Families of Choice Devastating illness pulls friends of AIDS patients into close kinship

The kitchen is invitingly bright, a glowing cocoon as the night closes in. They linger at the table after dinner like any other family, drinking coffee, smoking cigarettes, thumbing through magazines, jostling with the dogs underfoot. And, of course, talking.

But rather than aimless patter about school or work or what the dry cleaners lost this time, their talk is mainly about Sam, who is in the living room and dying of AIDS. He, rather than any biological or marital bond, is the reason these three people have become a family -- an untraditional one, for sure, but of a kind increasingly necessitated by the havoc that AIDS has wreaked on many traditional families.


"With AIDS, there is the family of biology, of blood," said Rev. Harry Holfelder, chairman of the AIDS Interfaith Network of Central Maryland, "and there is what some people call the family of choice."

"He's the last part of . . ." Annie says, unable to finish.


". . . Of your family," Hal says gently, squeezing her hand. "I know."

"When I used to get lonely, I would call Sammy," Annie says in a quivering voice.

"Now you can call us," Mary reassures her, even as her own eyes start clouding with tears.

"But it's long distance!" Annie jokes, her tough shell back in place and the crisis apparently over for now.

Hal gets her a tissue anyway.

Annie, Hal and Mary have cared round-the-clock for Sammy (all of their names have been changed because they fear recriminations from neighbors, co-workers and some of Sammy's relatives) in these last months of his life. Together they have shared the sad and terrible transformation of their handsome, 6-foot-5-inch friend into the helpless, diaper-clad shell of a man in the hospital bed that dominates the living room of Hal's row house.

Annie is the sister of Sammy's former lover, who himself died of AIDS three years ago; during the week, she leaves her husband behind in their home in another county to move into Hal's home to care for Sammy. Hal is a longtime friend who let Sammy move from his small Maryland town -- where he was rejected by some of his family and didn't even use the local pharmacy for fear that gossip of his condition would spread -- into his Baltimore home. And Mary is Hal's upstairs tenant; she became Sammy's friend during his frequent visits to see Hal during his healthier days.

"When families shut the door," Mary said, "the friends come in."


While Magic Johnson has received an outpouring of support from family and strangers alike since he announced he was HIV positive earlier this month, others are less fortunate, said Mr. Holfelder. But, he said, he has been surprised and heartened by the unofficial "families" that have sprung up to care for those who are emotionally or geographically alienated from their own relatives.

"Gay folk, lesbians, couples with children," he said of his parish, First and Franklin Presbyterian, "[AIDS] has pulled this congregation together in a way I haven't seen before."

The night before, Annie, Mary and Hal had what they call a family meeting. Sammy, already left blind and unconscious from a brain lesion, had come down with pneumonia: Was this, finally, the time to unhook the lifelines pumping nutrients into his body?

They decided it was.

"I still feel guilty," Annie said.

Hal comes back into the kitchen. He had tried to put an ice bag on Sammy's head to quell his fever, but Sammy knocked it off.


"He's ready," Mary said.

"Toward the end, I wanted him to be at peace and out of pain," said Susan "Tootsie" Duvall, who helped care for a friend, Richard, who died of AIDS in August 1989. "I got to the point where every time I went up the stairs, I thought that was the day I'd find him."

Ms. Duvall had been Richard's neighbor in Bolton Hill -- and was actually a closer friend of his companion, who had died of AIDS earlier.

Richard's companion was a native Baltimorean with a lifetime's worth of family and friends, and after his death, Richard was at something of a loss since he had "only been here three years and didn't know a lot of people," said Terry, a friend who asked that his last name not be used. "And everyone was burnt out -- we have had so many friends die. A lot of their friends who had promised they would help take care of Rich, just couldn't.

"I would go over once a week, take food over, make dinner," Terry said. I thought, he must be tired of me, every Tuesday coming by. That's how Tootsie got involved, and another friend of ours, too. Tootsie's great at making people laugh, they could entertain Rich while I was cooking and cleaning up."

"I, well, I probably would do it again," Hal said.


His slight hesitation is acknowledgment that Sammy's presence has turned his life "upside-down."

"Under normal circumstances, I'm very reclusive. I have my animals, I had certain times when I did things," he says. "This is 180 degrees from that."

Annie and Mary have tried to tread lightly through Hal's "place for everything and everything in its place" kind of household. They could not, however, quit smoking during these stressful times, even though it sends Hal into an air-freshener spraying frenzy.

"Even the pets have had to adjust. They used to get one treat a day, but some people," he says with mock dismay and a pointed look at Annie, "have spoiled them by giving them more."

Even before the AIDS crisis, many gay men already were alienated from their fami

lies and thus closer to their chosen friends and lovers, Terry said. "You become a family nucleus, even when there's no trouble."


AIDS has become the ultimate test of the bonds of family and friendship, say the caregivers. Its terminal nature, in particular, adds an emotional burden to the physical demands of tending to friends or relatives in the end stages of the disease.

"Richard was so apologetic; he didn't want to burden us," Terry said, recalling how his friend even had made his own funeral arrangements -- at the same time that he was burying his mother, who died of brain cancer shortly before him in Wisconsin.

"It's like starting the grieving process before the death even happens," said Lee Smith, a nurse who, with his roommate, took a friend with AIDS into their small Bolton Hill apartment when he became unable to care for himself.

Sammy's family no longer talks about "if" but "when" he will die. Annie will return to her husband, Mary will continue working as a social worker and Hal, well, he already knows he's going to "crash."

"My thing is, we've already agreed, that when it happens, everything has to be taken out of here, that day. Then I'm going to go into seclusion. I don't want phone calls. I want to be left alone."

Mr. Smith and his lover, Ron Cox, both of whom are HIV-negative, took Mr. Smith's friend Joe Smith (no relation) into their apartment from April through mid-October, setting up a makeshift living space for him in what used to be their dining room.


"Joe has become part of the family to us," Mr. Smith said. "And like every family, we've gone through the good points and the bad points of family life. Just because someone's dying, you're all still humans. I needed privacy. We needed privacy as a couple, and that became an issue.

"I'm not sure I'd ever take another person with AIDS into my home," he said, "but then I don't think I'd ever feel about someone else the way I feel about Joe. Joe is a unique person. I can say now I'm glad I did it."

Joe's condition worsened last month, and he is now at Stella Maris hospice.

Sammy died Thursday, about a week after his family took him off the IV.