Thursday, 22 July 2010

MY WAR ON AIDS A Personal Story by Andrew Hitchen

My friend knew immediately. It was written all over my face: the dilated pupils, the colour draining from my cheeks, the uncontrollable pulse that throbbed in my left temple.

I was in shock.

I had just staggered home from Greenwich District Hospital with the results of my HIV test. The shock was incredible, almost hallucinogenic. It was as if I was slipping away from my body to some unpleasant astral plane.

My friend didn't even ask. She knew where I'd been and had been waiting for me to return. My body language was speaking volumes.

"Oh god," my friend said, putting a hand up to cover her mouth. "Oh god. Oh god."

I sat on the sofa and trembled. Neither of us knew what to say.

After a few more moments had lapsed, my friend made a fresh pot of tea and began to rummage through her CD collection. "Music," she muttered. "We need to play some music."

She knew I was a Bowie fan. Along with Morrissey, he had been one of my idols and his face, in multiple guises (Ziggy Stardust, Aladdin Sane, the Thin White Duke), had adorned my bedroom wall for years.

Still not knowing what to say, my friend quickly slid a disc into her CD player. As a slow but persistent drumbeat began to boom through the speakers, another look of horror was suddenly etched across her face. "Oh my god," she said, looking at me sideways. "What have I done? I'm sorry. I wasn't thinking. Do you want me to change the CD?"

I smiled wryly. "No," I replied. "Leave it. It's perfect. Honest, it's perfect."

And then the chords came crashing in and Bowie began to sing:

'Pushing through the market square, so many mothers sighing.
News had just come over - we had five years left to cry in.'

I had to smile. I think I even laughed. Even today, I cannot think of a more ironic song to play to someone who has just been diagnosed with HIV than 'Five Years' by David Bowie. And as Bowie began to screech and wail the words: 'We've got five years stuck on our eyes! We've got five years. What a surprise!' my poor friend was visibly squirming on her chair, horrified by her choice of albums and probably wishing she'd played 'Young Americans' instead.

"Five years," people used to naively say. "If you catch HIV you've probably got about five years left to live."

That was seventeen years ago. It was September 3rd 1993 and I was only 28 years old at the time. I had been living in London for about eighteen months, having moved from Madrid, and before that Manchester. I came out when I was nineteen years old in small-town Lancaster, and I had only ever had monogamous relationships. Yes, there had been one-night stands in between, but my sex life had hardly been shockingly excessive. And I was aware of HIV and AIDS too. No one who lived through the Eighties could ever ignore it. It was on the news every other day, and was often being whipped into homophobic bile in the tabloid newspapers. And who could ever forget Sir James Anderton, Chief Constable of the Greater Manchester Police, consulting his bible and referring to people with AIDS as "swirling in a cesspit of their own making."

'A cop knelt and kissed the feet of a priest,' Bowie sang. 'And a queer threw up at the sight of that.'

These were the grim days of Margaret Thatcher, Section 28 and violent Poll Tax riots. They were dark and dismal days, my friends, only brightened by the music of The Smiths.

But it was by being out and about on the London gay scene in the early 1990's that I really began to notice the devastating impact HIV was having on the terrified gay community. It was in London that I first met people who told me they'd been infected by the virus. They were putting on brave faces, but the fear in their eyes shone through. Some of these people have survived and are thankfully still around today; some of them died a long time ago. But it was hearing their different stories that finally prompted me to go for an HIV test.

In the 1980's and 1990's treatment for HIV and AIDS was virtually non-existent. Yes, there were drugs such as AZT and Septrin available, which some people shoveled down their throats like candy. But these drugs were highly toxic and hepatic, and caused many health problems - even death. (One doctor confessed to me: "It isn't just the virus that's killing people, it's the toxicity of the medication.") Deaths were commonplace, and emotionally it was a turbulent time for everyone involved. Everybody seemed to know somebody who had been infected. Everybody knew somebody who had died. Everyone was emotionally charged and always on edge. HIV and AIDS was so terrifying back then, and had so much stigma attached to it, that many people who'd been infected couldn't cope and often resorted to taking their own lives. They were young people too. Men in the twenties. Men who had struggled bravely to come out and now faced what looked like a grisly death sentence. I went to funerals and saw mothers grieving for their sons.

A parent should never see one of their children die. I know it happens, but it shouldn't. If there is a god out there, I'm not sure I like him or her very much.

During this time, I was always very open about my status to potential lovers or partners. Unfortunately, many of them just walked away, nervously apologetic but understandably terrified of being infected.

I was alone. I had battles to fight, but I was on my own.

As a consequence, I remember feeling angry for most of the 1990's. Very angry. And like a pan of boiling milk on a stove, sometimes my anger was hot and uncontrollable, and frequently misdirected. I succumbed to alcohol abuse, took drugs and went clubbing until the early hours of the morning, sometimes making friends, sometimes making enemies. But most of all I was angry with myself, angry for slipping up one night and becoming infected with a potentially life-threatening virus. How could I have done this to my friends and family? How could I have have been so careless and thoughtless and stupid? How could I have done this to myself? Indeed, the self-loathing I felt was so overwhelming that by 1997 I was diagnosed by my doctor and a psychiatrist as clinically depressed.

And then came the panic attacks. One after the other, they came, day after day, week after week - huge, unstoppable surges of adrenalin that left me gasping for breath and frequently lying face downwards on my sitting room floor for hours on end.

Thankfully, by the end of the 1990's, treatment for HIV was improving and becoming a lot more effective. People were living longer and, with guidance from good doctors and health workers, becoming more capable of managing their condition. The treatment was by no means a cure, but the grisly shadow of death was becoming more opaque. People who had been seriously ill with conditions such as PCP and KS began to improve and get better. Hospices began to close down, viral loads were plummeting, and CD4 counts were rising. The battle was being won. A cheery, but cautious optimism began to pervade the gay scene; and the gay scene, after such a long, dark period of uncertainty and unrest, embraced it with welcoming arms.

But it wasn't all good news. A chapter in the story of HIV and AIDS was coming to an end, but another was about to begin. Many people were responding well to the antiretrovirals; others weren't so lucky. The medication for HIV is highly toxic and when I first took the drug Trizivir it is no exaggeration to say that it almost killed me. For several weeks I felt nauseous and dizzy. I had headaches, diarrhoea and every twenty minutes I was dry retching over the toilet bowl. Every night, as I tried in vain to sleep, beads of hot sweat would trickle down my body, soaking my bedsheets. I'd never felt more ill in my entire life! Finally, one afternoon, I received a telephone call from my consultant at Greenwich Hospital. A recent liver function test had revealed that my ALT levels had shot up to an astronomical 700. The drug was killing me. Slowly, but surely, the drug was destroying my liver; and I had to stop taking the medication immediately.

I now take a combination of Kaletra and tenofovir. It's been kinder to my liver, but although my viral load has dropped to an undetectable level, even after ten years of taking this medication my CD4 count rarely rises above 300. In other words, it looks as if my immune system has been permanently damaged by the virus. There are also many side effects of this medication: chronic diarrhoea, muscle pain, high cholesterol levels, extreme fatigue, nausea, to name but a very few. These are manageable, of course, with a good diet and a cupboard full of medicines. But it isn't easy living with these side effects on a day-to-day basis. I also take the drug venlaflaxine to help me cope with my bouts of serious depression and my debilitating anxiety disorder. These attacks still occur every now and then, despite the medication.

Friends of mine, who are taking other anti-HIV medications, are still suffering from the side effects many years later: facial wasting, swollen bellies, cardiovascular problems and neuropahy. And heaven only knows what the long-term side effects of this aggressive medication are going to be.

There has also been another - and perhaps more alarming - side effect since the arrival of the antiretrovirals. As mortality rates have dropped, so too has the fear factor for those uninfected by the virus. A strange complacency and apathy towards HIV and safe sex seems to have wormed its wicked way onto the current gay scene. Over the last few years the number of gay men catching the virus has more than doubled. Recently the THT reported that there had been more new infections than at any other point in the history of the epidemic. Not only do I find this news very alarming, but I also find it deeply disturbing and very shocking. What the hell is going on?

I have deliberately distanced myself from the commercial gay scene over the last few years, so I'm probably not in a position to comment. I gave up drink and recreational drugs a long time ago, and now pursue a quiet, almost hermit-like, lifestyle. I've written and I am currently illustrating a fantasy children's novel, which takes up most of my time; and probably keeps me out of mischief. My two cats, Ziggy and Morrissey, keep me company.

But in the light of recent statistics, the story of HIV and AIDS is far from over; and HIV is beginning to rear its ugly head once more. Although many battles have been won and many lives have been saved, the War on AIDS is far from over. And you can bet your lives there will be many more casualties to come.

Andrew Hitchen

Many thanks to journalist and novelist, Paul Burston, for inspiring me to write this personal account.