When HIV strikes, family care needed the most

SAN ANTONIO -- When a loved one has cancer, family members usually draw near and help. When the disease is HIV/AIDS, some might keep their distance and judge.

Even with greater understanding about HIV transmission and effective new treatments for AIDS, this life-altering, life-threatening disease is fraught with so much stigma and fear that family support may not be there when it's most needed. Shame, secrecy and isolation can take hold. Ella Hicks wouldn't hear of that.

When Hicks found out in 1994 that daughter, Dorothy, was infected with HIV, she was devastated, but she let her 10 other children know in no uncertain terms what was expected.

"I said, 'If anybody has any funny ideas about this, you have to get rid of them now. She's your sister, no matter what.' They all said, 'Momma, we know.'

They all think Dorothy is a piece of gold. They want to do so much for her. Nobody's glad she has this, but the family is behind her 100 percent."

Hicks was a participant in the annual International AIDS Candlelight Memorial, part of an international grassroots effort coordinated by the Global Health Council.

Ceremonies were held in about 4,500 communities in 93 countries, from rural villages in southeast India to large cities in Latin America. The event memorialized men, women and children who have died of AIDS, while showing support for those living with HIV/AIDS and mobilizing community-based responses to the disease.

Dorothy Hicks, who is 42 and single, was infected through heterosexual transmission. The support and love of siblings, aunts, uncles and her son, 25, who lives in Washington state, have made all the difference over the past 11 years.

"You can't go through this alone. There's no way," she says.

"I have all of them behind me, and that's the best feeling in the world. If you didn't have support, you wouldn't care if you lived or died. My family hasn't given up on me, so I can't give up on myself."

Kay Price, a therapist and member of the steering committee of PEERS, a support and advocacy group for women infected or affected in some way by HIV/AIDS, has seen some families grow stronger and closer after diagnosis and others react with fear. Aunts and uncles stopped visiting. Friendships were lost.

"If you know you have people on your side, the pain is not so powerful," Price says. "But we have women who have not told their mothers because they're afraid they or someone in the family would turn their backs on them. It contributes to isolation and depression. And one of the things the research is showing is that depression affects the progression of the disease."

Price is especially concerned that teenagers are getting only limited education about HIV/AIDS in school, while many in the wider community still view the illness judgmentally as confined to drug users and homosexuals. Cultural factors also come into play.

"For me as an Hispanic, I don't feel the community is really aware of the disease," says Rosario Lopez, San Antonio coordinator for the Candlelight Memorial. "There's a stigma, and people don't like to ask for help. I'd really like to educate them about it. You don't have to be afraid."

Lopez, 31, knows firsthand the heavy impact of AIDS on families.

Her husband, Roland, died of AIDS in 1995 at age 32, after just three years of marriage.

"He found out he was infected just before we got married and told me, but I didn't care," she recalls. "I knew what the risks were, but we were so in love. The whole time, we were in and out of the hospital, the last time for 40 days. I don't regret any of it."

She found peace knowing she and members of Roland's family were there for him in his final years. "The hardest thing was making the decision to stop life support at the end, but he told me that's what he wanted me to do. I saw a lot of our friends going through the same thing at the time. It was really, really bad."

Like Lopez, Dorothy, who is unable to work, has found purpose in the work of PEERS. She serves on its executive board, and she shares her personal story and gives educational talks at area schools.

Meanwhile, help from family members runs from daily phone calls and reminders to take her medications to airline tickets for visits to California and Washington, where her siblings live. The compassionate connections are strong medicine.

Still, there are good days and bad days. "I'm sick, but you would never know," she says. "I don't like pity. I don't tell anyone if I don't feel well today. But I don't have to say anything to my mom. She knows when I'm feeling sick."

Hicks says of the disease: "Dorothy doesn't let it be her crutch. But I still get angry at times because she doesn't take care of herself. I tell her to eat her vegetables and fruits and take walks."

More than anything, Hicks' goal in life is to let her daughter know she is loved. "I told her, 'You are blessed. I don't care what you have. You're blessed because you have people who care about you. Forget about the rest of this stuff."'

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(E-mail: mpisano@express-news.net) Editor Notes: (For use by New York Times News Service clients.)

c.2005 San Antonio Express-News