CYSTIC FIBROSIS

Don’t Have a Bird

Sandi Parsons
Sep 17, 2019 · 14 min read

Some friendships you never forget

An outstretched hand with a ladybird on the tip of the middle finger.
An outstretched hand with a ladybird on the tip of the middle finger.
Image by Hellinz from Pixabay

There are so many rites of passage you’d already missed out on, and the school ball is destined to become another item on that ever-growing list. You tried to delay the inevitable until every breath from your lungs sounds as if Cystic Fibrosis is cackling through you. So with a resigned air, off to hospital you go.

Although you’ve been denied the opportunity to attend the ball, no one is prepared to give up the ritual altogether. Instead, your sister Mel, your mum and I, arm ourselves with my ball dress, a curling wand and a bag of makeup. Together we crowd into your hospital room.

We giggle while we do your makeup and curl your hair, then, finally dressed and ready to go, we start our photoshoot. You shine with happiness. As the chief photographer, I have a most important task: to make sure your bare feet never appear in any of the photos to spoil our carefully crafted illusion.

There is a sense of belonging; that someone understands you when they bestow a nickname upon you. But I don’t get mine.

“Why Bird?” I ask. “I’m no bird, I’m all woman.”

You roll your eyes and explain it again. “Bird as in ‘Flip the Bird’ or ‘Don’t have a Bird’.”

“I’m pretty sure that’s ‘Don’t have a cow’, and it’s from the Simpsons.”

Your reply is swift: “In the olden days, before Bart turned it into a cow, it was a bird. Besides, you can’t argue that you’re kind of grumpy.”

Your expression is smug, unmoveable. You are utterly convinced of your righteousness and you laugh as I stomp off.

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1992

Journal writing holds no appeal for me. Instead, I write extraordinary long letters in exercise books to you. I add badly drawn illustrations, jokes and the occasional piece of trivia — anything to fill the pages because your golden rule as my reader is that we cannot discuss anything written until the exercise book has been filled, presented and read. A bonus feature of this golden rule is that it encourages writing frenzies that carry on long into the night.

You are a perfect ideal reader because I get to watch and judge your reactions as you read. One night, as page after page sees you dramatically perform an exaggerated eye roll, you finally look up, throw your hands into the air and exclaim, “Six pages! For six pages you went on about how I rejected the bread.”

I give my best deadpan expression in return, and I take a deep breath before I inform you, “I stand by my statements. It’s a terrible thing to have one sole purpose in life. For those poor lost slices of bread, all they wanted was to be eaten and instead they were faced with rejection.”

I flounce from the room before I lose my composure.

It’s an afternoon punctuated by giggles and coughing as we paint our faces. We complete our look with skin-tight jeans and t-shirts. I’m a dashing Paul Stanley, my curls allowed to swing loose, while you are the skinniest Gene Simmons I have ever seen.

When I phone ahead to order pizza, I grandly announce that KISS will collect this order. We’re used to people staring when we’re out in public. Usually, it only takes one little cough to start the ball rolling and from that moment onwards you collect looks of disgust that suggest, without subtlety, that you are a walking health hazard.

Tonight the looks are different. People stare and laugh in delight at our antics.

When we arrive at the pizza shop, we discover our pizza is not ready. Instead, poor Ross not only has to make our pizza post-haste, but he’s also lost five dollars betting the call was a prank.

I feel my eyelids start to close and know that my bed is calling me. The party is no longer raging, and I feel confident that you can take charge. After all, if there’s any trouble you can always wake me.

In the morning, the house isn’t in an apparent shambles, and I am reasonably happy.

Until I venture outside.

There, on the roof, is our garden furniture. The table, chairs, even a resealed carton of beer. Everything arranged neatly, as if for a private party. I wake you, needing an explanation, but you have none. I make a mental note never to go to sleep and leave you in charge of a party again.

I don’t heed my own mental note.

The following week as I try to slumber, there is a procession of people coming into my room to get ‘just one more coat hanger’, and I know that, once again, you’re up to no good.

“I’m having a bleed,” you say, announcing the obvious as you gracefully lean over the sink and spit out a mouthful of blood. You look calm and collected as you lean and spit at regular intervals.

“Do you ever resent it. That I’m so well and you ⁠ — ” I wave my hand toward the bloody sink instead of saying the words out loud.

You shake your head as you spit. “I don’t resent you, Bird. I feel sorry for you.”

I’m so stunned for a moment I don’t say anything, then an awkward “Huh?” bursts out.

“Everyone’s going to die. You’ll end up all alone. I don’t want to be the last one standing.”

You fail to provide me with coherent directions, so I drive around the roundabout in a continuous loop. You say nothing, but even in the darkness, I feel you frown in my direction. I take potluck and exit the roundabout randomly, only to find it’s a cul-de-sac.

As I turn, I spy a guy through his lounge room window. He’s naked, fresh from the shower and I presume he’s about to get dressed. A glance in your direction reveals you haven’t seen him yet.

Subtlety has never been my strong point, but you take notice as I drive up onto the lawn and flash my high beams on the naked guy.

You burst out laughing as he drops to the floor.

I plonk myself onto the lounge and school my face into a blank expression. I look you dead in the eye before I speak. “I’m not inviting you to my wedding.”

Your arms fold defensively across your chest as you glare me. “That’s not very nice. Why not?”

You look so indignant it’s a struggle not to laugh. “Because, bridesmaids do not get invited, they are expected to be there.”

You squeal with delight.

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1996

I stand in your lounge room, my enormous belly preceding me. Mel drops to one side, cups her hands and bellows “Hello Baby!” directly into my stomach.
My belly lurches violently, as my baby scoots as far away from the bellowing as possible, which in this case is right into your hands.

You murmur soothing words and stroke my tummy’s lumps and bumps, wondering if a little elbow or foot is prodding back at you.

With you getting all the attention, Mel demands to change sides, but once again she cannot contain herself and bellows into my belly. I feel my centre of gravity shift as my baby moves to avoid the noise.

You stick your tongue out at Mel. “He likes me best.”

You raise one brow when I ask if you remember that episode of Roseanne where her sister gets married, and the baby cries and her milk came in.

“It wasn’t that unrealistic,” I add.

As if on cue, Jarryn cries, and wet spots appear on my t-shirt. We both start to giggle, causing Jarryn to cry louder, which in turn makes the wet spots on my shirt grow.

It’s a never-ending cycle of mirth.

You settle yourself at the dining table, skipping any pleasantries. “I’ve decided,” you announce, “that it’s time to go to Melbourne. To go on the transplant list. If I wait much longer⁠ —” Your words trail off, and you shrug your shoulders.

I should have seen it coming. I should have noticed. But as a new mother, I was distracted.

I don’t trust my voice, so a nod is my only response.

I research ‘flip the bird’, finding what I believe to be an urban legend which contains gruesome details about two warring parties, and the subsequent removal of index fingers. The resulting attribute saw the wronged party flipping their middle finger to indicate they could still shoot arrows or ‘pluck yew’.

I print this off and paste it into the latest exercise book I have written for you, along with commentary concluding that I remain unconvinced that ‘don’t have a bird’ is a real saying and that you must have it confused with ‘flip the bird’.

I pack the exercise book along with a stuffed Big Bird for you to take to Melbourne.

A phone call in the middle of the night is usually symbolic of bad news, yet I instinctively know that this phone call does not herald doom.

On the other end of the phone, Mel confirms my feelings — you’ve been offered lungs and are off to surgery.

I watch you battle with Jarryn, up and down the hall you both race, lightsabers clashing. I think the last time I saw you run was in 1986.

How ironic is it that you can now run, just as I start to struggle?

“Chronic rejection.”

I don’t hear the rest of the sentence; it is a blur of sounds. I don’t need to hear to understand the complications and consequences.

After a while, you speak again. “I was offered a second transplant if I want.”

My head snaps up, and we lock eyes. I know what you’re about to say, even before you say it.

“I said no. I figure I had my shot, and it didn’t work out. It’s not fair for me to take that chance away from someone else.”

I could argue, plead, even beg, but I know it would be wasted breath. I might be an angry bird, but when it comes to having a stubborn streak, yours trumps mine.

I know that you have wrestled with this choice and I need to respect it.

“Bird the Word!” you chirp as I walk into your room.

Before Jarryn can ask, you hand him the control to your bed. He zooms you up to the sky, then tilts both head and foot sections until you are nearly folded in half. He brings you down and jumps up on the bed to repeat the process.

“You have Aunty Julie wrapped around your little finger,” I say.

Jarryn holds up his hand, carefully inspecting his finger.

“No I don’t,” he says.

We laugh, and Jarryn joins in, although he doesn’t understand why he’s laughing.

Seconds later a nurse stops by to give us a noise warning.

I drop Jarryn at school and head to the tattoo parlour. I stand for ages, looking until finally, my eyes settle on a ladybird.

Something inside clicks, I’ve found a ‘bird’ I can live with.

The moment the tattoo is complete, I go straight to the hospital to show you.

It seems that every time I stop by, your hair has gotten progressively shorter. Your new buzz cut is extreme, and I don’t understand.

You wave your arm breezily, dismissing the loss of your hair is a matter of no importance.

“I got sick of having bed hair,” you state as if that is all the explanation I need.

I run my fingers through your wispy hair while I hold your water cup. Jarryn plays at my feet. Today is not a good day. Today you drift in and out of consciousness.

Aware that something is different, Jarryn looks up and asks me if Aunty Julie is going to die.

“Yes,” I say. “But not today.”

He accepts this and continues to play.

Even when you’re dying, you are stubborn, clinging to life one breath at a time. It’s been 24 hours since I dropped everything and dashed to be here.

In these last weeks, you’d said you wanted everyone to get along, and as we talk and remember something silly you once did, we share a laugh, and it’s in that moment that you die.

You waited and chose the perfect moment to stop breathing.

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Image Credit Sabrina Butler

I speak of Aunty Julie to Jarryn, and he frowns. I show him a photo, and he nods. I don’t think he can remember you, but I do, so I tell him stories of how he’d sit on your bed and zoom it up to the sky.

Jarryn walks too fast. I need him to slow down, but I no longer have the breath to tell him. I sit on a wooden bench. watching as he scoots down the shopping centre, not noticing I’ve stopped.

Once it was me who was young and impatient, while you sat, gasping to fill your lungs. I wish I could tell you I’m sorry, that I didn’t understand then, that I do now.

As I surface from my dream, I’m convinced someone is squirting the back of my throat with a water pistol. I cough, trying to clear my mouth, but it continues to fill with liquid. I spit into tissue after tissue, and it’s only as I wake properly that I realise I’m having a massive bleed.

My heart beats faster as my mouth fills with blood, again, and again.

When it finally stops, it takes a few moments for my heart to stop pounding. I look a fright, there’s blood throughout my hair and I’m surrounded by crimson tissues.

I think of you, and of how calm you appeared, casually spitting blood into the sink, giving grace to this act of betrayal by your body.

I wonder if this is another ‘thing’ that I will have to get used to.

Hospital in the Home is no longer an option, and I’m forced to spend the time in hospital. Worse, now I need supplemental oxygen.

At the end of two weeks ‘Uncle’ Gerry pops in to have a word with me. It is, he says, a conversation he thought he’d never have to have with me.

My heart stops beating for a moment because I know what’s coming next. It’s the chat you never want to have with your specialist.

You know the one I mean.

The one where he tells you there is nothing more he can do for you, that’s it’s time to start thinking about a transplant.

Every step I take in your footsteps increases my anger. You didn’t tell me that not being able to breathe hurts. I think of all the times I pushed you to do things, to go out, made you participate. How many times did I tap my feet as you tried to catch your breath?

All you ever wanted to do was sit. I couldn’t figure it out — sure, you got a little out of breath, so what? You’d catch your breath next time you sat down. It was no big deal.

But this task of continuing to breath is a big deal.

My ribs ache. My back cramps. My head pounds.

Trying to catch my breath is terrifying. As I gasp, struggling to inhale, my heart hammers and silent fright shudders through me. What if I can’t catch my breath again?

What if this is it?

Breathing is such damn hard work.

A quiet voice in my head reminds me I’m not actually mad at you. I’m mad at myself. I’m frustrated thinking of the times I made you go out when I should have stayed home and rubbed your back, or brushed your hair.

I’m horrified by my stupidity. I always thought Cystic Fibrosis picked you off because you were weak.

I couldn’t have been more wrong.

This dying business is far from easy. Yet you died as you lived, quietly and with dignity.

Me?

I’m busy whinging and whining to anyone who will listen.

I gasp for breath, and all I have done is walk, ever so slowly, to the bathroom. I have the oxygen cranked up on the highest setting, sending a hurricane whirling up my nose.

I can’t catch my breath.

I sit on the edge of the bathtub gasping. I still have to shower and wash my hair. It dawns on me that life would be easier with shorter hair, so I vow to cut it. An image of your buzz cut flashes into my mind, and finally, I get it.

There’s nothing glamorous about dying; glamour has no place.

All that exists is trying to be comfortable, trying to survive.

May 2011

I don’t know how you coped while you were waiting. I didn’t ask. I didn’t think that question would ever apply to me. I was supposed to be bullet-proof. To overcome the odds.

I refuse to believe that I am waiting for someone to die. Instead, I wait for a family to say yes.

It’s not like waiting for Christmas.

I’m scared I might not make it.

I wake in ICU, the pain pulsating through my body in unrelenting waves. For the first 48 hours, I tell myself, Julie survived this, and so can I.

My mantra repeats inside my head. The words looping, rolling and colliding with the hallucinations the pain medication creates.

No wonder you only wanted to do this once.

I have so many more questions now. Questions I didn’t ask you when I had the chance. Too stubborn to believe they would ever apply to me.

I want to sit with my best friend and ask about bras, scars, tingling sensations and numb nipples.

Instead, I’m stuck having clinical conversations.

The realisation dawns on me as people walk into Tom’s memorial. There are too many faces missing from my childhood. Although, I am not truly alone: I still have friends with Cystic Fibrosis, but of those tightly bound friends whose lives intermingled outside the hospital setting, the reality you visualised for me when you were seventeen has now come to pass.

I am the last one standing.

I always saw each year I survived as a badge of honour, of beating the odds, I never considered the cost.

I mourn, not only for Tom but for everyone I have lost.

As I walk past an angry birds display, the wording on the lunchbox stands out, ‘Bird is the Word’.

With crystal clarity, I hear your voice inside my head chirp, “Bird’s the word!”

I pause. You would have had way too much enjoyment presenting me with an Angry Bird, but I don’t need a lunchbox.

Procrastinating, I look at my phone and realise it’s your fortieth birthday, so I buy it anyway.

We shared a love of Stephen King novels, and with the movie version of It playing in the cinema, I figure it’s the perfect time to revisit this old favourite. Besides, I haven’t read it since we were housemates. After all this time it will be like reading a whole new book.

I have the audiobook playing as I drive home from work. As clear as day the narrator says, “Don’t have a bird.”

I pull to the side of the road; my shaking hands press rewind to check I haven’t misheard.

I find myself laughing and crying at the same time.

Laughing, because Don’t Have a Bird did originate from the olden days just like you said. More precisely it came from the 1950s in the town of Derry as created by Stephen King.

Crying, because the knowledge arrived eighteen years too late.

Don’t Have a Bird was first published on Medium on September 18, 2019.

It was republished in Frankie Magzine, August 2020 and Growing Up Disabled in Australia, Black Inc Books 2021.

Sandi Parsons lives and breathes stories, as a reader, writer and storyteller. She believes that every child is entitled to see themselves accurately represented in literature and the arts.
Sandi’s creative nonfiction has been published in MiNDFOOD and Frankie. She is a contributor in the Growing Up Disabled in Australia Anthology.
You can find her on the web or subscribe to her newsletter & recieve a free copy of The Last Walk & Other Stories

Speaking Chronically

Life with Cystic Fibrois and a double lung trnasplant

Sandi Parsons

Written by

Sandi Parsons lives and breathes stories as a reader, writer, and storyteller. Subscribe to my newsletter & receive my free ebook The Last Walk → bit.ly/3t0ZaG8

Speaking Chronically

Life with Cystic Fibrosis and a double lung transplant

Sandi Parsons

Written by

Sandi Parsons lives and breathes stories as a reader, writer, and storyteller. Subscribe to my newsletter & receive my free ebook The Last Walk → bit.ly/3t0ZaG8

Speaking Chronically

Life with Cystic Fibrosis and a double lung transplant

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