Mothers of Sorrow : Brutal Lessons of AIDS Must Be Known by All, Say Victims’ Loyal Kin

Seven women are seated in a tight circle, eyes forward, arms folded on their laps. They wear name tags, but they need no introduction. There are no strangers here, no secrets.

Seven very typical women with families and mortgages and fears and hopes. There is a sales executive from Irvine, a concert musician from Orange, a Buena Park communications worker, homemakers from Mission Viejo and Tustin, a secretary from Tustin and a retiree from Laguna Niguel.

They are ordinary people brought together by a common nightmare, seven lives inextricably bound by one inescapable and unforgivingly cruel fact: Their children are dying of acquired immune deficiency syndrome.

Irene Rios opened the thick photo album, its pages splashed with pictures of smiling young men marching under a wide red banner, and began the roll call of the dead and dying.

“Here’s Larry, who was really sweet. He’s gone,” she said. “This is Chase. He’s gone too. Over here is Greg. He’s tested positive. I just spoke to him. Let’s see . . . Jerry’s gone. This is Glenn, and he’s gone too. Here’s Leonard. He’s tested positive. His lover died of AIDS. And Doug, I believe that he’s gone.”

In another picture, six young men in matching red T-shirts march with arms linked in the 1980 Christopher Street West gay rights parade in Los Angeles. Rios knew them all. Just two of the six are alive. The rest have died of AIDS.

“It’s amazing how many people it has killed,” she said. “It just seems to be everywhere. It’s so devastating. How many more will die?”

Rios is a small woman with deep, dark Latin eyes who speaks of AIDS with the passion of a missionary. She wants everyone to know what it is doing to a whole generation of young men and how it is tearing apart so many families. She wants everyone to feel its pain, to share in the agony of the dying.

She also wants you to know that Paul, her eldest son, died of AIDS on Dec. 1, 1987, and that his lover fell victim to the virus 6 months earlier. And she wants you to know that she spent months caring for both young men when the virus rendered them helpless, that she fed them and changed their diapers and cleaned their sheets.

Experts would say Rios is an example of someone who successfully came to grips with the homosexuality of a son and with AIDS, and they might even note how therapeutic it is that she remains active in Mothers of AIDS Patients (MAP), an Orange County support group, long after her son’s death.

To Irene Rios, it is simply a matter of keeping a promise.

“I told Paul that I would do everything to make his story known,” she said in her Mission Viejo home. “I see so many people reject their children because they are gay. It’s important for parents to rally round their children now because later it will be too late.

“I want to tell all the mothers that it is OK to hug and kiss their children. I want everyone to know that this thing is happening all over, on their block. I think people don’t deal with the issue of AIDS until it hits their home.”

Rios’ own awakening to homosexuality came 12 years ago, after Paul had dropped out of a seminary and enrolled at Cal State L.A. It came one afternoon without warning, when Paul confided that he was reluctant to bring home his new friends because they were “different.” They were gay.

“I knew absolutely nothing about homosexuality,” she said.

After the initial shock, Rios set out to learn everything she could about it, spending 2 days holed up in her room reading and researching. Then she called her son and told him that she was ready to meet his friends.

“For me it was really very simple,” Rios said. “We looked for answers, questioned a lot and kept our minds open. I loved my son. We thought Raulie (Paul’s nickname) just couldn’t be wrong.”

Her acceptance was swift, but Paul’s father was not so tolerant. Divorced from Paul’s mother, he rejected his son’s life style. There was little contact between the two until the day of Paul’s death.

Supported by Paul’s younger brother, Kenneth, Rios quickly became involved in gay rights issues, traveling to Washington to march in demonstrations and to Sacramento to lobby for laws prohibiting discrimination against homosexuals. She became active in the Los Angeles-based group, Parents and Friends of Lesbians and Gays.

The beginning of the end came in 1983 when Paul, then living with his lover in San Diego, noticed several lumps on the back of his neck. Both men tested positive for the human immunodeficiency virus.

Once again, Rios was confronted with something about which she knew little. She collected books and research papers and consulted the experts. What she learned terrified her: Her son almost certainly would develop AIDS.

Kenneth recalled the conflicting emotions that overcame him. “We were all very, very concerned,” he said. “I didn’t know if I could hug my brother, or even breathe the same air. I didn’t know if I would get it.”

Kenneth and his mother would eventually learn what the families of all AIDS patients come to understand: that it is perfectly safe to care for an AIDS victim with proper precautions and that in many cases it is the AIDS patient who has the most to fear being around healthy caretakers.

“I never permitted anyone in the house with a cough or a cold because I was afraid Paul would pick up the germs,” Rios said. “What you learn is that we are much more of a threat to them because of their weak immune systems than they are to you.

“I used to be a dental assistant, and I would wear gloves anyway because I am very clean. Anytime you’re going to be dealing with urine or blood you should wear rubber gloves. That is par of the course. But the idea that you could get AIDS from caring for your son is ridiculous.

“The fear robs these people of love and dignity, and nobody should be denied that.”

By summer, 1985, Paul’s lover became very ill. He died a year later.

Paul began to deteriorate almost immediately after his lover’s death. In January, 1987, Paul received a diagnosis of AIDS and was in an out of hospitals for tests and blood transfusions.

In July, Paul moved into his mother’s home. He would spend the final 5 months of his life there.

On the morning of Dec. 1, Irene Rios walked into her son’s room and found him “looking so very tired.”

“I said I’d rub his feet,” she said. “He used to like that. It was then that I noticed his feet had turned purple. I said, ‘ Mijo (a Spanish elision for my son), I need your attention.’ I told him that whenever he was ready to go it was all right with me. I said, ‘Don’t hold on for me. I’ll take good care of myself.’ ”

Paul Damien Rios, 32, died 10 minutes later.

In the months since his death, Irene Rios has had trouble letting him go. Even his ashes, which he asked to be scattered at sea, remain on top of his chest of drawers in his room.

“The day will come (for the scattering), but right now I find it extremely difficult,” she said. “The ashes are physical evidence that he did exist, that he was here, that it wasn’t all a dream.

“The thing I want to tell other people is to spend time with their sons while they are still there. Make sure that he knows you love him. It’s OK to hug him and kiss him. Don’t have any regrets.”

If Rios seems at ease talking about AIDS and the death of her son, the case of Virginia and her son, Manuel, may be more typical of the difficulty many families face in dealing with the virus.

Even now, months after Manuel died at 36 so thin that it seemed the syringes struck bone every time they entered his body, Virginia is reluctant to go public for fear of exposing her other six children to possible ridicule.

She too wants you to know that it is OK to hug and kiss and care for someone suffering from AIDS, but she is not yet ready to face an often-insensitive public.

A resident of Santa Ana, Virginia was so hesitant to talk that she declined to have her last name used. She said much of her reluctance stems from how her Latino neighbors view homosexuality.

“You know, in the Hispanic culture we look on this in a different way than the gringos,” she said. “When I grew up in the barrio, there was only one person who was gay, and everyone would steer clear of him. The poor guy never had any friends.”

Up until the time Manuel was diagnosed as having AIDS in October, 1987, he had never talked with anyone in the family about his homosexuality. And even when he came down with the illness and wasted away to 100 pounds, the family still talked around it.

“He never admitted that he had AIDS, although he knew it,” Virginia said. “He’d ask me to rub his feet, and then he’d say something about his arthritis. It wasn’t arthritis, and he knew it.”

As Manuel deteriorated, neighbors knew only that Virginia’s son was suffering from double pneumonia and was in and out of hospitals.

“I have never been the type of person who has been afraid of the reaction of other people, but I don’t know how open my other children want me to be,” she said. “For a long time I didn’t tell anybody. It was just me, the nurses, my husband and my kids. You can’t get any feedback from people who don’t understand AIDS.

“There is so much ignorance out there. Even when I started going to the (Mothers of AIDS Patients) group, I was hesitant at first. I asked first if they were affiliated with the Health Department. I didn’t know if they were going to post some kind of quarantine notice on my door.”

Like Irene Rios, Virginia was forced to educate herself about the physical progression of the disease and eventually overcame unfounded fears of contracting the virus.

“As a mother, you think about these things, but you can’t worry about it,” she said. “It’s like a young child who cuts himself--you just take care of it. You don’t think about it. When Manuel had an open wound, I took care of it. You just do it. It’s your child. You can’t stop loving him because he is gay.

“Now that he is gone, I have my good days and my bad days. When I cry, I don’t like to think about his bad days. I think about him as a little boy, playing with his brothers. And sometimes, I expect him to walk in the front door.”

Were it not for Irene Briggs, women such as Irene Rios and Virginia may never have met. Briggs, a licensed marriage, family and child counselor and partner in Bayshore Counseling of Tustin, took a seminar on mental health issues and AIDS 2 years ago and wondered about all the parents who were losing children to the disease.

“It dawned on me that there really needed to be a group for mothers, a support group,” she said. “We are dealing with the fact that these parents are losing their children to a disease that society shuns. In some cases they can’t even tell their friends.”

Judging from the number of AIDS cases in the county, Briggs said, the need clearly existed.

The Orange County Health Department reported that as of Sept. 30, there were 832 AIDS cases in the county, all but 31 of them men and most of them white men. Since 1983, 490 people in the county had died of AIDS.

Briggs started with a core of five or six women who met each Wednesday to talk about the loved ones they had lost. Eventually, the women meeting in Briggs’ Tustin office affiliated themselves with Mothers of AIDS Patients, a group that already had branches in Los Angeles and San Diego.

For many people, Briggs said, the most difficult hurdle is coming to grips with the fact that their child may be gay and has contracted a disease that is so feared by society. Then there is the misinformation, the bigotry--and even the hatred.

“How do you think we feel when we meet people who say AIDS is a curse from God?” one mother asked. “How do you think a mother feels when you see some politician playing to people’s fears with this disease? Can you imagine?”

Briggs said that even joining a support group such as MAP can be an intimidating, cautious first step.

But the possible reaction of others is what silences those who might otherwise speak out. Four of the seven women interviewed for this story asked that their identities be concealed if their cases were used.

“The social stigma attached to AIDS,” Briggs said, “is so horrible because so many people don’t know they are touched by it. They don’t realize it can happen to someone they love.”

And for those it does touch?

“A lot of people are just immobilized by it,” she said. “It is so different from any other terminal illness. Their child is dying from something they can’t even talk about.”

Briggs said some people choose to deal with the disease by allowing neighbors to believe that the victim died of a disorder, such as brain cancer, that attacked a victim whose defenses were destroyed by the AIDS virus.

“We don’t push it because with most of the mothers, it will come with their own recovery process. Eventually, in order to completely recover and to feel OK, it is important to be honest with those around you.”

Beyond that, Briggs said some people have yet to reconcile themselves with their children being gay.

“We have had mothers who just found out that their sons were gay at the same time they found out they had AIDS,” Briggs said. “That is the most difficult. There is a lot of self-blame, wondering what they did to cause this.”

Even for women such as Irene Rios, who had long since accepted their son’s life style, there is the awful knowledge that their child is going to die and that there is nothing they can do to prevent it.

“Parents feel absolutely helpless,” Briggs said. “At least with cancer there is hope for a cure. Here, the moms feel like they are looking at a death sentence for their child. And it is death out of order. We are all trained to bury our parents, not our children.”

It was last Mother’s Day when Velma Camaron noticed the small, pinkish spot on the nose of her son, Jay, and suggested that he have it checked. It was no secret that Jay is gay, so for longer than she wanted to remember Camaron had feared that AIDS might be in her son’s future.

“I saw him again in August, and the pink spot had become purple,” she said. “My alarm bells were sounding. The flags were going up. I told him he had to see a doctor.”

Jay, 25, was diagnosed as having AIDS shortly afterward. He continues to live and work in educational theater in Los Angeles, but is undergoing chemotherapy and may soon begin taking the experimental drug azidothymidine (AZT).

His mother, long divorced, drew on her training as a former medical social worker to deal with her son’s illness. She is comfortable discussing it and in fact makes a point of bringing up the subject with strangers.

“Every chance I get, I try to educate people,” said Camaron, a concert harpist who lives in Orange. “People have to be educated about this disease. They can’t live in fear.

“AIDS has dimensions to it that don’t exist with other serious medical conditions. Society is so fearful that it responds to this in ways that are totally inappropriate. There is a kind of isolation that is different and even greater than with other conditions. And there is the economic devastation because of insurance being canceled and the inability to work.”

For his part, Jay agreed to be interviewed but asked that his picture not be published, not because he was ashamed or embarrassed but because of the potential problems AIDS could cause at the private schools where he works.

“It is not necessarily to protect me but to protect my students,” he said. “It is still a questionable area of reaction. I am afraid of the reaction of some parents and maybe some of the students.”

Having his mother’s support, he said, “makes me feel very special. I don’t know how I would keep going without it. Going through any kind of illness alone would be extremely difficult, especially with this disease, where there are so many moral things tied in with it.

“The other thing that makes me feel good is that she feels very much involved, and although there is not a lot she can do to cure me, she knows by being there she is doing whatever she can, and in turn that makes me feel very good also.”

Camaron said she was drawn to MAP’s county chapter “because I still have a lot of anger to deal with. Just talking about it helps to dissipate some of that anger. There is the whole grief process. Even if they are still alive, the grieving process starts now, while they are dying.

“If we were limited to just a few words about AIDS and the impact on society, it would be fear in huge capital letters. I want people to know that this just doesn’t happen to ‘bad’ people. It happens to real people. People who may be young and have a lot to give.

“I want everyone to know that just because we are mothers of AIDS patients and most of us are mothers of gay men, that does not mean we endorse all aspects of the gay life style. There are things that I wish were different, but the fact is they are not.”

Chris Carmen left Orange County almost 10 years ago to start a new life in Houston, yet he has never felt as close to his mother as he does now.

Fran Carmen of Irvine is president of the local MAP chapter and is active in AIDS educational programs.

Chris, a Houston bartender, was diagnosed as having ARC (AIDS-related complex) but has not developed illnesses associated with AIDS.

“I just can’t believe all that Mom has done already,” said Chris, 27. “I am just very, very impressed. Not only is it really necessary, but I think that she has grown a lot through this. She has found some sort of happiness for herself. I try to volunteer as much as I can, but I think she does more than I do.”

But Fran Carmen was not always so supportive. For years and despite therapy, she said she rejected her son’s homosexuality; for 3 years, mother and son did not speak.

Seated in her Irvine condominium, Carmen recalled her first reaction on hearing that her son had ARC.

“Your first reaction is utter, sheer horror,” she said. “I can’t think of another disease this bad. And then I thought, ‘Oh God, I can’t tell anyone!’ I was scared to death I would be ostracized. But finally, you reach a point where you say that you’re simply not going to let them do this to your child.”

Once she did go public, telling friends that not only is Chris gay but he has ARC, Carmen said her friends were understanding.

“I am a big risk-taker, and I have been fortunate,” she said. “I have never had a single person turn away from me. They are full of questions, but they don’t turn away.”

Still, “people in general are capable of such crude, stupid remarks. Some people will actually back away from you when you tell them your son has AIDS, like they’re going to get it.”

MAP, she said, is “a safe place where we can all come and cry and be mad. We all have to have a safe place. There are so many mothers out there who think they are the only one going through this.”

Although others choose to deal with the disease differently, Carmen said her active involvement after so many years of homophobia was “a gift to my son.”

“I want to do this for him,” she said. “Maybe I can make a difference, help a few people. If I can do that for my son, then it will be worth it.”