Tag: Mum

The day I met my donor

I never thought I’d do it. It’s been seventeen years, after all. And even if I did do it, I never believed it would be this hard.

Mum and I had talked for years about going into Births, Deaths and Marriages to see if we could find her, but today on my own, I went into a quiet room – so quiet the air had a tenderness about it – and scrolled slowly through a reel of microfilm until I found her.

Today I found my donor.

I have to say it again because it doesn’t feel real – I found my donor. 

I had always known the rudimentary details about her, but never her name or date of birth; her exact age or the the colour of her hair.

And now I know because today I ‘met’ her just for a little while. I even got to see a photograph and wow, is she exquisite. A brunette, with shades of red. I knew my donor was a brunette. Don’t ask me how – I just knew. She was married and we share the same initials when she still had her maiden name. She was twenty-two and we were born in the same year. Her name is unusual; I never would have guessed it. She was married. At twenty-two. And at twenty-two, she died.

Her funeral notice reads ‘tragically taken’. Because she was. She was taken from her family in the most tragic of circumstances in her apogee; her absolute prime.

But then she gave. Gave life to me and from what I understand, several other people.

I knew yesterday I was going to the library. Last night was, in spite or because of, the most restful sleep I’ve had in months.

This post is short because I’m crying rivers and trying to process something that is profound and so much bigger than me. The only trouble is that I’ve opened a door I’m not ready to close, but this shall do for today.

All I know is that she lives through me, and I through the wonder of her. Every breath honours you, C. I just hope that I have been enough, done enough, am enough.

My night without armour

May-August 1998

I was in the dying room. You know the one. It’s quiet. People slip in and out as though they were never there. Festering in a bed for three months, I had grown tired. My arms were the shape of soft baguettes, peppered with freckles like sesame seeds. Lips, a permanent shade of blue. Colourless fingers and toes – lily matchsticks, sans red ends. My hair had been falling out and I had forgotten how to use my legs. Twenty-one not out. For every year, I had lived four. I was a pale vintage just short of eighty-five. But I was sick.

Sick of white sheets. Sick of fluorescent lights. Sick of ward vagrants hobbling into my room, bottles full of piss hanging from petechia stained fingers, begging for my help; their gowns askew showing either flat and wrinkly bottoms or saggy, hairless balls.

Friday 21 August, 1998 8pm.

I watched Burke’s Backyard and said goodbye to my family for the night. Said hello to a morphine bolus. Like a little death itself, that pause from pain. I would feel every drop spread through each cell of my body; like someone had cast a hot blanket over me. It would anchor me to the bed, carving out a grave in the hollow of my mattress. Interweave me, you two thick threads, I would whisper; one flame licking the other in need of a partner. Show me mercy.

Saturday 22 August 1998. Midnight, or just after.

In rushes Daisy, my midnight oriental muse. She injects drugs into my chest to buy me another day’s grace so that one life may be taken and given to another.

Tonight it was to be my turn. Eight months and twenty-two days I had waited for the beeper to beep. But instead of its rapid fire chirp, it was a phone call, shrill and cutting. Fuckfuckfuckfuckfuck. I hang up the phone and nurses keen in and carry me into the toilet where I piss blood for the last time.

With my possessions gathered – my Auden and my Heaney, my copper bookmark and a sputum cup – the room looks like I have never been there. Flowers on my bedside table hold me to ransom – the colours having taken on a death hue. I winch my wasted legs into a pair of jeans, my flat bum loathe to fill the denim mould. Daisy finds me a shirt that disguises my barrelled chest, breasts having shrivelled long ago, but ready to be full again. I try to wedge my blue feet into my stinking blue converse while another nurse succours me with another jab of morphine.

The ambulance sits in one of the emergency bays like a glorified hearse waiting to transport the living dead. But what of the person whose lungs were going to be settled into my body tonight? Was it a man or a woman? How did they die? Was it a car crash? It couldn’t be. The lungs and heart get squashed like soft fruit between over eager fingers. Could it have been a brain bleed? How old were they? What of their family? What of their children? I wonder if it was a woman. Who would she want me to be? One woman dies for another – I didn’t want to disappoint. Responsibilities weigh on my wilted head, soon to be fat from steroids.

My mind peels off, focusing on the next breath. Anything of consequence, outside that esky with my or her or his lungs in it, worsted with each breath and I think ‘I don’t know how to be with this’. What I did know what that there were going to be chains pulling my ribcage apart. Pulling my ribcage apart so my sternum could break. Breaking my sternum so surgeons could push past muscle, sinew, bone, veins and nerves to get to my lungs – those blackened masses like giant mussels having sat in stagnant water; lips covered in downy fur, shell white and slimy, but like bedrock where no knife could pierce. My empty treasure chest. I likened the surgeons cutting through a dense back wood to find a decomposing body. They were going to uproot the trees poisoning the forest. Make the forest clean again.

Wet roads prompted thoughts of car crashes. Absurd conversations about public holidays and the road toll had been a primitive form of optimism. Easter was a pensive time. Then we’re told that hearts and lungs are squashed on impact. I would feel self-disgust mixed with equal parts of hope, but you learn to live lighter when you’ve been dying for nearly nine months, and friend after friend has breathed their last waiting for their second chance that never came.

The night I coughed up a cup of blood, my father said he’d find a triathlete and hire a hit man to save me. Is it selfish to hinge onto the notion that someone must die so that I can cease to exist and begin to live?

I sit up in the ambulance and spit out what looks like a brown slug, flecked with red. The cup is soon flooded with molasses – fatter and far blacker than any leech – and I rattle like a bag of marbles.

One-thirty am.

My red and white hearse clogs two emergency bays while the rain swathing the city has has evaporated. The sky is smudged with patchy clouds and the moon hangs with its silent lull, while winds fat with caution slap my cheeks; the warp and weft intangible in their bearing. Squalls skirling down from the ranges sprint off lands edge and the thumping blades of a helicopter unnerve me and I turn on myself; questioning whether my new lungs were being hauled across sticky linoleum in a store bought esky.

I’m then hankering for food. Hadn’t eaten a solid meal in six months, but I’m hungry. My boyfriend had dropped in at a late night store to buy me flowers and chocolate that I couldn’t eat. How I loved him.

People stood on the kerb – drunk boys and grieving girls. Grieving for what was, what may be, what may not come to pass.

Father chain smoking. Sister crying. Nuns praying. Mother’s hands wringing. Friends mouths twisted into concern. Thirty-six of them lashed together; spine against spine.

I’m taken up to the ward to an onslaught of questions and a nurse Ratchet type who tells us to be quiet – ‘other patients are sleeping’. She makes us feel like impish school kids until Chelse spits back, ‘she’s only having a fucking transplant.’ My doctor sits next to me, his hair and glasses askew. Dog tired and skittish, he tells me that ‘it’s not going to be easy’. The heck I cared. Just cut me open and do your dirty work.

Eight-thirty am.

Thick knots of shit slink down my middle. Dead skinks, their tails unmoving in soft peaks as slow, thick cramps cling to my bowel. A bowel collapse would make me feel less of a stranger. Instead, I am in the bowels of the hospital. Visions of dancing and having sex without a tank of oxygen suffuse my thoughts, then the rusted cogs begin to shift. Slowly at first, then faster and faster, and time starts to slip until I am all death throes and thoughts of ‘my-god-what-if-die-on-the-table?’

The sun had climbed out of the shadows of rain. A cloth cap is placed on my head and I am wheeled away to my very own green mile. The payload of valium dissolved, I look to see the congregation of thirty odd. The thirty odd I might never see again. What of my mother, my father, my sister, my partner? What would I do? I’d be dead. Shame it be that way.

Screams echoed through the halls and I didn’t know how or care where the breath was coming from to fuel them. My mother would later tell me she didn’t know how I made such a noise, but we wagered that it was my death cry.

I didn’t want to lay down in the room with lights as big as satellite dishes, because I was afraid that once my body was supine, I would die. The room was checkered with strangers in masks and gowns and after some soft words, the collective theatre voice bade me good night.

‘Save me, for I am the Sex Goddess’, I retorted. A nurse stroked my face and said, ‘yes, yes you are.’

I surrendered myself to the milk in the syringe; lily white, liquid purity. The kind of death reserved for prisoners on death row who would never wake. The anaesthetic was such a flooding wave of orgasmic joy, it was almost agony.

My armour is cut open so hands and tools can busy and bury themselves in my torso. My breasts are peeled up to my neck, and I am literally off my tits. In the photos I see four days later, I notice that breast tissue looks not dissimilar to a cerebrum – just more finely textured; the patterns more intricate.

While scalpels excavate masses of scar tissue and bloody holes are packed with gauze, I sleep. My ‘native’ lungs – like dead, shrivelled bats – are dumped into a plastic bucket, then surgeons ease in the donor lungs one by one. They stitch and wire them into my chest whereupon they are met with oxygen and inflate in a great rush of life.

My chest is candle wicked with such care; sewn up with silken loops only to be released with the flick of a blade and the pull of a string, for my lungs were swimming with blood and needed to be plumbed. After a couple of hours, the clam-shaped hole resembled a scar once again – my armour back on.

Sunday 23 August, 1998. 9.30am.

I open my eyes to tubes and lines down my throat, up my nose, in my chest, up my vagina and in my neck. A machine breathes for me and would for the next three days. My chest is raw and puckered, and four tubes the size of garden hoses stick out of my chest at even angles like badges on a soldier’s lapel.

I was going lose my breath, I was going to lose my dignity and I was going to lose my cheekbones. But I was coming away with my life – armour on, sheltering my fall.

The good, the bad and whatever else happens

Histrionics aside, my body is losing against this infection. I refuse to say ‘losing the fight’ because I have an uncomfortable relationship with the militarisation of illness and death. But no matter what I put into my body, ‘it is winning’,  as my doctor said this morning. He also wanted to re-admit me back into hospital, but I asked – begged – for two days grace. I now realise that was a mistake, so I’m returning as an inpatient tomorrow morning for whatever they can throw at me. More intravenous antibiotics and maybe steroids. Drugs that are going to make me even sicker. Drugs that will make my body hurt more than it already is.*

After coming home on Friday, I had what can only be described as a miserable weekend, and if I’m honest with myself, I’ve not improved a skerrick. If anything, I’m worse. Not having the energy to go for a walk, let alone drive, my Dad delivered some supplies to me yesterday and was worried about how I looked. I was very pale; a little grey. Across the weekend, there was nausea, shocking headaches, dirreahea (so hot, I know), rigours/fevers and I struggled to walk to the bathroom or eat. I finally ate on Sunday night. Carbed up. Lots of pasta. Late yesterday, I mustered the energy to watch Harry Potter and the Order of the Phoenix which I’ve had since I’ve been home, but I just haven’t had the mental capacity to concentrate. Last night I watched Dumbledore die in the Half-Blood Prince. Snape, you cunt. I was too tired to even be bereft about his demise.

So why did I ask for two days grace? It’s simple. I have an event I’m running on Saturday called ‘Dying to Know Day’ and I don’t want to let anyone down. DTKD is all about creating death literacy in the community and getting people ‘death aware’, thanks to an amazing initiative by The Groundswell Project. Just as I was getting ready to cancel the event, my great mate and colleague Bruce – who did a brilliant job as celebrant at my grandmothers funeral back in June – has oh, so kindly offered to step in, so not all is lost. I’ll be able to get to the event, but I just won’t be my usual hyperactive self. Because talking about death and helping make people feel empowered makes me feel alive. Oh, yes it does.

So amongst all this (what I perceive as) bad stuff, I’ve been blessed to be on Baxter bottles (say that five times fast), which saves me from having to scrub up, draw my antibiotics up three times a day and then push them in a collection of syringes, which takes about an hour for each dose. Instead, I hook these babies up to my CV line (the neck jewellery I’m desperately trying to not accessorise, because a quad lumen CV line is ENOUGH), and the balloons within slowly deflate over a twenty-four period. If I didn’t have the Baxter’s, I would have had to stay in hospital because my fatigue is so beyond what I thought it was going to be. So this is my daily set up. Breakfast. Grubs up …

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A late dinner ….

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The balloon in the bottles shrinks over twenty-fours so I get a constant supply of the antibiotic. So flippin’ clever …

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My woollen backpack. Attached to me except when I’m sleeping. Which was a lot over the weekend …

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After my appointment today, Mum took me to the book store where they had a copy of the Deathly Hallows waiting for me (thank you, universe). Then we had some lunch (thanks Stu at Avid for the pumpkin and ginger soup), and then to a couple of other places where I saw other various favourite people until I was ready to collapse. Then I came home and did LAUNDRY (it really is the small stuff).

And so, I have this message for the universe …

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*I need a massage.

9 1/2 weeks, Princess Diana and trampoline competitions

I’ve always dreamed wildly; the dreams being intensely vivid ever since I can remember. I’ve even dreamed about people who have ‘visited’ me. When I was six years old, my friend Rachel floated through my window and sat on my bed. I knew she had been very sick, and possibly knew she was dying. Rachel said that she had to go and that she was coming to say goodbye. We talked for a while and then she floated back out the window. I told my Mum about it the next morning, and as it happened, Rachel had died overnight. I remember Mum saying, ‘that wasn’t a dream,’ and giving me a big cuddle, then telling me that Rachel had indeed ‘gone’. I found it comforting that my friend had come to me to let me know that she was leaving.

I excessively dream/night terror. Many are strikingly real and can sometimes stay with me for days. A University of Iowa study in 2003 revealed that people who are creative, imaginative, and prone to fantasy are more likely to have vivid dreams at night and to remember them when they wake up. David Watson, a professor of psychology in the University of Iowa College of Liberal Arts and Sciences, said that the more bizarre a dream was the more likely his subjects were to remember it.

Around 2.30am this morning, I woke in a horrific sweat that saw me tearing my sheets off (who wears clothes to bed anyway?) I was exhausted from all of the salt I’d lost with the series of sweats that I’d had, so I made a cup of tea, swallowed a handful of salt tablets, dried off and after about half an hour, I ambled back to bed.

And then the dream began.

It started with a friend and her young son who was – at least in my dream – a trampolining champion. She had made a dessert of creamed rice, sliced peaches and berry coulis, and while one of my best friends and I tried to calm her down about her sons trampoline competition, I dipped my spoon into the bowl, making sure I had loaded my it with extra coulis based on my love of berries. With my friend being so panicked, I decided to jump on the trampoline with her son to get him started, and he blitzed the entire competition, beating kids and adults alike. My friend then relaxed and wondered why she was worried at the outset. Her son had excelled, her face had unfurled from concern and she was happy, content and still.

Within seconds of her son winning the championship, a media fracas erupted. My friend was interviewed and for some strange reason they interviewed me. Just as the reporters left, the article instantly materialised in the newspaper we were holding, just as they do in the Harry Potter books and films. The headline read ‘Born to trampoline’, but the article was about my medical journey, which of course bothered me immensely. This wasn’t about me. The reporter who had got it so wrong was Brisbane city councillor Milton Dick, so I chased him and Princess Diana up an escalator to tell them they’d made a mistake; that if they wanted an article about me than they should do one solely on my friend’s son and his trampolining talents and if they were that desperate for a piece on me, they could write a separate story. After all, it was all about the little boy winning the championship.

As I climbed the escalator, the air so dense and humid – like swimming through jelly – Princess Diana, who was at the top along with Mr. Dick, was trying to get a literal foothold of two books that kept being swept away by the lip of the escalator. I tried to get to the books, but she eventually trapped them with her feet and they both walked away. Because I was trapped at the top of the escalator, I threw a fishing rod and a broom at Milton Dick.

Meanwhile, at my 20 year high school reunion where the mean girls were still mean, I was standing in a communal bathroom – much like a toilet and shower block at a school camp, but with fancier fit outs – when a fierce African-American woman began swearing at me and spraying offensive words as she stood behind me. I looked into the mirror and I had long, dark brown hair, brown eyes and olive skin. I swore at her in a language I had made up, and she laughed maniacally because she thought she had me. She presumed I was speaking Columbian, which would mean I was speaking Spanish and I knew that she was an ace at the Española. I bit back, telling her it was Swahili, at which point she became bitterly affronted, flying into a rage. I’d won the first battle and so left the bathroom with a feeling of empty victory.

I then found myself at an event that Tom Cruise was MC’ing. There was a big room, much like one you’d find at a runway show where my school friends and I were getting dressed and made-up for some sort of grand event. I was the last to leave and thought it odd that Tom Cruise had waited until everyone had left, because he wanted to talk to me. I remember feeling panicky and not flattered at all. I thought (just like in real life) that he was weird and had dastardly plans to make me his concubine, or worse – his wife. The second time he waited for me, Uma Thurman was in the room and wouldn’t leave. Thanks Uma.

Skip to the next frame, and I find myself in the company of a tiger – his coat silken, but flocculent. In the foreground was a rawboned looking woman who had been looking after the tiger as though it was her child, and though she said the tiger really liked me, I just couldn’t trust it. It would deliberately catch a claw or scratch a tooth on my skin like some sort of weird power game. It was in control and it was like 9 1/2 Weeks, except without Mickey Rourke. And without the food and the hot sex and Kim Basinger’s hosiery and the horse whip. Dream fail.

And so the lady and the tiger were separated which left her bereft. So bereft that she collapsed and was laid down on a stretcher. Who cares, I AM STILL FANTASISING ABOUT CRAWLING ON THE FLOOR FOR VINTAGE MICKEY ROURKE BECAUSE I MAY HAVE WATCHED IT LAST WEEK. It then emerged that she had lost her daughter to Cystic Fibrosis many years before, and so the tiger was akin to a replacement for her child. She showed me photos of her daughter who she said I had known. But I couldn’t remember her child and felt an acerbic stitch of guilt.

I comforted her until her wailing became a soft sound of regret. She stayed on the stretcher, and her face shrunk as the minutes passed. It was as though the more she talked about her dead daughter, the more life drained out of her. She was pallid and cyanotic, having taken on the look of an end stage AIDS patient. We were at the top of an amphitheatre full of people; a massive audience. My parents were there, as were girls I went to school with and I ran down the sparsely spaced steps. The audience turned their attention from Tom Cruise to me; my bare feet hammering into the timber thumping through the air.

Skip to another room and there’s a young man with Down Syndrome who was sweet, but was using his condition by trying to kiss me. I resisted and told him ‘you can’t use your disability as an excuse to do whatever you want’. I said that it would be like me having CF and taking advantage of people and situations, and that it was morally wrong – ‘I know how having a terminal illness works, buddy. You can get concessions and things that would otherwise be out of reach, but just because you can doesn’t mean you should.’ PREACH!

A group of people made up of strangers and friends nodded in approval, and then I fell into a pond after missing a stepping stone because of the darkness that quickly peeled over me.

NOW ANALYSE THAT.

CrazyDreams

three haiku

18.4.12

Arousing menu

cream of corn soup, coconut ice

and a bucket of tea.

 

19.4.12

Dark hair, green smock.

Laughter lines and white pickets of teeth.

My old friend, the muse.

 

20.4.12

Doctors appointment.

Nail biting afternoon.

He is still not sure.

 

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.