Chronic Illness

When I was 19, I was struck by an illness that left me bedbound, exhausted, and confused. I withdrew from college, moved in with my grandparents, and spent years navigating an invisible, difficult-to-diagnose condition. Eventually it was given a name: Chronic Fatigue Syndrome. It took more than a decade to reclaim my health.

Recently, my long-time collaborator Celia Parry – a dancer – approached me about creating a new body of work drawn from her experience with chronic illness. She lives with multiple rare and often debilitating conditions, yet continues to pursue dance as a form of artistic agency.  As we compared our parallel histories, this project took shape.

Nearly half of all Americans – approximately 133 million people – live with at least one chronic illness, and that number continues to grow. Yet people with chronic illness are frequently shunned, undiagnosed, disbelieved, or excluded – from healthcare systems, workplaces, families, and social communities.

For both of us, making art from these experiences is a redemptive process. Through photography and dance (see our choreographed dance video here), we embody the physical and psychological realities of chronic illness: negotiating with a body that resists you, appearing healthy while in pain, enduring panic and depression, confronting medical systems that reduce you to symptoms rather than seeing you as whole.

Through art, movement, and storytelling, we make the invisible visible – validating this often-dismissed reality as an essential part of what it means to be human.

(Please note: these are actual photographs that we created; they are not AI generated.)

This project is designed to be an installation that includes photographs of various sizes and groupings (including some printed on translucent fabric hung from the ceiling), texts, and an interactive component.  A projected dance film – choreographed and performed by Celia – will serve as the emotional and narrative core.

Visitors will also encounter written reflections on our personal stories and be invited to share their own. These collected writings will hang alongside the work, creating a communal tapestry of lived experience. 

This installation is meant to educate, move, and connect – to give voice and form to stories too often hidden in silence.

These early mockups (below) show one possible configuration; each installation will be uniquely adapted to its exhibition space, incorporating photographs, text, hanging fabric, video, and interactive elements in response to the architecture and experience of the space.