Battling HIV, She Gives Voice to the Feminine Face of AIDS

For Ann Copeland, it started with an air of routine: the notice that a certified letter was waiting for her, the trip to the post office to pick it up.

The letter was from the Red Cross, and it explained in blunt terms that a routine screening of her latest blood donation showed she was infected with the virus that causes AIDS.

She sat numbed and alone behind the steering wheel of her Honda Accord that morning in December, 1987--eight days before her 40th birthday--and wondered how soon she would die.

In an era when AIDS was seen as a gay man’s disease, Copeland, a middle-class, heterosexual woman, had never known another woman with the virus. She struggled to understand the paradox.

“I thought some of the most crazy things. . . . What’s wrong with me . . . that I’ve got a disease that only men are getting?”

Looking for answers, she went searching for other women like herself, only to discover a paucity of services for women with HIV or AIDS. As she gradually found counterparts across Los Angeles, she began trying to build a support network to spare others the aching isolation she had felt.

Copeland, 45, a Hermosa Beach resident, helped found Women at Risk, a foundation run by HIV-positive women that operates support groups in Hermosa Beach, Santa Monica and San Luis Obispo. Although AIDS is growing at a more rapid pace among women than among men, Copeland said women lack many of the services available to infected men. Copeland, who was herself infected through heterosexual sex before she was married, said many women underestimate their risk of infection.

Her work has propelled her into doctors’ offices at the side of ailing women too weak or timid to confront the medical system alone. It keeps her on the telephone hours each day as she juggles counseling, fund raising and media inquiries. It sent her to Amsterdam last summer for the eighth International Conference on AIDS; she came back despairing at the small number of scientific studies dealing with women.

Her goal is to teach women to deal with the many pitfalls--medical, psychological and social--that lie ahead.

Burned into her brain is the memory of telling her dermatologist about her diagnosis, and then watching as he backed away from her, slowly, deliberately, into a corner of the room. She knows that scenario, in varying forms, will occur again.

Two years ago, she chose to start speaking out about AIDS and women in newspapers, on television and at conferences. In making her diagnosis public, she commenced a battle against the deep-seated belief that AIDS strikes only those on society’s fringes--and that suburban middle-class women are immune.

For many, Copeland has given the AIDS virus a voice, a face. It is not the face most people expect to see.

She is not a gay man, a prostitute, an intravenous drug user--stereotypical victims of the virus--but a woman you might see strolling with her husband along the oceanfront Strand on a warm evening.

She is poised and attractive, with short reddish-brown hair, blue eyes and high cheekbones. She and her husband, Patrick, live in a comfortable home on a narrow Hermosa Beach street verdant with blooming bushes. A blue strip of the Pacific Ocean can be seen from the kitchen window. In the living room hangs a poster of a Diego Rivera painting of a young girl with her arms around a bundle of lilies.

There is no visible sign of illness here. But one desk drawer still contains the surgical gloves she bought soon after her diagnosis, fearful she would cut herself with a kitchen knife and her husband would need gloves to treat her.

She tries to soothe similar fears as newly diagnosed women call her, terrified of the disease. She has watched women struggle with family turmoil or with guilt so deep that they shy away from joining a support group.

“It’s kind of like the attitude (women) have about rape--that syndrome that, ‘Somehow, I’m responsible for this,’ ” she said.

One woman arrived nervously in Copeland’s living room soon after learning she was HIV positive.

“I was so relieved to see her. She looked so normal, “ the woman recalled.

Another woman panicked after being diagnosed last summer, worrying that every ache and pain was related to the virus. She described how Copeland assumed a mother-like role, calling daily to inquire: “Hey, babe, you OK?”

“Once you have the disease,” Copeland said, “You are brothers and sisters. It’s like a whole new race.”

In December, Copeland left her job as administrative director of a Santa Monica-based health foundation to devote more time to AIDS-related work. Until she can find office space for Women at Risk, she is temporarily stationed at her dining-room table.

Her energy seems limitless. She has not developed full-blown AIDS, which she credits in part to early diagnosis and treatment, and she urges all women to get tested--even those who don’t see themselves at risk.

Copeland always thought of herself as a lucky person. Her health was good, her life relatively free of tragedy. She grew up in Culver City as the third child of six, an outspoken girl with a gregarious personality.

She had dated Patrick for many years, but their relationship foundered six years ago, and she began dating a man she met through an adult-school class. They saw each other for a few months in early 1987 and then drifted apart. She and Patrick, a 46-year-old telecommunications salesman, were back together by May of that year.

That spring, she suffered a strange phenomenon in which the gums pulled back from her teeth, exposing the bone. No dentist could pinpoint the source of the infection, which finally went away. She suspects now it was linked to the virus.

A regular blood donor, Copeland gave blood in early 1987 and again that fall. The second donation tested positive, prompting the certified letter from the Red Cross. (The Red Cross has since changed its policy and tries to contact infected donors by telephone.)

Reeling from the shock, she and Patrick were both tested. He was negative; she was positive, again.

Slowly, Copeland began sorting through the past and focused on the man she had dated that past spring. She called to tell him of her diagnosis and to urge him to get tested. When his test came back positive, she concluded he must have infected her. She confronted him, angrily questioning: “‘How could you do this to me? You’ve destroyed my life!” She got few answers.

Copeland later gleaned enough information from friends to conclude the man was bisexual. She thinks he must have had full-blown AIDS at the time they were dating.

In the summer of 1988, she learned he was dead.

In the months following her diagnosis, Copeland said she felt as if she was in a fog.

“I just had the energy to get up in the morning, and that was it. For months. Just put one foot in front of the other, and put my clothes on, and go to work, and try to figure out: What’s going on in my life? What do I do? How do I behave? What can I do, what can’t I do? Can I kiss Patrick? Can I sit in the same room? Can I touch people? Do I sterilize my glasses? All the things that everyone goes through, all those weird, scary things. . . . “

She and Patrick were married in a judge’s chambers in downtown Los Angeles less than four months after the diagnosis. It was a tearful, bittersweet ceremony, just the judge, the couple and four guests.

The virus recast what had been a tumultuous, on-and-off courtship between two strong-willed people.

Patrick is matter-of-fact about why the two got married. “If you care about somebody, what do you do? Do you say, ‘Oh, well, you’ve got a disease, and I love you-- but?’ Maybe other people do. I don’t. I don’t know how people could walk away from another human being, especially someone they care about.”

He fully expects to be with Copeland for years to come, Patrick said. “You see, I haven’t given up. And I won’t.”

Copeland winces at the thought of leaving him alone when she dies; she hopes he will remarry.

Both of them acknowledge the virus can be intrusive, with the telephone ringing regularly with AIDS-related business. The only way to escape is to leave town--and even then, Copeland must take along her medication. So they go out to dinner together on Wednesday nights. They take long walks on weekends through the Hermosa Beach streets. They enjoy playing golf. They go to concerts. She likes jazz; he favors reggae.

They have an active sex life, using condoms. They keep the surgical gloves stuffed in a few drawers, although Patrick has never used them for anything but painting.

“Ratings week” comes around every three months, when Copeland goes to UCLA Medical Center to have her blood drawn and measured for the level of CD4 cells, or “T cells,” a gauge of the strength of her immune system.

Her most recent test showed her with about half the number of CD4 cells of a healthy adult.

Copeland started on AZT nearly five years ago and later added a second anti-viral drug. Her infectious disease specialist, Dr. Robert E. Winters of Santa Monica, said Copeland probably benefited from early AZT treatment as well as what he describes as her positive attitude.

One morning last fall, she was close to tears after hearing that a close friend, the first HIV-positive woman she met after being diagnosed, had entered a new and more serious stage of AIDS.

“She’s like my little sister . . . I’m scared, for all of us,” she said.

But then she described how, the night before, she had gotten encouraging news from a television producer and writer who wanted to make a financial donation to Women at Risk. She laughed wryly at the roller coaster quality of her life.

“This soap opera . . .” she said.

By her own estimate, she has five years left of “good-quality time.” Occasionally she wonders if she should be devoting it to this endless battle of AIDS work.

“It’s too big. Sometimes I just want to walk away from it and go someplace and live and be in the closet,” she said.

“Why do I have to continue to try to change it? Let somebody else do it. I get so tired sometimes, I want to pass the baton to somebody else and say, ‘OK, you do it.’ ”

But her voice quickens as she talks about the future of Women at Risk: starting a support group for spouses and partners, perhaps organizing a conference solely for HIV-positive women, developing a buddy system so that ailing women do not need to go to the doctor alone.

People who know Copeland say she is not apt to surrender easily.

“I guess she decided she was not going to be a victim,” said her sister, Kate Casper. “She loves a good fight.”

* COPING WITH AIDS: The story of women with AIDS, told through a support group operated by Ann Copeland’s organization Women at Risk, is the subject of Column One on the front page of today’s Times.