Here we are at the enclosure, watching
. a pair of giraffes in the distance, slowly
nodding as they walk away. Fences
. like these keep us separate from the animals,
and the animals from us. My heart
. so far is good. I’ve not followed my mom into
sudden agony and surgery. The okapis are threatened
. and are here. I love their deep brown hides,
their zebra legs, their quietness. I’m torn
. between reading the signs and just standing
here, watching them breathe. All our group
. have Marfan, but it doesn’t have us.
Nearby, an ostrich is lowering itself gently
. to the earth, its neck honest and determined
as a spine. I want a shirt that says no I don’t
. play basketball. I play the clarinet and dance.
There’s surgery and medication. There’s a drift
. of snow leopards, a pride of lions. We raise
money. We want to save ourselves.
What use is music your body can’t hold,
that can’t take you from this world?
I met a man who wouldn’t play the drum
until he’d stroked it, given thanks to the doe –
we have lost this. All night, the freeway’s racket,
its metallic breath. Any day now, I could leave.
O God, you do not exist –
but you are hidden in this tumour,
this slow-leaking valve of my heart – your gifts,
they have broken me into understanding.
As a child, I would leap into my own
little rituals of numbers and joy.
The icon offers the empty space at its centre.
I only love this world because I love the other.
We are this knot in a string whose ends extend
forever in both directions. The compositions?
I’d not change a note. But I could have said less.
1944 – 2013
“I would be giving in to a myth of sameness which I think can destroy us” – Audre Lorde
sometimes I wake into a quiet sadness
blood pooling in my mouth
bones on fire – this is the worst
and best thing that has ever happened to me
one morning I couldn’t walk
the white coats
gave me a chair –
I became an adult
while they tried to work it out
the closest was marfanoid habitus
til a sudden knife in the chest
gave me enough points for the full diagnosis
hearing it, I felt sick
I have mitral valve prolapse, regurgitation
multiple pulmonary nodules
I get short of breath and produce
excessive mucous (clearly I’m very attractive)
my joints are hypermobile
and dislocate (they go out more than I do)
I’m the walking rubber-band
comments and names at school –
don’t cross your legs, you look disgusting
spider-woman, anorexic slut
other things I can’t write
doctors accused my parents of abuse
threatened me with feeding tubes –
ironic, it was only all this pointing at my bones
that gave me an eating disorder
since I joined Chronic Illness Peer Support
they can’t shut me up
we go on camps, socials, talk about whatever we need to
I meet the most incredible people
and call them my friends
(my dog helps me enormously with my grief)
I’m so motivated people find me exhausting
started studying nursing
but they told me I was too unwell
cried so hard I broke a rib – now it’s psych
I haemorrhaged every day for eighteen months
clots bigger than my hand
doubled over in pain until I passed out
I think about my future a lot
imagine a husband, two golden retrievers
a blue house by the beach, veggie patch
all the people I will help
life is extraordinary and so are you
now look at this photo and tell me
you still want sameness
‘Lindsey’, ‘John’ and ‘Jess’ were published in Music our bodies can’t hold (Hunter Publishers 2017). They have republished here with the author’s permission.
Andy Jackson lives in Castlemaine, and has featured at literary events and arts festivals in Australia, India, USA and Ireland. He was shortlisted for the NSW Premier’s Prize for Poetry for Among the regulars (Papertiger 2010), and won the 2013 Whitmore Press Manuscript Prize for The thin bridge. Andy’s most recent collections are Immune Systems (Transit Lounge 2015), and the chapbook That knocking (Little Windows 2016). His new book, Music our bodies can’t hold (Hunter Publishers), consists of portrait poems of other people with Marfan Syndrome.