40 years of AIDS: “I’m living, but a part of me has died”

“I’m not unscathed. It’s a trauma after all”, explains Maxime, 67 years of age, living with HIV for 39 years.

“Bob died in my arms in June 1986. He was the love of my life, I’ve been a widower ever since.”  Maxime Journiac is 67 years old today. He is a survivor – although he does not like this term – from the early years of AIDS. A disease mentioned for the first time 40 years ago to the day.

This Parisian contracted HIV “between 1981 and 1983, in the United States”, in his twenties, when he was fleeing heartache and discovering New York life by working in restaurants fond of Frenchie workers. “At that time, we didn’t know, words weren’t being said,” he recalls. It was the time of disco, we were spending the night in fabulous clubs and we ended up in after parties. It was party, party, party. I was sleeping little. I was taking drugs, but never injected. There was a lot of fucking around. We were hearing rumours, there was a disease called Grid (Gay related immune deficiency). We laughed, saying to ourselves that they had found nothing better than to put a disease on our backs.

Already, on June 5, 1981, the American Centre for Disease Control (CDC) alerted of a mysterious pneumonia which hit young homosexuals, then in the following months the “4 H’s”: heroin addicts, homosexuals, Haitians and hemophiliacs.

Stigmatised patients

The years that follow are “horror”, the retiree repeats, sporting short hair, a neat beard and stylish glasses. His three successive American lovers or loves all died between 1986 and 1987. Three souls in the middle of an ocean of victims having contracted the germs of the disease “in a time when we didn’t know”.

“At the end of my stay in America in 1992, I went through my address book and crossed out 112 names,” he says. People between 25 and 35 years old. We were very beautiful, happy, gay. People would die alone. The bodies were collected by families from whom they were often cut off, with lovers or friends not allowed to attend funerals. We were deprived of mourning. ”

It was a time of stigma, at least until the late 1980s. “Mitterrand never used the word AIDS,” Maxime notes. It was shameful, the disease of queers, drug addicts and minorities. For fear of being on file, he waited until 1987 to put clarity to his own HIV-positive situation through a test, while having stopped all risky behavior by 1983.

“I had no doubts about my positivity, although I still had a sort of hope… The doctor was a 25-year-old African American man, he was really sorry, it was me who was reassuring him. ”

Even before this confirmation, the movie lover became convinced: “I thought to myself: I’m probably going to die of AIDS, but I won’t die of it, stupid. Desperation never existed for me. At first I was flabbergasted, then very quickly anger and the need to educate myself. ”

For three decades, he took part in all the fights, led “actions of visibility at a time when everyone was hiding”, joined Act Up, the editorial staff of the newspaper “Gai Pied”, worked at Sida info service, where he spent most of his career, while integrating or collaborating with several leading groups on the disease (TRT5, ANRS, EATG…).

First treatments

They are rare today, in the generation of the first-infected, to still be there to testify. “I was lucky,” these words slip out from this sensitive and talkative man, with a little irony. When he joined the clinical trial in 1988 which tested AZT in patients at a fairly early stage, his CD4 count, the indicator that measures the level of effectiveness of the immune system, was 460. “At 500, it’s okay, at 200, we enter the dangerous zone, at 100 we are in trouble and at 50, we catch all the opportunistic diseases,” he summarises.

He would not fall to the threshold of 200 until 1999, after having stopped his antiretroviral for two years, exhausted by the successive treatments of hepatitis C which haunted him from childhood to 2014. From his HIV and this hepatitis, he developed pulmonary arterial hypertension which reminds him every time he climbs the stairs and “prevents him from dancing”, a great regret.

The viral load is now undetectable in his body. A victory, after many years torn from the outcome as promised. “I had no fear of death, but I was haunted by the year 2000. I told myself I would never see it. When I was 50, in 2004, I had a hard time believing it. I have known triple therapy, with Ritonavir which gave diarrhea, Crixivan which made him lose his hair, gave renal colic and AZT which was not very good for the cells… It was only ten years ago before everything really changed. Someone who finds out they are HIV positive will live normally on one or two pills a day. He always takes a small dozen.

Despite this, the activist still notes the same taboos, the same silence: “It seems that AIDS does not exist, that it is a thing of the past. I can’t tell if this is good news or bad news. “While he has been a player in the accessibility of post-exposure treatment (PEP), PrEP is coming to GP practices, which he finds “very good”. This medication helps protect against possible infection in the event of unprotected intercourse.

“I never had a real romantic relationship again”

His intimate life almost ended in the 1980s. “I never had a real romantic relationship again. HIV is an enormous narcissistic wound. I couldn’t have sex anymore, I felt like my cock was a gun,” he bluntly blurted out. The scattered adventures, held back by a body battered by many treatments, never fulfilled that part of him abandoned in the worst AIDS years: “I’m not unscathed. It’s a trauma after all. I am unable to project myself into the future. I’m alive, but part of me has died.”

Maxime Journiac admits he has “existential questions”, confesses that he “lives very alone”, but reluctantly acknowledges that he is “awkwardly looking for a shoulder to rest his head on”. And finally to find a little sweetness after four decades of deadly violence.