Many Fear Rejection : AIDS Victim Gets Support of Family

When Jeff Mullican’s struggle with AIDS began 16 months ago, he wrote a painful letter to his father. Relations between father and son had never been easy or close and, at that point, the elder Mullican, a seemingly remote man who has difficulty showing his emotions, was the only member of the family who did not know his son was homosexual.

“I said I was sorry I’d never told him, but I was afraid of his rejection,” Mullican remembered recently. “I told him he had contributed to my ability to stand up for what I believe in and follow a course different from most.”

Mullican said that after his father received his letter last year he told him simply: “I got your note. Thank you.”

But Mullican’s sister Jeannie was there when the letter came.

“Dad read it,” she said recently, “and he cried.”

Fear of Rejection

With this episode, Mullican initiated the sometimes agonizing process shared by many who have AIDS: reaching out to his family to say: “I need you.” Subconsciously, perhaps, Mullican was also expressing one of the strongest fears that haunts AIDS patients--that his family and others who had loved him might turn away.

For those who suffer from this disease, with its unique social, moral and political ramifications, such fears are often well-founded. When parents learn that their children have AIDS, they face anguish enough in the specter of an often horrible and almost invariably fatal illness. But most of those afflicted are homosexual men or intravenous drug abusers, and their families must also face the issue of homosexuality or illegal drug use--sometimes for the first time.

Most AIDS patients “feel the need to make one last searching out for acceptance,” said Jaak Hamilton, a Los Angeles therapist who specializes in treating such patients and their families. “They don’t always get it. But they feel the need to try, one last time.”

Those who cannot bring themselves to make the attempt are often “already estranged from their families because of their homosexuality and won’t tell them they are ill,” said Paula Van Ness, who as former executive director of AIDS Project/Los Angeles has worked with many AIDS patients and their families. “They don’t want to use AIDS in a way that would force them to be closer, or they just don’t want to risk further rejection.”

“There is a continuum of responses from families, from those who absolutely cut off that son or daughter to just the opposite, to where they entirely change their lives to support that child,” she said.

“There are some heart-wrenching stories of children reaching out to parents who aren’t able to handle the diagnosis and the life-style implication--and having to deal with a ‘significant other’ who they didn’t understand was anything more than a roommate before,” she said.

With Mullican’s family, there was probably never a significant chance of total rejection. The Mullicans, a large family from the Washington area which had already lost one of six children to kidney disease, immediately pulled together to support their youngest.

Nevertheless, the disease has compelled Mullican and his parents into painful--and still not entirely resolved--confrontations with things they had long avoided.

‘He’s My Son’

“I’ve never been happy about his homosexuality because of the lonely life it has meant for him,” said his mother, a handsome, silver-haired woman of 73 who has known for more than a decade that her son is homosexual. “But I’m not going to turn him out. He’s my son, and I’ve loved him dearly since the day he was born.”

Mullican’s physician, Dr. Robert T. (Chip) Schooley, an AIDS specialist at Massachusetts General Hospital, believes that loving, supportive families like Mullican’s can help patients cope with the deadly disease.

“The way in which they deal with complications that occur is very much influenced by what is available in the way of support from other humans,” Schooley said. “People are much more apt to throw in the towel and give up if they feel they have no one to live for.”

Schooley takes great care to assure families of his patients that there is no danger of transmission through non-sexual, typical family contact. “You can try to reassure them about infection with the virus and tell them support is very important, but you really can’t tell them how to behave,” he said.

Frequent Travel

Mullican lives in Boston. But, since last January, when he was forced out of his job in a negotiated settlement with the trade association in which he was an executive, he frequently travels south to visit his family. Although he describes his family as “not the huggy, kissy” type--and he himself occasionally seems uneasy with physical affection--his family appears to have become more demonstrative since he was taken ill.

“I hug him all the time,” his mother said. Although he sometimes may behave as if it makes him uncomfortable, she said: “I know he likes it.”

Thus far, Mullican’s disease has not incapacitated him, but he takes comfort from knowing that, if it does, he will not have to face his predicament alone.

“It’s tremendously reassuring, knowing that they’re there and I can count on them, and that they will take care of me if I can’t take care of myself,” he said. “I also know they will help me financially, if it comes to that, which takes a big load off me.”

The grim toll of AIDS cases in this country has already climbed to nearly 40,000, with more than 22,000 deaths. AIDS, or acquired immune deficiency syndrome, is caused by a virus that ravages the immune system, leaving the individual vulnerable to otherwise rare infections and cancers. It is commonly transmitted through anal and vaginal sexual intercourse and the sharing of unsterilized hypodermic needles.

Mullican, who turned 33 in May, was diagnosed as having AIDS in April, 1986, after he developed a severe case of pneumocystis carinii pneumonia, a respiratory infection caused by a parasite. Pneumocystis , nonexistent in individuals whose immune systems are healthy, is a recurring and extremely serious condition for those who have AIDS. AIDS patients with frequent episodes of pneumocystis typically die within 40 weeks of the first bout.

Mullican, however, has survived more than 65 weeks, in all likelihood as the result of his taking AZT, or azidothymidine, the first drug licensed in this country to treat AIDS. Even before AZT was approved for marketing, Schooley offered Mullican the opportunity to participate in a clinical trial of the then-experimental drug. Mullican decided to take the gamble--and it apparently has paid off.

Although he recently suffered a fourth bout of pneumocystis , all his episodes except for the first have been so mild that he has remained out of the hospital. The side effects of medication from the last bout, however, left him 15 pounds lighter and feeling extremely weak. “I can’t stand for more than two or three minutes at a time,” he said.

And his spirits, frayed by an ongoing tug-of-war between hope and desperation, have continued to deteriorate. The loss of his job struck hard at his self-esteem, and his physical weakness has drained some of his psychological energy.

His family--especially his mother, with whom he is very close--has urged him to fight back.

“I know there’s no cure for AIDS, not yet, but I don’t feel he should give up,” said his mother, who asked that her name not be used. “I’m very much an optimist--I feel you should live while you’re living, make the most of the time you’ve got. I think it’s very bad to be living from doctor appointment to doctor appointment.

“I understand the reality. I know the disease is terminal. But you’ve got to keep on going, hoping there’s a light at the end of the tunnel.”

She paused. “At the time he was diagnosed, the prognosis was six months,” she said. “I remember his sister Jeannie was very adamant about getting everyone here for Christmas because we were afraid he wouldn’t be here for his birthday.

“Well, here he is. He’s had his birthday and he’s still going strong.”

Mullican first became ill as the family was preparing to celebrate his parents’ 50th wedding anniversary. The five surviving children--Mullican has one brother and three sisters--had planned a big party at their parents’ home, and Mullican was scheduled to fly from Boston to attend.

Instead, he was in the hospital, although it would be weeks before anyone knew what was wrong with him.

Several weeks after the party, before the AIDS diagnosis had been made, two of his sisters--fearing that he might have AIDS--decided to fly to Boston to be with him.

“I told Jo-Ann that we’d better get to Boston,” his sister Jeannie recalled. “If it’s good news, we’ll be there to celebrate. If it’s bad news, we’ll pick him up.”

Jeannie called Mullican’s hospital room shortly after he had received the news he had most dreaded.

“Do you need us?” she asked.

“Yes,” he replied.

Jeannie knew then that the diagnosis was bad.

“We’re coming,” she said.

Before she and her sister departed for Boston, Jeannie said, their father questioned the trip. “I can’t understand why you two girls have to spend all that money to run to Boston just because he has pneumonia,” Jeannie recalled him saying. “Lots of people get pneumonia. He’ll get better.”

The sisters realized then that their father had to be told that this was not just ordinary pneumonia. And they knew as well that the news would convey a second, shocking message: that his son was homosexual.

“Dad, it’s not just pneumonia,” Jo-Ann said. “It’s AIDS.”

Jeannie recalled one of his initial reactions. “I wonder if your mother knows,” he said.

After Jeannie and her sister departed for Boston, she could not stop wondering what her father would say to her mother.

“We later learned he never said a word,” she said. “The name Jeff was not mentioned all weekend long.

“He just couldn’t deal with it,” said Jeannie, who asked that her last name not be used. “But this is Dad. He’s not insensitive. He just has a hard time showing emotion.”

Mullican’s relationship with his father has always been a complicated one, often difficult for Mullican to understand. Now the two are gaining a new intimacy--a phenomenon that those who have worked with AIDS patients and their families say is common.

“He and I have gotten closer since this whole thing happened,” Mullican said. “He has a great deal of love and feeling, even though he has difficulty expressing it. It comes out in subtle ways.”

Mullican’s third sister, Judy, agrees that their father “seems to have accepted it.”

“I’ve never talked with him a whole lot about it,” she said. “He keeps his feelings pretty much to himself.”

“But he’s opened up a great deal more since this happened,” Mullican said. “We’ve always been argumentative, but now that’s gone by the wayside. I’m a little bit more patient and so is he. I feel a real conscious effort on his part to make this easier for me.”

Mullican’s mother remembered that, 12 years ago, when her son confided in her that he was homosexual, “he had been petrified to tell us--he worried about it so much. We didn’t tell his father--we thought he might have a nervous breakdown. But Jeff and his father have developed a much better relationship now than they had in his younger days.”

It was not easy at first for Mullican’s parents and siblings to accept his homosexuality.

“My mother went through the standard blaming herself,” Mullican said. “She was not pleased. I can’t say she has accepted it now, but she is reconciled to it.”

His mother acknowledges that she is still uncomfortable about her son’s sexual orientation.

“I don’t like the aspects of homosexuality--the terminology they use,” she said. “I cringe when I hear one man calling another man a lover. But, if that’s his chosen life style, that’s his chosen life style.”

She paused. “We raised all six the same--the same environment, same mammy and pappy. Why one would and the others wouldn’t is difficult to understand.”

Mullican’s sister Judy said of her mother: “It was hard for her to accept the fact that he was gay. I’m sorry that years ago she didn’t join a group of parents of gays--she just wouldn’t do it.”

Jeannie recalled that she learned of her brother’s homosexuality in December, 1978. “It was Christmastime,” she said, “and he was home in one of his moods.

“I said: ‘Jeff, you need to find a nice girl.’ He looked at me. ‘That’s a little impossible. Jeannie, I’m gay,’ he said. ‘You are NOT,’ I said, and closed the door. But, when I leaned up against the door, I knew he wasn’t kidding.”

Judy found out when Jeff, who was seven years younger than the next youngest sibling, was in college.

“He was always so much younger than we were,” she said. “He was just growing up when we were off getting married. We would see him once a year if we were lucky. We didn’t know him very well at all. I was already away from home when I learned. I was concerned that it would be a hard life for him.”

Members of the family are dealing with his disease in different ways. Jeannie, who at first had a hard time talking about death, has agreed to serve as the executrix of her brother’s estate and has forced herself to have several frank talks with her brother.

“I didn’t want to face it, but, when it came to Jeff, I made myself deal with it,” she said. “I remember one time when I was up there and he wasn’t feeling well, I went out to get him some things to make him bread pudding. I was so nervous about the conversation that I forgot the recipe. I tripled it--it took three hours.”

Most members of the Catholic family are deeply religious, and they say that their faith is giving them the strength to cope. “I’m a firm believer in the afterlife,” his mother said. “I’m not afraid to die. I figure, if there is a life hereafter, what a great time it’s going to be--because of all the interesting people.”

Mullican, however, is not a practicing Catholic and has insisted--to his family’s regret--that a non-religious service be performed at his funeral.

“He’s very strong in his convictions against the church,” Jeannie said. “He does not want a Christian burial. He wants to be cremated. He wants to have a service back at mother’s, and I told him I would lead it. He wants it to be the kind of service where everyone says a memory of him--fond or otherwise.”

Still, his lack of religious conviction disturbs her. “I told Jeff: ‘Pray to St. Jude, patron of the impossible. Pray to him--what have you got to lose?’ I told him I pray for him all the time. He said: ‘If that makes you feel better and helps you deal with it, go ahead.’ ”

Some family members refuse to discuss his illness outside the home. Others talk about it only with caution.

“My parents’ generation has a hard time dealing with it,” Jeannie said. “It’s like terminal cancer was years ago. It’s only recently that I’ve been able to deal with it.”

Whatever the family’s difficulties with the disease or Mullican’s sexual orientation, Mullican’s mother says she cannot understand how any family could turn its back on a son or daughter with AIDS.

“I feel sorry for them,” she said recently. “I feel very sorry for them. By not accepting their loved one--and by not providing the love and support he needs--they are punishing themselves. It’s hard enough on the patient, but they are the ones who will suffer for the rest of their lives.”

Mullican’s older brother, Jerry, died in 1974 when he was 30. He had been suffering from severe kidney disease for two years. His mother had donated a kidney for a transplant, but his body had rejected it. Mullican was preparing to donate one of his kidneys, but his brother died before the operation could take place.

For the Mullicans, it is particularly painful to face the death of another child.

“Each child has always been a one and only,” his mother said. “It devastates me to lose any one of them. It’s something a parent never gets over--losing a child.”

Yet the aftermath of Jerry’s death has brought the family a measure of hope for their youngest son. The Mullicans have followed the great strides made in the treatment of kidney disease since Jerry’s death and hope that the same acceleration occurs with AIDS--in time to save Jeff.

“If we had been able to keep Jerry alive 10 more years, he might have survived,” his mother said. “That is my hope with Jeff. I just have a gut feeling he’s going to outlive the prognosis.

“I feel five years down the road they’ll come up with a solution. I hope AZT will keep him going until they find a permanent cure. It’s got to happen. But will it happen in Jeff’s time? I hope so. He’s a great kid to have around.”