LONG-TERM SURVIVOR

By Stephen Wrench

Living with HIV from death to life.

“Yes, but you didn’t die.”

It’s a familiar response when I try to explain what it is to be a longterm survivor of HIV and AIDS.

I’ve yet to find an effective reply to this: to explain, particularly to people who weren’t there and can’t know, what it was like back then, a time that’s with me, mentally and physically, every day.

I was an indestructible young man of 32 when I was diagnosed with HIV, riding high in my career as a journalist, living the life of a gay man out and about, taking every care – or so I thought – to protect myself.

It turned out not to be enough and I have only myself to blame for that.

“Even if it’s five years,” my best friend said on the line from New York that night in 1993 when I was diagnosed, “even five years wouldn’t be enough.”

“I’ll live until I’m 40,” I’d say. No one would quite meet my eye. Because everyone knew that very few survived the eight years that that would require.

My friend in New York had friends dying around him. In London, there was always news of someone else diagnosed, someone else dying.

I almost died of PCP, a bacterial pneumonia that killed so many at the start of the HIV pandemic. I emerged from hospital frail and a little broken, no longer indestructible. But thankfully, a year later, what seemed, and still does seem like, the miracle of the right antiretrovirals saved my life.

So I’m still here, way beyond my target age of 40. Now at 61 I’m a long-term survivor, defined as being diagnosed with HIV before 1996, on what I call “the other side”, a time when there were no effective drugs to treat us, when we were all certain to die unpleasantly and soon.

But there are costs to this survival. There are the side effects of both medication and HIV itself, usually with long names: peripheral neuropathy, causing constant pins and needles in hands and feet; lipodystrophy, which means I’m a really weird shape; and pancreatic insufficiency, which requires a handful of pills to digest food.

I feel guilty having written that. Why am I alive and not so many others? Talented, beautiful men who died horrible deaths? What about the fellow patient, always cheery whatever was happening – chest shunt, brain shunt, the works – who one week wasn’t in his usual seat at the clinic? And then there’s … and … and … I sometimes think I could fill Brighton seafront with the dead.

My friendships with other long-term survivors take all of this experience for granted. There is room for conversation about lovers lost and side effects gained, for tears and laughter.

So yes, I didn’t die. But in so many other ways I did.