my father’s body useless, which had 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 father’s parents and left the room.
My father stayed in that iron lung for a year. From there, he
seduced his nurse and married her three years later. Then they had
my brother and me. When my parents’ marriage went sour, he
convinced another woman to take up his cause, married her and
had two more children. My father was left 95 per cent paralysed,
but I never once heard him complain. Nor did he ever stop fighting.
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 adven-
tures for two. I had a baby at 23, was a single mum at 24. I moved
countries twice. At 40, I left a prestigious posting as the artistic
director of Sydney Writers’ Festival to follow my dream of living in
New York. There I had a high-flying job working with many of the
world’s greatest living literary figures and Salman Rushdie as my
boss. It was all I had dreamt of — and then some. In New York
City, one of the toughest towns in the
world to make it in, I had made it.
Life-changing moments happen one
ordinary instant after the other, until one
instant is oddly not ordinary and then,
shockingly fast, everything has irrevers-
ibly changed. Given my father’s strug-
gles, you’d think I would have been
prepared 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 learnt nothing at all from my father.
Grace was the very opposite of what I could conjure.
One Sunday in 2009, a few weeks after my birthday, I’d been
sitting on my bed in my Harlem apartment, bent over, 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 and headed towards the park.
Even though I’d stretched, as I started up the hill at the northern
end of the running track, I felt as though two five-kilogram weights
were strapped to my ankles. At the top of the northwestern hill, I
found myself increasingly unsure if my feet would land where they
were meant to. After a few hundred metres, I couldn’t feel my legs
moving at all. It was as if I was completely disconnected from the
ground, moving on two prosthetic limbs. Eventually, I stopped,
bent over and put my hands on my thighs as I’d done hundreds of
times after crossing finish lines. 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, tramping through
the foliage like a deranged Lady Macbeth, gasping for air in panic
and shame with tears streaming down my face, looking at my
hands, wondering how on earth this had happened.
Two days later, I wheeled a little overnight suitcase through the
glass entrance of NewYork–Presbyterian Hospital. I gave my name
to a nurse, who checked me in and wrapped a plastic tag around
my wrist. Soon I was lying in a narrow bed, naked except for a
loosely tied hospital gown, 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.
It was a couple of days and a slew of medical tests later that the
doctor who’d written on my chart came back to tell me I had
multiple sclerosis. He said I should consider moving into a home
with no stairs, like the places I’d grown up in with my father. It
didn’t matter that I could hardly stand, I wanted to get up and
king-hit him across the ward. 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 supposed to be invincible.
But I wasn’t. I was alone in a foreign country and the dream life
I’d been living began to quickly unravel. Suddenly, my life was
being guided not by literary geniuses, but by pharmaceutical copy-
writers. I started receiving large parcels
in the mail: pharmaceutical brochures
written in 16-point type packaged with
pens and DVDs. They depicted people
‘just like me’ peeling vegetables or
packing their bag for a family holiday.
Living their lives so fully with MS. But
my life was not peeling vegetables or
going on family holidays with
a container to dispose of medical sharps
anda letter from my doctor explaining
all the syringes in my hand luggage.I was meant to have a big, skidding-around-corners-and-grab-
bing-it-in-fistfuls kind of life. I was devastated to be contained by
this. I had watched my father in his wheelchair. I didn’t want to sit
down; I wanted to keep on with an outrageous adventure big
enough for both of us. My life had not been sheltered and nothing
had ever stopped me before, no matter how daunting or difficult.
Yet I had allowed myself to be utterly undone by what was
happening to my body. I was stuck. I contemplated suicide.
I wanted to throw a hand grenade at the world.
Sometimes lifelines come from the least likely of places, and
sometimes it’s the simplest words that take on the greatest meaning.
In the depths of my darkness, the late writer Philip Roth said to
me: “It’s here and it’s now. You have to focus on that. It’s here and
it’s now. Nothing else.” Simple words, yet so deeply profound. It’s
here and it’s now. He was right. There is nothing more. Today we
can deal with. Tomorrow, none of us knows. Those words have
become my silent mantra and have enabled me to put the shards
of my shattered life back together piece by piece. If my father
taught me anything, it’s that we’re as free as our minds let us be.
No one can say anything for sure when it comes to MS — it’s a
highly idiosyncratic and unpredictable disease — and chances are
it probably will stop me one day. Until then, it’s here and it’s now
and I plan to keep on having adventures for two: living a life big
enough for my father and me.
Diving into Glass by Caro Llewellyn (Hamish Hamilton), $33.
If you or someone you know is struggling, you can call Lifeline on
13 11 14 or visit lifeline.org.au.“The late writer Philip Roth said to me: ‘It’s here and it’s now. You have to focus on that.
Nothing else.’... He was right. Today we can deal with. Tomorrow, none of us knows.”VIEWpoint
53 HARPERSBAZAAR.COM.AU April 2019