STATUS: Awaiting Funding
FORMAT: Print and eBook; audiobook is a stretch goal
Opportunity
Funding supports: Development, production and publication of book
Goal: $7,500
The manuscript is substantially complete but requires editorial support, production, and strategic distribution. Supporting this project means funding Hanna’s continued care and creative work during her remaining time, and ensuring her voice reaches those who need it most. This is a time-sensitive opportunity to honor the whole person, add an essential voice to literature about disability and mortality, and demonstrate what becomes possible when we support artists through their entire creative process—especially when that process unfolds under extraordinary constraints.
Description
The ALS Essays is a collection of 44 personal essays chronicling Hanna du Plessis’s journey from the first symptoms of ALS through advanced stages of terminal illness. Written with unflinching honesty and lyrical precision, these essays refuse sanitized narratives of inspiration, offering instead the interior experience of dying told by someone fully alive to both devastation and beauty. As a South African immigrant, visual artist, and social change facilitator, Hanna brings a distinctive voice to territory few have mapped with such literary care—writing about losing speech, the terror and grace of dependence, community care, and what she calls “stubborn joy.”
Impact
Few works center the dying person’s own experience, and fewer still do so with literary artistry. The ALS Essays fills this gap for multiple communities: people facing terminal illness, families and caregivers, disability justice advocates, and literary readers. The themes reach beyond ALS to examine universal questions: How do we live with loss? What does community care require? What makes life worth living when everything is taken away? This book will matter urgently to those touched by ALS, and broadly to anyone grappling with mortality and what it means to be fully human in the face of the unbearable.