Woman in the Making: Panti's Memoir (16 page)

But I didn’t. I didn’t make a scene. I’m too painfully middle class to make a scene. Instead I turned and walked the short distance to the flat, angry at the inappropriately lovely weather and praying I wouldn’t meet anyone I knew.
I must look like a mess. What does my face look like? Am I crying? Do I look sick?
I wasn’t sure I’d be able to fake a casual interaction.
What if someone stops me to say, ‘Hi,’ and I scream into their face, ‘I HAVE FUCKING AIDS!’?

Back at the flat I told Niall and Frank. They were under no illusions either. They’d lost friends. Plenty of them. We didn’t say much. We made jokes and I laughed instead of screaming. That night in bed I didn’t cry because the
hypnotic the doctor had given me made everything impossible, except uncomfortable, disturbing dreams.

Soon I was spending a lot of time at the HIV clinic at St James’s Hospital. It was always busy, full of sick, wary people trying to be invisible. Gays, drug addicts, haemophiliacs and prisoners handcuffed to prison officers accounted for almost everybody. The addicts brought their chaotic lives with them into the clinic. Heroin had released them from normal social protocols so they shouted conversations, argued and showed you their sores, and staff spent a lot of time managing them, looking for them, reminding them of appointments, gently chastising them. The haemophiliacs were mostly frail. They’d been infected early in the epidemic and these were the survivors. The prisoners sat between matter-of-fact officers, and sometimes the prisoner’s mother, taking the opportunity of an unscheduled visit, would turn up with a plastic bag full of chocolate and small comforts and sit with her pale son, telling him all the news and fussing over him. And the gays, greeting each other or awkwardly avoiding eye contact, depending on their history.

And there were sick people. Dying people. Gaunt, tired-looking people. People being wheeled through to the ward. People who were there one week and not the next.

The staff were busy, hard-working, occasionally harassed, and determinedly cheerful in the face of it all, with occasional flashes of gallows humour.

On my first visit the doctor said she wanted to put me on medication. Exciting new drugs had recently been
approved and a new treatment strategy known as ‘hit early, hit hard’ was being advocated in the US. After some discussion, I agreed to start taking drugs. Lots of them. Thirty pills a day, to be taken at various times, some with food, some without, some in neat capsules, some in huge, powdery, gag-inducing tablets, and all with side effects. This was an exciting time, she told me. Early results were promising. There was a lot to hope for. Then I was sent down the corridor to the social worker’s office where she told me all the ways the state could help me die. I could get a blanket allowance, and a special dietary-needs allowance, and a heat allowance. And the dole, of course! Because I wouldn’t be able to work much longer – I’d be much too busy being sick and dying. She touched my hand across the desk.

I felt like I’d been wrongly accused in a police lineup. I didn’t recognise this person they were talking about. This sick person rattling with medication and Granny’s pillbox. This person who was going to stop working, wrap himself in a blanket allowance and lie back on the conveyor belt that would trundle him inexorably towards a funeral. I couldn’t believe that person was me. I felt fine!
I’m fine! There’s been some kind of mistake!

I went home with a carrier bag full of drugs and a long list of possible side effects.

Today people are afraid of HIV. In 1996, they were terrified. New treatments were beginning to make real progress but the average person on the street wasn’t
exactly
au fait
with cutting-edge HIV research so, to them, it was still terrifying, the stuff of lurid headlines and tragic Oscar-winning Tom Hanks performances. Despite that, I decided to be open about it, or at least not to hide it. Thankfully, I hadn’t spent long in the closet, but it had been long enough for me to know that I didn’t want to go back to hiding something, go back to being ashamed. In fact, my hand was forced by a practical acceptance that I have a big mouth. How could I possibly keep this from everyone when it was all I could think about?

I dreaded telling people who cared about me. I had decided immediately that I wouldn’t tell my parents yet. Not till I had adjusted to it. Not till I understood exactly what was happening to me, how the treatment was progressing, what the prognosis was. Not till I understood everything about it and could answer all the questions. But I would have to tell friends, the people I hung out with every day, and I dreaded it. Not because it would upset them (it would) but because there would be
emotions
. And I don’t like having to deal with emotions. Public displays of emotion, mine or anyone else’s, make me uncomfortable. I don’t know what to do, how to stop them. So I was grateful when most of my friends knew me well enough to react by making bad jokes in poor taste.

I was waiting tables in the Elephant & Castle restaurant in Temple Bar and I didn’t want to stop – I needed the money – but I knew I might have to work a little less, or
request awkward shifts to accommodate clinic visits or medication regimes, so I decided to tell the then owners. It would have been easy for them at that time to express sympathy but let me go – a lot of people would have been very uncomfortable with an HIV-positive waiter – but they didn’t. They told me to take whatever time I needed and come back when I wanted. I’ve never forgotten that kindness.

For the next few years my life was lived around taking medications. There was a strict schedule to follow, pillboxes to be filled, tablets to be counted out, meals to be eaten or not eaten at the right times, with the right drugs. Strict adherence to the regimen was vital because HIV is a cunning little asshole. It replicates dizzyingly fast and mutates around drugs. A single drug will only work for a short time because HIV will find a way to shape-shift around it. The new treatments depended on attacking it with three of a new type of drug simultaneously because it can’t mutate its way round three at once, but for it to work, the three drugs in your system needed to be kept at sufficiently high levels all the time, twenty-four hours a day. And not only was taking all these drugs, at the right times in the right ways every day, a logistical and practical nightmare, each drug also came with its own collection of side effects. Side effects that constantly reminded me that these were powerful drugs, powerful
poisons
, that I was shoving into my mouth at the proper intervals. So there was fatigue and joint pain and nausea
and diarrhoea and rashes and days when you opened the fridge and saw the rows of pill bottles and you slid to the floor and cried while no one else was home.

It was exhausting because you could never take a break from it. HIV didn’t take breaks. I couldn’t even forget about it for longer than an hour or two because my watch would start beeping, reminding me to take whatever combination of pills and capsules and enormous retch-inducing tablets my schedule told me needed to be taken at exactly that moment. Taking drugs became my full-time job and I was working split shifts and weekends and bank holidays and evenings and even fucking Christmas. Happy Christmas, here’s your turkey and poison.

For a long time after my diagnosis, I didn’t feel attractive or sexy. I was always tired, always complaining about this side effect or that. And I felt tainted, marked as unfuckable. Scarlet-lettered. But in time, as my body adjusted to the constant bombardment, and as the clinic tried me on different combinations of drugs till we found one that was less brutal, life started to reassert itself. Hormones and lustiness will find a way when you’re in your twenties, and one night I went home with someone. I knew him a little – we had mutual friends, he worked in a late-night café I would go to sometimes, and we ended up in bed in his small flat in town. We had safe sex, of course, but afterwards I lay there, my head about to explode, trying to work out what to do or not do.
Do I need to tell him? Should I have told him first? What
if he freaks out? Will it be worse if I say nothing and he finds out afterwards? What if he hates me for it?

I sat up in the bed and told him and cried embarrassing tears. He didn’t freak out, this almost-stranger whose small room I had just filled with awkwardness. He was calm and nice to me as I sat naked on the edge of his bed, my head in my hands, embarrassed and sorry for myself.

It was a while before I tried that again.

How do you tell your parents you have HIV? How do you tell them you have this almost mythically terrifying virus? This AIDS. This ‘condition’, this ‘syndrome’. (Oh, for fuck sake, let me just call it a
disease
! No one dies of a
condition
. People don’t waste away from a
syndrome
. A
syndrome
doesn’t make you vomit up your insides and your medication with them. A
condition
doesn’t make people hesitate to drink from your water bottle. People don’t whisper behind your back that you have a
syndrome
. You can’t fight a euphemism, you can’t scream at a wishy-washy
condition
, you can’t rage at a medically accurate
syndrome
. I want a vocabulary I can punch in the stomach. I don’t care what your
Lancet
says, what your dictionary says: I have a fucking disease.)

So, how do you tell your parents you have this disease that will turn the natural order of things on its head and see them bury you?

I’d rather tell them a hundred times over I was gay than tell them this. Telling my parents I was gay was difficult and worrying, but in a way, it was out of my hands. It had
nothing to do with me. I didn’t choose to be gay; I didn’t decide to be gay. I didn’t
want
to be gay – I simply
was
gay. When I told them I was gay I upended my parents’ assumptions about my future. I forced them to adjust to a new, unfamiliar trajectory. I forced them to confront some of the things they’d always believed or been taught to believe, to re-evaluate previously easy moral judgements. And I had given them cause to worry: would I be happy, would I be lonely, would I be treated badly? But none of this was my fault. It simply
was
, and not telling them wasn’t an option. Not telling them would have meant constantly lying to them by omission and would have meant keeping them at arm’s length. Keeping them excluded from my life, distant. Not telling them would have meant turning my parents into acquaintances.

I felt no guilt for telling my parents I was gay, but this was different. I felt guilty that I was bringing this pain to them. Of course I hadn’t chosen to be HIV positive either, but it wasn’t an intrinsic, inevitable part of me. I might not have known when or how or whom, but somewhere along the way, young and foolish and sure of my invincibility and probably addled with alcohol or lust or love, I’d taken a risk. I’d made a decision (or, more likely, just not made a decision at all) that had landed me here, a guy full of drugs and ‘a big disease with a little name’.

And it was hard not to absorb some of the stigma, the guilt, the shaming and the blaming around HIV. There was a
tone
around being HIV positive. A shifting
of the eyes, a mumbled accusation, a hint of distaste. We modern lepers were at best stupid, at worst sinful. We weren’t innocent victims, unfairly afflicted with cancer, cruelly singled out by motor neurone disease, randomly struck with vCJD. We had done something bad and this was our harsh reward. And you didn’t have to look far to find people who said our reward wasn’t just harsh but also justly deserved. People who said we had brought it on ourselves and were deserving of little or no sympathy. Unlike the innocent haemophiliacs we, the junkies and the gays, deserved AIDS. For the religiously minded, HIV was a divine punishment sent from God for our homosexual ways. For the less religious (but equally censorious) it was Nature’s admonishment. Our comeuppance for ‘unnatural’ acts. The virus as moral agent. Conveniently, only HIV was a moral virus. Measles and yellow fever and all the others were just unfortunate because nice people got those too. But viruses aren’t moral agents – if a virus found a way to survive by infecting people making their First Holy Communion, it would.

‘What did you do?’ and ‘How could you have been so stupid?’ were the accusatory questions hanging (usually) unspoken over people like me, and Ireland, of course, has a particularly rich history of blaming people for their sexual behaviour. A rich history of blame that ended up with forced adoptions, back-street abortions, ruined lives, and a terrified young woman dying a cold,
lonely death in a grotto in an ordinary midlands town. A terrible history of shame that gave us mother-and-baby homes, Magdalene laundries and unmarked cemeteries. An architecture of shame.

Prudish and censorious, we hounded young women into institutions, with wagging fingers, pinched mouths and exasperated cries of ‘Stupid girl!’ For generations we asked incredulously, ‘How could they have been so stupid when they knew full well the terrible consequences of winding up pregnant and unmarried?’ while wilfully ignoring the fact that all they had done was what their very DNA urges them to do. They had done only what millennia upon millennia of evolution demands they do. They had done only what every living organism on the planet is born to do. What their hormones, their synapses, their serotonin, their blood and bones and cells are crying out for them to do. What their very biology insists they do.

The question isn’t why so many young women had sex despite the awful consequences but why so many others didn’t. We breathe because we have to, we eat because we have to, we drink because we have to, and we have sex because we have to. Our biology conspires to make us have sex, and it does so with bubbling hormones, powerful urges and a deep, human need for closeness and intimacy that at times overpowers us. Addles us. We stay with partners everyone else can see are bad for us, we make fools of ourselves over lovers that don’t deserve us, we are swept away by passion and lose ourselves in
skin and heat and sweat, and sometimes we can’t resist our own biology and end up marked with other people’s holier-than-thou shame.