Blackbirdan online journal of literature and the artsSpring 2017  Vol. 16 No. 1
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A Knowledge of Crisis

For me, inspiration for writing comes from many sources. Sometimes a piece runs along a theme I find myself exploring, carrying from one piece to another with subtle variations in meaning, setting, and tone. Sometimes a piece is an organic thing, growing from the small seed of a wondering—two strangers seen in juxtaposition, an overheard snippet of conversation or conflict, a fact of history or science tantalizing in what it might mean for humanity. And sometimes it is the refrain I hear when I think of someone known to me, or someone known only in part, someone I imagine in a future or situation of my own making. Such was the case with the story “She Negative.”

I have worked in HIV-associated dementia research for ten years. One of the recurrent research participants was a woman who was one of the most beautiful people I’ve ever been privileged to know. Despite her difficult past—one that would damn her in the eyes of many—she was joyful and positive, steeped in her faith, her community, and her roles as a mother. But my writerly, critical eye also saw her as many outsiders might have seen her, taking her at face value. They would see her colorful appearance as flamboyant, her nonstop testimonials as tedious, and her simple, open friendliness as too forward for comfort. This imagined, superficial perspective became a character: the woman’s toddler—often brought in to research appointments—transformed into a young woman in the throes of her own crisis of identity and connection.

The story took over seven years to write; at times I thought I would never finish it. Early drafts had been skewered by feedback that made me wrestle with questions of appropriation and consent. These were further complicated by how my inspiration was a woman blessed with a beautiful spirit, but also struggling with dementia; the shallow depth of my knowledge of her world only allowed a one-dimensional portrait. That all changed during one research visit when the woman arrived in crisis. A three-hour visit became six, and my role became confessor and shoulder to cry on. Her trust in me, and the depth of sorrow she shared, brought me catharsis and understanding that I hope is reflected in the story. It also confirmed for me the importance of care in medical research: any proceeds from this story’s publication will be donated to further HIV research.  

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