Brian Gougeon started counting the purple spots on his legs in the spring of 1987. He consulted a doctor in Chicago about it, just as he did a few weeks later when thrush reappeared on his tongue and tonsils. If the doctor was piecing together a diagnosis, either he wasn’t telling him or Gougeon chose not to tell his friends.
It had been months since we last spoke. He had stopped returning my phone calls, saying long-distance bills were outside his budget. Instead he answered via ornately decorated postcards, devoid of personal news. Then, just after his birthday in July, Susan Wild, a mutual friend from college, called to say he’d been admitted to the Illinois Masonic hospital with pneumonia and toxoplasmosis. “He asked me to come help him get to the hospital,” she said. “He wanted to take a shower first, but didn’t have the strength—he’s so thin, David, I had to help him. He was embarrassed and apologizing the whole time. When we got to the ER, they ran tests and diagnosed pneumonia. They put him in the AIDS ward.”
I had been waiting for, and dreading, and hoping against, this moment since AIDS first surfaced, when we were invincible twenty-two-year-olds, chain-smoking and reading the Times with Ray-Bans balanced smugly on our noses. I wanted to race to see him, but Wild said Gougeon had requested privacy. The toxoplasmosis left him somewhat confused. But he did want my advice. She read from a list of his lab results, a portrait in acronyms and ratios. He was very sick. I answered what I could and promised to research the rest. Most pressing was whether he should take AZT, which the physician had ordered. Given his low CD4 count and the high doses of pentamidine, I said I thought it was a good idea.
“He’s going to need money,” I added. He could be hospitalized for months, and unless he had savings he risked losing his apartment. I offered to pass a hat among his friends in New York and she accepted reluctantly, not focused on anything so long term. I spent the next week planning a gathering of his New York friends. The work gave me a feeling of usefulness. That Saturday, three dozen people convened at my apartment with small sums of cash in envelopes, a little over $800 in total. Someone brought a bulky camcorder and we wished Brian a speedy recovery through the newest technology.
When the videocassette arrived in Chicago along with the emergency funds, Susan Wild called to say he wouldn’t be watching it. “I guess he’s blind,” she said. “It happened so quickly. He was talking to his mother yesterday and said, ‘Norma’—he calls her Norma—‘Norma, would you turn on the light? We shouldn’t have to sit here in the dark.’ But of course, it was the middle of the day. Sunlight was streaming in. When they figured out what had happened, and that the blindness was irreversible, he was really scared. He said to Norma, ‘I’m a blind artist. What good is a blind artist?’ And she said to him, ‘Sculpture, honey. You could be a great sculptor.’ By the time I talked to him, he had already begun to adjust a little, and I just cried.”
His jar of AZT, delayed by shortages and high demand, arrived almost two weeks later. By then he was in no condition to take it, having slipped into a coma from which he never returned. He was twenty-eight when he died.
That call from Wild was the most devastating of my life. I’d spent six years gathering esoteric information, investigating every medical lead, ingratiating myself to scientists, doctors, activists, and patients. None of it made a bit of difference. Nurses gave Wild the chance to bequeath his unused AZT to a recipient of her choosing, but she suggested they just give it to the next person in need.
The Roman Catholic service was private. Norma Gougeon laid her second-youngest son to rest at the Holy Cross Cemetery in Alpena, Michigan, with six of his brothers as pallbearers. She kept the cause of death a secret from her priest and the local paper, attuned to the possible consequences. A memorial gathering for his friends in Chicago would take place in a few weeks.
I was back at ACT UP a Monday or two later. Like a wedding chapel or a movie theater, it was a place where you could cry without causing alarm. A man sitting to my left silently rested a hand on my rocking shoulder for a few moments. I was grateful for the stranger’s gesture.
— David France, How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS (2016), Pt. 3, Ch. 3