When Barbara Cleaver's son was suffering from AIDS three years ago, she wished she knew another woman in the same situation--confronting a frightening and unfamiliar disease and agonizing over it as it progressively took the life of her child.
"When my son was sick, I wanted another mother to confide in," said Cleaver, a Torrance resident who was working as a hairdresser in a Palos Verdes Peninsula salon.
She recalled her fears that she might lose her clientele if anyone knew her son--who lived in San Francisco--had AIDS. "I was going to work, but I was stretched, trying to be perky and up," she said.
A few miles away in Rancho Palos Verdes, Mary Jane Edwards faced the same sense of isolation.
Edwards, the wife of an emergency physician at Daniel Freeman Memorial Hospital in Inglewood, said her son, who was a theatrical lighting and stage director, was in and out of the hospital and denied to himself that he had AIDS almost to the end of his life.
"I was sort of in limbo," said Edwards. And after her son died in her home nearly a month after his last hospitalization, she said, "I had an overwhelming feeling that I had to tell my story to someone. I was hurting and I didn't want this to spill over into my husband's or my life."
But the two women did not meet until many months after their sons had died, when Cleaver called AIDS Project Los Angeles (APLA), which provides AIDS education and services to people with the disease. Pleading "for another mother to talk to," she was given Edwards' phone number. And because they met, AIDS mothers no longer have to go it alone.
Last spring, the two were instrumental in organizing Mothers of AIDS Patients Los Angeles (MAP). The loosely structured group is patterned after one started in San Diego by Barbara Peabody, who last year told her son's AIDS story in a book entitled "The Screaming Room," a grim story laced with courage and hope for survival despite ever-worsening odds.
An early and very active member of MAP who lives in Valencia but asked not to be identified, said that when her son has AIDS, a mother becomes accustomed to going back and forth to hospitals, trying to find a doctor who can help, trying to find drugs that can help.
"We thought that with something like MAP, maybe parents would not have to struggle through finding out," she said. "We know which doctors are working with AIDS, what drugs are in and what drugs are out. We can give people some answers."
Cecily Kahn, supervising social worker at Daniel Freeman Hospital who has referred several women to MAP, said the group is able to help mothers "through the most painful of all losses," the death of a child.
"Only another mother will understand exactly the kind of thing a mother is going through. They give help no one else can offer," she said.,
AIDS, she said, has "dimensions of sadness and tragedy different from other kinds of illnesses." Sometimes the AIDS diagnosis is the first inkling families have that their sons are homosexual or intravenous drug users, the two highest-risk groups for AIDS. And then, she said, because patients "tend to come back on a chronic basis . . . (families) have to watch their deterioration, which is a very painful thing to be a part of."
Sally Jue, APLA mental health program manager who helped the mothers organize MAP, said it is vital for "family members to know they're not the only families going through this" because without support for themselves, they cannot effectively help their child who is fighting for his life.
(AIDS, or Acquired Immune Deficiency Syndrome, which is caused by a virus, depresses the immune system and leaves the body vulnerable to numerous infections and cancers that it normally fights off. According to the county Department of Health Services, there have been 2,559 cases in the county and 1,560 deaths since the first AIDS diagnosis in 1981. Nationally, according to the federal Centers for Disease Control, there have been 29,435 cases with a 57% death rate.)
The heart of MAP is self-help and support for women caught up in the agonies of AIDS or trying to get over the pain of their child's death.
"Women can say what they want, and it's confidential," said the Valencia woman. "Sometimes people only want to come a couple of times and say what they need to say. Sometimes they come back for emotional support. If they don't want to talk, they don't have to."
BettyClare Moffatt , a MAP member who last year published a book about living with AIDS based on her son's illness, said that when you are an AIDS mother, "you take care of your child, and you also are faced with 'How am I going to work, take care of my husband, and go through my own inner feelings.' "