SUDBURY, ONTARIO – Thirty-one years ago, he stood at the threshold of a confusing struggle that would shape the lives of millions of people of all ethnicities, nationalities and faiths. To date 39 million globally have succumbed.
An unpredictable and bloodthirsty shape-shifter, the poison by which this conflict has been waged is dazzling in its resourcefulness. A pure predator, it is indiscriminate and pointed. It attacks without provocation and remains relentless in its consumptive pursuit. The Hurricane Katrina of disease, it is symbolized by a simple red ribbon, shaded to reflect the blood that fuels its thirst.
It was 1983 and he was an artist working and living amid the dreamscapes of New York City. But watching his friend Kenny, 27, waste away – he is one of those 39 million – moved him to act.
“They didn’t have a name for it – it was called gay cancer,” he tells me. “I went to visit Kenny and his food was piled outside his room. Nobody would go in the room. Nobody was taking care of him. The worst thing was that he could hear the orderlies outside his door taking bets on ‘how long the faggot in Room 12 was going to live.’ That really outraged me.”
He could be anyone. But his name is Gregory Maskwa.
The 61-year-old has lost countless friends and says dying from HIV-related illnesses during those nascent days was dreadful.
“It was a horror beyond belief; it was certain death in a matter of days or weeks once you had your diagnosis,” he explains of the 1980s-era infection. “There were no medicines to stop opportunistic infections, which were really strong. The infections were disfiguring – they were horrible and very, very painful.”
Maskwa and several other NYC-based activists were catapulted into action. With few other services available, they founded the AIDS Resource Center and subsequently, the Bailey House, which coordinated housing for homeless HIV-positive men and has since incorporated several other programs into its mandate. Founded in 1983, it remains one of America’s most comprehensive AIDS-related charities. Nearly two months after Kenny’s death, Maskwa was tasked with organizing a vigil – the first in New York and, possibly, the United States. It was June 1983 and more than 1,500 people attended the Central Park gathering. The words HIV and AIDS sat on the tips of North American tongues. Journalists, scientists and policy-makers would soon learn just how savage the virus could be.
Maskwa’s most poignant loss – in 1997 – is most certainly that of Harold, his partner of 10 years, whom he refers to as the love of his life.
“His mom and sisters were visiting,” Maskwa recalls. “I was holding him. I took care of him. I fell asleep; I was sitting up and he was in my lap. The next thing I knew, his sister was gently waking me and saying ‘he’s gone.’ When he was diagnosed, the first thing he said to me was ‘we’ll never get to grow old together’.”
Maskwa and Harold were married in a “hush-hush” ceremony by Father Mychal Judge, a Catholic priest (who happened to be gay) and chaplain for the New York City fire department. Judge was the first recorded victim of the Sept. 11 terror attacks.
These days the Garson-born artist, who returned to Sudbury in 2006 after living in New York for 25 years, stands at the threshold of another struggle.
Maskwa is not certain how he was infected, but tested positive for HIV in mid-1994 after developing neuropathy in his fingertips. He believes it was a visit to a dirty tattoo shop on his 25th birthday that would determine the course of his life.
“To me life is like a painting – so many colours and textures and depths,” the artist says. “It’s all very fascinating and beautiful, but overcoming the suffering – mostly physical, but emotional, as well – is a challenge.”
Maskwa has been living with neuropathy for a long time and these days, uses a wheelchair to get around. He was having difficulty with balance and muscle spasms, and admits his reduced mobility has been an adjustment.
“I was always very athletic – I was a yoga teacher-trainer – and I could never see myself in a wheelchair or not being able to walk. It just kills me,” he says quietly.
Extreme fatigue is a constant companion these days and Maskwa admits the “complete exhaustion” is a major challenge. He moves and speaks slowly now, and says simple tasks have become arduous. During the winter months, he only leaves his one-bedroom apartment for groceries and doctors’ appointments.
“A typical day for me is just trying to get through the day,” Maskwa says. “Every day is difficult and I realize I have a lot of challenges. Every day is about overcoming adversity.”
But he remains positive – his spirit is strong and intact – and contemplative about this phase of his life. Maskwa’s motives are altruistic.
“My goal with this story is to help other people, to say something that may help someone else who’s in the darkness and needs to be brought into the light,” the gentle man says.
In NYC, Maskwa was well-known in the arts community. He and Harold co-designed a silk scarf that was sold at Buckingham Palace to commemorate Queen Elizabeth II’s 40th year on the throne. He was won national arts competitions and was commissioned to paint a portrait for poet Allen Ginsberg, whom he had met in San Francisco years earlier.
His written work has been published in The Connection, a Long-Island based newspaper focused on the gay community; the New York Times; Time magazine; Paris Match; and Stern, which is based in Germany.
Maskwa knows the curtains are slowly being drawn – he keeps a do-not-resuscitate (DNR) order taped to his refrigerator – but hopes he will be able to finish a few more canvases.
“There are a few more paintings that I’d like to do,” he says. “There’s one that’s a fantasy about living in Sudbury, as a kid growing up. It’s a spoof about the Big Nickel. It’s a whole little scenario.”
He held a successful exhibit last year at the Laughing Buddha and would like to show at the Galerie du Nouvel-Ontario on Elgin Street, as well as a gallery in Toronto.
Having outlived many of his friends, Maskwa relies on a network of volunteers, the Haven program at Health Sciences North and a tight social circle that includes Zoey, his adorable rescue pup. He could be forgiven for an ornery disposition, but continues to exhibit remarkable resilience and dignity. Ever the dapper and elegant man, Maskwa remains optimistic despite his physical limitations.
“There are a lot of reasons for me to be alive – I’m a pretty happy person,” he says. “I focus on the positive and I see so much good in the beautiful people around me.”
Maskwa also relies on his unwavering faith to ease the challenges of his illness.
“It’s what gets me through each day,” he muses. “Faith has been a big part of my life, in terms of having faith that everything will be fine and going with the flow.”
He looks forward to reunions on the other side and to new realms of possibility.
“I’ll see my friends,” he says. “Since nobody has been there, no one can really say what’s on the other side. But I do believe the universe is so vast and infinite that anything is possible.”
The author, artist and activist – he has lived many lives in his one body – remains philosophical. And unafraid.
“I’m not afraid of death; everybody has to die,” he muses. “You know, it’s a process and I believe that it’s a transformation, a metamorphosis.”
Published in The Sudbury Star on Dec. 1, 2014