Ignorance about the 150,000 children in Kenya who are HIV-positive and often orphaned or abandoned. Ignorance about the thousands of children who dwell in Kibera, Kenya ‘s largest slum, where they live on a dollar a day, surrounded by fly-infested feces and burning trash. Ignorance about the women whose husbands beat them if they ask to use a condom.
“Knowledge can be painful, ” says Gold, 56, who took a leave from her nursing job at UW Hospital to work in Kenya as a Fulbright scholar. “It really changes who you are. You can ‘t go back and look at the world the same way. You just can ‘t. “
For now, Gold is back in her old world to celebrate the holidays and reconnect with her family in Madison. But next month, she ‘ll be back in Kenya working to expand the sex education program she created for HIV-positive teens. The U.S. government plans to fund her work over the next year as she trains a Kenyan nurse to take over the program in 2009.
Gold ‘s goal is simple but elusive in Kenya, a country in which misinformation about AIDS is rampant. She tries to help HIV-positive teens sort myth from reality to keep themselves healthy and prevent them from passing the virus to their partners and, someday, to their own children.
“Susan ‘s work on sexuality education and HIV prevention with HIV-positive adolescents has broken new ground, ” says Warren Buckingham, Kenya coordinator for the President ‘s Emergency Plan for AIDS Relief.
In the 10 months Gold spent in Kenya, she bustled from classroom to clinic to coffee shop in Capri pants and beaded flip-flops, spreading her gospel of prevention. She has a way of taking over a room and turning strangers into friends with her unabashed talk about the most intimate of subjects.
Her base has been Nyumbani Children ‘s Home, which opened in 1992 as the first hospice center for HIV-positive children in Kenya. More than 100 orphans live at Nyumbani, which means home in Swahili, and it ‘s an apt description of the place full of cottages and “mums ” and “brothers and sisters. ”
When the children see Gold, they gleefully yell her name: “Susan Gold! Susan Gold! ” She rewards them with hearty hugs.
Before the development and distribution of antiretroviral drugs, the orphanage ‘s backyard cemetery claimed a victim a month.
Now, these children live into puberty and their sexual years. Some are fully physically developed, showing few outward signs of the virus. But some have been permanently stunted by HIV — girls such as Sara, a 17-year-old with fully developed breasts who has stopped growing at 4
Sister Mary Owens, the executive director of Nyumbani, says Gold created a comfortable environment for teens to learn and ask questions about sex and HIV. Sara says Gold taught the teens to protect themselves.
“I had never learned about a condom before because in school, we don ‘t learn about sex, ” Sara says. “We just learn parts of the body. ”
This has been the staging ground for Gold ‘s one-woman revolution.
Armed with truth
Gold is both straightforward and nurturing. She uses a banana to teach teens how to use a condom. She tells them they can ‘t get HIV from kissing — a myth taught by many schools and clinics across Kenya in hopes of discouraging kissing and, by extension, sex.
“My goal was that whatever sexual decisions they make, they make based on the truth — not on misinformation or myth or rumor, ” Gold says.
HIV was an almost certain death sentence in Kenya until the U.S. government helped make antiretroviral drugs available and affordable in 2005. Now those infected can live long, fairly normal lives with the disease. But the stigma remains severe, so severe most people hide their status from family and friends.
That makes it harder to get people to take actions to prevent HIV — another challenge that Gold tackles head-on.
“HIV is a bad virus, but having it doesn ‘t make you a bad person, ” Gold tells the teens. “But now because we have medicines, it means you can still live a long healthy life and you can get married, and you can have sex, and you can have babies and not pass on the virus. ”
On a Saturday morning last month, Gold took her lessons to adolescents at Nyumbani ‘s outreach clinic in Kibera, a slum in the middle of Nairobi that ‘s home to more than 1 million people.
Most homes here have sheet metal walls and ceilings, dirt floors and no electricity or running water. Trash is everywhere: pounded into the dirt, lying next to vegetable stands, piling up near the railroad tracks and burning into the air, leaving behind an unforgettable odor.
One girl in the class becomes Gold ‘s eager assistant, sharing her vast knowledge of HIV.
Margaret, now 13, was born to an HIV-positive mother and became infected, though her twin brother tested negative for the virus. Margaret ‘s HIV status hasn ‘t dampened her dreams. She ‘s a bookworm, the first in class to raise her hand and hopes to someday be a university dean.
Information in demand
When Gold first imagined her African journey, she had teens like Margaret in mind. She was working at the time for UW Adolescent Medicine and Pediatric Infectious Disease Clinic, and her Fulbright plan was to target teaching exclusively to HIV-positive adolescents.
But once in Africa, word spread and she found herself in high demand to fill a void of sex and HIV education throughout Kenya. She soon was taking her curriculum to schools, slums and coffee houses, tweaking the message for different audiences — HIV-negative teens, parents and teachers.
“The more people heard about it, the more they wanted it, ” Gold says. “Parents wanted me to teach them how to talk to their kids, and teachers wanted me to teach them how to talk to their students. It ‘s become this huge thing. ”
At one point, Gold ran out of copies of her curriculum and dropped her materials off in a nearby photocopy shop to get some duplicates made. When she returned to the store to pick up the copies, three middle-aged women who worked in the shop told her they had read her material and had a lot of questions. They asked Gold to return a few days later so they could invite their friends to a class.
So on a sunny afternoon in October, 10 Kenyan women piled into the closet-sized copy shop asking Gold questions about HIV transmission, prevention and treatment. They wanted to be able to talk to their own children about the virus and the importance of safe sex.
On the homefront
Back in Madison, Gold ‘s family believes her work is important, but the distance has been difficult to manage over the last year. While her husband, Tim, was supportive, her three children thought she was choosing Africa over them.
“We all respected that she needed to do this and live out this dream of hers and gave her these 10 months to do this. But as a selfish daughter, I was like, isn ‘t that enough? ” says Allison Gold, 26. “We were damned if we do and damned if we don ‘t. We didn ‘t want to be the ones that made her miserable in Madison next year. But when your mom is your best friend, it ‘s hard to not talk to her every day. ”
Even so, she understands firsthand her mother ‘s decision to return. Allison Gold, who lived abroad in Honduras working with vulnerable women and abandoned children, has made a career out of her passion for helping developing countries. She now works at The International Center for Research on Women, a non-governmental organization in Washington, D.C.. that focuses on empowering women to achieve social and economic change.
“When you ‘re abroad making a difference, it ‘s compelling and addicting, and it ‘s so hard to not need it for the rest of your life, ” Allison Gold says.
Susan Gold says deciding to return to Kenya next year was the hardest decision she ‘s ever made, but she knew she ‘d never get another chance.
“So where does wife and mother stop and me start? There has to be a way to do both, ” she says.
Hope for the future
Next month, Gold will be back in Kenya, preaching her truth to whoever will listen, passing out hugs to those children she hopes to help. But she knows it will take more than a sex-ed program to change sexual politics and traditions that are centuries old.
In Kenya, sexual politics are still very much under the control of men — leaving women and children little say in prevention and protection. And while 65 percent of Kenyan girls finish primary school, only 35 percent finish secondary school, leaving women economically dependent on men, Gold says.
What has to change, she says, is for children to have access to education and, as a result, an economically viable future.
“People need a sense of hope and a sense of future, and you don ‘t get that on less than $1 a day, ” she says. “These kids don ‘t have the connection of What I do today is going to affect tomorrow ‘ because so many kids in Africa don ‘t know if they ‘ll have a tomorrow. ”
For the next year, Gold will keep in touch with her family by e-mail and phone. She ‘ll get photos of her grandson, Jack, over the Internet, trying to keep up with his growth. She hopes her continued work abroad will help get her sex-ed program into the core of Kenya ‘s educational curriculum in both elementary and high school.
“I know I ‘m not the answer to ending the AIDS pandemic by any means. This is one big problem and what I ‘m doing is only helping one tiny piece of it, ” Gold says. “But I ‘d rather be the person that stood up than the person that sat down. “