World Aids Day: ‘How I have lived with HIV for 26 years’
When she asked about Aids, ‘the doctor replied, “it’s like this – you’re dying”.
Liz Martin has been HIV positive for 26 years. Photograph: Dara Mac Donaill
Liz Martin turned 50 this year, and comes across as a confident, organised, healthy and busy woman, happy with her own life, and with how her four children are doing.
She has also been HIV positive for 26 years.
When we meet in Dublin city this week she is calm and articulate. It wasn’t always like this.
When she recounts the stream of misery that was her early life, what is most outstanding is her own resilience. To quote the title of her book - which she started as a long letter to her brother, and which was published by Aids West in 2007 – “I’m Still Standing”.
In 1991, at the age of 24, she fled her abusive partner who was a drug addict and HIV-positive. With three young children – and a fourth on the way – all they had was the clothes on their backs, and £10.
The youngest of four herself, Liz grew up in the Liberties. Her father was a “hardened drunk”.
“Kevin Street library was my escape. I loved school. I liked to write. I had high hopes. I read Bury me in My Boots and Willie Bermingham’s book, and I wanted to be a social worker when I was young.”
At 16, she got involved with “a local lad”.
“Heroin was new. Dublin’s inner city wasn’t ready for heroin.”
He was using, but he denied it. “The promises, the lies, the deceit. I thought I could change him, help him to be the man he could be. I had my first child at 17 and that was my first experience of homelessness. When I was pregnant my father asked me to leave.”
She and her boyfriend moved into a bedsit in Thomas Street, with no cooking facilities, sharing a toilet and shower with four families. “When it rained on the outside, it rained on the inside.”
He was violent from the beginning. It was regularly followed by apologies, remorse, and the promise never to do it again. “Drugs had a hold on his life.” Shared needles were a part of that life.
In this continuing bleak tale, he was tested for HIV when he was in Mountjoy. Liz recalls a brown envelope from the Prison Service arriving in 1986, when she was 19. He asked her to open it. It was news that he was HIV positive, and that partners should be tested too.
“It was a death sentence.,” she says. There was not much awareness or understanding or education then about HIV or Aids. “It was something that happened in Africa or America.” But, for him, “it was like it never arrived, he went into total denial”.
In 1986, when she had two children, Liz tested negative. “Things went from bad to worse. Getting out with my life seemed next to impossible.”
Eventually, one day in 1991, she took the children, walked out of their council house in Tallaght and got on the first bus that came along. Women’s Aid was supportive, and there followed a period in refuges in Bray and Galway, avoiding Dublin, where her partner might find them.
And so a new life began.
“I wanted a happy home for my children,” she says. Eventually, they settled in a village in Co Galway and the children went to the local school. Liz knew she should be tested again and she asked the local GP in the village.
Liz Martin’s precarious past life with a drug addict who shared needles must have seemed remote in the village at that time, and the GP’s reaction was “What would you want to do that for? You are healthy.”
In November 1991, while she was waiting for her results, Freddie Mercury died of Aids. This time she tested positive. “I asked the doctor one thing – will you talk openly to me, and can you please be honest and truthful about this disease with me.”
The GP had never met anyone HIV positive before. “He said it will be a journey for me and I said we can do this journey together. Maybe we can share information. He was a wonderful man and so supportive through the years.”
He was a visiting doctor in the village, and remained her GP when Liz moved after a couple of years to a town nearby. They regularly shared articles and information they had found about the disease.
She eventually made friends, particularly a local nurse who she confided in. “When I told her, she said, you’re going to be okay. I had bought a book about Aids, by Elisabeth Kübler-Ross, and she took it off me because it might upset me. She was a great support.”
Life in Co Galway “was difficult in the early days. I didn’t know who to trust and I had to learn how to make normal conversation.”
She recalls an open day at school, and some mothers talking about curtains. “I couldn’t related to this. I felt I didn’t have anything in common with them.”
The children were egged and spat at, because they were from Dublin, and their mother had HIV. “I thought, how am I going to do this? The only way to continue to live there was to try to educate people about what it was like to live with HIV.”
Liz got involved in educating people locally about HIV, organising the first HIV/Aids awareness weekend in the area, in 1995 in the local community hall.
“The priest refused to put it in the newsletter. He said it wasn’t a parish issue,” but it went in after some people said to the priest that it did concern the parish, and they wanted their children to learn about HIV. She spoke to children in schools, using the Aids quilt to explain. Word spread, the children told their parents about it, and she was asked to talk to the parents’ council too.
Over the years, Liz has built on that work, and regularly speaks at conferences and to groups. She proudly shows me her little silver brooch in a boat shape, a survivor’s pin from a conference in Scandinavia.
She returned to Dublin in 2000 after some years in the west, to “reconnect with my family” and to be closer to Beaumont hospital, where she was now having treatment. “But the grass is always greener . . . It was not what I was expecting,” she says. There followed another period of homelessness, living in emergency accommodation with her children, aged nine to 15, for a long period. There was still a lot of stigma around HIV and Aids. While she had great early support from her GP, she has also experienced bad treatment. On her first hospital appointment she asked a doctor about the likelihood of developing Aids. “The doctor said, ‘it’s like this – you’re dying’. I walked around afterwards with my head spinning, with ‘I’m dying’ going around and around.”
She has had excellent medical care at Beaumont, she says.
In 2003 her former partner died, and in 2004 her mother – “she was my rock” – died too. Gradually, things got better. She found a home and her four children settled in school. “I always said to them – we will be okay as long as we have each other.”
The trauma of their early life seems to have taught them resilience, and they have fared well and gone on to third level. This year Liz became a grandmother, when her son had a baby boy. “I didn’t want them to have the same life as me. I wanted them to have more than I had. Love is the main component.”
Liz has worked in education, homelessness and disability sectors for years; she now works full-time with a homeless agency and recently graduated from the Tallaght IT. “And I don’t want to stop there. I might write a second book and I would like to do a Master’s.”
When she started triple therapy treatment in 2002, she was on a dozen or more tablets a day. Today she takes one tablet at night. Her levels are now minus 50, the virus is undetectable in her blood and her CD4 count is 1,000. (CD4 is a type of white blood cell that destroy bacteria, viruses, and other invading germs).
In 2002, there were millions of copies of the virus in her blood, she says, and her CD4 count was 14 (normal CD4 range is 800-1,000). She eats healthily and tries to stay positive – and she reckons that fun and laughter are crucial for that.
She tells a story about when she told her oldest two children, then aged seven and nine, about being HIV positive. Her daughter went to the fridge and took out her own cough medicine. “Once they didn’t have this medicine for me,” said the seven-year-old. “And some day soon they’ll find a medicine to make you better. That was the kind of hope given to me by my kids. It gives you great spirit in the face of adversity so you can take on the world. We are very united and have a strong bond.”
While Liz – who is speaking at Aids West, World Aids Day HIV and Ageing conference –A positive Journey, on Friday at the Ardilaun Hotel, Galway – is a walking advertisement for living long and living well with HIV, and that it is no longer the death sentence it once was, she has had pretty hair-raising medical emergencies, when infections flared, particularly when she got a serious sepsis after dental work, and when her body was run down and unable to cope.
“It is a chronic disease, but it can be managed,” she says. “People are living much longer than before with the condition. You need to be compliant with the meds.”
But she is dismayed that 512 people tested positive for HIV in Ireland last year, which is up on 400-odd the previous year. “It’s here and it hasn’t gone away.”
“Twenty years ago I didn’t think I was still going to be here now. I’ve been told I’m a bit of a medical mystery. There are people who have lived with HIV for over 25 years, but there are others I grew up with who are no longer here. I have lost friends to the disease, and I will remember them on Friday.