Irish Voice: AIDS and the Irish
AIDS AND THE IRISH
The Long Flight Home
Part 2 of our Series. See Pages 12 & 13
Robert and his family are traveling to Ireland this month. But this will likely be Robert's last trip, as he is losing his battle with AIDS. EMER MULLINS tells his story, and also interviews a leading Irish doctor who is an expert on AIDS.
STANLEY Rygor and his wife, Kathleen, from Co. Offaly, have been known to kick up their heels at ceilis and meetings of Comhaltas Ceolteoiri Eireann, but they have also danced on the streets with ILGO (Irish Lesbian and Gay Organization), marched in the Gay Pride Parade, and attended ACT UP (AIDS Coalition to Unleash Power) meetings.
Their son, Robert, is currently battling against AIDS, and his parents' unstinting support has earned the respect of all his friends.
"We support Robert 100 percent because we love him very much," said Stanley. "I remember marching in the St. Patrick's Day Parade once with the mayor, and people were screaming at us and were booing at the gays. People looked at me like I was a madman. There's plenty of homophobia out there," he said sadly.
Stanley plays the button accordion, and remembers playing the Siege of Ennis in Sheridan Square while ILGO members pranced around in delight.
"It was wild," said Brendan Fay, a friend of Robert's. "We had great craic that day. They are wonderful people and deserve to be praised."
From marching in the civil rights movement in the '60s, Stanley Rygor has progressed to marching for gay rights.
Kathleen and Stanley want to live a normal life with their family, yet they cannot share their pain about Robert with many people because they feel they will probably be treated differently. After all, they say, conventional wisdom says they must have done something wrong for this to have happened to their son. Acceptance and love are all they can offer their son now. And a trip to Ireland.
"We've been holding this inside our hearts and inside our family, but now it's coming to the witching hour," said Stanley sadly. "We just want to bring Robert to Ireland."
The Fighting Spirit
KATHLEEN still has family in Co. Offaly, and her mother lives in Caherciveen. She and her husband are full of anticipation about the upcoming trip. Robert, too, says he is "psyched" when he thinks about it.
A nurse was with Robert when I met him, telling him about a new treatment he would start the following week. His apartment was bright and sunny, yet the atmosphere seemed heavy. Robert had just turned 40, and is plainly suffering the effects of AIDS.
But Robert is not going gently - he is using every ounce of strength to combat AIDS and all its insidious ways.
There is something in his eyes that tells you he is angry and determined. Angry that AIDS is not being treated like the epidemic it is, and determined to do all he can to change that while he's still able.
"This interview is coming at a pivotal time for me," he said slowly. "All the people that have been close to me have AIDS now. All my friends have died - I'm no better than them." He looks scared, all the same, scared to be facing his own mortality, with no possible way out.
Robert looks weak, has a racking cough, and tires easily. He has by now begun to take food intravenously, in the hope that it will build up his strength, which means he is currently housebound.
Perhaps the most horrible thing about AIDS is the isolation and discrimination some patients must suffer. In many cases, these people are unwilling or unable to tell their families and friends, and in more cases they tell and are rejected because their families are unable to deal with it.
Robert has to be considered one of the lucky ones - his parents are behind him every step of the way.
"They are too much," he said, with a shake of the head. "They're always there."
The Family's Heartbreak
STANLEY and Kathleen said they did not feel comfortable enough to tell many people about Robert's illness, and the few they decided to confide in were sympathetic.
"I don't know of any support in the Irish community for people in our situation, but I'm really only involved with ceilis and music. I haven't really looked for outside help at all," said Kathleen.
Robert contracted AIDS through unprotected sex. "It was a surprise when I heard but I wasn't shocked," he said. "I didn't expect to hear it, but I felt that my sex life was as reckless as anybody else's during the '70s, so why not me too? My peers, my acquaintances, people my age who led the same lifestyle have AIDS."
Robert's main concern now is not AIDS prevention, but more funding for research and development.
"You've got to be living like an ostrich not to know about the risks these days," he went on. "It's totally the responsibility of the individual to have safe sex, and I think the word is getting out because more heterosexuals are getting sick now. If you don't have the message by now it's because you are either totally close-minded or you just don't want to know and therefore don't care about your own health."
Women and Children Too
ANOTHER man who is also very interested in research and development is Dr. Billy Hall. A native of Co. Down, he is a leading expert in the field of AIDS research, and director of virology at New York's North Shore Hospital, a division of Cornell University.
Dr. Hall will soon take over the new virology department being finished at Rockefeller Hospital. He is on a quest for a cure, traveling worldwide to research what he called "viral anthropology."
"I probably see 700 patients a year," said Dr. Hall. "Most of these are drug users, that's my specialty because they present different symptoms. But it runs the gamut from women and chlidren to gay men." He sees the number of infected women rising.
"It's really depressing to see young people who should be in the prime of their lives," he said. "I think the worst cases are when a woman delivers a child who is HIV positive, and then has to go for testing herself because she never realized she was infected."
Dr. Hall believes that most Irish women who become infected pick up the disease from bisexual men. "I see a lot of that happening, where men will lie to their partners," he said. "I lose a lot of sleep sometimes, and I don't have enough time to do as much as I'd like.
"We don't have enough funding for research, but one drug I'm working on looks promising. At least it works in the test tube. I'm developing it with a Swedish team, and it's being picked up by a Swedish drug company."
Dr. Hall is hopeful that within five or 10 years a vaccine will be available. While that is good news, it's of no help to Robert Rygor and others in his position.
"In terms of the long run, there's no significant developments that will counter the HIV virus. That's in the distant future," Robert said. And he knows that it's already too late for him.
Help From the Community
WHILE there doesn't appear to be any groups working in the Irish community in New York specifically on AIDS education or prevention, many individuals are doing what they can in the course of their work or personal lives. The stance of the Catholic Church, which sees homosexuality as a sin and will only admit celibate gays to Church services, is a bone of contention for many who feel that their religion has betrayed them.
"I believe that the Church is responsible for some of the stigma attached to AIDS," said Robert. "They teach that homosexuality is a sin. A new report suggests that it is genetic, so then how can it be a sin? Gays have always known that this is biological. Were we born sinners? Isn't baptism supposed to cleanse us?"
The New York Catholic Archdiocese is reputed to have the best health care in New York for AIDS patients, with a dedicated and committed staff. And many Church members are compassionate and caring and genuinely want to help.
Tom Dougherty is the administrator of the Spellman Center, an AIDS unit at St. Clare's Hospital run by the Archdiocese. People constantly walk in from the street for testing or treatment, he said.
"Catholic charities send a number of Irish people. I found that they are very nervous about anyone knowing, so we try and get them into some kind of support system," said Dougherty. And with about 2,000 "active patients" a year at St. Clare's, he added, the Irish probably comprise less than two percent.
"It's very important for immigrant communities to make clear that they will support each other when something like this happens. There's such a stigma attached, and right when you need help it's not there. I heard Irish patients say they had to go it alone."
A Dream Trip
MEANWHILE, Robert is really looking forward to the vacation. He was in Ireland once before, when he was 12 years old, but has wanted to return for years.
"I'm going in August and it's been my dream. This new treatment is very traumatic for me, I'm not happy about it. It's mainly psychological because it's going to be good for me. I have Kaposi's Sarcoma now and it's difficult for me to walk because my legs have tightened up. But I can get around fine on my bike and I'm bringing that to Dublin. You know, I'm still the same person."
His parents are also looking forward to the trip. Kathleen has only recently allowed herself to realize how serious things are.
"You try to put it out of your mind and then it hits you," she said. "Robert looked so good until recently, and was so active. He even ran in the school board elections. We campaigned with him until his feet became so bad he couldn't do it anymore."
Body Count: HIV's Rising Toll
New figures show the AIDS virus may soon be the top killer of young U.S. men. The threat to women is growing too.
Figures for causes other than HIV unavailable for 1991
Source: Centers for disease control and prevention
The Epidemic Comes Home
ROBERT'S feet are swollen, a common symptom of AIDS. Kaposi's Sarcoma, which he is suffering from, is a cancerous tumor of blood and lymphatic vessel wall tissues. Usually about six opportunistic infections, such as this one, appear in almost 90 percent of AIDS cases. From infection with HIV to illness can take anywhere from two to eight years, and most people don't notice the symptoms on infection, according to Dr. Hall.
"They are flu-like, joint pains, headaches, maybe a rash. Only about 30 percent of people notice or remember when they became infected," he said. "But after that they carry the virus."
The next phase is the asymptomatic stage, when the person will have no noticeable signs of illness for up to eight years. The next stage is usually manifested in swollen glands. The fourth and last stage is full blown AIDS where the person is at risk for evert opportunistic infection, like weight loss and wasting, AIDS dementia, and pneumonia. AIDS has resisted all attempts at a cure. It is still a death sentence.
"What we are seeing now is the result of those infected in 1984, at the height of the epidemic, coming home to roost," said Dr. Hall. "What I try to do is prolong their lives and improve the quality of their lives. No doctor was trained for this. It's not easy to hand someone a death sentence so I try to get them into a support group as soon as possible. I encourage them to do anything they want to do. One guy took up golf and diving lessons, and hustled the money to do it," he said somewhat gleefully.
Dr. Hall advises patients to do whatever they want to do, because they have nothing to lose.
William A. Haseltine, an AIDS researcher based in Boston, predited recently that by the year 2000 between 40 and 100 million people worldwide will be infected with AIDS, and as many as 1 billion will have HIV. His figures were drawn from studies done by the World Health Organization and Harvard University.
"But nothing will be done," said Robert Rygor bitterly. "The WHO statistics are just that - statistics. It's like in Somalia. No action was taken until children were dying in the streets. AIDS is just perceived as a disease that 'bad' people get."
AIDS activism was a logical choice for Robert Rygor.
"After learning about my diagnosis in January 1990, I became involved with ACT UP," he said. "I've been active in politics all my life; even as a little kid I worked on political campaigns, like for Mayor Lindsey. And my father was involved in the civil rights movement in the '60s so that had an effect on me."
This effect was obvious - Robert became involved in the gay rights movement in 1974, and became the first openly gay man to run for the State Assembly in New York State. He was unsuccessful.
The public could not, and in many cases still cannot, deal with gay people as human beings. But Robert was completely at ease with his own identity, and continued to run for various local political offices. Recently he was elected to a fourth term as ACT UP's workspace manager at their New York. ACT UP is the most vocal coalition dealing with AIDS in New York, and also the most unpopular because of the various controversial ways it has used to draw the public's attention to its cause.
The future for Robert holds no promise. He does not expect any. His quality of life is being eroded slowly but inexorably. But he still looks on the bright side.
"I've still got my apartment, and my parents and friends," he said. His parents intend to be with him every step of the way.