1. Schwolsky, Elena MPH, RN


A nurse remembers the cost-to both patients and herself-of keeping silent about AIDS.


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In the spring of 1988, two months after my husband, Clarence, was diagnosed with AIDS, I went to work as a pediatric AIDS nurse at a clinic in New Jersey. Clarence had fought in Vietnam, and now he was on the front lines of this epidemic. I felt a need to be there too. It was a time when treatment options ran out fast. The kids I cared for got very sick and soon died. Activists were marching in the streets with signs proclaiming "Silence = Death," but for many, AIDS was something to be whispered about or not spoken of at all. I became a keeper of secrets, and one of them was my own.

Figure. Illustration... - Click to enlarge in new windowFigure. Illustration by Jennifer Rodgers.

"I don't want everyone to see me as your husband who has AIDS, babe," Clarence said. "I want them to know me first as a person, not a disease." I was puzzled-my never-shy husband could get up in a crowded 12-step meeting and declare, "Hi, I'm Clarence and I'm an addict." Why this reluctance? We argued about it, but in the end agreed we'd tell only close friends and family.


Each day I carried my secret to work, where the families I cared for were also hesitant to mention their child's diagnosis. A combination of shame and fear had driven some halfway across the state to avoid being seen in an AIDS clinic in their hometowns. The stigma was intense, even for children, who were considered "innocent" victims. On the nightly news we saw images of a tearful Ryan White, barred from attending school, and a frightened family in Florida burned out of their home. But everyone had their own worries about public disclosure, their own stories to conceal.


There was a child I'll never forget-Jasmine, one of the sickest on my case-load, a bright eight-year-old with a wise little face framed by frizzy brown hair. She lived with her mother and grandmother, but was often in the hospital. I'd usually find her on a comfortably padded stretcher next to the nurses' station.


Concerned that Jasmine might overhear a careless remark on the ward, the social worker and I tried to persuade her mother to tell her that she had AIDS. But Jasmine's mother refused to even discuss it. Perhaps she couldn't bear the guilt over having transmitted the virus to Jasmine. I longed to move beyond the labels that separated us-nurse, wife, mother, person with AIDS-and share my own story. But I kept my promise to Clarence.


One day, as we made rounds, I found Jasmine at her usual post. Pale and listless, with barely enough energy to create another of the crayon drawings that decorated our cubicles, she called me over. "I want to talk to you about something important," she said, obviously making an effort to talk. I prepared myself. Was she going to ask me the question I couldn't answer? Wasn't I bound to respect her mother's wishes?


I leaned over Jasmine's stretcher to hear. "I am very sick," she whispered, pausing for breath. "I think I have AIDS. But you have to promise. Don't tell my mother. It's a secret... She would be sad if she found out."


A few weeks later, at Jasmine's funeral, I wondered if she and her mother had found a way to speak honestly before she died. And again I wished I could have let her mother know how much I shared in her pain.


Clarence died a year later after a long slide, and I no longer had to keep silent. Only then did I begin to acknowledge my own fears. At the bereavement support group, when it was time to share my own story, I "passed," afraid the cancer widows would judge me. For years afterward, when someone would innocently ask, "How did your husband die?" the answer would stick in my throat. I found myself carefully measuring the questioner: Would they ask how he got it?-AIDS always seems to raise that question. And how would they feel about me if they knew?


It's been more than 15 years since I left my job at the clinic. Times have changed and the stigma has diminished. Meanwhile, the incidence of AIDS is on the rise again, particularly among young women of color. I think of the thousands who will be diagnosed this year, and wonder if they will suffer alone, afraid to speak.


The secret I kept for Clarence still has power over me. Even now, when a new acquaintance asks about my late husband, I hesitate. Then I remember Jasmine and that painful silence we all kept back then. I take a breath, and speak in a clear, strong voice: "My husband died of AIDS."