Tag: intolerable cruelty

The trouble with ‘cures’

My good friend, writing peer and all round genuinely awesome woman, Carly Findlay has today written for Daily Life about her experience with false cures and how, at the end of the day, she doesn’t want to be cured of her rare and painful skin condition Ichthyosis. Like Carly, I’ve never wanted to be cured from Cystic Fibrosis. I’ve wanted to be free of it, which is different to a cure, but this dis-ease has shaped me into the person I am today and I’m proud of my ability to survive against often insurmountable odds. For The Two Carlys (like The Two Ronnies, but hotter), life is a gift.

Carly was kind enough to ask my opinion about how the lure of false hope can be a soul destroying experience – not only for the person suffering from an illness, but for their families and friends. You can read Carly’s article HERE and her blog can be found HERE where she writes prolifically about disability rights, appearance diversity, her personal battles and victories, and other very important issues, including her impending wedding – YAY!

Here is a photo of us taken last year when we met in Melbourne. It had been a long time coming. We share far more than our names.

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Autopsy of a marriage

Thrumming away from each other like broken mountains,

by your second year, you had been excommunicated.

Wrought by the passage of God, your clipped speech and ruddy cheeks

made it hurt to be alive.

 

Her dowry – platelets swimming under skin and a fertile womb.

Yours – a cellar of wine and an insistent mother whose teat you never could retire.

At one time you were fleshy hips and languid tongues,

begging eyes and fast of foot across the floor.

 

With a God she could never swallow, nor your stewed kicks –

pissing on tyres your watermark

only to lurch into clarion cries of cocky rapture.

Days of wine and roses capsized into nights

of swollen heads and an ugly mouth.

 

Now foreheads cowl in fury –

screaming at divorce lawyers who bathe in the blood of your children,

you’ve learnt how to torch yourself with mediators papers –

slack words spilling from the moorings of your mouth

with cataracts of guilt you will never feel.

Where was this when I needed it?

Today I found the most amazing resource for people – young people – who have ileostomies and stomas (poo bags). You can read about my experience with my poo bag HERE. Ever so glamorous, though it was really the most harrowing time of my life and I physically and spiritually felt a part of myself disappear. A part of my womanhood and a massive chunk of my dignity where I lost myself. I guess that happens when your vagina is peeled like a grape, you have to have your bowel redirected in the form of a poo bag and you nearly die.

There is a lovely and courageous young woman called Talya blogging over at Feeling Ostomistic, and here are her top ten things people don’t tell you when you have an ostomy. The only point of difference is that I still have a normal belly button – I just have a gnarly scar next to it.

If only this support was around when I had my ileostomy, then I really believe it would have made my whole experience a little easier to bear knowing there was another young woman out there who was struggling just as I was. Knowing I wasn’t alone. Because I truly felt it. Talya is beautiful, brave, boisterous and I hope she keeps blogging forever. The world needs her.

Topography

She sits by the windowsill –

window seat holding her shearing form.

Fingers of sunlight splay across her back

and she smells tuberose on the morning air

as her body is swallowed by the full throat of summer.

 

Shifting her form to a gentle lean,

she spies a framework of desire

where the language of hummingbirds between webs of light

moves faster than the bay of the moon.

 

She swings her face towards the floor,

unknotting her legs from unfeeling.

Solemn of face and swollen of neck,

she looks to her breast – just the one.

 

A cleave in her chest – a gift.

The skin on the other like corrugated tissue paper –

the markings like an embroidery of truth

where she tells herself that it is just topography

and that she is safe.

Being woken at the gates of heaven

Candy in a bag –

recollections of a need

when my mind was an unswept room,

my body a husk, full of holes so thick

I thought I would leak.


Needles in my bedside drawer,

ampoules ready to be

snapped off at the yellow line –

that crisp and thrilling pop.


No greater satisfaction,

nor ever surpassed.

Then the plunge of a needle

into flesh, digging down into muscle.


The other night, my body stockpiled opiates.

Nurses artfully depressed a syringe of Narcan

to bail me out of a deep unbreathing.

Two breaths a minute – my lazy lungs.

Nurses in a U shape around my bed –

‘you’re having some trouble breathing, love.’

Hell, I was between worlds dreaming about

tangerines and the biting aroma

of vodka, parcels and angels milk.

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Death Cafe Brisbane – this Saturday!

I know it’s short notice, but I only bit the bullet on the weekend about curating a Death Cafe this Saturday 20th December. I’d love it if you could join us at The Three Monkeys café for coffee/chai/milkshakes and cake/nachos/pizza in West End from 2-4pm.

I want to let you know that I’ve had a couple of enquiries about whether a death café is a good idea for people who are experiencing a very recent bereavement. My short answer would be no. Some conversations may be triggers for very raw emotions, and while we’re a supportive bunch, we are not equipped with a psychologist or a grief counsellor. What the Queensland Death Care Collective can do is refer you to qualified practitioners so you can find the right counselling service for you. When you’re not feeling so raw, perhaps you can come along to the next death café, which I’m planning for February. We would love to have you join us 🙂