Mike O’Keeffe, 56, diagnosed HIV-positive in 1995, met Gus Beadie, 48, a recent import from Glasgow, through the Community Support Network (CSN). It soon became apparent that they had many similarities and common interests. Both come from rich life experiences and a strong bond developed. They shared their story with Saysana Sirimanotham.
I grew up regional Victoria. I was arrested at 19 for a homosexual act. It was totally scandalous – shameful.
It made me move away to Melbourne where I worked a series of diverse jobs. This included working for the Department of Education as a teacher aid in a school for students with severe mental disabilities in 1979 and the Victorian Deaf Society. This then led to working in a program for deaf youth teaching life skills, and, later, the Youralla Society which provides quality disability services for Victorians. I was later to join the board of The Deaf-Blind Association, the leading organisation in Victoria providing services to people with multi-sensory disabilities. Working with people with disability has made me more sensitive and aware of others.
I met my first husband on the very first night I went out to a gay bar in Melbourne. We were soon to move in together and raise his two children together. The relationship ended 12 years later.
From 1983, I volunteered at the Victoria AIDS Council for their version of CSN, home-care for people dying. Palliative care, it was in those days, and it was pretty taxing.
My husband died at home with me in bed on my birthday in 1994. By 1995, I lost the plot. I was emotionally drained and was sick. This was the year that I was diagnosed positive and started combination therapy. I started to use recreational drugs.
I gave up work in 1996. I was ill all the time: bad sero-conversion and diagnosed with depression. That year, I went to Sydney for a Sleaze Ball party and I’ve never been home since.
Due to my interest and tertiary background in the behavioral sciences (psychology), I was self-diagnosing and as a result started self-medicating. I had stopped the combination therapy in favor of crystal meth. It was a distraction from the depression and low self-esteem. Retrospectively, I was probably suicidal.
Gus (left) and Mike in front of a painting by Mike
In 1998, I found that I had an infection in my heart and was on life support for a few days. When I was discharged from St Vincent’s emergency, I partied at the Mardi Gras like it was my last two days. I returned to hospital and had subsequently had a series of transient ischaemic attacks (TIA) – ‘mini’ strokes.
A turning point in 2001 saw me dump the ‘sex, drugs, rock ‘n’ roll’. I stopped hanging around the party people. I had no money as I had spent all of my superannuation. I locked myself in my flat and was living in squalor. I requested a CSN volunteer to help me with the cleaning but it didn’t last long. I wouldn’t let [the volunteer] do anything. I had a big guilt trip: It’s my mess, I shouldn’t need someone else to clean it up. Because I had always been on the other side of caring – raising children, caring for a dying partner, training volunteers to promote the values of living independently – my personal attitude was that I didn’t need anybody. I thought other people are more deserving than me.
I started accessing the services of Positive Central in Redfern which was pivotal. This included a social worker, the physiotherapist, nurse, psychiatry team and the cooking and nutrition program. I also started accessing the Positive Living Centre (PLC). Art was a big part of my rehabilitation, especially at The Pine Street Creative Art Centre (one of the initiatives of Positive Central). By 2002, I enrolled myself into TAFE NSW to complete an advanced diploma in fine arts. My artwork up to today ranges from assemblage, printmaking, photography, sculpture and painting to digital imaging.
I met Gus, who later became my regular CSN volunteer, for the first time in April 2008. I had requested CSN services and Gus had come with two other volunteers for a cleaning blitz. My house is cluttered with clothes and dust. I lost all my possession [once] in a fire after the heart surgery, so I hoard things from cookbooks to cooking utensils. I’m a cooking gadget queen. When you lose your things, you’re nothing. I’m also very particular about whom I let in and I have an adversity to ‘do-gooders’. I live alone and am quite solitary. At home, when I close the door, I close my inner sanctum.
I still have issues about other people cleaning up my mess. Part of my pattern is to madly clean up before Gus comes around – and then we clean together. I presently have peripheral neuropathy which hinders me. There was a lot of anxiety and shame about taking on a CSN volunteer. This required lots of counselling leading up to and during [the appointment]. For the first 12 months, I was paranoid that Gus was fed up with me and was going to leave. Gus rang me up one day from work in Parramatta and announced that he’d be coming around. He said, “I’ll buy the cupcakes if you put on the kettle”. My first reaction was that he’d give me the sack. It turned out that he didn’t and this was a turning point in the lessening of my paranoia.
I like Gus and enjoy his company. Because Gus was new to town, I could tell him things about Sydney – places to go and history of the city. We share books and DVDs, and both like Julie Zemiro’s Rockwiz on SBS. He comes to all of my art shows.
Gus is a special person in my life now. I don’t feel that he has ever been judgmental at all. I feel like I’m in his hands. If he stopped being my CSN volunteer we would still be friends.
Between 1982 and 1996, my partner [at that time] died of an AIDS illness, so its through my experience of caring for him when he was dying which gave me a picture of what it’s like to live with HIV and to live with someone with HIV. It was a personal education. I recognise the courage that it takes to live with HIV – the self-esteem and health issues.
From 1996 until today, I’ve been with my current partner and we lived in Glasgow until 2005, then briefly in New Zealand, before his work bought us to Sydney in July 2007.
Due to some complication with my visa situation when I arrived, I knew that I wanted to keep busy and had in mind to do some volunteering. I looked at various options online and the ACON website led me to filling in an application form to become a CSN volunteer. I was quite confident with the reason of why I joined and undertook the two-day CSN orientation course. It was informative, well-run and informal. I enjoyed the whole process.
The first time I met Mike, he was very pleasant and welcoming. Mike is familiar with my home town, Glasgow, and this was common ground that bonded us instantly. It became apparent quite quickly that his life experience, his politics and sense of humour was similar to mine and to people who I was spending time with. We are in the same age group.
Mike worked in the caring profession, as did my [previous] partner in Scotland who found it equally fulfilling. We had both gone through the death of a partner. There seemed to be some common history 12,000 miles apart.
I see Mike every second Sunday and we always start with a cup of tea to find out what the other has been doing in the past fortnight. I’ve had visitors over from the UK lately and have been asking for Mike’s advice on where to take them. Mike likes the theatre, the arts and cinema – so he’s good for recommendations. We always have to lots to chat about – the normal kind of chit-chat that happens when you meet someone over a beer.
I don’t see it as a routine shift. It might be different every fortnight – sometimes two hours, sometimes three. It depends on how we both feel. There might be visits where not a lot of work actually gets done and we might opt instead to go out for a coffee or to the shops, just to get out of the house.
When it comes to negotiating housework tasks, it’s always on Mike’s terms. What is important for me is to not impose what I think needs to be done – I’m there to lend support. Occasionally we’ll attack a room and throw some stuff out. When this happens, Mike might do the culling and I’ll do the dumping. During this process, I’ll get a history of the things that he throws out, which is quite funny and revealing. Mike emptied out a wardrobe a few weeks ago which he couldn’t fit in to anymore. I laughed because it was full of ‘gladrag’ – clothing that maybe a flighty young thing, one who was hoping to turn a few heads, would wear. It included items that I wouldn’t know how to put on!
I’m still forming a relationship with Sydney. Having come from Glasgow and New Zealand, it was a bit of a culture shock – big and brash. Back home in Glasgow, it is very familiar and easy in the bars. I wasn’t used to the way Sydney people socialise.
Sydney is home for the foreseeable future and I’m optimistic about it. Meeting Mike has helped in that respect. In learning about a new country, it was nice to be able to get information about things that I read about in the newspaper and advice about things to see and do rather than just following the tourist brochures.
I look forward to my CSN shifts with Mike – it’s not a chore. For me, it’s a very comfortable relationship and it wouldn’t have worked for me if it hadn’t been.
Saysana Sirimanotham is currently one of the Training and Recruitment Coordinators for CSN. He has been volunteering with this ACON project since 2005.
Since 1984, Community Support Network (CSN), a project of ACON, has been committed to supporting the quality of life, independence and choices of people with HIV in New South Wales.
Practical home-based support and transport assistance, as identified and required by its clients, is offered without regard to mode of transmission, beliefs, backgrounds or sexual orientation. Light domestic tasks ranging from cleaning through to grocery shopping are carried out by dedicated volunteers who first undertake a comprehensive and mandatory orientation training course.
In 2009, CSN commemorates a 25-year milestone – a network which has grown into approximately 1,800 trained volunteers, with over 80 actively volunteering every week. Diversity is highly valued, with both clients and volunteers from all walks of life – gay, straight, pensioners, students, lawyers, men, women, families, people of culturally and linguistically diverse backgrounds, and more.
For more information on CSN or to become a CSN volunteer, go to acon.com.au/csn or e-mail CSN at csn@acon.org.au [1] or call 02 9206 2031 or freecall 1800 063 060.
Links:
[1] mailto:csn@acon.org.au