Nyamu has been through a variety of programs and support groups designed to help HIV-infected people deal with the awesome burden of knowing they have an incurable disease. It is a knowledge that can be as debilitating as the physical symptoms of the disease, which on the average do not manifest themselves for more than 11 years after the initial infection.
She has been in support groups with gay white males, where gayness seemed as much an issue of discussion as HIV, and groups for black women who acquired the virus through dirty needles, and for whom drug abuse is as much a topic of discourse as HIV.
As HIV specialist Dr. Philip Johnson observes, the entire issue of HIV patient support groups is a difficult one. How much support can a group generate, when half its members may be dead before a year has passed?
Beneva has spoken to youth and church groups on HIV awareness, traveled to Yokohama, Japan, for an international conference on HIV and had the satisfaction of serving as an election observer for South Africa's first free elections. Yet at this culminating struggle of her life, she feels shut out of a vital role in the fight against AIDS.
"She can't seem to latch on to any groups that are predominantly people like herself," says Fatima Weathers. "She did come to Cleveland one time and she talked with people doing HIV groups here. But they indicated a similar dilemma, that most of the funding and the programs are actually doing outreach to gay white males and that has to do with the stigma still associated with the illness, and that it's so hard to organize around it."
Nyamu, who contends the HIV movement is controlled by gay white males and middle-class white women, believes that the priorities for addressing HIV infection in minority communities are being subordinated to other agendas.
For the girl in the schoolhouse door, the irony is overwhelming. At 14 she was enlisted in the Civil Rights struggle before she had any awareness of it, went to Africa to escape racism, and there contracted a virus that now has forced her to return to face an issue she hoped to leave behind forever.
With U.S. health specialists predicting that the fastest growth rate in HIV infection in the United States will occur among African-American women in the South, one would think there would be a large role for an advocate with Nyamu's varied background.
So far she hasn't found it.
"Here I am, a 50-year-old woman, three college degrees and sort of at the prime when you're ready to do something," she says. "And there was nothing for you to do. And that has been a major issue for me."
"It's a real dilemma for her," agrees Weathers. "She can't find people to share what she's going through, so that she can have people going through this with her."
Part of her difficulty is Beneva's impatience with the process of working slowly into an organization and developing ties and bringing people along slowly to her point of view.
"My mother sees something wrong, and she feels that she should contribute toward making it right," says Ndapanda. "The reason she's had frustration is that not everybody is willing to change. And maybe she's trying to do too much in too little time."
It's late morning on the outdoor patio of a coffee shop in the Heights. Beneva picks at her plate of scrambled eggs, eating very slowly. The HIV medication makes it impossible for her to eat much at any one time, and Beneva eventually bags some toast and eggs to snack on later in the day.
A fitful breeze kicked up by a distant thundershower is damp and humid on this early summer day, and for Beneva it conjures up memories of the palm-lined avenues and Indian Ocean trade winds of Dar es Salaam.
"Those are the places where my heart is," she says softly after a pause in the conversation. Her eyes seem focused on a point very far away. "My body may be here, but my heart isn't."
Hers is an emptiness that can't be remedied with an IV drip. The person Beneva is perhaps closest to in spirit, the friend she made in those electric days in Dar es Salaam, wishes something quite different for Nyamu.
"I think that she genuinely believes that what she's looking for is in Africa," says Fatima Weathers. "My own analysis is very different, that what Beneva is really looking for is something within herself, that there's no place that will provide it. That it's a journey within that she hasn't taken yet. I hope she does.
