In the southern African country of Zambia, near the capital Lusaka, there's a phrase people whisper to each other when someone has or is rumored to have AIDS: "Kayonde yonde," or "Slimming, slimming." Bester Seemani says it's the physical weight loss people there associate with the disease.
But 12 years ago, Seemani was unaware of her own physical decline as she was finishing a year and a half of work and study in hotel management in Kansas City. She was eager to go home to her 6-year-old daughter, Sue, who was still living in Zambia.
"My whole life was left back there," says Seemani. "I was supposed to return on May 28th. All my bags were packed."
Seemani never made it back to Zambia that spring. Instead, she was hospitalized and diagnosed with HIV/AIDS. She applied for asylum to the United States in November 2000, citing the discrimination and lack of medical care she would receive if she returned to Zambia. She was granted asylum on Valentine’s Day, 2004.
This week as 25,000 delegates from around the world gather in Washington, DC for the International AIDS Conference, Seemani's story illustrates the evolving interplay between the global AIDS pandemic and U.S. policy on the disease. Seemani is one of more than 6,000 people living with HIV/AIDS in the Kansas City region; the country she comes from has an estimated HIV prevalence rate among adults of 13.5 percent, according to UNICEF, meaning nearly a million Zambians are HIV positive.
Diagnosed here by chance, Seemani received life-saving care, asylum and eventually U.S. citizenship. If her HIV status had been documented when she applied to come to this country on a work-study visa, she likely would have been denied entry. Up until two years ago, the U.S. banned anyone with HIV from traveling to the country. The change in that policy is what led to the International AIDS Conference taking place in D.C.
Sitting inside her cozy apartment in Kansas City, Missouri last week with her now 18-year-old daughter at her side, Seemani recounted her story.
The diagnosis had been a total shock to her. Seemani says just weeks prior to her scheduled flight back home, a good friend who hadn’t seen her in a while stopped by to say goodbye. The friend immediately noticed something was wrong: Seemani had lost so much weight.
"I had been fine," Seemani recalls, "but someone who hasn't seen me for a while, said 'No, you are not OK.'"
Her friend insisted on taking Seemani to a local hospital. She stayed there for 26 days, battling high fevers and undergoing different tests and procedures. She says she had no idea why she was so ill until the day before she was to leave the hospital, when a social worker came to talk about discharge procedures and where she could access AIDS services. Her response was, "What? I have AIDS?"
"I demanded that I wanted to talk to the doctor to find out exactly what's going on," Seemani says. "The doctor came. He was standing really far by the door side, and he's like, 'Yes, you have AIDS.'"
The doctor then told her she'd be able to get medication here that wasn't available in Zambia, medication that would help her improve to the point that she’d be able to care for her daughter. Seemani, like others in Zambia, wasn’t aware such medicine existed.
Coping With Stigma Across Continents
So despite longing to be with her family, she stayed in Kansas City. Her first challenge came up before she even left the hospital: Staff warned her not to let anyone know about her diagnosis.
"Having to come here and deal with this huge secret, it was a very big burden to carry," says Seemani. "It's like I've taken a gun and shot someone in the face, like I'm the one that's actually caused this problem. Whereas it's supposed to be the other way, people feeling sympathy for you because you’re the one who’s sick."
That secrecy was very painful for Seemani's daughter, Sue, who had to deal with the absence of her mother – and not knowing why her mother hadn’t come home.
"I just remember waiting there, and just sitting and knowing that tomorrow I’m going to the airport and my mom will be coming home," Sue recalls. "And just being told that she’s not coming, and never being given an explanation why."
Sue, whose father dropped out of her life when she was 2, heard relatives and friends speculate that Seemani had gotten married, had found a new family. "It was pretty hard and pretty harsh to have to deal with all of that," Sue says.
Seemani is not sure how she contracted the virus. It may have been through sex, or through a blood transfusion she needed after giving birth to Sue. She also wonders if she got it from a traditional healer she went to, who cut her skin with razors that could have been contaminated.
Seemani was sure about one thing: the stigma around AIDS in Zambia was huge. Seemani says telling her family about her diagnosis would be more damaging to them than to her.
"My daughter would receive the same discrimination and bad treatment as though she had AIDS herself, and my sister [the] same way, as if they have the disease," she says. "Even though they don’t have it, it affects the entire family."
As the primary breadwinner for her family and not knowing whether the medicine would help, she also felt that confiding in her siblings would be too devastating.
"They would be completely hopeless, because I'm the person they look up to," says Seemani.
Reuniting With Daughter, But Challenges Remain
So Seemani kept the secret to herself, confiding in just a few people, all the while getting treatment in Kansas City. She returned to work. About a year later, she had the paperwork and funds needed to bring her daughter to Kansas City.
"Even though she had been gone for three years," Sue begins. Seemani corrects her: "Two years eight months."
"Even though she was gone for two years eight months," Sue says. "She was still my mom."
The two eventually moved out of a hotel where Seemani worked and into an apartment. Seemani got a car, which she says was essential to their independence.
Even though Seemani and her daughter were finally together, life in Kansas City wasn’t easy. She still didn’t tell Sue her HIV status until it was about to come up during one of their asylum application hearings.
"I don't think she was ever going to tell me," says Sue. But she didn't need to be told. Sue already knew.
"I used to do all her drug cocktails," Sue says. "So it was basically every Sunday, I’m the one who’s sitting there going through five or seven or 12 different pill bottles, [organizing them]. It was a really easy thing to do, just dropping them in the box. And it was just a way to help out."
Seemani says she’s been fortunate in that accessing HIV medication has never been a challenge. But side effects from the pills and the health issues associated with the disease have at times been debilitating. In 2005, the bone in her right hip started deteriorating, at times limiting her ability to walk, and threatening to confine her to a nursing home. She stopped taking medication for several years.
But even when she was at the peak of her health - working several jobs, going to community college, raising her daughter - Seemani lived in fear that others might find out about her HIV status.
"Because we don’t want anyone to know, we can’t mix with anyone," Seemani says. "We really just didn’t have a life."
Sue also had trouble: "It was also really stressful because I was 7, turning 8. And I can’t talk to anyone about it. And I go to school, and I was bullied quite a bit just for being different and not being from here. And so I was miserable."
They were not completely alone. Seemani did get help from a volunteer with a local AIDS agency. She was also involved with an all women’s HIV support and education group. She still keeps in touch with the women.
"Sometimes it's just helpful to sit down with other women. You all have these concerns and you just talk about things," she says.
Sue found refuge in a week-long camp for kids affected by HIV. But while these outlets were essential for coping, both say they weren't enough.
Lifting The Burden
Seemani says it was during one of her lowest points, when she just couldn’t go it alone anymore, that she had a major breakthrough. She was out of work, experiencing some serious health problems, didn’t have money for food and could barely pay the utility bills. She finally told someone from Sue’s school about her situation and asked for help. The supportive reactions made her realize she no longer had to worry about keeping her sickness a secret.
"Life just changed for the better. It became easier to talk about things, to deal with issues," says Seemani. "That's when we started having friends over, and now we can talk about it anywhere. Even the Zambian community [in the U.S.], everybody who knows me knows I’m positive."
Seemani says the change gave her more strength and energy. Sue, meanwhile, began talking back to peers who made jokes about HIV. In eighth grade, she finally told a friend about her mom. In high school, she joined a group of young adults affected by HIV who traveled to schools around the country to share their experiences.
"The only way for me to feel like I could really conquer it was by getting over it, not making it less important, but getting into a place where keeping the secret wasn’t controlling my life anymore," Sue says.
A Return Home, Hope For The Future
Seemani and Sue say it wasn’t like everything was immediately okay after they stopped keeping HIV a secret. The stress from the disease and from not having enough resources to survive has had a huge physical and psychological toll. At one point, Sue went into foster care, staying with a family friend while her mom recovered.
But this May, Sue completed her first year at Columbia University on a full scholarship. The two were also recently granted U.S. citizenship, and with that, they finally had the chance to take a trip home to Zambia over winter break.
Seemani gets the impression that the stigma around HIV in Zambia has changed since she was first diagnosed with the disease 12 years ago.
"Because so many people are sick," says Seemani. "So almost every household, maybe they have someone who has AIDS. So it really doesn’t make sense for one family to be pointing fingers at the other family when they are dealing with it in their own family. It’s just so commonplace now that people are more accepting."
Back in Kansas City, Seemani says life continues to have ups and downs. She’s unemployed right now, but wants to get back to work in hotel management. Her hip problem makes it difficult to walk, and she’s struggling to find treatment. Still, Seemani says she has faith that things will work out the way they’re supposed to.
"I never lose hope," says Seemani. "I know I’m sick right now. It's just one of those challenges that I have to go through. I know it's going to pass, and I’ll have many more years of bright future ahead of me."
This story is part of a reporting partnership that includes KCUR, NPR and Kaiser Health News.