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
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
"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."