Leaving Silence Behind: How I Overcame Stigma From Racism & AIDS By Telling My Story

By Elena Schwolsky

I shifted nervously in my metal folding chair. The harsh fluorescent lights of the church basement magnified my discomfort. I was attending my first meeting of a bereavement support group. My husband Clarence had died a month earlier. I was a 44- year- old widow.

We were invited to introduce ourselves around the circle. I listened to each in turn—mostly women, mostly in their 60’s, mostly white. “Please say your name, your loved one’s name and what they died of?” What?

“A long battle with cancer,” one woman said. “A sudden heart attack. No warning,” said another. Sympathetic looks were telegraphed around the circle.

What would I say? And how would my intro be received?

I had had some practice answering these questions since Clarence died. Why did people always want to know what he died of? What business was it of theirs?

But I tried. “Clarence had AIDS,” I would begin. Did I imagine the sharp intake of breath, the quick look away, the follow-up question in their eyes that I hoped they wouldn’t ask, but sometimes did?

“Oh God, I’m so sorry. How did he get it?”

I was not surprised. During my 10-year relationship with Clarence I got used to being looked at with questions at best, outright racism at worst. It was the 80’s and we were an interracial couple. I was a white woman married to a black man, a Vietnam vet, a recovering heroin addict, and, for the last two years of our life together—a person with AIDS.

Supermarket cashiers insisted on separating our food orders when we shopped together. In the ER the admitting clerk asked if I was his social worker or nurse. The receptionist in his doctor’s office suggested to a friend we encountered there that she not let us play with her baby. Racism, plus the stigma of AIDS, was the powerful current we swam against every day.

On top of that, I was working as a nurse in a pediatric AIDS clinic—not exactly a topic most people wanted to hear more about at a social gathering. And Clarence wanted to disclose on his own terms. “I don’t want to be a label, a disease, babe,” he told me.

So I stayed quiet. But now he was gone and I was walking through this world on my own. I had to find my own path—speak my own truth in my own voice.

I found my strength in baby steps. I traveled to the revolutionary island of Cuba after a 20-year absence. It was the place where my youthful idealism had been transformed to a lifetime commitment to social justice activism. I told my story at an international nurses conference and was greeted with a standing ovation. I enrolled in a graduate program in community health education, determined to dedicate my time and energy to prevention work.

And I began to write—at first scenes from the lives of the kids and families I worked with, then the hopes and dreams of Cubans living with HIV/AIDS who had entrusted their stories to me, and finally––the twists and turns of my own journey.

Years later, after writing workshops and critiques, digging deeper and weaving the threads of my experience together, revising and editing and revising some more, I turned the joy and pain and humor of those years into a book. I left stigma and silence behind and am ready to share my hard won wisdom with the world.

ELENA SCHWOLSKY, RN, MPH, is a nurse, community health educator, activist, and writer who spent a decade as a pediatric nurse at the height of the AIDS epidemic. She has trained AIDS educators in Cuba and Tanzania and currently teaches community health workers in diverse urban neighborhoods in New York City. Her essays have appeared in ‘The American Journal of Nursing’ and ‘The Veteran’, and her work has been included in the anthologies ‘Storied Dishes: What Our Family Recipes Tell Us About Who We Are and Where We’ve Been’ and ‘Reflections on Nursing: 80 inspiring stories on the art and science of nursing’. Schwolsky is the recipient of a writing award from the Barbara Deming Money for Women Fund and is proud to be recognized as the madrina (godmother) of Proyecto Memorias, the Cuban AIDS Quilt project.

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