(WOMENSENEWS)--When Sharon Sopher diagnosed herself in July 2000, it was her journalistic instinct that kicked in, not her fear of dying. She'd stumbled onto a story she hoped she'd live long enough to tell.
Misdiagnosed by 27 doctors over five years, Sopher determined that night while surfing the Internet that she must be HIV positive.
Sopher said she'd never been advised by her doctors to take an HIV test, even though she'd shown classic symptoms of the virus such as swollen and inflamed lymph glands, nausea, diarrhea and fatigue as early as 1996.
After having her diagnosis confirmed, Sopher, an award-winning television journalist, decided to be open about her disease and to take on the toughest assignment of her 30-year career: to tell the story of women living with AIDS in the United States and to make AIDS a women's health issue.
HIV/AIDS Rising Among Women
HIV/AIDS rates among women are climbing. Women made up nearly 50 percent of all HIV cases as of December 2003, with girls and young women at greatest risk of contracting the disease, according to a 2004 report by the Joint United Nations Programme on HIV/AIDS.
But even though the disease is spreading fast among women, awareness is not, Sopher told Women's eNews during an interview in a New York City cafe.
"In the 23 years of the epidemic, it's like information was stalled," she said from behind her yellow-tinted glasses, her long brown hair in a loose bun. "But the part that isn't frozen is the passing of the disease. This project is an attempt to catch up to the epidemic."
In 2001, Sopher launched a multi-media project called HIV Goddesses: A Women's Wellness and Empowerment Project.
The centerpiece of the project is her documentary, "HIV Goddesses: Stories of Courage," which premiered in New York City last month. Other parts of the project include a black and white photo exhibit featuring American women living with AIDS and a bookmark with gender-based facts.
As part of her research, Sopher attended an AIDS film festival in New York last May. Of the 100 films she watched, none were about women and AIDS in the United States. "What struck me was that every film about a woman was somewhere else," she said
AIDS Erases Who You Were, Defines Who You Are
In her own film, Sopher tells her own story and confesses that "AIDS totally erases who you were and becomes the definer of who you are."
Neil Willenson, the founder of a camp in Minnesota for children with HIV/AIDS, applauds Sopher's decision to put her own story in the film. "Rather than remaining behind the camera, Sharon herself is the subject of her debut film about women with AIDS," he said "By doing so, she has lifted the veil of secrecy that so often surrounds the AIDS epidemic. Sharon's struggle with the disease mirrors the struggles of millions of women worldwide."
Carol Jenkins is a writer and documentary filmmaker who worked with Sopher for over 10 years at NBC, when Sopher was employed there as a producer. Jenkins says that her colleague's decision to undertake an AIDS project "when no one wants to recognize AIDS as a women's issue" is consistent with the woman she has known for so long. "Sharon always had wild ideas before they became chic," she said.
Dorothy Davis, president of The Diasporan Touch, a New York-based international public affairs consulting firm, met Sopher around 12 years ago while working at the African American Institute, where she helped Sopher become a media fellow. She too sees something characteristic in Sopher's decision to tell her own AIDS story.
"The single most important contribution that Sharon has made as a journalist is humanizing any very complex international story, for example apartheid and now AIDS," Davis said in an e-mail interview from Ethiopia.
An Emmy for Directing Film on Apartheid
Sopher suspects she contracted HIV from a dirty needle in a medical facility while covering the liberation struggles in South Africa as a television producer and filmmaker.
Sopher made her first independent documentary about Africa, "Blood and Sand: War in the Sahara," which aired in 1982. In 1985, after leaving her post as a producer for NBC, she went on to make three more films. "Witness to Apartheid" looks at human right abuses in South Africa. She won a directing Emmy for it in 1996. The film was also nominated for an Oscar.
She says she cannot even suspect the particular moment when she might have become infected. Every time she went to Africa, she said, she got sick and received numerous injections.
Despite all her years reporting from Africa--20 years in all, from one assignment to another as producer and filmmaker--Sopher didn't think she was at risk, partly because AIDS was still thought of as a gay man's disease. Doctors had not advised her to take clean syringes with her in case she got blood work done.
"They would send me with antibiotic regimens, shots for things from the plague to cholera," said Sopher. "No one said there's a new disease, all it takes is a dirty needle."
Sopher pulled out a yellow chart from her purse that listed every inoculation she'd received since 1976. "A bag of clean syringes cost $1.50."
Two Goals in 1968
Sopher had two goals when she graduated from the University of Wisconsin in 1968: to move to New York City and to work in television.
She reached New York a few years later and worked, among other things, on a CBS talk show called "Woman!," which men in the office termed the "Dyke Van Dick" show.
In 1973 Sopher was hired by NBC, where she produced the first report on vaginal self-exams, enabling her to hire the first all female news crew. In 1977, she won an Emmy for a series on black Muslims in America.
Sopher was sent to Africa for the first time in 1976 to cover the liberation movement in what is now Zimbabwe. She fell in love immediately with the continent.
"The people were the opposite of everything I'd ever seen on people in Africa, which had been so discriminating," she said. "I wanted to put a human face on people, who weren't often presented that way. I believe in media as a tool for social change."
Juhie Bhatia is a writer in New York City.