I was brought up in an experimental commune where children weren’t treated like children. It was bohemian and radical, but I just thought I was part of a normal family. In 1983, when I was 11, I started going out in London. I was tall and easily passed as older, so I could get into places I shouldn’t – like nightclubs in the West End. People at school read copies of Smash Hits, and I’d go out after school to the club with everyone in Smash Hits, living a double life. I think I always knew that I was gay.

I left home when I was 15 and moved in with a friend in his mid-20s. I began a foundation course at Camberwell College of Art. My first encounter with HIV was when I worked in a shop on Neil Street. The manager told me that condoms were ‘really in fashion’ and he bought me a packet. I remember thinking: Why do I need these? There was no sex education in school, the age of consent was 21, and I was a homeless minor.

But there was a kind of awareness by 17. Friends who’d been to New York returned with Silence=Death T shirts. I knew of people who had died.

When I was 18, I met Josh. He’d been in a long relationship with Martin Watkins, keyboard-player for Marc Almond. Before that, with American punk singer Spud Jones. My relationship with Josh was very special, but also volatile. He was ten years older and I don’t believe he stopped seeing other guys. We moved in together in Brixton.

Once, I found Josh in the bathroom taking his lodger’s AZT. He said, ‘Oh, I’m just seeing what it’s like. I’m experimenting.’

What I didn’t know was that his previous partner, Spud Jones, had tested positive for HIV. Josh didn’t want to have a test. I think he was terrified. He got pains in his back that were so extreme he couldn’t get out of bed.  He said, ‘I must’ve pulled a muscle, I don’t know what’s wrong with me.’ The pain came back so badly he couldn’t go to college. By then I was studying for a sculpture degree at Brighton University, and would come back to London on weekends. He got sicker and went to see an osteopath, who threw up his hands. ‘I don’t know what’s going on here. I think you need to take him to hospital.’

My mother took Josh to St Thomas’s. After some blood tests, the doctor came out to a crowded waiting room. ‘Are you a practicing homosexual? You’ve just tested positive for HIV.’

Of course, the room emptied.

He was diagnosed with non-Hodgkin lymphoma, aged 29. I was just 19. He told people he had cancer and was getting treatment; he’d soon be back at college and his job at the Scala. He told me not to tell anybody. Silence. Silence. Total silence.

He became an inpatient at St Thomas’s. I dropped out of my degree. It was impossible to look after him and study. The first time I went to see him in hospital, they told me I wasn’t next of kin and was under the age of consent. My boyfriend had just been diagnosed with full-blown AIDS and I couldn’t see him.

I managed to find his room on an old-fashioned cancer ward. Several meals were on trays outside the door. He was lying in a soiled bed. It was stifling hot. When I complained at reception, they said, ‘We’re not going in there. He’s got AIDS.’

Trying to fight a pandemic in a gay relationship, when it’s actually illegal to be with the person you’re trying to save, is not something I would wish on anybody.

I got undressed, got him undressed and sat him on a chair under the shower, because nobody else would wash him. Everything stank.

They agreed to clean the room. Two people turned up in masks and hazmat suits. I was naked in the shower with him. I realised that if he stayed there he’d die in a room alone, covered in his own shit. I had to do something. Three days later I borrowed my mum’s car, making sure I had the C90 compilation of The Smiths that Josh had made me. With The Smiths on he’d shut up and behave nicely, sit and sing along.

I waited until the nurses station was changing over nurses. A tracheostomy patient in the hallway had a wheelchair. I explained that I had to borrow it, otherwise my boyfriend was going to die. I promised to wipe it down with Dettol afterwards. He sat on a bench and let me take his wheelchair.

I stole Josh from St Thomas’s Hospital and put him into my mother’s car. I took the wheelchair back upstairs, wiped it down as promised, and lifted the man back into the wheelchair.

I’d heard Princess Diana was going to be opening a hospital in Chelsea, but I didn’t know where. Full of trepidation, I drove to the King’s Road, and asked a policeman.

‘Excuse me, apparently there’s a new hospital opening, called the Chelsea and something. Can you tell me where to go?’
Josh was in a backless hospital gown singing along to ‘There is a light that’ll never go out’.

‘Chelsea and Westminster on the Fulham Road. But I don’t think it’s open yet…’         There was a stack of wheelchairs in the car park so I knew I must be in the right place. I lifted Josh into one. The reception desk wasn’t open yet, but there was a person sitting.

‘Apparently Lady Diana’s opening a special ward here for HIV. Where is it?’

‘Third floor. John Hunter. But it’s not open yet.’

I got in the lift with Josh. Everything was covered in plastic that hadn’t been peeled off yet, completely brand new. The door was shut. When someone came out I grabbed hold of the open door and wheeled him in.

Then I lost my nerve completely and burst into tears.

‘Somebody help me!’ I shouted.

They came rushing.

They sat me down and gave me a cup of tea and some tissues. Then they had to give Josh another HIV test because we didn’t have any of the paperwork from St Thomas’s Hospital.  Finally there was someone who could help: Colin Knee. An amazing nurse and counsellor.

St Thomas’s refused to send the notes over. They thought Josh had been kidnapped. He signed something to say he didn’t want to go back.

They had a finished room for Josh, a kitchen for partners and families to cook meals, a TV room where people could be together. They understood. It was miraculous.

And they could treat him for cancer in the context of HIV. Josh was their first ever patient in 1989, two weeks before it opened. They didn’t complain about me being under the age of consent, not being next of kin, whatever. They just accepted me.                
Josh had a viral load that was through the roof. I think he must’ve known at that point he was dying. But we went forward on the basis that he was going to come home, finish his degree. He’d spent his 20s gathering extraordinary experiences and was adamant he was going to turn that into art in his 30s, make films.

That’s what we tried to do. It didn’t work, but we tried.

He still didn’t tell people he was HIV positive. He looked like Salford’s version of James Dean and was worried about chemotherapy because he’d lose his rockabilly quiff.  He did, of course, lose his hair, but he went home.

His ex-partner, Martin Watkins, was about to go on tour with Marc Almond to eastern Europe and Russia and wanted Josh to come as a roadie. I thought this was insane but Josh thought it was an absolutely brilliant idea.

In Moscow he developed a brain tumour. The cancer had moved. ‘We’ went back to being an inpatient. He even more seriously ill this time.

When his mother and father arrived, they didn’t understand why I was there. The idea that he had a partner who was a man was alien to them.

But he really wanted his mother to be there, to be making him the food he had when he was a little boy, meat and potato pie and parkin. He knew he was dying.

We got into the habit of putting Josh in a wheelchair and taking him to the cemetery opposite where lots of men used to go cruising. Josh thought it was hilarious. He could find a nice sunny space to sit, not be in the hospital for an hour, and watch the boys cruising among the gravestones.

One time we were coming out of the hospital as an emaciated man was going in. They reached out to each other. It was Spud Jones, Josh’s ex-boyfriend, very much at the end of his life. I’d known Spud really well and didn’t recognise him. This great big muscleman with a huge Harley-Davidson, who’d scream into a microphone on stage, was now this bald, frail, skinny person, no eyebrows, holding onto a frame, reduced.It was an extraordinarily striking moment. He died shortly after.

Josh urged me to have a test. I would be alright, because I‘d test negative. He wanted to know because then he wouldn’t feel guilty.

The inevitable result. I had to tell Josh just before my 21st birthday. He was really ill. I knew he was never going home. Spud had died. The whole generation of artists, film makers, writers, and painters we knew in Brixton, Stockwell, Camberwell, all in their early 30s, were dead.

I was told at the Kobler Centre that I had 6 months to live. It was at that moment when I think the medical establishment were not saying: Here, take AZT and you’ll be OK for three years, because so many people had died of the side effects by that point. We were still five years from non-nucleoside reverse transcriptase inhibitors, NNRTIs. I was in this weird no-mans-land between the two. In the early days of my diagnosis, the only thing they could prescribe me was painkillers. Oral morphine. They’d give you anything. Free dental care. A bus pass. A mobility car. Anything. But they couldn’t give you anything that could help you.
There were so many conspiracy theories about what you should and shouldn’t be doing, and I was frightened by the number of people I lost to AZT. I panicked, stopped drinking, smoking, went to the gym, acupuncture clinics, explored Chinese medicine, herbs. I wanted to last as long as possible without taking any allopathic medicine. I took vitamin supplements, enormous doses of Vitamin C. If I could have bathed in pure vitamin C, I would have done. I’m in that 2 percent who were diagnosed before combination therapy and are still living.

Josh died just after my 21st birthday. I wasn’t allowed to go to the funeral. I’d believed I was going to spend the rest of my life with this person. Losing him defined me. I went into a church and lit a candle at the same time as his funeral. By myself.

I’m grateful to the National AIDS Manual. I made sure, after Josh died, that I met everybody who was doing research and did everything that you could possibly do to learn. I went to New York to meet activists. I became convinced that I was right: that I should not take anything until I felt safe to do so. I suppose I’m lucky that I decided not to take anything until NNRTIs. I’m still taking them now, after a quarter of a century, which is probably why I’m alive. Most of the other people I know, who thought I was mad not to take anything, all of those people are dead. From 1988 to 1995, everybody died.