'I've come through the wars and out the other side'
Irish Examiner 28/02/2007
By Conor Kane

"It was so painful, just to see the look on my mother's face" - James O'Connor still remembers, as if it were yesterday, the moment almost 16 years ago when he had to tell his widowed mother that he had AIDS. Lying in a hospital bed in Dublin, after two years of progressively worse illness which was almost fatally ignored, James shared the grief with his loved ones.

He had just been diagnosed with an illness which is one of the identifiers of AIDS and, one by one, was telling members of his family. Before his mother, there was his beloved twin brother to tell. "It was a Tuesday morning when I found out and I had to ring someone. I rang my sister-in-law who had worked in Crumlin's Children's Hospital with HIV-positive children and I was in tears. Within 90 minutes she and his brother were sitting beside him in St Jame's, receiving the distressing news. "I suppose it was more difficult to tell my twin brother the following day. We were so close, and you're telling a mirror image of yourself."

Then 27, James reckoned he was infected with HIV - which progressed to AIDS before diagnosis - before he was 21, during a time spent living in London. By his own admission, he wasn't heeding any of the warnings circulating about the dangers of unprotected sex in those early days of the disease in the early to mid-80s.

"There were headlines about the 'gay plague', I refused to open a page on a newpaper that had anything about HIV or AIDS. I was sexually active as well. I was having unprotected sex, and I would have been travelling abroad on holidays. At the sametime, I wouldn't have regarded myself as promiscuous. But if somebody has unprotected sex, they're putting themselves at risk."

The first signs that James had contracted HIV came when he was 21 and developed swelling of the glands. "It was a bit like the common cold that wouldn't go away." But he refused, at the time, to countenance a test, despite the intense media coverage of AIDS. "I thought I wouldn't want to know about HIV or AIDS." A few years later his father passed away. "I remember going through the grief of trying to understand death. I remember having this feeling, 'I'm going to die', and I thought I'm never going for a test until I have to. At that time, there was no hope. AIDS was seen as a death sentence and that's how I saw it."

However, circumstances forced his hand by the time 1991 came around. For some time, he experienced extended black-outs an collapses until one day, encouraged by his GP, he arrived at St Jame's and was diagnosed with toxoplasmosis. "It was like you're standing on your own in the middle of the countryside on a railway track and the train comes and hits you. That sort of shock - it was like the door opening between two rooms and this is reality."

It has taken him many years to come to terms with his condition but, at the age of 33, the use of anti-retroviral drugs improved his symptoms. He says now that the Highly Active Anti-Retroviral Treatment (HAART), which began to work so well for him after that period, has "changed the face of HIV in Ireland" since 1996. "It's brought quality of life back to people." During the last decade James has immersed himself in the work of Open Heart House, a Dublin-based peer-led support agency for people living with HIV and AIDS, where he now lives.

The friendship and help offered by other members at Open Heart gradually came to replace the "absolutely horrendous" isolation and loneliness he had experienced in his native area in rural Ireland, where he was afraid to tell a soul outside the family about his condition. Before joining, on the advice of a social worker, he had himself been thinking about setting up a support group for other people living with HIV and AIDS from around the country but, instead, he had become Membership Development Manager at Open Heart, which now has a nationwide support network of 650 HIV positive members.

He now feels comfortable walking into a bar in Dublin or Galway or Cork and, if he bumps into another member of Open Heart House, It's a shared bond. It also helps to reduce the fear of what other people might think. "For me, because I got that peer support, I'm not as fearful of what others think of me. HIV is just part of me, not all of me." Nowadays, just over a decade after believing that death was imminent, he's content with his lot, back at college for third-level studies, and happy in his work - "I don't have a partner now, I'm too busy for that!" He's also optimistic about the future.

"I'd say I'll live a normal life for as long as anybody else. That's the way I view it and I say that as a person who has accepted my own mortality. I have no fear of death." He would urge anybody living with HIV or AIDS, who feels they are isolated and alone to reach out and seek some peer support. "It has worked for me and hundreds of the members of Open Heart House. The pain for me was not the pain of the illness, it was the emotional pain of being socially isolated and on my own, which brought on depression and low self esteem. If people can get some sort of support on the social side, quality of life will become much better."

Luckily, discrimination has not been a major issue for James but he's well aware that it exists. He was one of those involved in advocating for the Stamp Out Stigma campaign, which the Government recently launched to help combat the stigma and discrimination against people living with HIV in Ireland, together with highlighting the irrationality of HIV-related stigma. "I remember thinking following the period of sickness and isolation, 'fuck this, I've gone through so much and have earned my right to a decent quality of life, regardless of what people may think about me.'"

James feels his sexuality is not an issue and remains focussed on looking ahead and continuing to cope with AIDS. His is a story of hope after years of darkness and pain. "I've gone through the wars," he says. "I've got out the other side."