‘All My Best Friends Are Dead’: My Life As A Long-Term HIV Survivor

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Thirty-three years ago, I was diagnosed with HIV. That solemn Friday afternoon on 21 February will stick in my mind as the day that changed my life forever. Not only had I just received what in 1986 was a death sentence, but it was also my sister’s 21st birthday, and we had planned a bit of a surprise party for her later that night.

Sis was already seven months pregnant with my eldest niece at the time, and I had gone out up town in search of a greeting card with a black mother and child on it. Having given up the hope of finding anything culturally appropriate in London’s Covent Garden, but still ladened with other gifts for the birthday mum-to-be, I decided to hop on the underground to pick up my latest test results from the John Hunter Clinic in Chelsea.

I didn’t know what exactly to expect. I had no knowledge about HIV and Aids whatsoever. I’d never even heard of the acronyms until around a week before. Not surprisingly, I didn’t end up partying with my sister later that day but spent the next several days locked in a darkened room, crying my eyes out. Celebrating the promise of new life on the one hand, while on the other, contemplating my imminent demise.

I had gone to the STD clinic for a blood test about a week earlier. My ex, Colin Clark, had tried to kill himself on the motorway. We had been dating since I was 19, and he was the 38-year-old Cambridge-educated, rich, white man with whom I had recently split after nearly three years of living together in Kensington. Colin had crashed his car on the M25 and lost a lot of blood. Doctors performed an emergency transfusion, and various blood tests later, at the Chelsea and Westminster Hospital, they discovered that he fitted some profile they had identified for sexually active white gay men in his age group.

That was all that I knew back then. Precisely what Colin had told me over the phone. He had called late at night two Saturdays earlier, just a few hours out of the hospital, with gin on his breath and a grin in his voice. “I want you back,” he declared. He admitted to having been distraught to learn that I had met someone new. He went crazy on drink and on the white powder he so liked to sniff; went out on the pull, and smashed up his precious limited-edition MG Midget. Luckily, there was no one else with him at the time. But there he was on the phone, all chirpy and upbeat, professing undying love while wallowing in telling me exactly how the doctors had found out that he was now HIV-plus.

“HIV-what?” I said. “What’s HIV-plus?”

Colin just laughed. “I’ve always said you should read the papers… one of the quality Sunday newspapers. I suggest you go to your local clinic, wherever you are now and ask to take an HIV test. They know what they’re doing at the John Hunter in South Ken. We’ve been there before together, you and I. Let me know how it goes, won’t you, Paul?”

And with that said, Colin hung up the phone, seemingly convinced that he had done all he could to pull us back into a relationship. But where love could not weld us together, the fear of death and disease were never going to do his dirty work. After six months apart, and with my new undergraduate life at the University of Birmingham, I had grown much in confidence and was already breathlessly in love with someone new.

Akwasi was everything Colin Clark was not. At five years my senior, he looked just like the Olympian Daley Thompson. Tall, biracial, handsome, and very virile. More social worker than suited city systems analyst. More Hackney College graduate than a pampered member of the Cambridge University elite. We hit it off instantly. It was like some fairytale, The Prince and The Ugly Duckling. I fell in love the moment I laid eyes on him. We met in Charing Cross through the small ads at the back of Time Out magazine, ate a meal at a nearby pub, and basically became stuck together from there on. We had only been seeing each other for about two weeks or so when I got the terrible news, but I’d already moved into Akwasi’s house in Leyton, in between my digs at Birmingham Uni.

Akwasi had recently discovered his sexuality and just started acting on his interest in men. He was away visiting his sick grandmother in Ireland at the time. But in the seven or so days we had spent together, everywhere we went, friends and family alike remained convinced that we had found the real thing. Now, there I was in a clap clinic, facing an uncertain HIV-positive future and the prospect of being dead from Aids within a few very short years. Who would want me now?

Colin, on the other hand, had boasted of more than one thousand lovers. From the promiscuity of Fire Island to the drug-fuelled discos of New York and beyond, Colin had bedded some of the best-looking men I’d ever seen, and had even had a very active social life as an expat in Caracas before moving back to London and meeting me. By contrast, if I had slept with a dozen men since coming out to my mother at 17, five of them would have to include the threesomes Colin and I tried during our three-year relationship.

All I could think of to say at the clinic to the nurse asking about my sexual past was: “Thank God Akwasi and I have never had sex.” We had been incredibly intimate in the days since we’d met, but we just had not got around to penetrative sex. Lots of foreplay, kissing, hugging and touching, but neither of us it seemed was ready to penetrate the other. What a relief now. What a godsend. But to think that we may never make love, after this diagnosis, and the bawling started all over again. The last time I could remember crying like this for days on end, was when I was 10 years old and leaving my father at Michael Manley airport to return to a mother in England of whom I had no memory. I thought, then, that my heart would never mend, but this time around, I was entirely sure that my heart was beyond repair.

When Akwasi got back from Ireland, he found me on the floor at the end of his bed, crying uncontrollably. I was still distraught nearly a week after diagnosis, and, of course, he was incredibly supportive. As a social worker to the core, and a man who had once dabbled with joining the priesthood, he was very adept at handling people in distress. After he had managed to calm me down and had heard the terrible truth, his sole response was, “I want this relationship, Paul, and the only way I can see it working is if we’re both HIV-positive.” But that is insane; I cried, as the floodgates opened up again.

This response was not at all what I expected to hear. I should have walked out and left him then, but I was weak and vulnerable, and I allowed his loving words to soothe me. The very thought of bringing my killer disease to this kind and beautiful man made me weep even more with sadness and self-pity, but over the next several weeks of talks and persuasion, we began to have unprotected sex, and our relationship continued that way for the next several years. I guess I thought it was love. To have someone so wholly committed to me was akin to a religious experience in my mind. In my heart, it was a bond of marriage, to death us do part.

We bought a house together, and it was firmly assumed by then that we were both HIV-positive. We had never attended the clinic together, but a few months after our romance began, Akwasi came home with the news that he too had tested body-positive. From time to time, he would give me a rundown on what was happening with him as far as HIV was concerned, and what his consultant at the Kobler Clinic had said.

I too went along for regular screenings, and, luckily, so far all was well. It was now 1991, and my consultant had suggested that I take part in a new trial. The research was supposed to be a “double-blind placebo-controlled study”, the only kind of investigation that can successfully prove whether a drug works. In such studies, neither patient nor doctor is supposed to know if the patient is getting the drug or a placebo. In the case of the Concorde Trial, however, the study became unblinded on all sides after just a few days. Despite my best efforts, I could not get rid of the overpowering stench of chemicals oozing from my pores. I ran back to the Kobler Clinic to confront Dr Malcolm Hooker.

“I’m sorry, doctor, but I can’t do this. I’m showering three times a day, and still, I smell like a fucking pharmacy. What have they put in these pills?”

“Nobody else has complained about this problem, Paul,” Doctor Hooker said, clearly annoyed. “You know, you’re only on this trial because I’m fond of you.”

“Well, thank you for your fondness, doctor, but I don’t think I’m cut out for this. I smell like a toxic waste dump, and I’m not having it. Correct me if I’m mistaken, but there’s nothing currently wrong with me. So, there’s absolutely no need for me to be taking any kind of experimental drugs. I’m not a guinea pig.”

“That was uncalled for,” the good doctor replied. “Do you know how important these trials are to the future of HIV management, and the possibility of eventually finding a cure for this disease?

“Sorry, doctor…”

“Well, I am glad we have other patients who want to help fight Aids instead of wasting our time. I’m very disappointed in you, Paul.”

“You know what, Mr Hooker, you can take your pills and shove them where the sun doesn’t shine. Because as I’ve said already, I’m not taking any more. And while you’re at it, I’d prefer to see a different doctor next time I come back here. Have a nice day!”

It was the first time I’d ever questioned a doctor’s authority over my health. I was brought up always to hold the medical profession in high esteem, but I knew my own body, and I knew those tablets were not good for me. Healthy HIV-positive people did not benefit from taking AZT, the Concorde results later showed. In fact, more people in the group taking AZT died during the three-year study than in the placebo group.

Akwasi and I had been about to go on holiday to Ghana at the time with two of his best friends. I didn’t want to be out there taking daily doses of AZT and smelling like a pharmacy if I didn’t have to. We had both been prescribed Lariam with instructions to start taking them two weeks before our trip, and these anti-malaria tablets were already making me incredibly nauseous. Since I had grown up around mosquitoes in Jamaica as a child, and fresh from my disagreement with my HIV consultant, I decided to ditch those tablets, too. Akwasi continued to take his prescription, but I wasn’t having any of it. After about a week in Ghana, however, he started behaving very oddly

It has taken 25 years, and my own recent experience of the psychiatric side effects of Lariam, to make a connection between this anti-malaria drug and the severe nervous breakdown my lover had in 1991 that severed our relationship. A journey of a lifetime for the two of us and his friends, Chrissie and Earl, turned into a nightmare of tensions and conflicts as the baggage Akwasi brought with him on holiday was not just confined to suitcases and rucksacks. Weighing him down on the trip back to his father’s homeland in Ghana was a heap of emotional baggage about racial identity, culture, living with HIV and unspoken sexual desire. As I watched my lover chasing children with machetes and hallucinating about ants sending messages to his father in Kumasi, I was powerless to stop our relationship ending.

In my assessment, he had fallen in love with his new best friend, Earl, and I felt a terrible sense of guilt that he was taking out all of his anger at being HIV-positive on me. But he was attacking Chrissie, too. In his psychotic state, she was his Irish mother who, allegedly, beat her children because English people spat on her in the streets for having mixed-race children. When I eventually met his father for the first time, however, it was like looking at a reflection of my older self in a mirror. Finally, I understood. “My God, doesn’t he look like the old man,” his mother and sister had both said the first time I met them. Now it all made sense. My lover had daddy issues.

But the real bombshell came when he admitted to us all that he had never actually taken an HIV test. He had lied to me about being “body-positive” all these years. When we got back home to England, Akwasi was admitted into the psychiatric wing at Guy’s Hospital, where he stayed for several weeks. In the home we had bought together, I started to write as a way to make sense of what was happening, and I waited in the hope that we might reconcile our differences. He had stuck by me during my time of need. I intended to stick by him.

When he finally came home from the hospital, Akwasi looked like a completely different person. He was frail, fragile and shaky. The bipolar medication had taken its toll, and he had been diagnosed with HIV now. We continued to live under the same roof, but our silences were loud and clear. Then one day we heard that Earl had died in his sleep of unknown causes. It was shocking. How could this big, strong, fit, young black man die just like that? Akwasi retreated further into himself, and it seemed as if I was sharing a home with an enemy. I seriously considered putting locks on my bedroom door, but when I got the news that Colin Clark had passed away from an Aids-related complex, Akwasi moved out of our home the following day. I have never seen him since.

I kept up payments on our mortgage for three or four years until the property slipped into negative equity. It was 1995 when I eventually decided to hand the keys back to the building society and move on with my life. I started to write as a way of addressing the recent past. Our holiday in Ghana had become an inspiration for the play Wicked Games presented at the West Yorkshire Playhouse in 1997, while my HIV diagnosis was the germ of an idea behind Britain’s first black gay play, Boy with Beer (a love story). I was using my life experiences to pull myself out of isolation and hopelessness. The writing was saving my sanity as it had done for countless other writers before me. Writing was therapy.

My initial instinct had been to wait to die, and for many years after my positive diagnosis, I did just that. That’s all I knew. That was the prognosis back then. But today, I’m one of the lucky ones. I have lost a great many friends to HIV/Aids, but they call me a long-term non-progressor. Being unaffected by HIV for over 33 years with an undetectable viral load is the visual equivalent of running naked through a house on fire and never getting burnt. I’m one of very few HIV-positive people who retain a high CD4 count without the need for antiviral treatment to stay healthy and uninfectable.

As my latest consultant at the Kobler Clinic puts it: “If we never find a cure for HIV/Aids, it will be your descendants who will inherit the earth. Your body is doing naturally what we have to feed other HIV-positive individuals daily doses of toxic antiretroviral drugs to achieve. But you, my friend, you’ve managed to stay asymptomatic and perfectly healthy for all of these years. With normal CD4 counts and an undetectable viral load, which leaves you noninfectious. You won’t die of HIV/Aids. You are a medical miracle, and it’s all down to genetics. You picked the right parents. You are what we call an elite controller. Fewer than one in about a thousand HIV-positive men and women meet this standard. Just imagine if we could bottle and sell it.”

I’m waiting at the Kobler Clinic last month for my biannual blood checks as usual when I get talking to a young couple seated beside me. It turns out that she is positive but he is not, and they’re trying for a baby. She is pregnant, in fact, with the baby due later this year, they say. He looks ecstatic, and they are both thrilled. She’s here for a checkup and a top-up of the medication that will keep her undetectable and the baby safe throughout the pregnancy. He says he was on PrEP while they tried to conceive and he can’t wait to be a dad. How fortunate they are, I thought. If only we had been so lucky in my day, and the thought of how far things have come made me smile. No need to risk your life for love these days.

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