Clinging to a raft in the regatta of life
by Bruce Ward
Lazarus Syndrome” is one of the terms coined by psychologists and sociologists to describe the condition of many long-term HIV survivors—those of us who were given a death sentence in the 1980s and ’90s, only to have it unexpectedly and suddenly revoked at the eleventh hour. We somehow made it to the other side—hanging on day by day, pill by pill—until, seemingly out of nowhere, the effective treatment known as HAART (highly active anti-retroviral therapy) appeared in 1996.
I acquired the virus in 1984, a year before it was isolated and named. In 1986, an antibody test for the virus (then known as HTLV-III) was made readily available, and my result was confirmed.
I have now been living with what we now know as HIV for thirty-two years. I have known both the Before and the After of the drug treatment cocktail that dramatically changed the course of the epidemic, twenty years ago.
And I share a common bond with many of my fellow long-term survivors.
In 1996, we were the ones who had made it to the other side—bloodied, shell shocked, and uncertain of the future.
Well-meaning friends and family members, undoubtedly themselves relieved that the “epidemic was now over,” urged us to return to our so-called normal lives. But much of the damage had been done: careers ended, relationships thwarted, finances ruined, friends and lovers lost, psyches scarred.
In 1996, I witnessed men on their deathbeds become their former bodybuilder selves, seemingly overnight. But no one really knew then what was to come: the new wave of afflictions, the secondary phase for those of us whose bodies and immune systems had been racked by years of viral infestation and toxic chemicals. Lymphomas, heart disease, high cholesterol, bone loss, diabetes, and neuropathy would now add to the list of ailments that already included depression, fatigue, body fat abnormalities, sinus infections, and PTSD.
In less than a decade, I would experience nearly all of these conditions, like a medical checklist created for those lucky enough to hang on.
For many years, I have had variations of this recurring dream: I am adrift at sea, clinging on to a flimsy life raft, while sailing vessels of all kinds pass me by: cruise ships filled with laughing, flirtatious young men; yachts with blue-blazered captains and champagne-swilling heiresses; sailboats with a joyful skipper, tilting his headsail into the wind while his blissfully straw-hatted fiancée dips her delicate toes into the rushing water; canoes with happy men and women paddling their first blush of romance; even kayakers who, though alone, are healthy and robust, their triceps ablaze with the knowledge that a lover and a good beer awaits them when they return to shore.
Some of them wave as they pass by. Others barely notice me.
“Take me with you!” I cry.
But to no avail. None of them can hear me; not on the cruise ship, the yacht, the sailboat, the canoe, or the kayak.
“Howdy,” some of them cry, seeing me out there in the deep.
Many are friendly. They mean no disrespect. They just somehow do not see that I am clinging to a raft, alone, and that I am scared. Perhaps it is my demeanor; nothing about me indicates that I am in any kind of pain or that I want to be saved.
“Take me with you!” I cry. But they hear, “Isn’t it a wonderful day?”
They do not understand. They think I am out for a swim.
Every so often, another life raft will come floating by. It is usually occupied by a person from those pre-cocktail years—someone who remembers the horror, who was there when it all started, and who remained as it devastated our lives. We are two souls lost in the night, finding each other floating in the middle of the ocean. And we smile because we have found another person who understands. Perhaps there will be no rescue, but at least there is some comfort.
And, at least for that moment, neither of us feels quite so alone.
And then I wake up.
Roy Hoffman, famous in West Village literary circles in the late twentieth century, lived his entire life with cerebral palsy. He rarely complained about his illness. In his memoir, Tom’s World, Hoffman wrote:
“My condition is…certainly no physical barrier to an entirely adequate imitation of everyday life.”
An entirely adequate imitation of everyday life. This seems like the perfect phrase to describe what it often feels like to be living with HIV as a long-term survivor. This is what it feels like, going about one’s life in a constant state of anxiety, sadness, anger, anticipation, and hope, fighting isolation and antipathy, hanging on, while the rest of the world keeps strangely spinning.
Bruce Ward has been writing about the AIDS epidemic since its inception, and his recently completed memoir chronicles the early years. His play, Lazarus Syndrome, and solo play, Decade: Life in the ’80s, have been produced throughout the U.S. Bruce was the first Director of the CDC National AIDS Hotline from 1986–1988. He was honored by POZ magazine as one of 2015’s POZ 100.