John
Stevens has been living with HIV for over 20 years and is now healthier and happier
than ever. He spoke to Martin Flynn
John Stevens was one of the first people in this country to be diagnosed with GRID, even before HIV was known to be the cause of the disease. Over the last 20 years he has seen a lot of hurt and death but he has always fought for life.
John was born into a forces family while his father was stationed with the British Army in Cyprus. After finishing school, he came to London and worked as a civil servant and at night enjoyed the capital's blossoming gay life.
 John at 21 - "the year I was diagnosed" |
"I was diagnosed with GRID (Gay Related Immune Deficiency) in 1982." He explains: "I hadn't felt well for weeks. My doctor said it was just a viral infection and didn't know what it was. As he probed me he said my liver and spleen were enormous and sent me straight to hospital.
"They did a battery of tests and did a liver biopsy, took a gland out of my armpit and took a bone marrow sample with a huge needle. They had no idea what was happening to me and the doctor said the symptoms I was having could fit anything. Two months later they called me back in and told me they thought I had GRID."
Was this before HIV was recognised?
"The HIV test didn't come out until about 1985. They knew it was some immune disease but didn't know a virus caused it at that time.
 John as 'Lucy Nation' in 1996. |
"In those days the press was full of scary stories about 'gay cancer' but to me it didn't make any sense. I remember when I was volunteering at Gay Switchboard that the advice we were giving out at the time was 'Don't sleep with an American'. When it was known that it was sexually transmitted, gay men in Europe were really nervous of Americans.
"By the late 1980s I was buddying for THT, but then I got involved with GAG (Gays Against Genocide). We were protesting because THT was producing a leaflet encouraging the use of AZT which was directly funded by Glaxo Wellcome, and we felt there was a real conflict of interest.
"You have to remember there was a lot of anger in those days. THT was supposed to be supporting people with Aids but they were taking money to plug a drug which was toxic, I'm sure. It was killing people; many of us were on such mega high doses it was just making us even more ill.
"I remember joining a picket outside THT's offices in Gray's Inn Road. But when I told my buddy group what I was doing I was hauled up in front of a disciplinary meeting and sacked as a volunteer.
 'At home' with Babe. |
"I came down with a form of skin cancer and awful diarrhoea and my weight went from 111/2 stone to nine stone in about three weeks. The doctors were saying nothing and weren't giving me anything to deal with it. They wanted to take me into hospital and put me on a drip. But I'd been with enough people with HIV to know that if that happened I wouldn't have very long to live.
"I became aware that other people were coping with complementary medicine. Cass Mann [notorious/celebrated UK Aids guru and dissident] suggested Chinese medicine. So I tried it and the very next day the diarrhoea was better.
"The medical profession in the early days of the epidemic really didn't have a clue. The drug companies were recycling old anti-cancer drugs but gay men were dying in their thousands. My clinic doctor was particularly brutal and rude. When he gave me a terminal prognosis he said 'Take AZT or you'll be dead in six months'. And here I am 15 years on, still alive and still going strong."
How did your friends and family react?
"My close friends were great and when I later came out as positive in Capital Gay it got a really good response. I told my sisters and they were fine, though very shocked. I told my parents much later.
"At that time people with Aids would go to London Lighthouse and get into a culture of dependency. They'd make memorial quilts, all sit round feeling sorry for themselves just waiting to die. People with Aids were told 'This is a terminal illness, get on with it, accept it and don't make a fuss'. To me this attitude was completely self-indulgent. I didn't want to die. I didn't want to make a bloody quilt. I wanted to live and beat this disease.
"What Positively Healthy [Cass Mann's group] was doing was much more life embracing; the philosophy was fighting to live, not giving up and dying.
"Being a THT buddy showed me the harsh reality of death. I even stopped going to funerals after a while. It was so easy in those days to get sucked into just supporting people to have a peaceful death. I hated funerals with all the hypocrisy of the people saying 'Oh, didn't he die peacefully'."
Did you go on combination therapy?
"Not until four years ago - 1998. I started going to the gym, because it made me feel so much better and no matter how bad I felt, I forced myself to go. It took about three years to put the weight back on. I think the more weight you have the better you are able to fight back against HIV."
 Early covers of Equilibrium magazine (EQ) that John ran for four years. |
When
did Equilibrium (EQ) magazine start?
"In 1996. I'd edited a treatment newsletter at Positively Healthy and after the Vancouver Aids Conference in 1996 there was the first clear evidence that combination therapy could work. We wanted a magazine to show how complementary therapies could work in conjunction with combination therapy.
"We did 12 quarterly editions for people who wanted a common sense approach."
How did you get to be working inside the HIV sector?
"I'd been working over 60 hours a week producing EQ. It got me into a pattern of work and I thought 'if I can do this I could do anything'.
"I did some volunteering for Positive Futures. Then I got a job as their placements officer - retraining and reskilling people with HIV and getting them back into work. With disability there's always prejudice. I think the gay companies were the worst at helping us, they were just not interested.
"I've been working for Positive Futures for three years now and have just started work at the Equal Project at Positive Place in Deptford. There's much more benefit for people with HIV using a specialist service like us rather than the government's 'New Deal' programme. We have the experience and expertise and know much better the issues of being HIV positive and problems like disclosure of status."
Why have you survived when others haven't?
"I'm not proud to have HIV but I am proud that I've coped with it so well. Two people who have been crucial to my sanity and survival have been Cass Mann and Dr Steven Ash from Ealing Hospital.
"I've had bad facial lipoatrophy and I hid away, not going out and even did my shopping over the internet. I'd go to work but never went anywhere socially. Even though I was well and felt great, I looked like an old man.
"I was one of the first people in this country to have 'New Fill' injections in my cheeks. I've had nine treatments and am so grateful, I want to kiss Dr Ash's hand for what he did for me. Lipoatrophy has become the new face of Aids."
How is your HIV treatment going?
"For 12 years I had a CD4 count of 150 and now it's over 600 and my viral load is undetectable."
The future?
"I suppose I'm so used to being HIV positive now, it's part of my life. I'm also in my mid forties so I could be prone to other health conditions - such as heart disease and liver and kidney problems.
"I've coped for 20 years. I never expected to reach my forties. I just didn't expect to be living this long. It's great to see a future and to see new possibilities. My ambition used to be just to stay alive. I now look forward with confidence and I am much happier now. I even get paid to help people these days.
"But it hasn't been easy. I have seen a lot of hurt, a lot of mistreatment and a lot of death over the last 20 years. But I'm past that now and I feel better than I've felt for twenty years."
