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Aids : Fifteen Tales Of Compassion And Fear : One Year Later, Relatives And Friends Reflect On Those Who Died

August 30, 1987|MONA GABLE | Mona Gable is a Los Angeles writer.

"What do you want?" the woman asked. Her voice was alarmed.

She was inside her apartment, speaking from behind the door. And though not a word had been said about her sister, she knew what had prompted the visit.

For the next 10 minutes, the woman moved frantically between the door and a curtained window. "Go to the window," she would say suddenly. Then, "Come to the door." But the roar of traffic made it hard to understand what else she was saying. Finally, after repeated pleas to talk face to face, she opened the door.

She was a small woman whose dark eyes never left my face. She was wearing a blue-checked housedress and slippers and was eight or nine months pregnant.

She assumed the doctor had betrayed her family, and she was distraught.

"The doctors weren't supposed to tell," she said. "How did you find out?"

"From her death certificate."

"But we don't want that in the papers," she said.

"Why?"

"For many reasons."

"What reasons?"

"I'm not going to tell you." She paused. "Because of family and friends. Many of them don't know."

"But more women are getting AIDS, and it would help them to know."

She was silent for a moment.

"It won't help my sister," she said finally. "She's dead."

THESE ARE THE STORIES OF 15 people in Los Angeles who died of AIDS in the fourth week of August one year ago.

People die of AIDS every day; according to the federal Centers for Disease Control, the epidemic has killed more than 23,000 people in the United States. But their lives and deaths remain veiled, a nonexistent tragedy, hidden among statistics. Looking back at a single week, it's no longer possible to regard people as anonymous. They had lives, children, dreams and disappointments. And they did not want to die. Many stories are written about people with acquired immune deficiency syndrome. Most deal with those who willingly talk about the disease; or they deal with the celebrities, the public figures, the people who do good works. The individuals included here--some of whose names have been changed at their families' request--were found by searching through death certificates in the L.A. County Hall of Records. They did not volunteer their stories. They are young and middle-aged, black, Latino and white, and they come from neighborhoods all across Los Angeles.

But these are only some of the known deaths; it is certain there were many more. Because of deliberate masking of the cause of death on death certificates, and a lag between the time deaths occur and are reported, information on the precise number of AIDS casualties per week is almost impossible to come by. Although the county Department of Health Services routinely releases monthly and yearly AIDS statistics, it does not provide weekly figures.

"A weekly report of deaths is meaningless to us because it cannot be gathered with a high degree of accuracy," says Dr. Shirley Fannin, associate deputy director of disease control programs at the department. "These 15 deaths are the tip of the iceberg."

In recent months some politicians have been calling for expanded testing for AIDS. But for some people in this story, testing failed to tell them enough. Some who tested negative had been ill for months, and in one case for nearly three years, before they realized that they had AIDS. One man--the father of two children--tested negative twice. His condition was diagnosed four months before he died.

But according to Dr. Marjorie Bernstein-Singer, a hematologist / oncologist who treats AIDS patients at Los Angeles County-USC Medical Center, "The failure rate of the AIDS test--called ELISA, for enzyme-linked immunosorbent assay--is actually very low. It has been refined and is now much more specific than when it was introduced in 1985. Furthermore, testing is now much more uniform."

Much also has been written about ordinary people's fear of talking about AIDS. But that doesn't begin to prepare you for it. The abruptly ended telephone calls. The doors that are slammed. The addresses that turn out to be fake. What people feel is more than fear; it is terror:

If you print his name, you will ruin my children's lives. We want to keep it closed. We don't want to discuss it with anybody. Because it's not a good feeling. His father would have a fit. He swears his son did not die of AIDS. When his father sent me a copy of the death certificate, AIDS was whited out. Just leave her case alone. Just forget about it.

Still, other friends and relatives feel just as strongly that there is a need to talk openly about AIDS. In doing so they believe that perhaps they can convey a message of comfort and hope to families confronting the disease.

IN HIS GRANDMOTHER'S WORDS,Randy Lee Wagoner had a "hard road." And he coped with that road by running from it.

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