Patient’s quilt puts a face on AIDS

Molly Ball

Tuesday, Nov. 30, 2004 | 9:38 a.m.

Sue's quilt square is divided into quadrants. Pictures of her large family mingle with puffy-painted designs and brightly colored letters that spell out words like "service," "fitness," "family" and "BBQ."

There is also an important date: 1994. That's when Sue was diagnosed with human immunodeficiency virus or HIV, the infection that causes AIDS.

"I've had 11 years to work on my attitude," said Sue, a 49-year-old mother of two who has been married for 21 years. "Now, the things are important to me that should be important in a person's life."

The fabric square is Sue's section of Nevada's Living Quilt, crafted by people living with HIV and AIDS as a gesture of courage and pride in the face of their condition.

The quilt is on display at the County Government Center this week in observance of World AIDS Day on Wednesday.

The Living Quilt was begun by Aid for AIDS of Nevada, or AFAN, as a counterpoint and companion to the AIDS Memorial Quilt, a national effort sponsored by the Atlanta-based Names Project to commemorate people who died of AIDS.

Nevada's sections of the Memorial Quilt are also on display in the Government Center rotunda.

The Living Quilt represents the new reality of AIDS -- that it is no longer a death sentence.

AIDS workers say the new challenge is to keep people aware of the danger and prevalence of the disease now that it can be treated as a chronic condition.

People living with HIV and AIDS wanted a way to express themselves, but "the only place available was the Memorial Quilt," said Jen Roberts, director of programs for AFAN. "It seemed depressing and without hope to make a panel for when you're dead, when you're not going to be dead anytime soon."

While the Memorial Quilt's pieces are rectangular, the Living Quilt is made of squares -- in order to avoid the resemblance to coffins.

The development of drugs to treat HIV and prevent it from developing into AIDS came just in time for Sue, who contracted the disease while working in the medical field and pricking herself with a needle. Sue has been on HIV medication for about eight years.

Going from a verdict of inevitable death to a life-saving regimen of pills was an "overwhelming road," she said, that went from getting her affairs in order and beginning to say goodbye, to facing the future all over again.

"A positive mental attitude and lots of prayer" got her through, she said, along with support from family, church and the HIV/AIDS community.

Now, she said, "I don't see myself dying of this disease." And she has gradually become more comfortable with her own identity as an HIV sufferer.

While she asked that her last name not be used in this article, Sue said every passing year finds her more open about discussing the disease. She hopes eventually to work up the nerve to talk about HIV in front of an audience of strangers as part of AFAN's Project Upfront.

Sue also participated in another display now up at the Government Center, the Faces of Courage: plaster-cast masks of HIV and AIDS victims that play a recorded voice message through a speaker.

The sign below Sue's mask says, "HIV/AIDS does not discriminate! It is not a 'GAY' disease!"

Roberts said AFAN is trying to emphasize the issue of HIV and AIDS among women and girls in order to destroy the stereotypical perception that only men, especially gay white men, are the victims.

World AIDS Day this year has adopted "Have You Heard Me Today" as its theme to call attention to the women and girls living with the disease.

Presently, 1,062 women in Clark County have HIV or AIDS, compared with 6,844 men, according to Cherie Filler-Maietta of the Clark County Health District's AIDS office.

"We're seeing more and more women and teen girls testing positive," Roberts said. "Too many women believe the old myth that it's a gay men's disease."

Sue said this is an attitude she encounters frequently.

"People look at me and say, 'I would have never guessed,' " she said. "I say, 'Of course not, what am I supposed to look like?' I'd like to change that interpretation."

Other AIDS Day observances this week, in addition to the quilt and mask displays, include an art exhibit, part of the monthly First Friday downtown arts tour; a candlelight vigil sponsored by AIDS Interfaith Ministries; and activities at Liberty High School, where the Student Council chose AIDS awareness for its annual social issue project.

The council members "wanted to do something because they think that people are starting to forget about (HIV and AIDS)," Gault said.

To Sue, forgetting is what must be prevented. Forgetting leads to ignorance, and ignorance leads to insensitivity.

"I think it's still not an easy thing," she said. "There's still a lot of prejudice. Some people treat you like a leper -- they don't want to shake your hand."

Over her years of living with HIV, she said, she has realized how important it is to educate others.

"I don't think I should be keeping it a secret anymore," she said.