Hope
This story originally appeared in Positive Living

A magazine for people living with HIV/AIDS

July/ August 2001

I was diagnosed in Brisbane in mid-1995. I remember the moment vividly. John, the nurse who had done the HIV test for me, said that he was sorry to have to tell me, but my test had come back positive. My very first thought: I am going to miss seeing the next Star Wars movie. I don’t know what provoked such a banal idea – the sudden shock of the unexpected death sentence, or perhaps the fact that I am an incredibly shallow person. I say death sentence because of John’s next words. He said that I shouldn’t worry, because I probably had at least three to five “good” years left. I was not naïve about HIV. I had lost friends at the beginning of the epidemic, and knew how it went. The pneumonias, the cancers, the fungus that eats your brain, the dementia, the blindness, the diarrhoea that doesn’t stop, the wasting … I felt myself fading out, I felt nothing, which was apt because that’s what I was sure I had left. Apart from the shame, of course. How could I have let this happen to me? I was studying public health, for God’s sake! My PhD, two-thirds complete, was on HIV prevention. It took me a couple of months to decide that I didn’t want to waste any part of the time I had left on that stinking thesis, and I took off, back to my job in Central Australia. Over the next year, however, two things became clear: combination therapy was going to save my life; and it wasn’t going to happen while I continued to live five hundred kilometres from the nearest hospital.

Last year, I sat in a cinema and watched, with some satisfaction, The Phantom Menace. I had a new PhD, a new career – a whole new life in a new city. I took it as a private message to me that George Lucas had renamed the original Star Wars movie A New Hope. The three-to-five years of my death sentence had passed, and they had not been “good” years at all. I looked back on them as a pretty bleak time. But I wasn’t dead! I wasn’t even sick, and courtesy of combination therapy, I had an undetectable viral load and almost twice as many T-cells as when I was first diagnosed. Most importantly, I had a future.

Granted, it’s a completely different future to the one I imagined for myself before I was diagnosed, but I’ve learned to be patient and flexible. HIV has taught me a lesson about the narratives I construct about myself: never try to second guess the future, because you never know what can happen. We have this idea that the future sort of accumulates from what has gone before, like a jigsaw puzzle that we’re putting together from the bits and pieces of our experience. At the end, our life will form a picture. But actually, our experience is more like Lego than jigsaw pieces: if we don’t like the picture that’s forming, we can break it up and put the pieces back together in a pattern we like better. We might be stuck with the shape of the pieces, but we can put them together any way they’ll go.

I’ve heard lots of stories from other positive people about their plans for the future, and it amazes and delights me that we are able (and brave enough) to make these plans. Some of them are incredibly ambitious – having a child, starting a course of study, saving for a major trip. Some of our plans recognise that we are probably going to be around for longer, and need to worry about health risks other than HIV. We are thinking about learning to cook healthy food, about eating sensibly, exercising more, and modifying our drug and alcohol use. Those of us who gave up work because of illness may be thinking about going back to work. Those of us who were lucky and never had to give up working may be thinking of changing our job to something more challenging or something more long term. Some of us are accepting that we can’t spend our expanding future alone, and are starting to think about sex again, and maybe even to dream about the possibility of love. Those of us with kids are beginning to believe that we might see them grow up, and to hope that we might one day baby-sit our grandchildren.

These new visions for our future are possible because combination therapies have allowed many of us to stay healthy, and others to become healthy for the first time in years. There is, of course, a down side – it just wouldn’t be HIV if there wasn’t a catch. We have had to adjust our notions of health, some of us considerably. Our new ideas of health have to factor in the side effects of these life-saving drugs, including diarrhoea, nausea, peripheral neuropathy, lipodystrophy, and pain. Some of us face the future with vastly altered bodies, faces and self images. Some of us only see glimpses of a sunny future, when the dark clouds of depression break for a moment, or a day. And some of us still face uncertain futures, because drugs are failing us, and we still don’t know what resistance might mean.

There is still – always – room for hope in our lives. Call me a romantic fool, but I still hope for a cure. I hope those scientists keep plugging away at it, and that drug companies keep chucking dollars at it. I hope that they find a vaccine that prevents anyone else from catching HIV. I hope I get to retire at 65, and that between now and then I get to see at least five more new Star Wars movies. I hope I get to look back at what I’ve created out of all the bits and pieces of my life with HIV, and see something overwhelmingly positive. And I hope lots of my positive friends are there with me to celebrate.