Public Project
Stubborn Joy: On Death, Dying & Belonging
Summary
“How do we keep walking and finding our way when the road ahead must pass through difficulty? What are our sources of life amidst the forces — systemic, environmental or other — that have made it so that some of us are at risk of dying sooner? This questions feels relevant to where we are globally. As things we once depended on unravel, die or disappear, when we are hurting, how do we keep going?”
Stubborn Joy is the story of Hanna du Plessis; with courage, candor and oft wicked humor, Hanna invites us to be with her in vulnerable, raw and intimate moments as she lives and dies with ALS.
Stubborn Joy is the story of Hanna du Plessis; with courage, candor and oft wicked humor, Hanna invites us to be with her in vulnerable, raw and intimate moments as she lives and dies with ALS.
“How do we keep walking and finding our way when the road ahead must pass through difficulty?
What are our sources of life amidst the forces — systemic, environmental or other — that have made it so
that some of us are at risk of dying sooner? This questions feels relevant to where we are globally.
As things we once depended on unravel, die or disappear, when we are hurting, how do we keep going?”
What are our sources of life amidst the forces — systemic, environmental or other — that have made it so
that some of us are at risk of dying sooner? This questions feels relevant to where we are globally.
As things we once depended on unravel, die or disappear, when we are hurting, how do we keep going?”
In March 2023, Pittsburgh artist, writer, social change facilitator and all-around luminous human, Hanna du Plessis received a terminal ALS diagnosis.
Hanna has bulbar onset ALS, a type of amyotrophic lateral sclerosis that started by affecting her breath and speech and has since rendered her quadriplegic, unable to speak and dependent on 24/7 care.
As her body deteriorates, Hanna has adhered to an ethos of “stubborn joy”, a decision to “lean towards trusting what is” and a commitment to writing.
While Hanna can no longer use her voice or limbs, she writes and communicates using a “Tobii” eye-tracking technology that allows her to type using her gaze. Tobii also enables Hanna to “speak” using recordings of her voice. In November, Hanna published a chapbook entitled Bedsores and Bliss and she has a forthcoming memoir; both were written one letter at a time with her eyes.
As exceptional as she is, Hanna is the first to tell you that this “story” is about more than her; it’s about the “Careforce” community, a self-mobilized group of chosen family who’ve provided a constellation of care as ALS robs her of bodily autonomy.
It’s about how love in action provides an example of what is possible as we “walk each other home.”
Hanna and I first met in 2017 as part of the same TEDx presenting cohort and we reconnected last year when I moved back to Pittsburgh. I did not anticipate—could not have anticipated—all that being with her would teach, challenge, and reward. In the last eight months I’ve laughed and cried, witnessed a collection of moments, inflections, individual and collective change, states of being and the duality of grief and joy.
With courage, candor and oft wicked humor, Hanna invites us to be with her in vulnerable, raw and intimate moments and asks us to consider death and dying, mortality and community, disability and healthcare, belonging and interdependence and how to trust in what we do not understand.
These are among the tough, even taboo, societal and cultural issues we rarely discuss but that speak to shared human experiences, questions and inevitabilities.
Hanna feels herself “fading” — she is not expected to survive the summer — but she reminds us each day that,
“Part of dying is being vividly alive also. I feel stripped of my filters.
Please just be in the moment with me.
There is nothing to fix.”
Please just be in the moment with me.
There is nothing to fix.”
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