Stories
Mark - Much to live for, despite diagnosis
When Mark learned he was HIV positive, he felt shock. “How? Where? Who?”, the then 44-year-old asked himself.
But, as a single parent, his main thought was his son, then 14. And now, three years after the diagnosis, it’s still his son who sustains him in his daily fight to cope with HIV.
“I didn’t know I had it. It was just the flu,” Mark recalls. “I got crook and I went to the doctors to see if I had glandular fever and she just said we’ll do a HIV test and that’s how I found out.”
How did he get it? “I’m not 100 per cent sure – but it’s through sex,” he says.
“All I could think of was I’m a single parent, what am I gonna do with my son because I got a really bad diagnosis. I was given five years to live. So the only thing that came into my mind – I suppose the diagnosis didn’t really come into play – it was more what am I gonna do with my son.” Mark has four other kids, all of whom lived away.
HIV caused almost as much upheaval to his son as it did to Mark, particularly uprooting him from his life in Townsville, leaving his friends and heading back to Mark’s family in Melbourne. “It’s taken him three years to get his life in order,” Mark says. “I think it devastated his life more than mine when I found out I had five years to live. I think my son has been my biggest support. I try not to think about the HIV – it depresses you. My son has got me through. I’ve got something to live for.
“It’s not easy – I think you have got to have the attitude.”
For Mark, who has been heavily involved in sport most of his life, the most difficult thing about being HIV positive is that it saps his energy.
“I’ve lost all my energy. And I can’t do the things I used to do – even if I want to, I can’t. I’d say that’s probably the thing that’s hurt me the most – that I can’t do what I used to, mostly sport. I did a lot of work, and still do now, with young kids and teenagers – footy, basketball, swimming – and I like to participate with them – these days I just don’t have the energy to jump in and be part of it…”
The stigma of being HIV positive is also a daily challenge. “So many people, the general public, still believe that just being in the same room as someone with HIV, you are going to contract it – and that seems to be the biggest problem,” he says. “I’ve met people, if they knew I was HIV, they wouldn’t even talk to me. And then I’ve met people who have no problem – they’re educated. That’s the biggest problem – education.”
So what are Mark’s hopes for the future? “I hope to keep going where I’m going mate,” he says. “Watch my grandchildren grow – and with the work I’m doing, I really want to educate the youth of the seriousness of unprotected sex, not just HIV – lots of other venereal diseases that go with it.”
Mark is a residential youth worker and is also working with the Speakers Bureau. “The kids are flabbergasted. It blows them away,” he says. “The best part is when you actually finish talking the kids come up and ask their own questions. It’s surprising some of the questions that they ask because they’re spot on. It’s what they need to know and I think we need to put more of it out there.”
Mark became a grandfather for the first time three months ago. “Pretty happy with that – puts a smile on my face every time I talk about her actually.”
Michelle - Michelle sees hope in future
Life’s been tough for Michelle.
Taken from her Indigenous mother when she was a child, losing her HIV/AIDS-infected husband to a brain tumour, contracting HIV herself, shunned by her family – she’s been dealt some very tough cards in the game of life.
And yet 39-year-old Michelle still looks at life with a gritty optimism. Two teenage daughters, aged 19 and 14, a new partner, and a move to the NSW Central Coast have her contemplating the future with hope and motivation, while living with HIV every day.
It was just over 18 years ago that Michelle, then living in Melbourne, learned she was HIV positive. “I was living with my late husband who was already diagnosed so I knew a little bit about it,” she says.
She remembers the moment when the doctor told her in his consulting rooms, while her husband and six-month-old daughter waited outside. “The doctor asked me if I wanted to see a social worker. I turned around and said ‘no’. There was no point crying over spilt milk. The damage was already done. So I walked out. It was about starting the rest of my life. There was nothing anyone could do.
“I already had a six-month-old daughter so I didn’t have time to wallow in self-pity. There was someone who needed my 100 per cent attention. I couldn’t allow myself to fall into a heap – I needed to be there for her.”
The reaction of other people in her life wasn’t so stoic. When she told her father and stepmother that she was HIV positive, they walked away, declaring that she “had just signed her death warrant.”
In 1992, after four years together, Michelle lost her husband to AIDS – they had only been married just over a year. Her second daughter was born in 1994, four years after she was first diagnosed HIV positive. Her family still refused to see her and, to this day, she’s not allowed in the house – “it was like my children had been punished for my diagnosis,” she says.
For Michelle, the main issues around being HIV positive have been her family walking away, and protecting her children from the discrimination and stigma that came with living with the virus. She kept quiet for a number of years, but as time went on and her daughters got older, she got more involved in the HIV positive sector, particularly the Speakers Bureau and Positive Women, and started speaking out.
Michelle’s motivation was two-fold: she wanted to prevent the stigma and discrimination she and her daughters had gone through, while educating young people about the importance of safe sex and protecting themselves. “I had a world of information that was inside of me – and I needed to share that,” she says.
So are the messages getting through? “I’ve had kids over the years who have come up and cried at the end of my talk – and told me that, because they’re back with a partner, they’re now gonna go home and speak to them – and we’re not having unprotected sex. We’re gonna go and have blood tests and we’re gonna use protection right up until the results come back.”
“You know that the message is getting through when the responses are coming back like that. It’s a ripple effect. If you can get through to one person, I feel I’ve more or less succeeded – because then they’ll go out and tell someone and it’ll just keep going and it’ll be an ongoing conversation.”
Michelle agrees with this year’s World Aids Day message. “If you go back to the Grim Reaper ad – that really scared the life out of people and stopped people from actually going out and enjoying life and not being aware that if we use protection we can have as much fun as we like.
“This slogan is quite relevant to the positive people too. It doesn’t mean we can’t go out there and still continue to enjoy life, or have partners or relationships – because we have the ability to use protection and speak up and inform our potential partners whether we’re positive or not, or we’ve got an STI.”
Michelle feels strongly that HIV/AIDS promotion must be ongoing. “Unfortunately, World Aids Day is on 1 December. We are affected by HIV every day of our lives – and it actually changes our lives every day. It’s a little but disappointing that we wait one day of the year where it’s in people’s faces – because after that people forget about it.
“We should have one day that represents but it shouldn’t be forgotten for the other 364 days of the year – because we don’t forget it and neither do our families, friends and partners.”
Michelle now looks to the future with real optimism, despite her condition.
“It’s all about the will and the want to live and having a good life,” she says. “I never thought I would be with a partner and we would be running our own business. He’s so supportive of me and the girls – it’s just amazing to see how things have changed.
“There is hope for me.”