Testimony recorded by Laure Dasinieres

I didn’t see my father often. The rare moments we spent together were both tender and awkward. I think he didn’t really know how to interact with children, having grown up himself in a Swiss boarding school, far away from his family, where he was placed at the age of three after arriving from Egypt. When I was twelve, he took me into town to buy a Walkman. We were both a bit shy. I believe he was the one who taught my brother and me how to play chess. He loved literature, and I’ve kept just a few of his books, the ones filled with his handwritten notes.

I only saw my father sick once. He was already very weak: he used a wheelchair and had memory problems. At the time, they said it was a brain tumor. The day before he died, my brother and I were called to see him. They told us: “Your father has AIDS. His drug use destroyed his health.”

I rushed to the hospital to see him. He was already unconscious, his face emaciated — a look that was then typical of people with AIDS. I couldn’t speak to him. I could only give him a kiss. A few hours later, he passed away.

After his death, there were more deaths in the family. Always from AIDS. It was a tragedy that seemed to have no end. I carried that burden with me. Later, when I became an adult, I left the city where I had grown up. As if to break the silence and unravel all the unanswered questions surrounding my story, I threw myself, almost obsessively, into the history of the epidemic. I wanted to understand everything. When did it begin? Where? How? How did it spread?

I studied its history — from the first “official” cases in the 1980s to the development of combination therapies. I read about activism, the most affected communities, the early treatments, the false hopes, and the political battles. Then I looked for the earliest mentions or depictions of AIDS in film, theatre, and literature... I read everything, watched everything. I studied how pop culture approached the subject — how it told the story of the disease, or how it chose to remain silent. I became an expert in the field. “I became an expert in something I couldn’t understand when it happened.”

All of this helped me — it allowed me to find words for what I had never been able to say, and to make sense of what I hadn’t understood. Most importantly, I realized that the questions that tormented me in 1989 — Where does this disease come from? Why is there no treatment? What is going on? — weren’t just mine. They were the questions of the whole world.

The silence I grew up in wasn’t just the silence of my family or the shame imposed by society. It was also the silence of uncertainty — because at the time, we were all moving forward blindly. AIDS was being researched slowly, with more fear than answers.