Mark Gaffey, 47, and Carlyn Chen, 31, were matched up through the Ankali project over four years ago. They 
have formed a close and supportive relationship, and enjoy spending time together. They shared their story with John William Jones.
Mark Gaffey
I was diagnosed HIV in 1985 and I was living on the street at the time. I didn’t feel any sicker than you would living on the street at anytime. HIV was just something else, I didn’t take any notice of it and that included not taking any medication.
We got a house through my friend at the time, through a local housing co-op. He left me for a woman and gave a month’s notice to the housing co-op, but I only found out a week before we had to be out. Then he turned up with a truck and six other blokes wanting to take all my stuff.
I got help from BGF to get out to somewhere more secure. I moved here where I have been for three years. But before I moved, he sent some blokes around to beat me. That is how I got the fracture in my spine and then the fracture activated the lymphoma which had been lying dormant.
I went on to have chemotherapy and laser treatment. I have been in remission for about 12 months. I still have a bit of pain in my back. I take Endone when I think I need it. If I can get away with doing something else like having a hot shower or something else. I try to take my mind off it by doing my art. The lymphoma has been my only HIV-related health problem.
Since I met Carlyn I have learnt more about myself, I am more expressive; I actually like myself a lot more since I met her
I am on my sixth or seventh regime of tablets because I was never very good at taking them. There were a couple of the big ones that I couldn’t swallow; I actually gagged on them. I think it was psychosomatic. Nowadays I can swallow them easily, I don’t understand that. Now I have nine or 10 tablets in the morning and the same in the afternoon. I have it with a bowl of cereal.
When I heard about Ankali, I was a little bit hesitant. When I first met Carlyn, I was a cautious. I didn’t realise that I was only existing, I wasn’t actually living. I was making sure my friend was OK and I was forgetting about myself.
When Carlyn came onto the scene, she listened to me, which was very strange to me because I was used to seeing it go through one ear and out the other. I really liked Carlyn and after the third or fourth visit I was more open to what she was supposed to represent. When I was in hospital with the lymphoma she was the only visitor that I had. I really looked forward to that because she lifted my spirits when she came in. I see her more as a friend now than me being a client.
Carlyn and I have been up to the Blue Mountains. She has introduced me to some her friends that are in a band and I got an autographed CD. We have been out to Centennial Park, the botanical gardens, to the movies and sometimes we will grab something to eat and just go to the park, talk about nothing and watch the world go by. Sometimes I will go into the city and sometimes she will come out here. I can call Carlyn when I want and she knows my number so she rings me to see how I am doing. We get together once per fortnight but I leave it for her to suggest when we get together because I know she works, so I’m happy to fit into her schedule.
Since I met Carlyn I have learnt more about myself, I am more expressive, I can talk to her about almost everything. I actually like myself a lot more since I met her. She seems to have that effect on people. She has got me into healthy organic food. Before I just thought they were tree huggers. It was all very weird to me at first because I was used to being in control. I thought I was being introduced to someone that was coming here to take me out for a walk. That went through my mind for the first couple of visits; after that I realised it was nothing like that at all. When Carlyn and I eat out she will ask me to order dinner but I keep telling her to do it because she’s very good at selecting really nice food. I haven’t got food poisoning yet!
I would encourage others thinking of getting an Ankali volunteer to go outside the square that you are used to living in. It gives you the human contact that you need and helps you to open up a little bit. Some people would find it hard but don't let that stand in the way of progress.
Carlyn Chen
I was born and grew up on Sydney’s north shore in a sheltered, middle-class family from an Asian background. I now work part time for an overseas development organisation. I have lived in inner Sydney for a number of years and I wanted to get involved in the community and someone told me they were involved in the Ankali Project. I am not a trained social worker, but Ankali is about friendship and I can be a friend! Friendship is a one of the most powerful things in the world.
The Ankali volunteer training was very comprehensive over a couple of weekends. We were told about the health aspects of HIV and also the more confronting issues like illness and death. I felt really well prepared to become a volunteer.
When I was matched with Mark, I felt excited because I had waited awhile, so I was looking forward to meeting this mystery person. The first meeting I recall as a comedy of errors on my part as he was living quite a long way out west and I ran out of petrol and my mobile phone had died. I waited for the police to come and rescue me, and I used their mobile phone to call Mark. He was just concerned that I was ok. When I got there, I saw his house and we went for a walk around a little lake near his house. He told me his life story, which was a real privilege to hear. He was very open with someone he had just met. He has been through a lot of difficult things in his life and has overcome a lot of hurdles.
The relationship has evolved in that we are pretty clear and relaxed on the boundaries and our expectations of each other. We have negotiated that by talking about it. If Mark asks me something that I don’t feel I can do or I’m not sure of, I’ll go away and think about it and we’ll talk about it again.
I get a lot from Mark, like any friendship. I like who he is as a person and it’s a real privilege to know him
Mark and I have been matched four and half years. It's very relaxed being with Mark; he is easy going, has a great sense of humour. He is really comfortable talking about what's going on in his life and talking about his emotions. We have really great and meaningful conversations. He is also really creative; he will talk about creative ideas he has about his art or how he is decorating his house.
I hope I am a good support to him. Being a sounding board is important and hanging out with him and doing social things, he is keen to try new things, new foods from different cultures. We have been mountain bike riding, bush walking, to art galleries, swimming at the beach, to movies, gardening – pretty much whatever is on, we’ll give it a go. I see it as a ‘normal’ friendship. If I wasn’t a part of Ankali, I would still be Mark’s friend.
I get a lot from Mark, like any friendship. I like who he is as a person and it’s a real privilege to know him. He is a fighter and a very determined person. I have seen him grow a lot as a person and be a lot more assertive in looking after himself. It is also really grounding for me when I speak to him, it helps me to put things in perspective when I get stressed about little things in life and I see how he fights through really big things. I just enjoy his company.
The Ankali group experience has been helpful in that it’s a regular group of people who understand what its like to support a client. It’s nice to be able to share the joys of who Mark is and they want to hear about his wellbeing. Even though they have not met him, they get to share a little bit of excitement of who he is. They support me and give me advice for the more intense times like when he was sick in hospital. It was stressful when he was sick because he deteriorated very quickly; his weight dropped, he was frail. We were both scared about whether he would make it through. I wanted to support him as much possible and the hospital was an hour’s drive away.
To other people thinking of volunteering, it does take a commitment, but only the kind of commitment that you would give to any friend. It’s not about a charity relationship, it’s is about a real relationship. If you are interested in a real relationship, get involved. It can make a huge difference to someone’s life. You also meet lots of wonderful, giving people from all walks of life.
The Ankali Project
The Ankali Project was established in 1985 to provide one-on-one emotional and social support to people living with HIV/AIDS (PLWHA). The project recruits, trains and then supports volunteers who in turn provide support to PLWHA.
The kind of support that volunteers provide has changed over the years, as have the needs of PLWHA. Volunteers can provide up to five hours per week with their client including face-to-face or phone support. Volunteers come to a weekly support group to give and receive support to other volunteers.
The project is celebrating its 25th anniversary and is a part of the Albion Street Centre.
For more information on Ankali, you can call 02 9332 9742 or email: ankali@sesiahs.health.nsw.gov.au [6]