The bruises came first. They were scattered about the soft skin of my stomach and thighs; my body was a constant galaxy of haemotoma constellations. Sometimes they would worry me, bruises that appeared overnight when I had no memory of any physical trauma. Mostly I ignored them. My clusters of purple stars only bothered me on the grounds of vanity, like when I wanted to wear a short skirt or bare my midriff in a bikini. Some of my boyfriends even liked my bruises, running stray fingers over my black and blue body, asking where they came from and if they hurt. Once I was told they were sexy. Perhaps there’s something charming about being the sort of delicate girl who literally bruises easily.
There were other symptoms too: crippling fatigue, rashes, joint pain, food intolerances, swollen lymph nodes, a constant battle with anaemia no matter how many iron tablets I swallowed or how many rare steaks I ate. Once or twice I’d had memory blackouts—for no apparent reason I didn’t know what happened the night before, and how I’d made it back to my bed. There was that strange case of acute pancreatitis; an inflamed seventy-two hours of sharp, intense pain that my doctor couldn’t explain or understand. My body had given us hints, but symptoms are never symptoms when you’re not looking for a cause.
My inevitable downfall was the sun, the trigger of an intense flare of illness. My friend Bella and I had gone on a holiday to the beach, where we sat on the hot sand all day and read Doris Lessing, and lay out on cheap inflatable lilos tied to a buoy, floating under the Mediterranean sun. We jumped off rugged clay cliffs into the sea, sipped on pineapple-flavoured cocktails, laughed and danced to Europop. After a week our skin was dusky and our hair fell in saltwater waves. But I came home with a fever, my limbs aching, and covered in a violet shock of bruises. One leg was indigo and covered in welts. In the days following the holiday, my body was so heavy that I couldn’t get out of bed for almost a week, and so sore that, incapable of standing up, I vomited in my sheets and lay in a pool of my own sick for several hours until I could move.
When I made it to see the doctor, he couldn’t explain what had happened to me, why I was sick. There were tests and endless amounts of blood work—prodding, poking and jabbing—and the crook of my elbow became accustomed to the pierce of cold metal. He took vial after vial of my blood, hoping that somewhere in my cells was a clue to the mystery of my illness. The first round of tests sent to the pathologist gave us nothing. The next results prompted one of those urgent phone calls: ‘I have some bad news for you, you need to come to my office right away.’ You can’t be told that sort of news over the phone.
I remember sitting in the light-blue vinyl chair, my handbag on my lap and my hands in a ball, as the doctor told me what he’d found. My platelet count was upsettingly low and my white blood cell count was frighteningly high. He showed me a sheet of paper with columns and numbers in rows that I didn’t understand. Bar charts and histograms. My results were well outside the normal range. I tried to picture my blood, like a bright red pool with too many white lifesaver rings set afloat to rescue the drowning.
‘What does it mean?’ I asked, scanning over my platelets and cells.
‘I need to test your bone marrow,’ the doctor said.
‘How come?’ I shifted my weight in the vinyl seat.
He didn’t look me in the eye. ‘To make sure you don’t have leukaemia.’
We had to act quickly. My appointment to have the bone marrow aspiration was forty-eight hours later, and during that whole time I was emotionally paralysed, watching videos on YouTube of tragic photo montage tributes to children and adults who’d died of leukaemia, sound-tracked to sad but ultimately uplifting Sarah McLachlan songs. I read case studies of chemotherapy gone wrong and started to research holistic alternatives. The survival rate in adults diagnosed with leukaemia was 50 per cent. At twenty-six I’d never considered my own mortality before, but suddenly I had to think about a universe where the chances I might die were the same as the flip of a coin. Maybe I had cancer. What would happen to my unrealised dreams, what would happen to my very young son? Before then, those questions had only ever been rhetorical. I bought a Do-It-Yourself Will Kit online and listed my beneficiaries and the disposition of my estate. There wasn’t much to give away and bequeath: I left my books to my dad, and my son to my mum.
I shuffled into the pathology lab in an open-backed hospital-green robe, and was told to lie on my stomach. As they gave me a local anaesthetic, I caught a glimpse of the needle the doctor was going to use. Bone marrow aspiration needles are thick like a nail, and as long as a forearm. On my hip there’s a shiny scar where the needle went into my skin, piercing through the bone—my posterior iliac crest. The scar is a perfect circle; the precise shape of the needle’s hollow form. When the needle went in, I bit the inside of my mouth so forcefully that I drew blood. I heard my pelvis break open.
Looking at my own bone marrow was like 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 bone 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 the tragic photo montages and acoustic power ballad soundtrack dissolved and I could see myself alive in my 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. My wolf will damage my tissues slowly with each passing day on its hell-bent path of destruction. My wolf is already devouring my heart. Three 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, and 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 might 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 create 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 to 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 child-bearing 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 started to become 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 very 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.
Three years ago 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 exclaimed 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,’ I said.
Sam looked down at his shirt. ‘Well 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 said. ‘I was diagnosed about two years ago.’
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 novel. 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 devouring my fear.