World Aids Day: Suddenly I had a future, the relief was immense
Patient co-ordinator Chris is one of the longest living survivors of HIV in Britain. He speaks to Patrick Strudwick
Friday 30 November 2012
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A head pokes out of an office door in one of Britain's leading HIV clinics. "Two minutes!" chirps Chris, the patient co-ordinator. Five minutes later, he leads me out of the bright, modern waiting area of London's Bloomsbury Clinic and into a lecture room. Chris looks about 50 and moves like an impatient 20-year-old.
He's 65, a former theatre director. He was diagnosed as HIV positive in 1984 and believes he caught the virus in 1976, making him one of the longest survivors of HIV in Britain.
His story, of burying partners and friends as terror surged through Britain, of fighting desperately for treatment, funding and basic human rights, is the story of HIV/Aids.
Chris begins his account in 1981. "That was when I first heard something. A friend came back from San Francisco and said, 'There were all these skeletons pushing trolleys round the supermarket."
Local reports appeared of a mysterious illness creeping into the gay community – stories that were picked up in Britain. "We had a sense it would come here," says Chris, who has asked for his surname not to be printed. He was living in London with his partner Robert, an architect of the same age.
They met in 1976 and later that year, Robert went to New York on holiday. On his return he infected Chris with Hepatitis B. "He lived life to the full – let's put it that way," says Chris.
In 1980, Robert started getting ill – stomach problems, fevers - and in late 1982, was diagnosed with Aids. "The doctors said he had a matter of months to live," says Chris. "We didn't tell anyone at first – we had each other."
The couple set about trying to carry on as normal. With no medication, they began searching frantically for alternative treatments. "We went to an Indian guru, we imported food preservatives from the States because there was a rumour this could help. We took vitamins by the gallon."
When Chris tested HIV positive in 1984, during the first trials of the test, he was given two years to live, but there was no time to absorb the news.
A few months later, Robert was admitted to hospital with pneumonia and kept in isolation. "They insisted on barrier nursing – being covered in disposable white clothing from head to foot, and a face mask." Chris was told not to kiss Robert. "But I ignored that. A friend of his said she'd never known anyone love another person as much as I loved Robert. I did everything I could for him."
He had little choice – some of the doctors refused to treat Robert. "They wouldn't even go in his room. There was so much fear; they knew nothing about it. People were being buried in concrete to stop contamination."
The Thatcher government's "Don't Die of Ignorance" public information campaign on television showing a falling tombstone and the grim reaper informed and terrified Britain, fuelling stigma toward the then 7,500 people with Aids. Bricks were thrown through windows. Houses were firebombed.
Chris's friends started to die: in total he lost more than 20. "It was… devastating. We knew it was his last Christmas and on Christmas Eve I took him home from the hospital because he wanted a bath in our own bathroom, which was on the third floor. I was able to carry him up three flights because he weighed less than five stone."
On Christmas Day, Robert's spleen ruptured so Chris rushed him back to the hospital. "The doctor said, 'Does he know he's dying?' And I said 'Yes'. The doctor burst into tears. In that period, hospital staff were so freaked out at having no control over the disease they'd show their emotion."
Once Robert was sedated with diamorphine, Chris went home. "I remember drinking half a bottle of Scotch and…" He stops, jaw locked, as if disabled by the memory. "He made it through to New Year's Eve and just decided to stop fighting. An hour before he died he sat up in bed and hugged me." With his partner gone, Chris started fighting for everyone else's lives. He threw himself into Aids fundraisers, putting on one-off shows in the West End and volunteering for the Terrence Higgins Trust. By the 1990s he had far outlived his two-year death sentence.
"I never thought about the fact I wouldn't get to 50. You focus on the moment, day-to-day. I had a Damoclean sword hanging over me but it kept not falling."
More than 90 per cent of those diagnosed in the 1980s died. When effective medication came in in 1996 – anti-retroviral therapy – it was too late for many, including Robert's second partner, Michael, who also died. Alongside the treatment came the viral load test, which reveals how potent the virus is in your body.
Chris's viral load was so low it was undetectable. The doctors were flabbergasted. Chris, it transpires, is a genetic anomaly, the one person in 500 who is now referred to as an "elite controller" of HIV – whose immune systems stems the development of the virus. Suddenly, in 1996, the sword was lifted: his doctor estimated he had another 20 years. "The relief was immense. Suddenly I had a future. I went back to uni, met a new partner and had a whole new lease of life."
Only in 2003, after having HIV for, perhaps, 27 years was Chris put on antiretroviral medication. The disease is now a manageable chronic condition with a near normal life expectancy for those who are diagnosed early and medicated. But the fear, denial and misinformation persist.
"Now, the people who die are mostly the ones who don't get tested and treated, who leave it too late. People still think it happens to someone else, that it will never happen to me."
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