When I saw the scene in the Oscar-nominated Dallas Buyers Club in which a sad-eyed doctor told the skeletal Ron Woodroof, played by Matthew McConaughey, that he had full-blown AIDS and would die within weeks, I sunk low in my seat and covered my eyes.
It’s hard for me to watch movies about AIDS because I lived it, and it remains the stuff of my nightmares. In the summer of 1990, just after my second child was born, I stood in a hospital room beside my febrile, disoriented husband, John—a promising young journalist whose heterosexuality I never doubted—as a doctor handed him the same diagnosis and imminent death sentence.
It’s also hard because I never see myself in these movies. There are women doctors, nurses, social workers, coworkers, sisters, friends, prostitutes, and drug addicts—but never anyone like me or all the other HIV-negative wives of men with AIDS with whom I huddled in a Greenwich Village church basement that awful summer 24 years ago. We weren’t just wives in that church. We were mothers of soon-to-be fatherless children, too.
Back then, people thought homosexual men got AIDS from unthinkable sex acts in bars and bathhouses. People feared they could catch it from handshakes, toothbrushes, and toilet seats. Imagine their reaction if they heard our husbands, the fathers of our children – guys just down the street – had it.
Each week, our unmerry little band drilled down one thing and one thing only: the importance of hiding the truth of what was killing our husbands to protect our young.
After our husbands died, which they did quickly back then, we scattered like the four winds, dropping each other – and AIDS – like hot potatoes.
At the same time, scores of gay men were in the fight of their lives. I would see them on the evening news, valiant Davids struggling up against powerful government and corporate Goliaths, desperate for help, for a cure for the “plague.” I envied them for their brotherhood, but there didn’t seem room for me, for my uniquely maternal struggle with AIDS. How could these men, mostly childless, understand how my secret burned at PTA meetings? Or my irrational panic when a child coughed or spiked a high fever? How could they relate to how my stomach churned when I thought a blind date had discerned the truth of how my husband died? Or my fear of being touched?
I fantasized keeping step with these men marching against the tide, a red ribbon boldly tacked to my breast. Then I’d remember the skirt I was wearing, protecting my children in its folds, which would surely trip me up.
Last year, my son, the baby born just before his father was diagnosed with AIDS, graduated from college while his older sister graduated from medical school.
At the same time, I looked up and saw that something called Modern Family had become The New Normal. I saw swelling numbers of young people calling themselves LGBTQIA. Even NBA players and All-American athletes were out. And powerful antiretroviral drug therapies were saving AIDS patients’ lives.
Could I now finally use the words “husband” and “AIDS” in one sentence?
I was tentative at first. It was a struggle inserting John into conversations after so many exhausting years keeping him out. But then I began talking more freely and meeting women like me.
This fall, I found myself sitting at lunch with two co-workers from a regional office halfway across the country. One had been an AIDS social worker in the ‘90s, and the other had lost a brother to AIDS the same year John died. He had also left behind a wife and child.
Meeting women touched by AIDS became a game of telephone. Like me, most had kids who had grown up and no longer needed protection from stigma. Like me, they were not only ready to talk, they were desperate.
Some, of course, were not just like me. Some had buried their husbands but been left behind carrying the AIDS virus. When it comes to coming out about AIDS, they are far, far braver than I.
Yet, in the end, we are all sisters who have survived the secrets, shame, and stigma endemic to the disease. We are at long last able to say, “Don’t forget, we were there, too.”
Women comprise 27% of all new cases of AIDS in America, many infected by heterosexual contact. In some regions, that number skyrockets as high as 40%. Since 1985, the proportion of AIDS diagnoses reported among women has tripled. To remain secretive and invisible about AIDS today can mean one less person getting tested, getting on the right treatment program, or conducting an honest relationship.
Dallas Buyers Club is a movie that strives, in my opinion, to be as honest about AIDS as box office numbers will allow. Which, in the end, is not all that honest. Ron Woodroof was married and infamous for sleeping with both men and women. Yet, there is no mention of Woodroof’s wife in the movie, and he’s portrayed in the movie as a homophobic heterosexual. We never find out what happens to the lissome young women with whom he engages in a coked up threesome at a time when his immune system is crashing and he is most infectious. Did these young women end up getting AIDS, too?
Someday, perhaps, there will be more honest movies about AIDS that will serve to more accurately memorialize it.
Maggie Kneip is a veteran of the publishing industry, with a career spanning 20 years as a publicity and marketing executive at Bantam Doubleday Dell, Scholastic Inc., and Abrams. She has also performed her own cabaret act at Manhattan’s Metropolitan Room and The Laurie Beechman Theatre. She is currently at work on a memoir entitled, Left Unsaid: Love at the Dawn of AIDS.