The Best Australian Essays 2014 Page 9

  Looking at my own bone marrow was an out-of-body experience – the spongy pink fluid is a secret that your bones are meant to keep from you. I thought of my mother making veal osso bucco and how as a child I’d refused to eat the viscous marrow wobbling inside the hollow of the bone. The doctor had drawn 20 mL, yielding approximately 300 μL of my marrow. Soon the cellular elements of my blood would be able to complete the story. I was left with another huge bruise.

  It wasn’t leukaemia. In my relief I wasn’t able to process the bad news that came with the good. I was just so excited that I didn’t have cancer. Suddenly my alternate universe with tragic photo montages and acoustic power ballads dissolved and I could see myself alive in the future again. I wanted to rip up my will, start reimagining my twilight years, and drink lots of champagne. But the pathologists had found something else in my marrow: a clinically significant number of anti-nuclear antibodies. The tests weren’t over; they’d really only just begun. I was referred to a clinical immunologist, a haematologist and a rheumatologist. It took months for a conclusive diagnosis.

  I had systemic lupus erythematosus. I still do. I always will.

  An autoimmune disease, lupus causes the body’s immune system to mistakenly attack healthy tissue. It’s the ultimate miscommunication between cell and cell: my heart speaks a different language to my blood; my liver is a stranger to my lungs. There is no cure. Lupus is Latin for ‘wolf’, apparently because it ‘devours’ the affected part. My wolf will eat me, organ by organ, because it thinks my perfectly healthy body is a disease it needs to fight. On its hell-bent path of destruction, my wolf will damage my tissues slowly with each passing day. My wolf is already devouring my heart. Several years ago I thought I was in cardiac arrest – I clutched my chest and couldn’t breathe, my body mimicking the symptoms of a heart attack. It was acute pericarditis, inflammation of the sac around the heart. The pericardium holds the heart in place and helps it work properly. Now mine is damaged and vulnerable. Because of this, chances are high it could happen again. Maybe I will feel literal heartbreak.

  *

  These are all things that I rarely admit to myself. The rebel inside likes to pretend that I don’t have lupus. It wants to binge drink tequila and eat badly, chain smoke and stay up all night. Lie out in the sun and expose my skin to the sharp warmth of ultraviolet rays. It wants to skimp on sleep, not drink enough water, and never have to consider the consequences of neglecting my diet, exercise and required rest. I’ve had to learn the hard way that skipping my medication or missing a night’s sleep will just make things worse. That I am photosensitive – sitting in the sun will aggravate my condition and put me out of action. That I have a chronic illness that waxes and wanes like the moon but is always cycling through a series of different shapes and changing light. Once I think I’ve learnt my body’s idiosyncrasies, it surprises me again. It’s the symbiotic relationship between physical and mental health that I’ve found most difficult to swallow. That the pain I feel in my bones will often precipitate an unexplained pain inside my head.

  Yet I’m careful not to be the girl who cries wolf. My wolf is a secret, locked inside a cage. Most people I know, apart from my closest friends and family, don’t even know that I have lupus. Fluctuations in my body’s inflammation levels mean my face can look different from one day to the next, but I’m probably the only one who notices. I don’t look sick. My illness is invisible. When people ask me how I am, how I’m feeling today, I always tell them I’m fine. Better to be stoic about the joint pain that makes me cry in the shower, or pretend that my lymph nodes are a normal size, or that my hair isn’t falling out by the handful, than allow other people to glimpse my weaknesses and vulnerabilities. Sympathy and pity aren’t parties I want to attend, let alone be the guest of honour.

  Although I try not to be fatalistic about it, systemic lupus erythematosus was written into my genes. In the spaces between history and heredity, I had a predisposition. The disease occurs nine times more often in women than in men. It is more common in women of childbearing age, and also those of Asian or African descent. And while the genetic patterns for inheriting lupus are complex, I do have a family history.

  My great-aunt Rosie died from lupus when I was eight years old. She was my grandfather’s youngest sister and I only remember her being sick, her face and fingers swollen from the steroids that she had to take. She was pale and quiet, and had to excuse herself from my seventh birthday party to have a sleep. The following year she was dead: her wolf ate her alive. I have no recollection of my great-aunt being the woman who loved to run along beaches that other relatives told me she was. In the photographs of Rosie before her diagnosis, before her organs began to fail, her smile is wide and her eyes are bright. That woman is a stranger to me, and I wonder if my children or grandchildren will one day stare at old photographs of my face, unable to recognise my smile or my eyes. Rosie was fifty-six when she died and sometimes I wake up in a panic, terrified that maybe I only have twenty-five years left.

  It was only through considering my own mortality that I became concerned with ways I could leave my own mark. Chasing immortality is the side effect of looking death in the face. The beginnings of my quest to live forever started with what I put – and often didn’t put – into my mouth. Fasting, elimination diets, raw vegetables, no gluten, no lactose, no meat; I have tried every dietary program that any naturopath has put in front of me, assuring me that it will be my cure. Once I didn’t eat for fourteen days straight, drinking only water, because it was going to flush out my toxins and clear my guts; the gastrointestinal tract is a prominent part of the immune system. After a fortnight I was slimmer with sparkling eyes but also grumpy and weak. Colonic irrigation was another obsession that I thought might end my problems, but it proved uncomfortable and expensive. To this day I still try every diet that claims it will improve my longevity because frankly, I am still scared.

  Not long after I was diagnosed, I met my friend Sam for a drink. Under his jacket he was wearing a T-shirt with the screen-printed face of Dr House. Below Hugh Laurie’s face, the T-shirt said It’s Not Lupus. When Sam took his jacket off I laughed uncomfortably at the shirt.

  ‘Do you watch House?’ he asked.

  I shook my head. ‘Not really.’

  Sam looked down at his shirt. ‘Whenever they’re trying to diagnose a patient on the show, the younger doctors always suggest lupus. And Hugh Laurie always scowls, “It’s not lupus!” and it never is. It’s a running joke in each episode.’

  ‘I have lupus.’ I smiled to try to soften the potential severity of this.

  Sam laughed. ‘It’s never lupus.’

  I laughed with him. ‘I seriously do have it, though. I was diagnosed about two years ago.’

  ‘Oh.’

  A week or so later I received a package in the post. Inside was my own T-shirt with Hugh Laurie’s face, but it said, Finally It’s Lupus. The night in the bar when I’d admitted to Sam that I had lupus, his reaction had been unexpected. There was no ‘I’m so sorry’ or curious ‘So, how do you live with it, day to day?’ platitude. Sam told me to use my lupus. He told me to write it. He told me to make it a story and explore it, and make it my thing, my point of difference. It was advice that didn’t sit well with me at the time. Writing about lupus and turning disease into words, into stories, seemed really cheap.

  But my quest for immortality had developed an unexpected kink: I was writing hundreds of thousands of words. Driven by my manic need to leave a mark, I documented everything. I kept diaries. I enrolled in a novel-writing course and wrote a manuscript. I wrote stories and essays and articles and poems, but I wouldn’t admit the impetus for my obsessive need to write was that I was scared I was going to die. That I was afraid of the big bad wolf. That he was going to huff and puff and blow my house in, and all the straw, sticks and bricks weren’t going to stop him. I had the bruises to prove it.

  I am not special because I’m going to die. We all will. But my wolf is devourin
g my fear.

  Meanjin

  Sex and Cancer: A History in Three Parts

  Luke Ryan

  I

  Despite being the foundational function of the human species, nobody talks about sex when you’re diagnosed with cancer. There’s a sense that sex is simple recreation, or distraction, and now that you’ve got real problems the whole unseemly business can just be pushed to the back burner for a while. Tell anyone that you had sex while in the midst of chemotherapy and they gape at you slack-jawed, as if astounded that a human being going through that kind of physical punishment could still be capable of a feat of such endurance. I get the feeling most people assume that when you have cancer, all your non-vomiting time is spent staring out a hospital window and considering the prospect of your own demise.

  However, doctors do talk to you about your reproductive future, which, as a twenty-two-year-old, was something I thought I was a good decade away from having to discuss with anybody. Mum, in particular, was not someone I ever thought I’d have to involve in my masturbatory schedule.

  When I was sick at the age of eleven, we weren’t considering the reproductive repercussions of my chemotherapy regimen. I was still on the soprano side of puberty and besides a vague footnote to the effect that a year’s worth of chemotherapy could, on occasion, produce long-term infertility, we didn’t think twice about it. There wouldn’t have been sperm to extract even if we’d wanted to. Sex in all its permutations just wasn’t on the agenda.

  Back then the closest I had come to sex was at the age of four, when Mum walked in on me during bath time to find me trying to get my penis up the tap. If you roll the logistics of this task around in your head for a second, you realise there are a very limited number of positions into which you can fold yourself that will allow you to place your penis inside a bath tap. Well, there’s only one really: the Linda-Blair-descending-a-staircase-while-possessed-by-the-devil. Although I have no memory of the incident, or what I could possibly have been trying to achieve, let it never be said that I was not an ambitious and/or demonically possessed youngster.

  My only other piece of X-rated exposure came two years later, when I walked in on Mum and Dad having sex, an event that, by contrast, I remember all too vividly. It’s an incident notable not so much for the fact of catching my parents mid-coitus, but more for the fact that I then went to school the next day and told every single person there that I, and I quote, ‘saw my Dad sexing my mother’s bottom’. The reason we have a direct quote is because my classmate Dan went home and told his mother and she decided to let Mum know that I was going around school telling people that I had seen my parents having anal sex. In defence of my mother’s honour, I was still using the word ‘bagina’ at the time so may not have been entirely up to date with the workings of the female anatomy. (This occurred a day after I made my first and only entry in yet another of my failed journals, Mum and Dad having confiscated this one when they found that my remarks for Saturday 4 July 1992 consisted of: I walked in on Mum and Dad having sex haha! M15+ Whoops! Evidently, seven-year-old Luke was difficult to impress.)

  By 1997 I had only the vaguest idea that girls were important and that it would probably be good to have sex with one before I died. Fortunately, it was a topic we never needed to contemplate. Four years later I read a news story about a fifteen-year-old boy dying of cancer who had convinced his nurses to source him a prostitute and I wondered if my nurses would have done the same for me. Not that I would have had much idea what to do when she arrived – I was playing a lot of Uno when I was in hospital – but I still felt that seeing a real-life, non-Mum woman naked needed to be on my bucket list.

  When I was twenty-two, though, things were rather different. In the intervening years I’d gone through puberty, grown an extra layer of hair, put a condom on a banana and even seen a few real-life, non-Mum women naked. I also now had sperm. Lots and lots of sperm. As a general rule, chemotherapy works by annihilating the fastest-replicating cells in the body, so sperm stands in the frontline of the assault. On this basis, my oncologist recommended that I freeze a sample of my sperm before I started treatment. Just to ensure that the grade-A genetic stock that had produced two separate tumours in twenty-two years could be passed on to future generations. He may not have used those exact words.

  Mum was at the oncologist’s with me when this discussion came up, and a couple of days later I arrived in the kitchen to see her busy with the family diary.

  ‘Lukey, I’ve booked the appointment.’

  ‘What appointment?’

  ‘You know. The appointment.’ Silence. ‘Where you produce a sample of yourself.’

  ‘Oh.’

  A beat.

  She grinned mischievously and said, ‘I bet you’re looking forward to that.’

  It would have been a lazy thirty-five degrees outside as I drove to my ‘appointment’, an erotic temperature if ever there was one. It took me a couple of loops of the hospital to discover the down-at-heel wing to which they had relegated what a doctor friend of mine referred to as ‘Jizz Palace’. I made my way up to Level 3, went down to the end of a drab, brown-carpeted corridor, turned right into another corridor, this one covered in tarnished 1960s lino and lit by dying fluorescents, and kept going until I finally arrived at an unassuming door that read, in euphemistic fashion: Keogh Institute for Medical Research. I knocked.

  I was the first person I knew of that had ever needed to provide a sperm sample, so my understanding of the process came solely from seeing people donate sperm in frat-boy comedies. Suffice to say, in reality there are far fewer wise-cracking African-American nurses than the movies would have you believe. I opened the door on to a lab plucked straight from a low-budget 1960s sci-fi film, populated by two dorky uncle types who glanced up from microscopes that they were using to, I presume, examine sperm. They grinned unsettlingly, and rolled their chairs towards me. I tried to work out how best to tell two complete strangers that I had come to ejaculate on their premises.

  ‘Uh. Hi. My name’s Luke …’

  ‘Ah, Luke. You’re freezing some of your sperm today?’

  ‘… Yes.’

  ‘Excellent. Well, here’s your cup.’ He handed me a tiny cup. It resembled a medical-grade shot glass. ‘Head next door. You’ll find some magazines in there if you need them. We have some DVDs too, if you’d like?’

  I didn’t think I could bear browsing their porn collection while they watched, so I demurred.

  ‘Well, if you change your mind, let us know.’

  ‘Will do.’ I was pretty confident that I wouldn’t be breaking off mid-wank to ask them for more material.

  ‘Now, we need you to catch at least sixty per cent of the sample in the cup, so make sure you’re careful.’

  ‘Um. Okay.’

  ‘And when you’re finished producing the sample come back and we’ll pop it in the freezer for you.’ While their enthusiastic smiles suggested an admirable degree of passion for their chosen line of work, the last thing I needed right then was the thought of them both mentally cheering me on from the next room.

  ‘Thanks. I’ll, uh, be back soon.’

  ‘No rush. Take your time!’

  I met their eyes, trying to gauge if this was a joke. It wasn’t. Tiny cup in hand, I walked next door and entered the masturba-torium. This was, essentially, a glorified disabled toilet. To my left there was a table laden with an extensive array of two-decade-old porn. Next to the table there was an actual toilet, largely unadorned. In the back left corner sat a chair, done up in that ever-so-erotic, puce-coloured hospital pleather. Then, in the other corner stood a weird semi-recliner, which was essentially a puce-coloured seatback, laid at a forty-five-degree angle, with no seat and two armrests. Despite contemplating it for over twenty seconds, I still couldn’t work out how or why anyone would choose to masturbate in that position. Had they received complaints? Were there folk out there who couldn’t ejaculate unless they were forming a perfect triangle with the floor and the
wall? And how on earth were you supposed to ensure you caught sixty per cent of your sample in that tiny cup if you were using your free hand to keep yourself upright? The mind boggled.

  Plucking a weathered 1983 copy of Playboy from the stack, I set to. There’s something inescapably weird about having to masturbate out of utility. As masturbation is probably the most useless activity you indulge in on any given day, being provided a definite reason to ejaculate sucks a lot of the already limited magic out of the experience. Also, knowing that there are two strange men waiting not five metres away to receive a cup full of your semen is less than ideal. I flicked open to June’s ‘Playmate of the Month’, Jessica, who was reclining, nude, on a faux-revival chaise longue, like some kind of permed, well-to-do sea lion. I closed my eyes, and thought of England.

  When I was finished I headed back into the lab, feeling suitably chastened.

  ‘All done?’ They beamed at me as if expecting me to compliment their public-hospital-themed self-love dungeon.

  ‘Yep.’

  ‘Did everything go okay? Did you catch all of the sample?’

  ‘Yep.’

  My need to escape was overwhelming. A jar of my semen sat between us on the table. It is very difficult to converse with someone while your own ejaculate sits there, staring at you accusingly. They made me sign a couple of forms. I mumbled a goodbye. I noticed they didn’t try to shake my hand.

  I drove home, a bit dejected, and walked into the kitchen. Mum was having lunch. She looked up at me. ‘So,’ she said cheerily, ‘how was it?’