Tag: cystic fibrosis

A reminder from a girl I’ve never met

For over a week, my chest itched. Not just any part of my chest, but right along my transplant scar. I scratched until I bled, but the scores I made with my nails would not stop the sting in my skin, somewhere deep underneath muscle and bone.

Over time, I have learned to listen to my body, so when this happens – as odd as it sounds – I believe it’s my donor reminding me that something is amiss with my either my body or my spirit.

When you become a transplant recipient, you enter into a duty of care. My lungs are a shared responsibility between me, my donor, her family and the doctors who have kept me alive for close to fourteen years. And so the penny dropped last night – I needed to start respecting my body again. For far too long, I have played with fire with the manifestation of diabetes many years ago, for there are times when I look after myself and times when I want to forget about it because I have an obnoxious sweet tooth.

We had a little chat last night about what I could do and the first flag that waved in my face was exercise, closely followed by diet and the re-addition of daily meditation and yoga. And so this morning, with intention (and 2L of glucolyte), I went for a walk that tested my body and my mind. Hill climbs were the best and the most painful, but it reminded me that I need to keep going.

Don’t stop. Don’t stop for anything or anyone.

With the city cast in a thick fog, I took my donor for a walk this morning – a heavy breathing scenic tour of my suburb because it makes sense to me that everything I see, she sees. I am taking her on a journey that she never got to go on herself. But I like to think that she only sees the beautiful things – other peoples joy, flowers, sunshine, the ocean and the mountains, my owls, my books and my collection of tea and typewriters. And my words. I hope she sees my words. She has guided me time and again to words.

Allowing me to take her everywhere, I can only hope that we have met halfway. She has given and I have taken. I have lived and she has not. I hope she can forgive me and that I do her gift the justice it so wildly deserves.

Anatomy of a wake

Caoineadh for C. S, 1994

four weeks after we buried you

Burrowing fast as starved maggots under skin of
dead horses; bloated hide rising and falling,
like she’s still breathing.
An odd lurching, not quite heaving.

Her lips tell you otherwise.

burying you beneath the sun

Shadows brush us over; sift moods, lifting the stain of memory.
Sheathes the bones; each one captured, never to lash air for the
swathe of skin jigging on a puckered tongue.
I could always see that there was some alluring patina of leaving.

Just like the world before the bombs began to fall,
you must have been a beautiful baby, for I once asked your father —
‘When you held that wet, screaming bundle with its
crushed face and cottage cheese body, didn’t you smile just a little?’
He’s not Jesus, but he’s a gentleman.

Barely a hatchling, solemn of face, swollen of neck,
mol an oige agus tiocfaidh said
(praise the young and they will flourish).

People offer soft promises, welcoming you to the room of return, and as
history repeats, it turns on itself.

Why is it so fascinating to watch disaster unfurl?

The bowed lid of the coffin breathes on concrete coloured veejays.
Fathers, brothers, husbands sink into pews as the sky sulks,
dimpled cheeks and puckered lips whet by half-smoked cigars bulging with tobacco.
Yielding to crooked mouths, fathers, brothers, husbands barter with what they would
sacrifice for whiskey —
something, anything to not live with the ghost of a child who should have been.
But that’s dust on the wind, sugar on the lips. It’s air to gulp,
smoke to breathe, whims to flaunt, scotch to swig.

It’s where bones intersected by a dying river spread themselves thin,
breaking the keel of the eventide, where the indignity of death
waits for those who saw through woods of time lost.

Rolling heat clots my hair, and heavy fringes of lightning
bruise the sky as a storm skulks across the welkin.
We swim through the humid silence with locked fists,
where the salt of living is never matched by the sweetness of memory;
the brain all but a rippled knot of muscle peeled away by a brush of wind,
not torn like rough paper with unsteady hands.
Beneath a fuselage of memory, you’re the guest in this side show, so
sew your seed and cry what you reap.

putting you to bed

From eyelash to elbow to veined foot,
tucking you into bed as a father would;
corset tight,
stoppered to your hospital bed, fenced by white sheets.

Your wispy sack of a body couldn’t even make a ditch in the mattress.
How did I know that you would rest the just as awkwardly in your death box?

So you’d cough in the night-time —
pebbles in your throat,
blonde head hopping over the pillow
like a flat tennis ball.

The night would cut you through
‘til you had pebbles in your mouth.
That sick had you in its jaws and I
had not a string of frayed rope.

Aching to the roots of my molars,
I fumble for a stare; try to crank up a smile,
lips a concertina, voice a gramophone with a split needle.

Colours swept across cards seem like a dead man’s hand.
From where I stand I can see your eyes;
or how they used to be.

post

It’s that cleave of a canyon.
It’s the flashes of you in front of my eyes.
It’s the rushed goodbye, the crack of hearts splintering;
it’s the bone crushing echo of a fading breath.

Certainty

After listening to my friend Darren’s speech at the Cystic Fibrosis Ball last night, and hearing him regale how his Mum managed to look after two boys, work, cook and do everything that a wonderful Mum does, I had to post this about my own Mum, Jewel. Yes – named after the gem.

*

Certainty is often equated with death and taxes.

I can slice certainty two ways. I could say there are no certainties or guarantees when one is sick or broken, or I could say that there are many certainties and guarantees when one is sick or broken. I’ll not take sides, so I’ll take a little from column A and a little from column B.

Living with a dis-ease can be trying. There is the certainty that you will probably die. There is also the certainty that you will live. There is a certainty that nothing is certain.

The most important certainty I had growing up was my mother. She was and still is, the spine of our family. She would look after everyone else except herself. You have to remember that my mother was not only looking after a sick child, but she was also raising another as well as shouldering the deaths of C.F kids she had grown to love as her own.

I do not know how she did what she did with such grace. She would be up in the ward when I’d clocked off at the hospital school for the morning, then she’d dash back to Jindalee to make sure she was there at 3pm on the dot to pick my sister up from school.

Then she would have had to cook dinner for my father and sister.

Then she would have helped my sister with her homework.

Then she would have cleaned up.

After that, I don’t know what my mother did. It pains me to think about my mother’s private hell with this routine of wake up, get daughter ready for school. Make school lunch and ensure daughter has everything she needs for the day. Drive daughter to school, drive home to finish chores. Drive to the hospital and trawl for a car park. Spend time with other daughter whose I.V has tissued and packed it in. Go with daughter into treatment room to be repeatedly cannulated. Talk to other mothers and cuddle other kids. Kiss daughter goodbye, rush back to school to pick other daughter up, prepare afternoon tea and talk about the day which may include problems or celebrations for any achievements. Cook dinner, help with homework, clean up, talk to husband.

It’s like a bad dream and it loops over and over and over where I can see my mother sitting with me in Turner Ward. I can see her coming to collect me from the hospital school early so we can sit outside in the park with our lunch; I can see her biting her nails to the quick. What I can’t see – and what she wouldn’t let me see – is what this was doing to her. How I ache.

The other certainty was my Dad. He wouldn’t stay long – maybe twenty or thirty minutes – but he came up every night. If I was off my hospital food and wanted something special for dinner, like most kids I’d ask for KFC or Macca’s, but instead of bringing me a burger, Dad would bring enough food for all of the C.F kids – burgers, chips, chicken nuggets – everything. A bucket of Kentucky Fried Chicken and my father was an instant hero. Not many people know that he did these things. People know him as a generous man, but Dad would be the last person to tell someone what he had done.

He probably didn’t think much of it at the time, or ever for that matter, but to us – especially me – it was everything. To the nurses, he was just a man visiting his daughter in hospital. To me, he was my Dad and that meant sustenance through love – a relationship galvanised by actions where he offered wisdom through silence, and the ‘never give in gungerdin’ attitude I still look to whenever it is time to fall apart again.

I get cut open, my family stitches me back up.

brand new day, brand new year

‘seventeen has turned thirty-five; I’m surprised that we’re still living’

‘Cherry Bomb’ by John Mellencamp

I have fond memories of sharing earphones with my friend Amanda, listening to ‘Cherry Bomb’ in hospital when the lights were out. I never thought this song would have such literal meaning for me. Thirty five. I find it hard to believe that I’m here and most of my friends are not. In 2011, the number of friends I have lost to Cystic Fibrosis rose to 62. Some were the greatest loves of my life and Amanda was one.

I spent the day yesterday in a beautiful space, both physically and spiritually. A dear friend invited me to her farm in northern New South Wales and last night we feasted, laughed, drank lots of tea, demolished a cake and a tiramisu drenched in so much alcohol that I would have been over the legal limit; we waved sparklers among the fairy lights we strung up in the afternoon, popped party poppers and spent quality patting time with the two pups. Here’s what I woke to this morning. May 2012 be kind to you 🙂

first day at possum creek

Loose udders and mucus plugs

signals new life on the grass and clods of dirt.

Lilies dance on water the way flies hover over fresh meat.

A heifer drops its snout into the trough to drink –

not greedily, but more delicately,

sucking on the water in a docile way – surprising for a beast.

Pebbles, clumps of wild grass and cow shit

pattern a track to the paddock where a sabre calf

feasts on the edge of the grid;

lifts its head, turns towards its tail, then stares at me.

Unsteady of his feet, he runs to his mother

whose cries echo through the valley –

carrying that sound like some heavy burden.

From the verandah, I hear the shaking of wooden spoons in pots.

It’s time for breakfast – sweet, sticky black rice.