This Gay Man Thinks HIV Medications Forced Him To Live In Darkness

A new documentary explores a San Francisco artist's extreme photosensitivity.

At least his electricity bill is low.

How to Make a Pearl, Jason Hanasik’s new documentary for The Guardian, shines a light—sorry—on the strange subterranean life of John Kapellas, a gay man who has lived in darkness for the past decade.

It was 2007 when Kapellas began breaking out in itchy, burning rashes on his face and body. “It was as if my skin was being held against a flame, searing for days on end,” he tells The Guardian.

How to Make a Pearl/Guardian

Diagnosed by doctors as photosensitive and told there was no likely cure, the artist retreated to a San Francisco basement apartment, where he channels his curse into creativity.

Although doctors have been unable to determine the cause of his severe photosensitivity, Kapellas, who was diagnosed with HIV in 1987 and has taken various HIV medications since the ’90s, blames his drug cocktail.

“But 10 years ago, one of these drugs—or some combination—wrecked my body in a way doctors still don’t understand,” he says. “Aged 53, over a period of three or four months, I became allergic to light. I have had to live in pitch black ever since.”

Although he spends 18 hours a day in complete darkness, Kapellas, who is sensitive to the entire spectrum of natural and artificial light, uses a flashlight for brief intervals and wraps up in blankets before watching TV on a small laptop computer. He also hosts weekly dinner parties in the dark.

How to Make a Pearl/Guardian

“One of the advantages of living without light is you don’t have to worry too much about appearances,” he jokes.

Wearing a hat, hoodie, and gloves for protection, Kapellas does enjoy daily walks at 5am, when street lamps have shut off but the sun has yet to rise.

“Sometimes I feel a prisoner of light—like my whole existence has been shrunk into a single apartment—and that’s more isolating than I ever imagined,” he says. “But I live in hope that I’ll recover. I dream of taking a long stroll in the sun, or a trip out of the city, or really seeing my art again. But if those things never happen, I’m happy with the life I’ve had.”
 

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