Enjoy life. Take control. Stop HIV/AIDS

A World AIDS Day reflection

A Speech for the Victorian Parliamentary observation of World AIDS Day, 2008

1 December 2008

It has been said that in the moments before death, your life flashes before you: the triumphs, the trials and the tragedies of your past. When you are diagnosed with HIV, a similar thing happens, except it’s not the past that you see – it’s the future.

The future triumphs that you’ll miss: the grand schemes that will never come to fruition; the grandchildren you will never see; even the Grand Final that Richmond will never, ever win.

The future trials loom large on your horizon: illness; hospitals; suffering; sharing the news with loved ones.

And the future tragedies: opportunities; loves; careers; even life itself cut short.

In the moment of clarity at diagnosis – for me it happened in August 1995 – the idea of this year’s World AIDS Day theme would have sounded ludicrous, the worst sort of denial of reality.

Enjoy life!

What life? It had just been ripped away by those blunt words: I’m sorry, but the test is positive.

Take control!

How? In 1995, as now, the virus was incurable. In my body, in Australia, all over the world, HIV was manifestly out of control.

Stop HIV/AIDS!

Too late! At 34, I had as much chance of stopping the tide as I did of stopping HIV/AIDS.

Now, as I enter my 14^th year of living with this virus, and celebrate the 10^th anniversary of being diagnosed with AIDS, I can appreciate this year’s theme not as a denial of reality, but as a challenging call to courage and action to me, to all people living with HIV, and to the whole Australian community.

For me, this message has a new resonance, particularly because the early death predicted for me in 1995 has not eventuated.

The other truism about the clarity you achieve with a brush with death is that each moment of life afterwards becomes more precious. Although I have not always been lucky with my health over the last 13 years, even the bad days have been precious because they were days I never expected to have.

Enjoying life is no great ask when every day is an unexpected gift.

Another truism with HIV is that if you don’t take control of the virus, then it will take control of you. Some of the worst days of living with HIV are the days when exercising control is a chore, because of illness, drug side effects, the demands of complex medical treatment, and the mental and spiritual toll of living with chronic illness.

But this control is much easier now than it was in the past. Today I take two pills to control HIV, as opposed to the 18 I was taking in 1997.

Other aspects of control have become easier too. When the science of anti-retroviral treatment was new, I felt compelled to know the details of the classes of drugs I was taking: nucleotide and nucleoside analogue reverse transcriptase inhibitors; non-nucleoside analogue reverse transcriptase inhibitors; protease inhibitors.

These days, things are simpler: I take the blue one in the morning, and the yellow one at night.

Perhaps it is a sign of the advancing old age I never expected to have, that I no longer need to master the details to feel in control.

The joys and trials of this journey have made the third part of this year’s World AIDS Day message much more important to me. Stop HIV/AIDS. Nobody should have to live with this virus.

I had a leap of World-AIDS-Day joy to hear that with the combined efforts of the Minister’s department and our many excellent community organisations like PLWHA Victoria and the Victorian AIDS Council, we have succeeded this year in reducing the number of new infections in Victoria for the first time this millennium.

As a state, we are taking control and perhaps stopping HIV/AIDS. This gives me another reason to continue to enjoy life.

Thank you.

HIV: Let’s Talk About It

A speech given at the Victorian Parliamentary World AIDS Day  event

December 1st, 2006

At the first international meeting I went to about HIV, a young woman from South Africa told me about how she had become infected with HIV. In her soft, shy voice she said that she had been 16; it was her first time having sex. She had become pregnant that first time, and when her son was born she was told that both she and her baby were HIV positive. Although she was 25 when she told me this story, she had still only had sex that one time in her life, and the legacy of that single sexual act was a lifetime of HIV for her and her new baby.

 

It is horrifying, but in 2006 around the world, this is becoming a common story. International figures tell us that HIV is increasingly becoming a disease of young, heterosexual people.

 

In Victoria, I think we are more used to the idea that HIV is a disease of people like me: middle-aged gay men. We think this because in recent years, most Victorians who have been diagnosed with HIV have been gay men in their 30s and 40s. I think for most Victorians, it is more comfortable to think that HIV won’t ever affect them, and they don’t worry about the possibility that they will ever become infected.

 

But though we middle-aged gay men make up the majority, we aren’t the only people being diagnosed with HIV in Victoria these days. In the last three years, more than 750 Victorians have been diagnosed: we have one of the fastest growing epidemics in the country. More than 100 of those diagnosed have been young people, people under 30. And eight of those diagnosed in the last three years have been teenagers, like my South African friend, left with the legacy of a lifetime of HIV from their first sexual experiences. The figures are a grim reminder to us that although we often feel comfortably protected from the HIV epidemic raging in Africa, Asia and Eastern Europe, the reality is that HIV is here in Victoria, even in our kids bedrooms. And it’s not just HIV: in the first six months of this year, more than 5000 Victorians were infected with Chlamydia, a sexually transmitted infection that can lead to sterility in women. Half of those infected with chlamydia were under 25; half of the women diagnosed were under 22.

 

This week I have been reading a lot about young people, so that I could be ready to talk today. I have been particularly disturbed by the most recent survey of Secondary Students and Sexual Health, a national survey conducted by my colleagues at the Australian Research Centre in Sex, Health and Society. The most frightening sentence I read was: “Consistent with their greater likelihood for having multiple sexual partners and having sex with people not known to them before sex, young men in year 10 were most likely not to have used a condom because the sex was unplanned”.  I was frightened because the easiest and most effective way to prevent the diseases that I have talked about, HIV and Chlamydia, is to use a condom, and our kids are not getting that message clearly enough.

 

The survey reports that one quarter of year ten students and almost half of year 12 students had experienced vaginal intercourse, and that the proportion of teens who were sexually active had consistently increased since previous surveys. I was glad to read that some of this sexual activity is protected by the use of condoms, but 12% of year 10s and 33% of year 12s had experienced vaginal intercourse without a condom. Although most students had correct information about HIV risk, one in five year ten students and one in ten year 12 students still thought that HIV only infects gay men and injecting drug users. Fewer students had correct information about HIV in the most recent survey than in previous surveys, and despite how common Chlamydia infection is among young people, less than a quarter of students in the survey understood about their risk of infection with this and other sexually transmitted infections – only 6% of them thought that they were likely to become infected with an STI or HIV.

 

We have clearly dropped the ball when it comes to giving our kids the knowledge and skills they need to protect themselves from sexually transmitted diseases. It is easy to blame others for this failure – the government, or schools, or the health system – but really we are all to blame for not preparing young people for the risks that they face as they move into sexual adulthood.  It is a sad fact that 60% of young men and more than half of young women in the schools survey were not confident about talking to their parents about HIV or sexually transmitted infections. If we want to see dramatic drops in the number of young Victorians who are being infected with HIV or Chlamydia or any other sexually transmitted diseases, then we all have to take responsibility for making sure that our own knowledge is up-to-date, and that we are ready to talk to our kids about it. Remember one simple message: using condoms prevents HIV and most other sexually transmitted infections. Take courage from this year’s World AIDS Day theme: HIV – Let’s talk about it. Don’t make your first conversation with your kids the one my parents had to have with me; the one where they tell you that they’ve been infected.

Thank you for listening.

Jon at PLWHA Victoria AGM 2003

Jon at PLWHA Victoria AGM 2002

It’s Disturbing
XIV International AIDS Conference
Barcelona 2002

It seems to me to be a cruel irony that in a world where 95% of people living with HIV are unable to access treatments, the 5% of people who are able to use these treatments have serious doubts and questions about the effects that treatments are having on their lives. Don’t get me wrong: along with most of my privileged HIV positive brothers and sisters, I am desperately grateful to have access to medications that guarantee that ideally I will not die of AIDS or even suffer from AIDS related illnesses for many years. But at the same time, I share their ambivalence about the drugs that are on offer.

Partly this disquiet is fuelled by the many unpleasant and immediate side-effects of treatments: diarrhoea, headaches, nausea, dehydration, fatigue, disturbances of sleep and thought, and so on. Compared to dying, these are, without doubt, trivial, but even trivial things become unbearable if they have to be experienced relentlessly, day in and day out, forever.

The disquiet is also fuelled by our resistance to the medicalisation of our bodies and our lives inherent in the increasingly technical task of monitoring and treating HIV. We resist the territorialisation of daily life: the intrusion of medication schedules, the replacement of subjective assessments of well-being and happiness with clinical measures of immune function and viral activity.

And lastly our disquiet is driven by profound uncertainty about the long-term impact on our health and well-being of drugs that are slowly and inexorably changing us in both fundamental and superficial ways. It is this last point that I want to explore in some detail today: for while HIV and anti-retroviral therapy disturb our metabolic processes, as my colleagues on this platform have shown, the metabolic disturbances themselves cause other disturbances, ripples that spread out to upset the flow of our lives, our sense of ourselves and our social relationships.

Let me begin this exploration with a personal narrative, my own experience with the metabolic disturbances engendered by HIV treatment. For most of the time since I was diagnosed with HIV in 1995, I have been very lucky. I was not ill when I was diagnosed, and so for the first couple of years of living with HIV, I did nothing more than monitor my CD4 count and later, my viral load, with my doctors. In 1997, we decided to hit hard and hit early, and I began taking anti-retrovirals. My first experience with these life-saving drugs was not fantastic – within four weeks of starting my first combination, my liver refused to cooperate, and I became ill for the first time with an iatrogenic form of hepatitus. I was forced to stop the therapy immediately, but I recovered quickly. Towards the end of 1998, we tried again, and this therapy (based on Indinavir, D4T and DDI) was more successful: my viral load dwindled to undetectable, and although my CD4 count stayed where it was at around three to four hundred, I was able to tolerate the combination, more or less. The addition of Ritonavir the following year meant that my pill burden was decreased, and some of the difficulties of daily life – especially trying to eat and sleep adequately on a regimen that had severe dietary and medication timing constraints – were eased. My viral load remained undetectable, and my CD4 count increased to more than 500. Technically, I was in great shape.

Ironically, it was changes to my shape that now began to concern me. Slowly, the person looking back at me from the mirror was being replaced. I noticed the changes to my face first: I developed indentations and prominent veins at my temples, and my parotid glands swelled. There were also changes to the quality of my skin and hair that are difficult to characterise: it was getting somewhat difficult to recognise myself. And then I started to notice that the rest of my body was also changing. At first I liked the fact that as the fat dropped away from my legs and arms, the muscles stood out more, but then I would catch sight of myself in a store window and realise that my limbs were becoming sticks. I stopped wearing shorts in public, embarrassed by my stick figure limbs. The fat that I was losing off my limbs seemed to be migrating inwards towards the centre of my body: although I have not been exactly trim since my mid-20s, my stomach was becoming noticeably round, I was developing breasts, and a hump at the top of my back. It was very strange fatness that I was developing, particularly in my stomach. I was so thin that I couldn’t even get a pinch of flesh around my middle, and yet my belly was getting bigger and bigger. My father asked me jokingly if I was pregnant, and my brother, a bodybuilder, began to suggest exercises that would help me shape up. My nutritionist suggested that I join an exercise class for people with lipodystrophy that was run by the physiotherapists from my local hospital. My doctor suggested that I change drugs again, replacing D4T with abacavir, as D4T seemed to be one of the culprits implicated in the changes that were occurring. After a couple of weeks on abacavir, I developed a hypersensitivity reaction, and had to adjust the cocktail again, this time replacing Abacavir with AZT. My bodily changes continued noticeably, and my blood chemistry was also now detectably shifting. My blood pressure, cholesterol – both HDLs and LDLs – and triglyceride levels increased, despite my efforts to reduce fat intake. He measured and adjusted the levels of Indinavir and Ritonavir I was taking, trying to establish the minimum therapeutic dose that I could take. This relieved the constant headaches and sleeplessness that I had been experiencing. We added the diabetes medication Metformin to the mix, in the hope that this might reduce the abdominal fat deposits, and improve my triglyceride levels. We monitored my pancreas and continued to look for problems with insulin resistance and mitochondrial damage. For a couple of weeks, it seemed to me that we had achieved some balance – I felt better at least. But then there was a sharp decline in my well-being: it became extremely painful to move, and I was sharply fatigued all the time. It was the onset of lactic acidosis. This was the last straw, and I was forced to abandon treatments for a while.

There are two aspects to this narrative that bear some scrutiny. The first aspect is the impact of metabolic changes on the health and well-being of positive people. In 2001, I experienced the two worst episodes of ill health that I have had since I was diagnosed with HIV in 1995. I was hospitalised for the first time, and I had to stop my anti-retroviral treatment because of side effects. The hospitalisation was a fairly trivial event, but highly significant for me as it was the first time since I was born that I had been in a hospital as a patient. I was admitted for a surgical procedure – to repair an umbilical hernia. The hernia had developed as a result of my overeager approach to exercise to combat the development of lipodystrophy. I was concerned about how fat I was becoming in some areas like my growing pot belly and gynaecomastea, and paradoxically also worried by how skinny I was getting in other areas as the fat was dropping off my arms, legs and buttocks.

In response to my growing shame at these changes of shape, I enrolled in an exercise class for positive men, which used a combination of resistance and aerobic exercise to reduce abdominal fat deposits and increase muscle. However the solid mass of visceral fat deposits and my zeal at crunches and sit-ups were not a good pair and I developed an umbilical hernia and a prominent diastasis rectii, a strange bulge down the middle of my stomach that appeared when I did a sit-up. The hernia became so painful that I could not continue with exercise, and actually made my appearance worse. My belly was not just big and round, it was now also lopsided and somewhat pointy. It was very disheartening, and though the hernia was repaired, the diastasis is still with me, reminding me each day of the irreparable changes that have been made to my body.

The other health disaster of that year was developing lactic acidosis, which made me as ill as I have ever been, threatening my life. These developments have made me think seriously about my future strategies in relation to medication, and I now see antiretrovirals as a last resort. I do

My experience has become somewhat common for people on antiretrovirals. In the recent survey of Australian Positive People conducted by a team of my colleagues at ARCSHS led by Dr Jeffrey Grierson, lipodystophy was one of the most common health problems related to HIV that was identified by the 894 people surveyed. It was identified by 38.4% of participants, well over half of the people who had been treated with ARV. This study also tried to assess what impact lipodystrophy and lipoatrophy were having on people’s lives. More than 70% of people with lipodystophy agreed with the statement that body changes due to lipodystrophy make it obvious to others that people have HIV. Almost 70% of these people also indicated that they were not happy with the way their body looked, and about 75% of them agreed that changes in their bodies due to HIV had made them feel sexually unattractive. Compared to other HIV positive people in the survey, people with lipodystrophy were significantly more likely to agree with statements indicative of poor body image.

In a world where the threat of stigma and discrimination is the lived reality of most people living with HIV, we have been able to hide our HIV status from most people and avoid discrimination. The physical changes associated with antiretroviral treatments and associated metabolic changes have ended the possibility of anonymity for many people. In my own case, although HIV discrimination is relatively mild in Australia, I have still experienced less favourable treatment in my community because my prominent belly and skinny limbs have announced to the world that I am HIV positive. My positive friends who have significant facial wasting experience this all the time – even people in our social world who don’t understand that these physical affects are due to HIV therapy react negatively to the disfigurement that the drugs cause. I cannot imagine the impact of these changes for people living with HIV in countries where discrimination against positive people is harsh and violent. Lipoatrophy and lipodystrophy marks us instantly as HIV positive to those who recognise the signs: once treatments are widely available in the world, and these physical changes become more common, there will be no hiding our status from those who want to harm us.

The data recorded in the Futures III study also indicate that the changes to our bodies due to treatments also increase our own self-stigmatisation. The Australian writer Colin Batrouney, in an article in Positive Living called “Losing Face” has illustrated the depths to which this self-stigmatisation goes for some positive people:

On the first occasion I met him, he rummaged through his backpack and produced a photograph. It was a picture of a young Italian man, heavy set but not overweight, taken at a party with a group of friends. He pushed the photograph toward me and said, “That was me three years ago. I went out for a friend’s birthday.” The photograph was exceptional in one striking sense: the person he was three years ago bore no resemblance to the person he is today, his face ashen and savagely indented by the effects of lipoatrophy. Not only does he bear little or no physical resemblance to the man in the photograph, during the course of the past three years, he has lost his job, stopped having sex and tried to commit suicide twice. The next time, he plans to succeed.

The kind of extreme self hatred recorded here has also been noted in other social research on the impact of lipodystophy. The Canadian researchers Collins Wagner and Walmsley (2000) found in a study of 33 people, that the body images of people living with lipodystrophy was poor. Participants in their study described themselves as “Grotesque”. “The weird looking guy with the big neck”. Deformed”. “Bloated belly” “Unloved and Unloveable”. Kirsty Machon, HIV Health Policy Analyst at the Australian National Association of People Living with HIV/AIDS has commented on this study.

That all this would significantly affect the quality of people’s daily lives, she writes, might seem so self-evident as to barely raise an eyebrow. The authors went on, though, to identify a number of areas in peoples’ lives in which lipodystophy had wrought profound and often harrowing changes. Obviously, sex and sexual relations were a major issue. “Cruise suicide” was how one gay man bluntly assessed the effect of lipodystrophy on his sex life. Reported an heterosexual woman who had gained more than 20kg since beginning HIV antiviral therapy: “[My husband] now refuses to have sex with me … only since my body has changed has HIV become an issue in our love lives. Now he is afraid of catching HIV. Perhaps he was in denial before.”

It is for these reasons that I am most distressed by the lack of effort from the developers of these drugs to improve the unintended impacts that they are having. It seems to me that the desperate need for therapies to combat HIV gave drug manufacturers the licence to release drugs onto the market that had untenable side effects, and then to just leave them there. If you think about developments in antiretroviral treatments over the last few years, the only refinements to existing treatments have involved repackaging some of them with Ritonavir, developing new varieties of the same culprits, or changing the delivery mechanism so that they aren’t so difficult to take (for example, enteric coated DDI). We are not seeing any significant reengineering of drugs so that their metabolic effects are minimised, despite the fact that it is now five years since Andrew Carr and his team first identified the syndrome. There have been some movements towards developing treatments for metabolic changes, but I’m sure that I’m not the only HIV positive person who is becoming sceptical and resistant to the idea of taking treatments whose sole benefit is mitigating the side effects of other treatments. In the climate of increasing optimism at this conference about the possibility of increasing access to treatments for PLWHA in Africa and other parts of the developing world, I am concerned that this optimism is misplaced, and that what the drug companies continue to offer us is a poisoned chalice. We cannot ignore the fact that it is a chalice – none of us want to die from AIDS if we don’t have to – but I’m absolutely not convinced that dying of cardiovascular disease or pancreatitis is an alternative that I want to take. One of the most significant remaining challenges, and an increasingly important site for treatments activism, is forcing multinational drug companies to continue their research and development of existing therapies to improve their performance in the area of metabolic side-effects so that the lives that their drugs are saving can be lives that are worth living.

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.

Possessed by Pathology
How science took my body (without waiting for me to leave it)

Delivered at Possession
The Julius Stone Institute of Jurisprudence, University of Sydney
8 June 2001

Like other material possessions, our bodies or parts of them can be bequeathed. I can leave my eyes and other organs to be transplanted into another, I can donate my blood or leave my whole body to be dissected by medical students. They are part of my estate, although so far they can only be left to science or medicine. I relish the idea of expanding the list of potential beneficiaries: I imagine the inconvenience that receiving my decaying corpse would cause to a whole range of people and institutions. Could I arrange for it to be delivered at work, so that they would have to struggle home with me on the train?

Notwithstanding our Cartesian pretensions, we don’t often like to think of our bodies as property. Perhaps in rejecting slavery, we also rejected a certain kind of objectification, a certain notion of transferability. We associate our bodies and our selves too closely, and fear the idea of losing or selling ourselves, looking with distaste on those who do. My recent research is with male sex workers, who daily sell their bodies, and whose major struggle is retaining possession of some sense of themselves. The more experienced workers are strategic about this struggle for possession. They set physical and emotional boundaries, they monitor the psychological plays of their clients closely, they minimise their physical danger, they erect and maintain no-man’s land between their work and the private self. They acknowledge the fragility of self-possession, and guard against its loss.

“Selling yourself” is about allowing penetration, about the violation of bodily integrity: we mark and patrol the physical boundaries of our bodies obsessively against such penetration. We concentrate our attention on those areas where the outside becomes the inside, and treat as dirt those things that come into the outside from the inside: sputum, semen, urine, faeces, menstrual or any other blood. We give them nasty short names: snot, shit, fart. Ugly words to mark the things that are no longer us or ours.

The same fears, the same stigmas, attach to some of the things that come from the outside to be part of us. Diseases, particularly life-threatening diseases, attack our self-possession from within. We look askance at people with cancer or AIDS – how could they have allowed a foreign organism to take over their bodies in this way? My mother, while recovering from a melanoma whose removal meant the loss of most of one of her calves, talked in terms of betrayal, of a loss of trust in her own body. Her illness made her complete the Cartesian separation: she ceded her body to the cancer, and for a long time lived as a captive soul within a body she neither trusted nor asserted ownership of. My friend Andrew, recently diagnosed with bowel cancer, has a horror of the colostomy bag that he will soon have to wear. Again, for him there is a loss of ontological security; the body he has owned since birth is no longer him nor his. His bowel is to be removed, and the end stage of his digestive process – the way that we integrate the outside world into ourselves so that we can continue to operate in that world – will now be conducted by a disposable plastic bag.

My own confrontation with pathological possession is perhaps more unsettling, a battle for possession of my immune system that I have been waging with the Human Immunodeficiency Virus since about 1993. It is an insidious organism, worming its way through my epithelium and into my bloodstream. My immune system – the security system of my bodily house – sends its guard dogs, the CD4 cells, to investigate the intruder. In scenes reminiscent of the Alien films, the HIV particles attach themselves to the skin of each of my CD4 cells, and inject their DNA into the CD4 cell’s cytoplasm. The alien DNA uses the cell’s own reproductive system to produce multiple copies of itself, finally bursting through the walls of the cell and spewing thousands of copies of itself into my bloodstream, to go searching for other CD4s. HIV does little other than take possession of my immune system, destroying it in the process, and rendering my body Terra Nullius, ripe for settlement by every other pathological organism known to medical science. Otherwise harmless fungal spores colonise my brain, digestive tract and skin, bacteria and viral particles invade my entire system, even my own cells undergo routine mutagenesis, but without the maintenance of my immune system, become cancers that begin to eat my organs.

To understand the state of play, who has possession of the ball – a crystal ball, my future – medical science has devised a new form of alchemy, in which they turn blood into numbers. Every few months, a doctor takes my blood, and a laboratory processes it. The blood is never returned, it is no longer mine. Instead the laboratory returns numbers to the doctor, who keeps the numbers in a file which bears my name, but does not belong to me. The blood and the numbers don’t even bear my name: instead, they have taken my name and birth date and constructed a code from them. WI from my surname, JO from my Christian name – WIJO 11021961 is the designation they have for me, my blood, my records. WIJO gets two counts each time: a viral load, which measures the number of viral particles in each millilitre of the blood; and a CD4 count, which measures the number of CD4 immune cells left in every microlitre of the blood. The numbers tell the doctor how successful the virus is in invading the body – they indicate how long the body will survive. He uses them to make decisions about treatment.

Yesterday I visited my doctor to get the latest set of numbers. I have been untreated for six months, since lactic acid in my blood reached dangerous levels. In HIV medicine, when they say dangerous, they mean potentially lethal. I expected the worst from this doctor’s appointment, and got it. After having an undetectable viral load for more than three years, the viral load yesterday was over 400,000 – the highest it has ever been to my knowledge.

I resist this information, and try to imagine each of these viral particles. I think about the fact that if there are more than 400,000 of them in every millilitre of blood, and I have more than seven litres of blood in my body, then that means that there are more than 2,800,000,000 of them inside me. Hell, there could be 3 billion of them! How much do they weigh, I idly wonder? Could this explain my recent weight gain? I try to do the calculation: I have gained five kilos since December, that’s 5,000 grams or 5,000,000 milligrams, and there are about 2,800,000,000 new viral particles. That means each of them weighs .002 of a milligram. I can’t imagine one thousandth of a milligram, so I shift to a new tack. Where did all those protein chains come from? How much of my food intake is being wasted on creating these viral particles? I make a mental note to reduce my daily intake of kilojoules and give them less to work with. I look at myself closely in a mirror, watching my skin anxiously. Surely that many viral particles would make my skin bulge in some way: I should be able to see it, shouldn't I? There are no visible bulges so far, but other signs of the virus at work. The paisley pattern of leukoplakia on my tongue, the spots of psoriasis...

Yesterday, the other number, the CD4 count, was up as well – this represents the team playing on my side. It was also the highest it has ever been, about 900 CD4s in each microlitre. It seems to me that these CD4s, a mere 6.3 billion of them, will have their work cut out dealing with all that new virus. Perhaps I shouldn’t stop eating after all: they’ll need some energy to do their work. With a sigh, I reach for another chocolate biscuit.

Of course, chocolate is not the only weapon in my arsenal. Fortunately, drug companies have leapt into the battle for my body, inventing a range of drugs as insidious as HIV itself. Nucleoside analogue reverse transcriptase inhibitors, non-nucleoside reverse transcriptase inhibitors, protease inhibitors, fusion inhibitors: designer molecules that infiltrate my CD4 cells, physically blocking HIV from using the genetic mechanisms of my cells to reproduce itself. Geneticists, immunologists, haematologists and the companies they work for have leveraged my defence against this hostile takeover. Of course, this has required financing, and some accommodation on my part.

In terms of accommodation, in my most recent round of treatment, which lasted for eighteen months, I had to take six Indinavir sulphate capsules a day (two, three times a day), four Didanosine (DDI) tablets once a day, and two Stavudine (D4T) capsules a day. The Indinavir had to be taken at precise eight-hourly intervals, with a two-hour fast before, and an hour without food afterwards. The DDI required similar fasting periods, but could not be taken within an hour of Indinavir. The D4T had to be taken at 12 hourly intervals, although without food restrictions. My days were completely subsumed by pill schedules, and trying to squeeze three meals into the five waking hours a day when I was allowed to eat. Fortunately I was nauseated more of the time, and so didn’t mind missing meals. I lost twenty kilograms in weight – one fifth of my body – and never got eight hours sleep. But there was no detectable virus in the blood they took each month.

There were, however, other problems – physical and ontological. The drugs are toxic and unpredictable. D4T, not content with simply preventing HIV transcription, took it on itself to alter my fat metabolism, and stripped subcutaneous fat completely from my arms and legs. Indinavir joined in, depositing hard lumps of fat in my viscera and on my neck. Skinny arms, skinny legs, a huge round belly, breasts and a buffalo hump. Not only was HIV trying to take possession of my immune system, but the antivirals had decided to take my body and self-image out for a spin. The hair on my head grew thin and brittle and somehow faded, my body hair fell out, my skin grew dry and flaky, my bones porous and brittle. My feet ached when I walked as the fat pads on the soles of my feet disappeared, and I couldn’t sit for long as my pelvis dug sharply into my uncushioned glutes. My nutritionist told me to eat as though I were seventy years old and pregnant – and indeed, a seventy year old pregnant man stared back at me from the mirror. Fortunately, as I lost minor fat deposits on my face, and my parotid glands swelled up, I became less certain that the pregnant old man staring back was me.

Like all bodily modification, this iatrogenic transformation has cost a packet. Developing HIV drugs is big business (particularly now that a Californian biotech company has managed to copyright the human genome. It is surely only a matter of time until they start licensing each of us to use their patented genome for normal growth and development – like Microsoft © Windows, it comes preloaded with every system. In the meantime, they are only charging research scientists through the nose for the use of it.) Although there are 50 million people with HIV in the world, very few of them can actually afford the drugs to fight it – those of us who can, are repaying the development costs with interest. In Australia, this cost is mostly picked up by the Pharmaceutical Benefits Scheme. My treatment should have cost me $14,000 a year, but living in an advanced and wealthy democracy means that most of these costs were met.

In exchange for the drugs that have kept me alive, albeit in slightly shopworn condition, I have become the property of the Public Health System. My life – my body – is now mortgaged to the federal government. There is a national strategy that says how my health, educational and cultural needs as a positive person will be dealt with. These requirements are couched in overtly post-modern terms: I will be assisted with my self-regulation to be a good and healthy citizen to the best of my and the government’s capacity. My favourite part of the policy is the challenge at 3.2.3 to:

Maintain and reinforce the safe sex culture among gay and other homosexually active men in the face of a changing epidemic and changing perceptions of the risk of HIV transmission, in the broader context of gay and other homosexually active men’s health.

It is clear here what the mortgage on my health comprises: a requirement of compliance with “safe-sex culture”, an agreement to scrutiny and surveillance, a kind of comportment from all gay men. I wonder about “maintenance” and “reinforcement” of sexual culture, and the practices and compromises that might entail. I worry that what passes for my health these days has been purchased at the expenses of my brothers’ freedom. Those of you who are not gay, perhaps you would like to think about the impact of hearing your sexual practice discussed on the ABC National News as I did this past Wednesday, of having the likes of Chris Puplick call you to public task about your morals on ABC’s Lateline program the same day. The Facts and Figures Report, whose release last Wednesday by the National Centre for HIV Social Research prompted this public discussion, holds up to sometimes hostile and always impertinent scrutiny the sexual lives of 1800 or so gay Australian men. I wonder what on earth possessed them to return the survey. Reading the report, I am reminded of a poem by Essex Hemphill, a black American poet who died of AIDS a few years ago. The poem is called The Occupied Territories, and the final stanza reads:

You are not to touch other flesh without a police permit.
You have no privacy – the State wants to seize your bed and sleep with you.
The State wants to control your sexuality, your birth rate, your passion.
The message is clear: your penis, your vagina, your testicles, your womb, your anus, your orgasm, these belong to the State.
You are not to touch yourself or be familiar with ecstasy.
The erogenous zones are not demilitarized.

If, as Janis tells us, freedom is just another word for nothing left to lose, then there is an opposition, a tension even, between emancipation and possession. My emancipation – from multiple possessions – is problematic. To be free of the virus, I take the drugs that tie me in servitude to medical intervention that in turn mortgages me to Public Health scrutiny. While I still have CD4 cells, while I still have a functioning immune system, however compromised, I will never be free. I will always have something left to lose, something that can be traded with industry and government.

Postscript:
My options then are threefold: to succumb to viral possession, and lose my subservience to the pharmaceutical industry and the government through death; to accept and learn to live with my compromised state, a tenant in my own body; or to take on the recognition of my body as a militarised zone, where a war for control is taking place, and organise a resistance movement. The control is the kind of self-regulation that we post-Foucauldians are familiar with, and the territorialisation of my body definitely Deleuzian. The challenge is to find a resistance that is not ultimately self-destructive: I don’t want the federal government to renege on their self-imposed responsibility to provide me with affordable access to reasonably effective medication. This is a war on two fronts. On the one hand, I need to resist the reductionism of the medical approach to HIV – an issue that I have taken up elsewhere (the NAPWA conference paper on numbers). On the other, I need to challenge the notion that there is a right to subject me (through my communities or otherwise) to the kind of scrutiny represented by Facts and Figures, and touch wood, everything will be OK. The problem with the scrutiny is that it is (being) engaged in a process of meaning construction: the meaning of an infected body; the meaning of positive sexuality; the meaning of gay sexuality; the meaning of citizenship. My body, my sexuality, my citizenship are at stake in this process, which is currently being conducted by people who are not (necessarily or openly) positive and not (necessarily or openly) gay. If I can remetaphorise this process as a card game, I only have two cards – I have a terminal and infectious disease for which there is no cure, and a tenuous grip on some slightly higher moral ground. Both are Jokers. The players on the other side hold any number of cards which can trump either of the ones I hold: drugs, hospitals, prisons – life and liberty. Given that the whole idea is not to fold, I either need better cards, or I need to bluff really well. I think I’m going to start working on my poker face.