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COMING OUT FROM THE COLD
After an initial reluctance to tell the outside world about his predicament, author and poet PAT TIERNEY this year went public about his HIV-positive status, and encountered a far more compassionate response than he had anticipated. Interview: LORRAINE FREENEY
Lorraine Freeney, 17 Nov 1993
In May 1992, Pat Tierney, who had been diagnosed HIV positive two years previously, was interviewed in Hot Press. He used a pseudonym, because he was afraid of rejection. In his compelling autobiography, The Moon On My Back, published in March of this year, he explains that he had been “an outcast at birth, and in spite of all my efforts to straighten out my life, I felt that I was going to be an even more distant outcast at the time of death . . .”
Eighteen months after that first interview, the publication of his book has made Pat Tierney into public spokesperson on AIDS-related issues. “Complete strangers are looking to me for advice,” he says. “At least there’s one person there’s who’s accessible, that people feel confident about talking to.”
What finally compelled him to publically declare himself HIV positive?
“I feel that I had come to accept my position for starters, and become aware of the ways that the virus could be got, and educated myself about it, and realised that there was an awful lot of misinformation floating around. I also decided that the paranoia that I had had, and the paranoia that society generally has, should be tackled, with the view to breaking down the stigma associated with the disease. So I decided to write the book, and it’s the best thing I ever did.
“Since I went public on Kenny Live, and since the book was published this year, I’ve had no negative reactions whatsoever. I’ve been getting letters almost daily from people who have read the book, and the letters have all been positive, wishing me long and healthy life. People are giving me their phone numbers if I ever need to phone them. People are sending me rosary beads, they’re sending me rose petals from Lourdes and all of that kind of stuff, none of which I believe in but nonetheless it’s nice to get that from people.”
Pat now insists that, in dreading the reaction of friends and acquaintances to his HIV status, he “completely and totally underestimated the compassion of the Irish people. It’s almost as if I have a huge family out there, and it’s growing all the time.”
At the close of The Moon On My Back, Pat dismisses his dream of one day being part of a family of his own.
“I expected that I would never ever have an opportunity to have a relationship again,” he explains, “and I’m finding it’s quite the contrary, that women are open to me because they know that I’m upfront and straightforward, and so I have no problem at all with regard to relationships.”
Does he feel there is still a high level of ignorance with regard to AIDS and the HIV virus?
“There is a huge amount of ignorance, but the strange thing is, I’m finding it in medical institutions rather than with the public generally. When I started going to hospitals to have blood tests, I found that they were putting stickers and all kinds of identifying markers all over my charts and files. I tackled the hospitals on this, and they eventually looked at what they were doing and decided that doing such a thing in this day and age was unethical. Beaumont hospital described it as being an unethical practice.”
into a body bag
The passage in The Moon On My Back where Pat relates his discovery that he is HIV positive makes harrowing reading.
One week later I returned to an out-patients clinic and after waiting a half hour my name was called and a nurse directed me into a room with a doctor sitting behind a desk. I sat down and said nothing. The doctor spoke.
“Why are you here?”
“To get the results of a blood test I had taken last week.”
He opened my file which was on the desk in front of him and looked briefly through it. He then looked up at me and said:
“Do you know that you put medical staff at risk by not telling them that you were HIV positive?”
“How do you mean?” I asked, confused by his comment. “Sure I’m only here today to find out the results of the test.”
“Well your file indicates that you did know,” he answered.
“So I’m HIV positive?” I asked.
“Yes,” he replied. I stood up and walked out of the hospital in an awful daze. It was as if someone had hit me on the forehead with a sledgehammer.
That seems a terribly blunt way of having such news relayed to you.
“It wasn’t so much blunt,” he says, “but the implication was that I knew and had been hiding it. I don’t know what gave him that impression, and as a matter of fact, I earlier this year went and asked that particular consultant for a meeting to discuss the manner in which I was told. He said that he didn’t remember me or giving me the results, but he said that he did think it was wrong that anyone should be given the news that way, and that there should be proper counselling available to people.”
Was he offered any counselling at that time?
“Nothing, absolutely nothing at all. It was just like going in and having a blood test and going in the next week and being told there’s nothing wrong with you, it’s just as casual as that. I’m fighting to ensure that other people don’t go through that.
“I went with a young woman last week who wanted to have a test, and I ensured that she got proper counselling before she even had the test, and I’ll be going back with her next week to get the results. I’m glad to help anyone out and go to the hospital with them, because I know the horror that can happen.”
Why do so many Irish people, on learning that they are HIV positive, decide to emigrate?
“It’s because of the attitudes in Irish medical institutions, particularly in St James Hospital. It’s a damnable thing to say, but people are afraid to die in St James, because they know their body is going to be mistreated and abused by the hospital and the hospital authorities. People are just refusing to die in a hospital, and I don’t think that’s right.
“If it’s necessary for people to be in a hospital at that very, very late stage where they’re very ill, and the family can’t cope at home, I think people should feel confident that they can go into an Irish hospital and be treated properly but this is not happening. One of the big problems I have with the medical institutions now is their insistence that anybody who dies of an AIDS-related illness in a hospital is put into one of these plastic body bags. I’ve been campaigning on that issue, and will be doing a twelve-hour fast outside St James’ Hospital on Christmas Day. This implication that somehow the disease is more communicable after death than before death is absolutely ridiculous.
“When AIDS was first identified in the Western world, medical staff would not approach a patient in a hospital without having an apron, wellingtons, mask, goggles, headgear, gloves right up to the elbow, because they didn’t know how it was transmitted. Since then they’ve learned an awful lot, and come to the conclusion that there is no need for any of those things.
“The only thing that is necessary is that if they’re going to take blood, then they will wear rubber gloves. I have no problem whatsoever with that. They use gloves when they’re taking blood from anybody, whether they know they’re HIV positive or not. So that’s perfectly reasonable to me. But for some reason, the body bag has persisted and one of my big goals in 1994 will be to try and change that, to bring a bit of sensibility.
“If I have a serious car accident and get killed in one of those real messy situations, I have no problem in being put into a body bag. But if I simply die of pneumonia, I do not expect that they put me into a body bag. It’s very degrading. The medical institutions in Ireland are degrading men, women, boys and girls. They’re putting little children into plastic bags, and it must be stopped. It is not necessary.”
out of the closet
For Pat, one of the most surprising results of admitting to having the virus is that he has finally shaken the feeling of being an outcast.
“In a peculiar way, the way things have worked out now, I’m actually the insider,” he smiles. “I’m finding that people are actually gathering around me. I used to feel very alone, lonely, being outside of society, but now I’m the centre of a lot of activity that is going on around me.
“I’ve friends in all strata in Irish society, from people in the government right down to people using drugs in the street, and I like that. I like being accepted and I like accepting people, no matter who they are or what they are. Learning that I was HIV positive, and having the struggles that I have had within myself over it has been a very enlightening and liberating experience for me.”
The tendency to divide people living with AIDS into two types – the “innocent” victims, a category which includes patients who contract the virus through blood transfusions, as against those who are infected sexually or through intravenous drug use – is one he has been made aware of, however.
“Many people have said to me that one of the reasons I have become such an acceptable symbol of people who have AIDS in Ireland is that number one, I am no longer using drugs, number two, I am a community activist in Ballymun where I live, and number three, I give lots of interviews and opinions in media and am perceived as very much a regular guy.
“People have said to me, if you were strung out on the street and using drugs with your arms peppered with recently created pinholes, then Pat Tierney would not be accepted. People would not allow me to work with their children, to teach their children how to recite and write poetry and all those things that I do.”
One of his goals at the moment is to encourage high profile people to admit being HIV positive.
“The great problem with being afraid to talk about having AIDS and being HIV positive, is it disempowers that person. That person cannot stand up and fight on AIDS issues, that person must go very quietly into the medical institutions, do exactly what they tell them, keep their head down walking out, and stay home when they’re ill. That whole disempowering process has to be challenged.
“If I were still in the closet on this issue, I would not be outside St James Hospital on Christmas Day, fighting on the body bag issue. I have empowered myself by going public, and that is what I am encouraging other people to do.
“At the same time I can understand not wanting to do so, and I’m not offering criticism to anybody. It was an extremely difficult decision for me to take, and I couldn’t see the decision being any easier for anybody else, no matter who they are.
“People are not going to come out protesting if they think they’re going to be discriminated against,” he acknowledges, “if they think there’s going to be prejudice, if their doctor-patient confidentiality is going to be breached by having stickers put all over their charts and files.”
under the bed
About two months ago, a blood test revealed that Pat has gone into the fourth and final stage of the disease, and has full-blown AIDS. He may live for several years, although he acknowledges that the chances of that are slim. He was advised to take AZT, but refused. An antibiotic called Sectrin, designed to prevent pneumonia, was also prescribed, but he has stopped taking it because of an adverse reaction.
“I’m not going to take any drugs that make me ill, it’s as simple as that,” he states emphatically. “If I have a choice between living a normal life for one year, or taking drugs, being ill and living for two years, I would rather live a quality one year.
“I felt pressured to take these drugs, but ultimately I made a decision and that was that. It’s my decision that stands.”
And if he should become seriously ill?
“I do believe in euthanasia,” he says calmly. “I believe that this is my body. The spirit that moves the body in the morning and gets it out of bed and moves it around where I need to go, that’s my property and nobody else’s. That does not belong to the State. I believe that I have total right to take that life whenever I choose. If I get to a point where I feel that my life is no longer worth living, that I am not contributing, and that the spirit does not have the strength any more to move that body about, and I end up bedridden, I think at that point I should have the choice of euthanasia.
“I’ve talked to some of my friends and they’ve assured me that they will collect drugs or whatever it is that I think I might need at the end, if I make that decision, so that’s good. Of course, if it were known that people did that, then they would be charged with murder, so I think there needs to be a bit of sensibility brought to that whole situation. The medical profession seem to be in the business of keeping you alive regardless of the quality of your life, and that is not right. That is not right.”
The Moon On My Back is not a book about AIDS. The subject isn’t even mentioned until the final five pages. It’s the story of a remarkable human being, his early life in institutions, the subsequent criminal escapades in Galway and Dublin, and his frequently hilarious adventures in the United States and Canada, where he learned to foster his love of poetry and the bardic tradition.
It’s a celebration of life, complete with tales of sex, drugs and illegal shenanigans of every conceivable nature. On one occasion, for instance, the couple whose house he’s breaking into return home unexpectedly, and the somewhat inexperienced Pat is forced to dive under their bed for cover, and listen in fascination and embarrassment as they proceed to bonk each other’s brains out.
He also gives an account of the endearing little habit he once had of making tea and sandwiches for himself and his accomplices after rifling somebody’s house, and worse, leaving a thank you note on the kitchen table. If the submission for a docudrama based on his book goes ahead, it should be one of the most entertaining programmes ever screened on RTE.
Pat Tierney wants people to be aware that his is not a tragic book. Quite the contrary. It’s about making as much as you possibly can out of whatever you’ve got, of living life to its absolute fullest. Right now he’s writing a play, also based on his autobiography, which hopefully will be staged at both the Galway Arts Festival and Dublin Theatre Festival next year. It will, he says, have a positive ending. And he still campaigns tirelessly on a variety of issues, some AIDS-related, some not.
Pat Tierney has already crammed ten lifetimes’ worth of living into thirty-six years, and says with a smile that he intends to be around for a long time yet. You can’t but believe him. He is, on his own admission, a very, very, determined person.