The message I took most to heart was: no matter how impossible it seems, how long the odds, words and a good story can help you overcome every single thing stacked up against you. A close second: do not dwell on your misfortunes, do not complain, do not feel sorry for yourself. No matter what befalls you, carry on like absolutely nothing’s wrong. At the very least, there’ll be a good story to tell at the end of it. Care for the weak wherever you find them, build an impenetrable wall around your own weakness so no one sees it. Grab each day as if it were your last.
They were irresistible ideas. Now I see not all of them were wise, but for a long time my parents’ lives seemed to prove they were. I took up their mantle. I fell in love with literature and made that my career. I turned mishaps and embarrassments into good stories, and read books like my life depended on them. Sometimes it did.
But the day my legs went numb on the running track in Central Park, every one of those lessons evaporated. As if they’d never been spoken. As though I’d not witnessed or learned a single thing standing beside my father in his wheelchair.
Out of nowhere I found myself lying in a hospital bed, in a country that was not my own, with no good story to tell.
One
I was a runner all my life. At school in Adelaide, I was in the long-distance team, running long and hard for miles, my eyes set to the ground, one foot in front of the other until my legs shook and felt like they’d buckle from under me. Usually runners choose long or short distance and stick to one or the other, but I ran track too. Hurdles, relay, 800, 400, 200, 100 metres. It didn’t matter what I ran, so long as I was spent when I crossed the finish line, bent over with my hands on my thighs, my chest heaving.
My life changed on a Sunday in 2009, a few weeks after my birthday. Heart-stopping, life-changing moments happen one ordinary instant after the other, until one instant is oddly not ordinary and then, sometimes, shockingly fast, the whole thing is irreversibly changed and you’re faced with the very opposite of ordinary.
Just like there had been forewarning of my father’s day of reckoning, there were signs for me too – but neither of us saw that day coming. Perhaps it’s for the better that, as things unfolded, it was just one tiny incremental change after another, almost unnoticeable. Until it wasn’t. Fifty years apart, we were both blindsided.
One ordinary instant after another until your life is no longer ordinary and your world lies in tiny shards at your feet and your next thought determines how well – or how badly – you will be able to piece those shards back together again.
Twenty minutes earlier, I’d been sitting on my bed in my Harlem apartment, bent over, chest on my thighs, tying the laces of my running shoes. Then I was down the stairs, out onto the stoop, where I stretched my calves against the tall steps. I walked to the corner of my street, took a left at Adam Clayton Powell Jr Boulevard and headed towards the park.
Even tho
ugh I’d stretched, as I started up the hill at the northern end of the running track, I felt as though two ten-pound weights were strapped to my ankles.
Butter-yellow light flickered through the trees, which had just begun their slow burn into rusted fall colours. I loved the way the seasons in New York turned from one day to the next. There could be thick snow on the ground and the following day – or so it seemed – daffodils would magically push through the earth to announce spring.
At the top of the north-western hill I found myself increasingly unsure if my feet would land where they were meant to. I pressed on, steeling myself against the fear creeping over me, hoping the sensation would pass. After about a quarter of a mile, I couldn’t feel my legs moving at all. It was as if I was disconnected from the ground, moving on two prosthetic limbs. Eventually I stopped, bent over and put my hands on my thighs like I’d done after crossing hundreds of finish lines in my life.
But I wasn’t across any line. Certainly, I had run no marathon. I’d hardly begun, but my chest was heaving. When I straightened up, I held my palms open to the sky like a person receiving communion. They were completely wet.
I couldn’t feel the wetness on my legs, only on my hands. It took me a moment to realise what had happened, but as soon as the confusion cleared, I walked into the bushes, gasping for air in panic and shame, tears streaming down my face, tramping through the foliage, deranged, looking at my hands like Lady Macbeth, wondering how on earth this had happened.
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