"I am here now, I trust my wise heart."
artist, writer & social change facilitator Hanna du Plessis on welcoming suffering in the midst of ALS, and her continuing practice to soften into What Is 🌱
This is a Beginner’s Mind interview, a series that explores the intersection of mindfulness and creative practice. Zen master Shunryū Suzuki Roshi said, “In the beginner’s mind, there are many possibilities; in the expert’s mind, there are few.” This series shines a light on the practices that sustain people in their daily lives and open the path to new possibilities. Subscribe below to make sure you don’t miss any future interviews. ✨
Today, I am so grateful to be sharing wisdom with you from Hanna du Plessis. I read Bedsores and Bliss, Hanna’s chapbook, in one sitting, and wept when I finished it. My tears were an outpouring of grief but they were also mixed with joy and gratitude for what I learned from Hanna. Bedsores and Bliss is on the short list of books that have changed my life.
If you haven’t heard of Hanna and her work, I want to share a brief description of Hanna written by her dear friend, visual and print journalist, Maranie Rae Staab, whose stunning photos accompany this interview:
“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.”
Everything I've read of Hanna’s is lyrical and shot through with depth, humor, and originality, including what she shares with us here about her mindfulness practices. In this interview, she shares with us about her practice of welcoming suffering in the midst of ALS, and her practice to soften into What Is. Read on, friends, for this tremendous gift. 🌱
Hanna on mindfulness
Note: Thanks to Hanna’s dear friend Marc Rettig, and a custom voice created from past recordings using ElevenLabs technology, we have this recording of Hanna “reading” the essay that follows. Click below to listen.
Mindfulness entered my life around the age of thirty-four, because of what I believed to be an eating disorder. Starting at twelve years old, I was caught in a cycle of binge eating followed by vigorous exercise and a diet of salad. I thought something was wrong with me. I felt ashamed of my "inability to control myself." When I moved to Pittsburgh at the age of thirty-four, I hit an all time low. All the external props I leaned on to run and numb were stripped from me. Except food. I felt ravenous and desperate for answers.
In an online course with life coach Martha Beck, I learned to pause and notice the feelings that drove me to the corner cupboard where I kept my stash of sweets. Instead of opening the cupboard, I'd slide down to the kitchen floor. Slowly I learned to recognize the feelings that animated my actions. Anxiety was the main one, and food was a great way to soothe myself.
Beck offered a visualization I’ve used for more than a decade. I'll talk you through it.
Imagine your fear as a terrified horse (or any other animal): nostrils flaring, frothing at the mouth, eyes big and searching, hooves kicking up dust. Now imagine you and your animal are together in a very large pen. You're safe, no predator or person can enter. Encourage the horse to run, to be wild and free. Tell the horse, "I allow you to be as you are. I offer no resistance to you." Repeat as often as feels good. See if you can become the reassuring companion to this wild creature. This practice—to become the compassionate observer rather than the one caught in my experience—changed my life.
When I lost my cool at the beginning of my ALS journey, my friend yvette shipman (also known as rev’ive) did a guided meditation with me. She invited me to imagine my death. And from this vantage point she then asked, "How do you want to live, Hanna?" She encouraged me to listen for the answer. I waited. Eventually I opened my eyes and said, "I want to live with love and gratitude." It’s one thing to say that when you can still scratch your nose and walk down stairs. But now…!
I have a belief that the pressure of suffering, if welcomed, can turn you into a gem. ALS has made me less saintly and more human. Frank Ostaseski, Buddhist teacher and founder of the Zen Hospice Project, helped me make sense of this.
To try to relay what I've learned, I’ll use these words. As you die, you wilt. Not only your body, but also your psyche. The structures that kept your shadow self hidden go limp, and you and your friends are shocked by your harsh reactions. This pains me. The Dalai Lama suggests that when you feel helpless, practice altruism. But when I've felt helpless, or I get hurt, or something doesn't happen "right," my old ugly habits of self-protection and control show their claws. It's awfully humbling. No one wants to hurt their friends who faithfully get up to administer meds at four am, or gently clean your wounds and dry your peaches. So I've been practicing….
For example, because I'm almost completely paralyzed, if I need to move from wheelchair to toilet to bed, my carers need to put me in a sling that looks like a nylon octopus crossed with a falcon claw. It hooks onto a beige manually-operated domestic crane, which then lifts me up so finally the carer can push it to where I am lowered. During the transfer I don't have my speech device to communicate. If I see something is wrong or I feel discomfort or pain, I only have my eyes and a grunt.
Because I rely on twenty (or more!) friends to help me, sometimes things really go wrong. When we have a botched transfer, I can feel (and sometimes sound) like a cat forced into a carry cage. It's then that I practice interrupting my anger and anguish with the phrase, "This is what is happening now." And that reminds me to soften into the knowing that things will change. My friend Bean reminds me to also do this when things go well. I learned this hard-working phrase from Frank Ostaseski, and from Adam Lobel (mentor, meditation teacher and the officiate of my funeral): the continuing practice to soften into What Is.
This community has been working towards a world more whole and just. So we are in practice to name and work through conflict. Sometimes we just need to come back to ourselves.
So we'll take hands and use the phrase Bean adapted from Ostaseski: "I am here now, I trust my wise heart. We are here now, we trust our wise heart." Repeating that while physically held in community often helps me return to this moment, and soften my body-mind.
I also struggle with my relentless mind. I suspect you know nothing about that. Wink. I use phrases like rosary beads to help me return again and again. I have many, but my current favorite is drawn from my Christian roots (thanks James Finley). I repeat:
be still and know that I am God
be still and know that I am
be still and know
be still
be.
And then I build the sentence up again. Sometimes, like last night, one phrase feels particularly resonant and I stay with it. “Be still, my love. Be still, my soul, be still….”
You might hear a tenderness in that phrase. This season and this sickness are teaching me about love. For myself, because I expect a lot from myself, and on the other extreme, people who have harmed me. I don't want to die with hardness in my heart. My chaplain, Sarah Hooper, helped me see that I don't have to forgive people’s actions. Some actions may be beyond me to forgive. But I can love that being. So I lean on the Metta practice and I remember who I feel called to open my heart to. And I say to them, "May you be well, may you be happy, may you be free from suffering." And I rest in the grace that allows me to mean it.
And so, may it be for you. I bow to the sacred inside you.
I want to thank Marc Rettig for editing. Thank you for reading and thank you Emily for inviting me to share.
Hanna du Plessis centers her life on the possibility that people can become more able to co-create a thriving world. She grew up in apartheid South Africa, and came to the US in 2009 to study design. Shortly after, she embarked on a mission to transform herself and share what she learned with others, “so we can get good at the collective work of healing, repairing, and re-weaving.”
Hanna has co-hosted dozens of spaces of transformation—gatherings of change leaders, student cohorts, and entire organizations. She has been an artist, a dancer, a writer, and performed improv on stage. In March of 2023, Hanna was diagnosed with ALS, a degenerative neuromuscular disease that slowly robs the body of its functions. She has committed her remaining time to writing and being in her beloved community.
Hanna’s first book, Bedsores and Bliss: Finding Fullness of Life With a Terminal Diagnosis, is available in print, eBook, and audiobook editions. Her memoir and a collection of essays written during ALS are in progress. Follow Hanna’s story and work by visiting okaythen.net/hanna-du-plessis.
For more from Hanna 🌱
Learn more about Hanna and her work HERE
Hanna’s care team, The Careforce, welcomes donations in any amount to help continue Hanna’s care
Order your copy of Hanna’s book, Bedsores and Bliss (print, eBook, or audioboo), at this link. You’ll also see greeting cards combining Hanna’s art and beautiful words.
Follow Hanna on Instagram
Follow Maranie Rae Staab on Instagram @maranierae and subscribe to her newsletter for updates on Hanna’s journey and other important stories
Read Hanna’s flash nonfiction piece, “Bright Green Box” at Short Reads
Watch the celebration of Hanna’s book at City of Asylum (w/ Sarah Shotland, Adriana Ramírez, Joy Katz, Veronica Corpuz, Dakota Rottino-Garilli, Cedric Rudolph & Teddi Salsgiver)
Watch Hanna’s TedX talk, “3 Ways to Change the Way You Think of People You Disagree With”
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Be Where You Are is a newsletter about how to use writing and mindfulness to live more fully where you are. To reply to this newsletter, just hit reply. I’d love to hear from you! I read and respond to every comment. You can also find me on Instagram/Facebook/Bluesky or find more info at my website.