In this follow-on post, Juno Roche discusses her HIV diagnosis and the unchanging face of stigma.
Writing recently has brought lots of stuff to the surface, memories that are fading but still have noise, energy, colour and sound. I’m wondering an awful lot about stigma and how and why my community is so at risk. We are not risky by design but discrimination places us in risky circumstances. Society does this and the data about trans HIV infection worldwide is horrific. The data in relation to trans sex workers and trans sex workers of colour is an absolute stain on us all. It redefines our notion of humanity and kindness, at least it should.
I want to start at the beginning when I was first diagnosed many years ago. My knees rocked from side to side, falling heavily to the bed. As they fell, I remembered the tombstone ad for AIDS. The words hung in my head; ‘You have AIDS’, my legs falling from side to side helped me to breath. My feelings and thoughts bubbled up in some uncontrolled mass, like a jellyfish washed up or a medical photograph of a large squally tumour being removed from the stomach.
I had AIDS. I had less than 10 CD4 cells, the good cells that fight infection, and I had a viral load in the millions. I was full of infection, brimming over with it. I lay there for two days, I couldn’t move, I didn’t know how to. The numbness had taken over. I had cried but that had stopped. What had crying done? What had it ever done?
The data in relation to trans sex workers and trans sex workers of colour is an absolute stain on us all.
I’d worked so hard to leave drugs and that life behind, I had made it to university, the first in my family. But now I had AIDS. To end my first year in university, I had AIDS.
That’s what someone with my counts was told then, not that you were HIV-positive but that you had AIDS. My mouth and throat and tongue were so swollen with oral thrush that I could hardly eat.
I could look back over the previous five or ten years and see countless times that I had taken risks; people, places, acts, mistakes, slip-ups, love and loss. I knew I should have transitioned sooner, I felt deep down it would have taken me to a safer place. But I hadn’t and then I didn’t have the words to start actualising me.
On the bed, I stared up at the same point on the ceiling, my eyes drew out a white square. I tried to count the blemishes in the square. I would count, lose count and count again.
My being, my life seemed pointless; it felt like every time I put a foot forward, something would drag me back again. I loved being at university, I loved feeling like I had achieved something, something I wasn’t expected to do. I felt like just maybe I had a future that didn’t involve drugs or sex or porn, that didn’t involve being terrified here or there, that didn’t involve a knock at the door meaning something bad was going to happen. I’d been born into that. A knock at the door was either a fight or the police. I carried on that trait into my own life.
But for the last year, the knocks at my door were like other people’s knocks, friends and people wanting to discuss work. I was doing Fine Art and Philosophy. We sat around, had dinner parties and discussed ideas and challenging works. We were, and we pretended to be, really smart. For me, it was like being born again. I felt pure. I felt like somehow I had found a way to be like them, to be like the people across the garden wall in Dulwich Village.
In truth, before university, I had fallen about as far as you could fall in terms of addiction. It had utterly spiralled out of all control. I ended up in a probation rehab full of conflicting and conflicted characters who decided after three months of us being there that they would burn the place down. It was surreal, in the middle of nowhere, the farmhouse burning down with a handful of messy addicts looking on and the owners of the house on their knees in tears. I’d shared a room with two women who were there for persistent armed robbery, robbery to feed their crack habits; how ridiculous it seems now, robbery to buy crack cocaine. I hadn’t transitioned then but it was obvious that I should room with females rather than males.
I watched them run away, two specks on the horizon running to get to their dealer hundreds of miles away. I stood still, I had three months clean, for the first time in years and for some reason I wanted to hold on to that, I didn’t want to be around the sadness, the violence, the anger anymore. I wanted something different.
As the house burnt down, I was the only one that stayed and watched until the police, the fire brigade and onlookers arrived. It was my turning point.
Strange that my turning point wasn’t a sense of personal danger but watching the flames engulf the farmhouse and seeing the others, my partners in crime, run off to various cities to score, that silenced me. That made me stand still.
There had been times before when I should have stopped, the time I flew to Egypt to see the Valley of the Kings with a hidden stash of heroin. We’d calculated enough to last two of us seven days. But it was hot and humid and the drugs just slipped out through our pores. Like endless leaks, we couldn’t keep it down. Seven days of heroin lasted two. Just before the cold turkey kicked in, I stood out on the hotel room balcony and looked across the Nile beyond to the Valley of the Kings and I knew I couldn’t stay to see them. I had to, like my comrades in rehab, run back to London to score a twenty pound wrap. I cried but in truth, I’m not sure if I was crying for the valley or the drugs.
I didn’t want to be around the sadness, the violence, the anger anymore. I wanted something different.
The burning farmhouse was the kind of house I’d dreamt about when I was young, the kind of house I longed to live in. I had, for a few months, stayed somewhere beautiful and with a clean sensibility, I turned away from my old life, believing that I had a chance. Three months on from that, I had an interview at university – Fine Art and Philosophy.
And then, at the end of my first year, I was diagnosed with AIDS.
I stayed on that bed for two solid days, not answering the door and not speaking or making a sound. I stayed there and felt like I was breaking down. I was numb and I had no reaction to the pain, the pain of feeling hopeless, the pain of feeling like I was destined to be scared of life and destined to be part of a scary life.
Then I made a decision. I was pragmatic, I needed to finish university. If I was going to die, it was with a degree.
I got up, went out and scored. I completed university as an addict. I got a good degree and got accepted to do a masters in English Literature. But from the time of being diagnosed, the purity and simplicity of being like ‘them’, the ‘rest of them’, was gone. I made art, I read Baudrillard and I did what I had to do to get a degree and fund a drug habit. I didn’t do dinner parties anymore.
I convinced the university doctor, who in his defence had never had to manage an HIV-positive addict before, to write me huge prescriptions for methadone. Literally thousands of milligrams in great big bottles which I would sell. I found a way to be there but I missed being free.
Back then, being told you had AIDS felt like a death sentence. The stigma left you tongue-tied, bound, silent and scared. The stigma was violent, people crossing the road, people not wanting to share your space, your bed, your life; your bodily fluids seen as toxic, as something which may escape and pollute innocent passers-by. Like mercury into a fresh water stream.
It was violent, the stigma more isolating and hurtful than any ‘wrap-punter’ who ever slapped out at me. The stigma of HIV was – and still is – utterly damning.
It still runs like that polluted stream through society. Every time I am faced with ‘should I or shouldn’t I tell?’, I more often than not decide to not tell. HIV makes people view you differently. Being trans and HIV-positive overshadows my desire to love and be loved. Somehow, in having to negotiate the containment of my blood with a potential lover, the act of love is lost in translation.
The stigma now is still very real. Back then, in the morning light of my journey with HIV, the stigma was almost excusable; people really didn’t know better, the government campaigns (the falling tombstone) had presented it as an infectious death sentence, something that couldn’t be cured or contained. Then, AIDS-defining illnesses such as Karposi’s sarcoma and Pneumocystis pneumonia (PCP) were commonplace. Each time we developed a lump or a skin lesion or we coughed and became short of breath, we thought it could be the end but worse, we were terrified in case people could see. AIDS-defining illnesses can be incredibly visual.
So the stigma then was absolutely horrible but it came from an utter fear of the unknown and it permeated society. Mass society had been drip-fed images of mainly young men horrifically skinny covered in lesions dying alone.
But now, the stigma is inexcusable. We know about the illness, we know how we can contain it, how we can boost CD4 counts and how we can achieve undetectable viral loads. We know how to have safe sex. We have the ability to provide post-sex PEP and preventative PrEP. We are armed, forewarned and ready. We know by experience, example and by accumulated knowledge that people with HIV are not one kind of people, they are us, they are you, they are anyone. So why is the stigma still so endemic that someone such as myself would still hide it in so many situations?
As a footnote, it took me ten years to get back to Egypt to see the Valley of the Kings and the ruins of Luxor.
Follow Juno on Twitter (@justjuno1)