When the Subject Is AIDS, No One Knows What to Say Print E-mail

Hammershoi(San Diego Union-Tribune July 1, 1993)

I was startled to read recently that only 11 percent of Americans personally know someone who has been diagnosed with HIV, who has AIDS or who has died of AIDS-related causes.

Such personal contact is a blessing for victims and their friends.

However, as AIDS grows into new populations, people who have little practice with the uncivil ways AIDS strikes seldom know how to respond. This past year, Chris, a student in my college writing class, struggled with AIDS until he had to withdraw from school.

Before he left, Chris talked to the class about his experience.

He said that five years ago, during his first sexual encounter at 18, an older "married" man lied to him that this was his first time too with a male lover and, therefore, they were safe.

Chris believed him, and they had unprotected sex, from which Chris acquired HIV. Invited recently to speak to another class, Chris grabbed their attention with some bitter warnings.

First, he lifted up his shirt and showed them the holes in his chest for medication tubes.

Next, he flung off his hat to reveal a newly shaved head. Then, telling his story again, he got cynical about infatuation -- "But he said he loved me" -- and the class laughed uneasily.

He paused, smirked and held up two fingers, then ripped open a condom package with his teeth and unfurled the latex over his fingers, saying, "The condom only works over the head of an erect penis.

Do you understand?" The class was stunned.

Chris was bemused.

He seemed to say, "What do you expect after this grief?" The students looked to me; certainly I'd know how to react. "Keep going, Chris, we're with you," I said. He looked at me quizzically: "I'm going . . . yeah, I'm going fast," he said. Chris continued to call, asking to visit my other classes, to save more lives.

I hemmed and hawed; I wasn't sure whether the students were served by his visits.

Sometimes I invited him to a class; sometimes I didn't call back. Last month when Chris was hospitalized, he left me a cryptic message.

"Oh boy, I'm going to the hospital for only the 11th time this year.

Please, kind sir, bring me flowers.

Bring me magazines.

And bring linguine, yeah, bring me platefuls of linguine."

He exaggerated a Verdi melody and hung up. His mad words reminded me of people in the Middle Ages who lost their sense to the plague. Another story.

Driving to Prescott, Ariz., in May, my companion, Suzanna, and I stopped at a rest area, where we met an older couple who had moved there three years ago.

They loved Prescott and wanted to tell us how much over coffee. In their living room, Evelyn -- whose eyes were puffy from tears and what appeared to be too much smiling -- said they were returning from Palm Springs, where their son is very ill.

We talked then about the commonplace: houses, retirement, starting over.

Coming from cold Ohio, they treasured the sunny Southwest.

They made friends easily, particularly in their new church. But then Evelyn began a tirade against the church board, of which she had become a member.

At a recent meeting, the group began vilifying a national churchwoman who had admitted she was a lesbian and who wanted to continue serving as a minister. Evelyn said the board agreed to send a letter to church headquarters stating that this woman should be dismissed and the church should never allow such deviants to hold power.

Imagine if such sexual orientation were known about members of the Prescott church!

Evelyn said she had tried to defend the woman, but she had been outvoted and ignored.

That's when I figured her son had AIDS. Later I heard from Suzanna that Evelyn had cornered her in the kitchen and whispered that her husband had ordered her to tell no one their son was gay and dying of AIDS; he feared the stigma from their new friends would ruin them. Yet Evelyn was dying to tell.

She begged us to stay longer, to return another time and visit as long as we liked.

At the door she rolled her hands over my arm as if it were the raised rail of her son's bed.

She didn't want to let go.

Yes, her husband said, Evelyn often picked up strangers.

In one hour, we knew more about this couple than their new neighbors in Prescott would ever know. As a society, we assume that living with HIV/AIDS is too much to bear, so the discussion is full of either noisy victimization or abject silence.

Our first responses are awkward, self-protective. The psychological burden the disease dumps on everyone makes us normally loquacious Americans speechless. However, despite the stigma, despite the embarrassment, the most crucial factor in living well with the disease is the openness with which victims and their families can express their grief, as messy as it often gets. We need to encourage such openness, to learn the language of compassion, because 89 percent of the country probably has no idea how to talk to someone with AIDS.