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A Sister's Story

"If I've got what they say I've got, then I am going to throw myself off the WestGateBridge". The words came to me down the phone line like a sledgehammer. This had to be serious. My sister was the strongest person that I've ever known, why would she be talking like this? I tried to stay calm, saying the usual, "Come on, it can't be that bad. Just tell me what it is and you will feel better". She wouldn't tell me, saying only that she would wait until the second test results came in. I hung up the phone and reached for the medical book and began searching for symptoms that I knew she had. I didn't get very far. A: AIDS.

With my heart racing I went to my husband "I think she might have AIDS". His reaction was as expected. "Don't say that, don't even think it. It couldn't happen." Well, what else could it be? I checked out Leukaemia, Cancer and anything else that I could think of that would make some sort of sense out of the words that I had heard. It wasn't too long after this that our worst fears were confirmed: my sister was diagnosed with HIV. This was in 1994.

At that time my sister was what the world would class as a normal, every day mother of two. She had been living with her defacto husband for nine years, moving from the country to the city. She had fallen in love and was living out a fairytale life that would eventually become a nightmare. She and her partner had had the usual marriage problems. He would often go out and leave her with the children, getting home late but always seeming to have a reasonable explanation of where he had been. So now, with the diagnosis, how did this happen? It just didn't make any sense, as she wasn't the usual stereotype that I had associated with HIV/AIDS. There was no history of drug use, she never had a blood transfusion and she certainly wasn't promiscuous. I just couldn't understand it and I guess, like her I didn't want to accept that it was true.

We learned that HIV could lie dormant for some time before rearing its ugly head and so the children had to be tested. It was like the advertising campaign, the Grim Reaper standing with a bowling ball ready to bowl a strike. The question being, was he going to wipe out the whole family? Fortunately we got the results that we all hoped for - the children were clear. It became increasingly obvious to my sister and to us, her family that the only way she could have contracted this virus was from her partner. First of all, the late nights spent away from his family and finally finding the evidence that he had been to a gay bar. Her knight in shining armour turned out to be a person who she never really knew at all. He was bisexual but in denial. She struggled to keep her family together hoping that the four of them could learn to live with, and fight the virus, together. For the rest of our family and me, it was very hard, looking at a man who had given my sister a death sentence and having to welcome him into our homes. For her sake, we did it but eventually she left her partner.

When I first found out that my sister had HIV I went to my local doctor to find out exactly how the virus was transmitted. I didn't want to feel uncomfortable when I first saw her. I just wanted the facts. We had always been close and I wanted it to stay that way. Unfortunately the advertising that is supposed to educate people for example the Grim Reaper, only managed to scare them further. I was extremely pleased when I left the doctor's office, realising that the only risks of contracting HIV were by blood to blood or sexual contact.

The town in which I live is like many other small country towns. Everyone knows everybody else. I was petrified of people finding out about her HIV status, but I also needed to talk about what was going on. I told a couple of my close friends and they were extremely understanding, although after they would leave, I would break out in a sweat as if I had just committed a crime by telling them. For the next few days I would wait to see if any of the town gossips had got hold of the story. I was so worried. What if anything happened to my sister and her children then had to come back here to live with me? Would they suffer because I had told somebody about their mother's illness? There are many people who live in small communities, including this one, who suffer with HIV/AIDS, but in general one would never know about it. It is much better to have cancer than the HIV virus, such is the stigma that is attached to HIV, especially in a small country town.

In 1999 my sister's health deteriorated despite the drug regime she was on and she developed CMV Retinitis, a complication of AIDS. She was extremely ill and the virus was ravaging her body. She had lost a lot of weight and looked almost anorexic, and of course I was wondering if she would make it. As a family we discussed worst-case scenarios and it was decided that my brother would take both her children if anything happened. When people would ask how she was, we would always avoid saying what was wrong. It was hard, you just wanted to run out into the street and shout, "Yes she has AIDS". To her credit she showed plenty of courage and strength, and when she got out of hospital she started living her life to the full. She was not going to be a victim. To watch her made me feel exhausted. She never stopped, using one of her sayings, "While my legs move I am still alive."

Since then there have been many ups and downs and my sister and I still enjoy a very close relationship. Growing up she was my big sister and my idol, now she is my inspiration and my courage. I have learned a great deal from this virus. It is truly a masterpiece of nature, it guarantees its survival in the human race be feeding on their weaknesses: ignorance, discrimination and fear. HIV DOES NOT DISCRIMINATE. It can and will affect thousands more people in this country. You cannot think you are safe just because you don't fit the stereotype - ordinary people DO get HIV. Don't condemn HIV positive people and their families to silence. Only through education can we battle this unseen enemy and ensure it does not destroy the coming generation.