AIDS in the Family


As usually happens at moments like this, the family congregated kin the living room. Louie Nassaney had summoned his two brothers and two sisters to their parents’ house in Van Nuys, Calif. Two and a half years later everyone present at that meeting would remember exactly who was sitting where on that muggy May night. Louie fidgeted in one golden armchair while his father perched in a matching one beside it. In a room that features religious statues in one corner and framed photos of grandchildren in another, Louie’s mother, Alice, sat on the green sectional sofa, as did her four other offspring. Louie’s married sister, Adria, had already guessed what the news was: “Are you going to announce you’re getting engaged?” she asked.

Earlier that day Louie Nassaney had learned from his doctor that he had Acquired Immune Deficiency Syndrome. He told his family he had a lesion on his right leg that was Kaposi’s sarcoma, a cancer that afflicts AIDS patients. He said he had at most two years to live. “I touched the sore on his leg and put my hands on his head,” recalls Alice, who started to sob. “I just stood next to him. He did all the talking. I said nothing. That’s all there was to say—nothing.”

As this week’s NBC movie, An Early Frost, dramatically demonstrates, AIDS releases a roller coaster of revelations and reactions when it affects a family—especially when, as in as many as 50 percent of all AIDS cases among homosexual men, the parents learn in the same sitting that their son is gay and that he is dying. In the gay underground, that so-called double whammy has produced its own perverse joke: What’s the hardest part about having AIDS? Convincing your parents you’re Haitian. For the real-life counterparts of the characters in An Early Frost, the situation lacks the neatness of TV drama. There are now more than 14,000 people with AIDS in this country, most of them homosexual and bisexual men—but for the families involved, there are an incalculable number of responses to the disease. This is the story of one family’s reaction.

At first, Louie’s family didn’t know they were getting the double whammy because he didn’t tell them. The night he revealed his illness, “the word gay was never brought up,” says Nassaney, 30. “I thought I did it very diplomatically.” However, he did admit the disease was sex-related, which made his father suspect his son’s homosexuality. Recalls Lou Nassaney, 59, “I asked him, ‘Who gave you this?’ He said, ‘How do I know? I’ve been with so many of them.’ ”

AIDS was still a mysterious acronym to the layman—”I only knew if you got it you died,” says younger brother Alan, 29. So the family pursued an instant education. Older brother Ed, 34, and wife Lisa, a nurse, sought information. Sister Adria, 33, did research at college medical libraries. “Once early on,” she recalls, “he kissed me on the lips and my mother said, ‘I don’t know if he should do that.’ ” But the more the family—including sister Diane, 36—learned about AIDS, the less they feared for themselves—and the more they feared for Louie.

Despite the initial candor about his condition, Louie kept his family at a distance in the months that followed. “I was going to beat this alone,” he says. “I didn’t need my parents.” When diagnosed in May 1983 (after noticing a purple spot on his leg during a gym workout), he was living in Inglewood, Calif. with best friend Jerry Smith, 34, who also is gay. Although Smith worked as a night manager of a grocery store, he was soon functioning as nurse, cook, confidant and a saint for all seasons. Nassaney first was treated with Interferon, which caused debilitating side effects. His hair fell out. He experienced shakes, night sweats and memory loss. He had occasional hallucinations and no energy. “He was afraid to sleep because he thought he was going to die,” says Smith. “He would crawl into bed with me and I would hold him. I did a lot of holding.”

Smith didn’t understand why the family didn’t provide more visible support. “At one point, I was really pissed off at them,” Jerry Smith says. “I kept telling Louie’s older brother, ‘You guys have got to help out.’ ” But Louie himself was telling them otherwise. “I didn’t want anyone to see me,” he says. On the phone, he concealed reports of his condition, and he timed Interferon shots so that the family wouldn’t witness his reactions. “I rejected some of their efforts,” he says. “I wouldn’t let them drive me to the hospital. I’d say they didn’t have to cook for me.” His parents and siblings saw him about once a week in those days.

The standoff was in part the result of Louie’s having concealed his sexuality for so long. “The gay part was a bigger issue for me than AIDS,” he says. Although he had first had sex with a man when he was 16, “I was really afraid if I came out my family would tell me to get lost.” After Louie dropped out of UCLA in his junior year, father and son worked side by side at a restaurant Nassaney owned near Los Angeles International Airport. To sidetrack his parents about his sexuality, Louie frequently flirted with female customers. “He wouldn’t even cross his legs in front of his father,” says Smith. The camouflage campaign took a toll, according to Louie: “There was a lot of stress in my life. Since I was working with my father, I was afraid I would be fired or probably disowned.”

After his admission, Louie says, “I think my parents were embarrassed.” Lou Nassaney had, after all, allowed his son’s deception to work for years. “Sometimes you suspect,” as he puts it, “but you don’t want to believe.” Finally, the urgency of their son’s situation gave them something more to fear than homosexuality. “We weren’t accepting a life-style,” says Lou. “We were accepting death.”

By October 1983 Smith was out of stamina and Louie nearly out of money. Nassaney considered returning to his parents’ four-bedroom house in Van Nuys, but with great reluctance: Home was not necessarily a safe harbor. To Louie, moving back was like giving up. “If he went home, maybe it meant he was going home to die,” Smith explains. Finally, says Nassaney, “I told myself, ‘Louie, you don’t have a choice. You’re dying.’ ”

By the time Louie moved home, he was deteriorating rapidly. Though there was little weight loss, his muscles atrophied and he ran a fever for months. He was sleeping 24 hours at a time. His father recalls, “I’d come home and say, ‘Is he in bed already?’ Alice would say, ‘He never got up.’ When I looked in on him, I looked to see if the sheet was moving, if there was any breathing.” For Alice, 58, Louie’s immobility made comforting her son impossible. “That was the lowest point,” she says. “We felt helpless.”

Louie thought Christmas 1983 would be his last holiday with his family, and his depression and illness kept him in bed for most of the day. His 2½-year-old nephew, Jaret, carried Louie’s presents to his bedside. Another nephew, Paul, then 9, was living at the house too. In his innocence, he repeatedly asked Louie the question Louie didn’t want to ask himself: “Are you going to die, Uncle Louie?”

Lou and Alice Nassaney have lived in their house for 30 of their 37 years of marriage. Raised as Catholics by their parents, who came to America from Syria, they are conservative creatures of habit, and Louie’s disease did not dislodge them from their longstanding roles: Alice dispensed care for Louie, her husband kept his distance. “Alice showed compassion,” says Lou. “I would show none. I didn’t want to show him compassion. I wanted to show him strength.” Whenever Alice found an article about AIDS that expressed hope, she read it aloud to Louie. She drove him to the hospital for his shots. Together they attended an AIDS seminar. The family never talked to him about a will or funeral arrangements. “Our philosophy was, if we go on with life he will go on,” says Adria.

Such ensemble optimism made for lonely grieving, however. Alice cried only away from her son, at night or in church. Lou wouldn’t let even his wife witness his emotional moments. He stopped riding to work in a carpool to have time alone. “I was doing all my crying in the car,” he says. There, he checked off the months remaining and planned funeral arrangements. “Inside, it was tearing me up,” he says, but so that his son would see only strength, “my talking with him was done in the shortest time possible.”

One day father and son clashed in the kitchen. “He was giving up,” Lou recalls. “He said, ‘You’re not going to die, it’s me.’ I said, ‘I can feel sorry for you, but if you feel sorry for yourself, you’re going the wrong way—down.’ There was no comfort from me.”

Brother Alan’s reaction was the most visible—and the most volatile. The pair had enjoyed the same sports and friends growing up. “We were like twins,” says Louie. At first Alan expressed the strongest outpouring of concern. But as time passed, he turned hostile. “He had a lot of anger at Louie for being gay,” says Adria. “I was torn all these different ways,” says Alan. “Sometimes I asked my brother Ed why men would want to be with men.” One Saturday the feud escalated over which TV show to watch. Louie swung at his brother. Alan pushed him back, and Louie fell to the floor. “It was a stupid, childish incident,” says Alan. But it was an inadvertent turning point for Louie. “Alan challenged me to do something,” he says. “All that time I wasn’t being a fighter. I was a victim of AIDS, no doubt about it.”

The next few months brought a series of changes in Louie’s condition. When his lesion still tested positive after seven months of treatment, Dr. Ronald Mitsuyasu at UCLA took him off Interferon. As alternatives Dr. Mitsuyasu offered chemotherapy or radiation treatment, which Nassaney refused. At a friend’s suggestion, Louie gravitated toward holistic medicine, nutrition therapy and meditation. He envisioned his T cells as little white rabbits, as rabbits have a propensity to multiply indiscriminately. He thought of his lesion as a pencil mark that could be erased, and he literally rubbed it with a pencil eraser frequently. He began treatment with Louise Hay, a Los Angeles holistic counselor with a large practice of AIDS patients. By autumn 1984 he was going back to the gym. On Oct. 17, 1984 Dr. Mitsuyasu told him that the latest biopsy revealed only dead scar tissue. When that call came, Louie Nassaney and his parents did something together for the first time: They cried.

Physicians have no explanation for Nassaney’s good fortune; his case is an anomaly. “From what we can tell, he is in remission,” says Dr. John Medved, Nassaney’s physician of 12 years. “We have no way of knowing why.” Perhaps it is the delayed effects of the Interferon. Perhaps it is because the Kaposi’s sarcoma was caught at an early stage. Perhaps Louie’s regimen of positive thinking had some effect. “Everybody is convinced the day you’re diagnosed, you die,” says Nassaney. “I’m here to say it ain’t so.”

According to doctors, there is much less mystery about the relationship between AIDS patients and their families. “There’s a visible relief when they have the family members coming in,” says Medved. In fact, one of his AIDS patients attempted a drug overdose when the man’s mother back East refused to see her sick son in California. Says Louie: “Without my parents, I would have fought for my life, but it would have been a lot harder.”

Louie’s apparent remission has given his family something that other families in his situation don’t often get: time to accept their son and his sexuality. But even now the Nassaneys’ acceptance doesn’t always alleviate their ambivalence. Alice still pines for grandchildren, and Adria admits, “Deep down in my heart, I wish my brother wasn’t gay.” As Alan observes, “People don’t know he’s gay unless he tells them.” For his part, Louie’s father says that if his son had come out to his parents while in good health, “I probably would have murdered him. I certainly would have tried to change him.” Even now, Lou holds out “the margin of possibility” that his son could change his sexual orientation. “I’m a positive thinker,” he says.

Now that Louie’s condition has improved, he has gradually resumed a more normal, more active social life. Last Easter he fell in love with a man in Palm Springs. “It was my first relationship since I had AIDS,” he says, and he reveled in it. There was no fear about AIDS transmission, says Louie, since the couple adhered to the principles of safe sex. For the three months the affair lasted, “we were together 95 percent of the time. We burned the relationship out,” says Louie. Louie’s resumption of a gay social life demanded a new level of tolerance from his family. “When he fell in love last spring,” recalls Alice, “I accepted the fact that it was another boy. He asked me if he could bring his new friend home. What was I going to do? I said yes.”

Louie’s life now consists of ad hoc work as an AIDS counselor and the rock concerts and occasional parties that constitute his social outings. But there are setbacks and specters. A month ago a friend from one AIDS therapy group died. The funeral both moved and unsettled Nassaney. After the service, he went to his car, turned the radio up and blasted rock ‘n’ roll. He remembers thinking, “The fear of death has come back. AIDS equals death.”

The family remains alert to problematic situations. When Adria’s son, Jaret, died at 4 of a brain tumor in September, Lou asked Adria to tell her brother he didn’t have to come to the funeral. She refused. Brother and sister stood beside each other at the service for Jaret. “I could never have given up my son in peace if it weren’t for my brother,” she says. “Louie taught me that life goes on.”

Ever the evangelist these days, Louie sometimes recounts his story to unsuspecting listeners in the unlikeliest of places. Last September, for instance, he entered a local Superman contest, a sort of beauty pageant for gay men. When the 50 contestants were reduced to 15 semifinalists, Louie was among them. During the semifinal round, each contender was asked a question. “What is your fondest memory?” the judges asked Louie. Without hesitation, he gave an answer that stopped the show. “The day I was diagnosed with AIDS,” he said, “and got my family together to tell them.”

The crisis over AIDS in the Nassaney family has worked unexpected changes in all its members. “My parents have really grown a lot,” says Adria. “They’re accepting their children for what they are.” Although Lou still tells friends only that his son has Kaposi’s sarcoma, not AIDS, he recently hung up in protective anger when a co-worker phoned to announce, “I didn’t know your son was gay.” Louie now shares more of his life-style than his parents sometimes want to know. Just last summer Louie was omitted from an article on AIDS because his mother wouldn’t cooperate. As she now sees the situation, it’s the individual, not the issue, that matters. “I don’t care how people feel about AIDS, good, bad or indifferent,” she says. “I don’t know how any other mother feels, whether they want to accept it or not. This is my son and I love him and I’m going to help him. I only know about my son.”

For Alice, the fight against the disease that’s been destroying her son and disrupting her household does not make the Nassaneys American heroes. To her they are just like everybody else. They are a family.

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