"You Don't Have to Whisper": Memories from the early days of AIDS

Listening Is an Act of Love

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We'll let them take it from here:

Around twenty-five years ago, scientists Luc Montagnier and Robert Gallo both claimed to discover the virus that causes AIDS—eventually called HIV. And while the history of AIDS in America is filled with famous stories, including Ryan White's, Pedro Zamora's, and Magic Johnson's,

the lives of the little-known AIDS victims—those whose stories do not involve money, fame or power—are quieter.

They are depicted in quilt squares and in home movies, and they are carried in the hearts of those who loved them.

Mary Caplan remembers the particular silence of the early days of the epidemic. Her brother, Tom, discovered that he was HIV positive after having cared for and lost his partner to AIDS in a hospital; he was wary of meeting the same fate. Mary, a nurse, vowed not to let him die in a hospital and took control of his care. It didn't take long for his disease to progress, and soon the end days were upon them.

I brought him home and [my] children were there. We all took care of him.  I promised him I wouldn't leave the room, so they would bring me up sandwiches.  I had to call my mother.  I had to tell her he was gay, that he had AIDS, and he was dying all at once. I sat with Tom and I said, "You know, whenever you want to go, it's okay.  I'll take care of Mom and I'll take care of everything."  And then he didn't go and then I said, "Tom, I don't want you to think I'm rushing you, so you don't have to go."

I can't sing, and everyone knows I can't sing, and it was a big joke in the family.  But I found myself, like I did with my children, singing lullabies.  And I sang "Tura, Lura, Lura" to him one time and I was so off key and when I finished I kissed his forehead and I said, "I'm sorry.  I know that wasn't very good."  And then I went into the bathroom.  And when I came back he wasn't breathing. He died the moment I left. Grief is you get up the next day and you see the sun, and you say, "Will I ever again think the sun is beautiful?" And all the normal parts of grieving. But the other parts that were so hard was I had this very educated woman come up to me and say, "Well, don't you think maybe God is telling us something by letting homosexuals die by this disease?" I wanted to slap her. I wanted to physically harm her.  And I just said, "No, I don't think so." One day I went to a card shop and there was a gay young man who worked there. I was buying a sympathy card—another sympathy card—for one of Tom's friends.  And this young man said something, and I said, "Well, I take care of my brother's friend. My brother died of AIDS." I said it in a whisper.  He said, "You don't have to whisper to me." And he came around the counter and hugged me.  And I didn't know him, but I loved him.

Like this piece? Be sure to check out Tuesday's touching post about kindness in the Great Depression, here. And if you'd like more stories from StoryCorps, pick up a copy of Listening Is an Act of Love today. To hear additional clips, visit the StoryCorps website or tune in to NPR's Morning Edition on Fridays.