THE ‘X’ THAT MARKS A SOUL

BY SURINA BUTLER

The following creative piece was inspired by a patient interaction

Silence is punctured by the incessant cough, cough and the pinging of machines. I exhaust myself after another coughing fit, and then lie back, closing my eyes to shield them from the piercing lights above.

‘You have a very rare type of pneumonia,’ the doctor’s comments from yesterday echo in my mind. I can visualise him clearly in my memory, layers of material protecting his body. His voice is muffled by his face mask, and yet he still chooses to speak softly. ‘We call it an ‘AIDS-defining’ illness. The bug inside your lungs is a fungus that causes infection in people with a poor functioning immune system. The infection is called Pneumocystis jirovecii pneumonia, or PJP. The bug can only grow because the HIV has made your immune system weak.’ The last word branded me like a white-hot iron – weak. As if on cue, I coughed at that exact moment. My immune system was signalling to the fungus that I am weak – have your hostile takeover, I will not fight you.

In 1997 at 30 years old, I was diagnosed with HIV. I told very few people, keeping my secret close. It left a black mark on my soul – an ‘x’ for the virus to find and take up residence. It consumed a part of me.  

There was new treatment for HIV being introduced. They called it ‘HAART’ – highly active antiretroviral therapy. A friend told me to ‘stop feeling sorry for yourself, the stigma is dying down in Australia – get on with the treatment and live a normal life with the virus.’

He should have known better, because I wasn’t normal. Stigma can be external, but it can also be internal. Public disgrace was one issue, but I found that self-disgrace was always more overpowering. Self-harm was my disgusting delight. And here was my means to hurt myself over and over. I was diagnosed with Bipolar Disorder in my thirties. A ticket to ‘the rollercoaster’, as I liked to call it. And so began alternating periods of depression and mania. Pervasive self-hate was there throughout. I took my HIV medication more often during the manic periods, and far less during the depressed times. The end result was doctor after doctor and friends and family telling me that I needed to take my medication because I was making myself sick.

Stigma can be external, but it can also be internal. Public disgrace was one issue, but I found that self-disgrace was always more overpowering

When I started developing mild sicknesses I paradoxically felt better. ‘You deserve this’, I told myself. My mouth would be filled with putrid yeast, sitting in yet another psychiatry ward. Influenza season would take me as its victim every year. I remember with the slip of my hand while cutting open boxes, I created a wound that stubbornly refused to heal for weeks.

A psychiatrist once told me that every psychiatric disorder houses some form of deliberate self-harm. The patient with anorexia nervosa starves themself, the patient with obsessive compulsive disorder washes their hands raw, and I was no exception. I was the depressed and manic patient who let their HIV rage on unchecked when I was out of hospital.

Depending on who you asked, my self-disgust was rooted in many different spots. My father’s staunch Catholicism, and the doctrines he was taught (‘homosexuals are abominations’ – he would tell me), the alcoholic uncles who taunted me, the partners who hit me to assert their dominance, and so the list goes on. The end result was an internal tangle of gnarling branches, tearing me apart.

I found ways to evade the healthcare system. I stopped attending all appointments. When I moved to a distant suburb, I was out of reach of the system. I could feel the pain I needed to feel, and when it was too much, I would drink to forget what I had done to myself.

However, I had forgotten to account for my aunt. She visited me annually, or sometimes every other year. She managed to track me down and found me in a drunken stupor one afternoon. I can imagine the scene she would have walked in on. Around the room she would have seen remnants of a recent manic phase. Projects that were started and immediately abandoned strewn around the room – one eighth of a novel manuscript torn to pieces, empty bottles of pinot and a collection of photos folded and ripped littered across the floor. I have vague recollections of the next few days. Red and blue lights. The acrid scent of disinfectant. Blood flowing out of my veins and collected as evidence. Evidence of my many failures. Stethoscopes firmly placed on my chest and back. The doctors told me about my pneumonia, and diagnosed me with ‘AIDS’. I internally congratulated myself. Officially inducted into the club.

The psychiatrist visited yesterday, or perhaps it was the day before. Time is passing confusingly. She told me I needed to engage with psychiatric help. She would find the right program for me.

‘Do you know where the word stigma originates from?’

‘It’s a Latin word to describe marking the skin or body with a hot iron,’

She said, ‘the stigma surrounding HIV is lessening, and you need to engage with help’.

‘Doctor, do you know where the word stigma originates from?’ I asked.

‘No,’ she sighed.

‘It’s a Latin word to describe marking the skin or body with a hot iron,’ I paused, ‘maybe the world is moving on. Maybe they now say that people with HIV can lead a normal life. But the stigma inside of me never lessened. I branded myself with a hot iron, and now this is my cross to bear.’

A distant beep in the hospital brings me back to the present. I exhale and the burning slices through my chest. Then silence, punctured by a cough, cough and the pinging of machines.

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