Abillowy white nightgown reveals what is usually covered: the reddish mound of tissue and fluid bulging from Sharon Sopher's back at the base of her neck.
"Feel it," offers Sopher. She wants her visitor to get to know this "buffalo hump" that is a common side effect of the many medications she takes.
It is the same with the clumpy fat around her midsection -- another side effect, called lipodystrophy; another physical attribute she has no inhibition about showing. And the concaveness left on her arms and legs from the strange shift of her body fat -- she shows that, too.
She's got her left arm in a makeshift sling (the belt of her green bathrobe) because she strained her shoulder while traveling to the District from her home in Madison, Wis. The wasting of her body's muscle mass leaves her susceptible to such injuries.
So here she sits, virtually fuming, trapped inside her room at a Holiday Inn -- defeated, at least temporarily, by this day's skirmish in her battle with AIDS.
For five hours she holds forth -- intensely, angrily, manically, thoughtfully, with a certainty in the rightness of her cause. Somebody's got to sound a louder alarm about women and AIDS, and Sopher has decided it might as well be her.
Somehow she will make it through this setback. A friend will come down from New York to help her get dressed and set up her photo exhibition across town at an event where her latest documentary will be screened.
So Sopher will ignore the pain. She will buck up and fight back, for this is what she has spent decades doing: breaking down barriers, scaling obstacles. An Emmy-winning television producer and filmmaker in the 1970s, '80s and '90s, Sopher, 59, spent her career filming the stories of the world's faceless and oppressed.
She did that in South Africa during white minority rule. Her 1986 documentary, "Witness to Apartheid," exposed the state's brutality against blacks. Not surprisingly, it was banned in South Africa, but it raised international awareness of apartheid's depravities and earned her an Oscar nomination.
Now, after 30 years of turning her camera on others, Sopher has turned it on herself. In a seeringly frank and raw documentary, she has produced what she calls the first film by and about a woman with AIDS. Others have raised their voices about women's vulnerability to AIDS, but for Sopher those voices have not been urgent enough, desperate enough.
"God knew what he was doing when he gave it to me, 'cause I know what to do with this" disease, she says. "It would be irresponsible of me as a journalist to not do this story."
Her film is called "HIV Goddesses: Stories of Courage -- Diary of a Filmmaker."
It depicts her life of traveling and filming in Africa, then falling ill, discovering her disease and struggling to regain her health and some dignity and to go on with her life and work. She hopes it will be the first of a film trilogy about AIDS in America. She'd like to tell the story of betrayals: of women infected by their husbands. And she'd like to tell a story to warn young women and teenagers of their vulnerability to the disease.
There's also the photo exhibit of women with AIDS called "HIV Goddesses: America's Newest Faces of AIDS" and the book she'd like to do and the whole genre of words and images she hopes will emerge to support women with AIDS.
But first, she needs funding.
And second, she needs to stay alive.
A bluish glow bathes Sopher's face. It is nighttime, a bad time, when she is struggling to understand what is wrong with her. It is the year 2000, as depicted in a reenactment in Sopher's documentary, after dozens of doctors have misdiagnosed her.
"I want to know if I have symptoms" of AIDS, she says as she searches the Internet, using her symptoms as key words.
On and off for the previous five years, she had suffered pulmonary problems, inflamed lymph glands, dry cough, fatigue, hair loss, bouts of diarrhea. On a trip to the District, she nearly fainted on the Dupont Circle Metro escalator. A stranger braced her before she could fall. Another time she did collapse, on 42nd Street in Manhattan, where she lived, and ended up in the hospital.
Always, batteries of tests followed. Yet no doctor tested for HIV.
It is, she suspects, because she is an older white woman who doesn't fit the stereotypical profile: IV drug user, prostitute, or woman of color. But HIV never occurred to Sopher either. She never had pneumonia or skin lesions or hepatitis, all of which are commonly associated with AIDS.
Eventually she became so ill that she left her beloved New York, where she'd worked for NBC News for 10 years, and returned to Madison to be near family.
On the Internet that night in her Madison apartment, it slowly dawns on her. Her symptoms point to one thing. (A doctor would later confirm it.) A crushing reality bears down on her. It is followed by a burning anger that she'd been misdiagnosed for so long. And the realization hits her that she couldn't possibly be the only one.
"I knew I had just stumbled upon an amazing story -- the story of women with HIV," she narrates in her film.
Nearly a third of new HIV infections in the United States occur in women, according to the Centers for Disease Control and Prevention. And women now account for 21 percent of all people living with AIDS.
And yet Sopher says she faced a wall of stigma and denial in Madison after her diagnosis.
In her 75-minute documentary, she tells of AIDS counselors who urge her not to reveal her status to friends and family for fear she will be ostracized. Of a Catholic priest to whom she turned for counsel who told her not to visit him again. How she discovered that groups that cater to men with AIDS did not seem particularly welcoming of women with the illness, or at least she didn't feel welcome. There weren't even books in the library about women and AIDS.
"I have never felt so strangulated as a woman in America," she says now in her hotel room.
She had entered a new world, a world where a woman with AIDS would be isolated and alone, disqualified from being respected or considered anything but a diseased person: "Sharon Sopher, woman with AIDS."
For three weeks after her diagnosis was confirmed, she stayed in her apartment. She didn't answer the phone. She kept her curtains drawn. Her family knew she'd been sick and had undergone tests. They feared it was cancer. Her sisters confronted her, demanding answers.
"It was devastating," says Judi Sopher, 56, one of the siblings. She calls it "sheer sadness."
And Sharon was "scared to death," her sister recalls.
But when cornered, Sopher has always mustered for a fight. Those instincts eventually kicked in with AIDS.
She rebelled against the notion of keeping quiet. She bristled against the box -- "woman with AIDS" -- into which she'd suddenly been placed. As she began her anti-retroviral medications and saw her strength returning, she began to reach out to others like her.
Sopher met Beth Bye, another Wisconsin woman with AIDS, during a talk Bye was giving in Milwaukee about the illness.
"She had not been open about her status prior to that, and she was pleased that there was someone else out there that was vocal about their status," says Bye, 45, of Wausau, Wis. Bye, a special-ed teacher, also had been advised by AIDS counselors to keep a low profile, to "think really carefully about who I disclose to, that people probably would not understand."
Bye joined with Sopher and is among the women depicted in the photo exhibit. Sopher began shooting photographs even before she began her film. One led to the other. And Judi, her sister, urged her on.
"I was telling her that if anybody was going to speak about this . . . nobody can tell a story better than a person walking in those shoes," says Judi.
Shooting began in earnest last year, when Marv Turner, an Emmy-winning cameraman, offered to help. He'd heard there was a filmmaker in town who needed someone to run the camera.
After shooting TV news for about 20 years, as well as a documentary on the Bosnian war, Turner, 38, had retreated to Madison so his wife could be near her family. And he dedicated himself to doing film work for faith-based or nonprofit organizations.
"I said to her, 'I know you can't pay,' " says Turner. " 'We'll keep tab of rates and I'll give you an invoice. If you can pay, you'll pay. If not, I'll consider it a tax write-off.' "
"If this can help Sharon or people like Sharon, then this is more gratifying than a nice paycheck."
The film was screened in September at the New York AIDS Film Festival. Last month, a small invited audience viewed it at the Department of Health and Human Services, where Sopher also addressed the President's Advisory Council on AIDS.
And this week both Africare and the Women's Research and Education Institute held their own screenings of her film.
In the documentary, Sopher unwraps her Emmy Award statues (including one for "Witness to Apartheid"). Both are broken. And her quest to have them repaired becomes a metaphor for fixing herself.
"Part of reclaiming my dignity and pride is to get them back whole," she says in the film.
And part of asserting her artistic identity as a filmmaker meant using her skill to tell this story.
But first, she must tell her 82-year-old mother that she is making a film about AIDS. Her mom, who uses an oxygen tank, lives in a senior citizens' home. Sopher wants to discuss with her the possibility that she could be ostracized once word gets out about her daughter with AIDS.
It is a heart-stopping scene as the mother views Sopher's film clip.
"Give me a minute," the mother says. Her face is hard, tight, like she is barely holding on. Then she reaches out to her daughter and sobs, "I love you."
Sharon soothes her, apologizes to her, tells her of the worry that her mother's life will be affected. But it is clear that Mrs. Sopher is a fighter, too. If there is trouble, if someone tries to evict her, she says defiantly, "I will sue them for prejudice."
'How Did You Get It?'
No one asks Sopher how she got AIDS.
The audience at Africare, an aid organization, is made up largely of women, about 30 in all, and the setting is intimate, sisterly. But of all the questions raised last Tuesday evening, none centers on how Sopher contracted the disease.
And that's just as well for Sopher. The very question, she believes, sets a woman up for discrimination, determines how much sympathy people think she deserves.
Society has a "fixation," she says, on "How did you get it?"
The question is "one of the biggest obstacles to preventing it, because people are looking for an 'us and them' excuse," says Sopher. "They want to separate you from me and say, 'Oh, that's why you got it, and that's not me.' "
What she reluctantly discusses in an interview is that her infection must have come from a dirty needle in an African medical facility.
It could have been an injection she received while in Zimbabwe shooting "Praying for Rain," her early 1990s documentary about drought in southern Africa.
She fell ill so often during her many travels in Africa that it is difficult to pinpoint the time of contraction, she says. She finds it ironic that U.S. medical professionals urged her to get virtually every inoculation known to mankind to protect herself during her Africa travels, but no one ever suggested she carry her own clean needle and syringe.
How a kid from the small Midwestern town of Streeter, Ill., ended up charging through Africa with a camera is something that Sopher attributes to her affinity for people on the margins. She says she knew too well about racism and oppression because her grandfather was a member of the Ku Klux Klan. As a child, she says, she once discovered his white robe. And the fact that part of the family was Catholic didn't sit too well with Grandpa, either.
As an adult, much of her work came out of the experiences of black people in the United States and in Africa. In addition to an Emmy-winning series on Muslims in America, she also filmed an interview with Muhammad Ali just after he was diagnosed with Parkinson's disease. And the footage she shot of the Rev. Daniel Berrigan, the anti-Vietnam War activist, while he was being sought by the FBI established early on her reputation for scoops and derring-do.
After 10 years with NBC, she wanted to break out and do more documentary projects. After her early work in Rhodesia covering the guerrillas who would later rule the country renamed Zimbabwe, she ventured to Morocco to produce her first independent documentary, "Blood and Sand: War in the Sahara," which aired on PBS in 1982.
Sopher was known as "adventurous," says Carol Jenkins, who was an anchor for WNBC-TV in New York while Sopher was a producer there. Jenkins, author of "Black Titan: The Making of a Black Millionaire," now sits on the advisory board of Sopher's HIV Goddesses Project.
She was known for "doing stories that other people were not telling," says Jenkins. "She always found stories that were new and interesting."
And now it is AIDS. And the stigma. And the women in the shadows.
"I really want this project to reach out to two types of women," says Sopher that evening in her hotel room. "One is the woman who doesn't have it yet. . . . And the second type are the women with it who are out there hiding."
She cocks her head, a pained expression on her face.
"Why should that be?" she asks. Why should women have to hide?
Sopher wants to create a new social mind-set in which women with AIDS can receive support.
She likens it to her effort to break through the propaganda about white-ruled South Africa. She was even jailed there for her film work.
Comparing AIDS and apartheid, she says, "this one truthfully is a tougher nut to crack."
She's holding an ice bag on her shoulder now. The pain rages, and she needs to tame it.
Producing and showing the film has worn her out -- physically and financially. All the racing around the country is just too much. She is frustrated that everything is so hard for her now.
The fact is, no matter how hard she fights it, no matter how powerful the drug cocktails she takes, the disease drains her energy.
"I feel like I'm competing with time," she says. "When I started this, I didn't know if I'd be alive to finish it."