Women with AIDS: Off the Radar Screen

By Janine Avril

I feel for all women with AIDS, but my heart goes out to women like my mother who have lived, suffered and died with it secretly, perhaps without even naming it AIDS to themselves. Sixteen years after my mother’s death, there is a huge and unfulfilling gap between my own questions and the answers that she could give me to help me to best understand the painful experiences that she endured in the wake of the AIDS crisis.

My father, a chef, restaurateur and émigré from France who had been embraced by my mother’s New York family, approached the family in 1986 to share that he was HIV positive. My mother’s shock and fear upon hearing the words which changed her life irrevocably prompted her to decide never to be tested for HIV. She felt she couldn’t live with the knowing, so she continued her life with hope and prayers; I’m sure there was not a day that she lived without fear, without shadows lurking in her mind of when AIDS could hit her and take her away from her two young children. Nonetheless, she kept the secret of my father’s diagnosis from her best friends, from the community members of the insular nouveau riche Long Island community where I grew up, and moreover from her doctors. Even when my mother came down with a rare, inexplicable soft tissue cell sarcoma, she didn’t utter the word AIDS, and no one picked up on her HIV status. A white, heterosexual Jewish suburban woman was simply not on the radar screen for testing back then. She underwent treatment for “cancer” and died shortly after.

I’d lived out my childhood and grew into my late twenties before I even learned that my mother had been exposed to HIV and before I drew the logical conclusion that her death was not some random and cruel strike of nature but had rhyme and reason. I know my mother was one among countless women/mothers in the 1980’s to discover that her husband was HIV positive, to decide against testing, and to die a statistic never taken…I know there are women living with HIV today who won’t tell a soul if they suspect infection and who therefore will suffer privately. This saddens me since I feel that there should be no shame attached to the disease; women exposed should all feel free to seek testing, support, and the love they all deserve to help them through the uniquely traumatic experience of HIV/AIDS.

My father did not infect my mother intentionally; I know that even though he was promiscuous, he wouldn’t have wished to hurt her. When I reflect on his view of women which was rooted in his own upbringing, I feel that he dichotomized women into Madonnas and whores. His misogyny unfortunately had cataclysmic effects on my family. My mother was his loyal wife who lived at home and expected his faithfulness; the women (and men) he slept with on the side were his playthings. Because of the way that he dichotomized the role of his wife and the role of his lovers, my mother contracted AIDS. I feel the deepest sympathy for the loyal wives and mothers out there who expect fidelity and instead receive chronic illnesses or death sentences. It’s unfortunate that the punishment for infidelity can be far worse than the crime. The way that men might conceptualize women at a core level needs adjustment. If sexism and misogyny are examined and challenged, it will translate to women’s lives saved. Women cope with husbands who devalue them; they balance this hardship with being primary caretakers. They are often selfless and many keep their demons private.

Janine Avril is a writer and educator in New York. She is the author of Nightlight: A Memoir.


The Café