You Are Not a Burden
(Despite
(the sacrifices
(carers are truly
(held to ransom by
(economic rationalism and
(the right to
(your story as
(the opportunity cost of
(accessibility
(surgeons are
(mothers allowed to grieve
(for every child deserves
(taxpayers propping up
(the business of business
(proving reasonable
(parents
(consider
(genetically eradicating the sick
(wages will reflect
(a world without disease:
(You are not a burden.)
scientists dream)
one’s productive capacity)
to be invisible by 2050)
if one has a sufficient quality of life)
screening to make more informed choices)
and necessary supports)
….is business)
an unsustainable system)
to make a wish)
for the children once imagined)
as superheroes)
though outside the budget)
exorbitant medicines)
being our brand strategy)
death with dignity)
buying the myth of trickle down)
drug companies)
our unsung angels)
they have made)
all of this.)
NaCl
..s.a.l.t.. made
my lips skin limbs
brined in
an ocean body of
malformed genes
ΔF508/ΔG551D
and cellular rust
smelling of rot and <preservation>
twinning sick with survival
wîckered man: stick figured
hãir triggered, grassy eÿed
this mix of thatch and daub
will tie itself in knøts
shells shocked into new bones
will argue with the flame
each night again, and lose
but with its nots and shalls
and wills, i will each mōrn
glean fresh twigs and pond reeds
dried vine twine, bullrush weeds
to weave myself again
this shânty built
of shame and pragmatism
i try to sti- -tch
new dna, re-upholstering
in different
fabrics the colour and
texture of oxygen
but
the nēēdles
are not fine enough
my fingers ache
and shake
too much from the meds
so my dîsguise is
your ignorance
the çhewed up inside of
mouth
the smįling
deflec- tion…
illness is disappearance
without the perks of
witness protection or
the glamour of starting anew
i am stored in salt, which sustains and
corrodes in equal measure.
Ode to Nina
Trapped beneath a sultry Brisbane
sky, I’m dancing with the ghost of
Nina Simone, high above the river’s
wet mouth, balanced on a snake
arch of bridge that could swallow
a ship’s tongue, and from its great
height had flung generations of the
broken-hearted to their chosen fall
into the spill of ink below, and Nina’s
cheeks are all aglow, she‘s leading
me on some crazed version of the
jitterbug and I can’t keep up, in fact
I can’t breathe at all… and if a tree
falls in the forest but nobody was
there to post it on Instagram did it
ever really exist? All I know is on that
bridge my existence subsisted on
listening to Nina’s persistent howling
wind rubric, her sermon the bass line
of thunderclap music, so before her I
kneel, splintered on flint-hard concrete
and steel, the bones of my arse — two
sharp points, my joints in battle like
grinding glass, they begin to fold in,
like origami limbs paper-soak choking
on salt and mucous stuck on tissue
chewed to scar. I am drowning myself
from the inside.
Hey Siri, what’s the survival rate for a double-lung transplant?
Hey Siri, what’s the survival rate without a transplant?
My mate said if I got transplanted Shirley
Bassey’s lungs he’d take me on tour to
Vegas. But up here it’s Nina who’s pouring
her greatness into me, taunting me,
flaunting that blade in her voice that is all
Buddha and Satan and God and Athena
and her own, those precise piano hands
a vice grip on my hips, her fingers dipping
into my sea salt skin thrusting me like sin
over the railing, out of the sky as bait,
she’s falling with me, my neck
a branch to swing from, singing,
Sinnerman, where you gonna run to?
Sinnerman, where you gonna run to?
and she’s whirling now, a fury of notes
and quavered rage that boils the sea
and its veins, frees the ocean gods of
their burdens and when I hit the surface
holds my head under to release my sins.
Nina Simone always understood the pain
of difference and of indifference,
she said, Go to the devil.
So I ran to the devil, he was waiting.
And my terrible decision was made.
Damien Becker is a community development worker, disability advocate and poet from Murwillumbah, NSW. He lives with cystic fibrosis and is a double-lung transplant recipient. You can find more about Damien on Instagram.