Invitation: Hanna's Living End-of-Life Celebration
You are invited to attend
Hanna du Plessis’ Living End-of-Life Celebration
Sunday October 6, 2024
View the recorded livestream of the celebration
What an amazing day. We need a little time to edit and pull things together, then we’ll post recordings, galleries, and other links here.
“One of the perks of being on the slow death safari is that you can attend your own funeral. I feel grateful to still be here. I am excited to celebrate the precious time we could spend together, and mourn that I am leaving so soon.” -Hanna
Variety Show Format
In the spirit of my life the event will be variety show style.
The essence is to say thank you, I love you, goodbye or—as we say in Afrikaans—tot weersiens, until we meet again. You have permission to poke at my foibles! I want to be remembered as a whole human that people can relate to. Make something that captures what it is you want me to know before I depart.
I invite you to reach out to friends we share (see groups I can think of at the end of this message), and collaborate to make something together.
Interested? Thinking about it? See details at the end of this invitation.
Why now?
No one can tell how long I will live. But here is what we do know:
• The average life expectancy for bulbar-onset ALS is two years from diagnosis.
• It was October two years ago when I started to notice that I am not well. I had my first medical exam in early November.
• I have an unusually aggressive case for my age.
• My neurologist describes me as being in the advanced stages of ALS and I am on hospice care.
• My lungs are so compromised that if I get a lung infection, I‘ll wave goodbye quickly. If I don’t and progression is slow, I’ll see you for Christmas.
• Since we don’t know, we thought it best to celebrate whilst I am still up for a party, because you know I am down for a good time!
The variety show: what to make, what to do?
The form can be anything. What feels true to our friendship? If we danced together, use movement. If we hiked together make it in the mountains. If we designed, cooked, prayed, meditated, gardened, sang, cycled or facilitated together let that inform your making. Write a collective poem, make living postcards, make a vegetable puppet show, draw our bliss or break-up.
If what you make is spoken or performed, please keep it under five minutes.
If it is more exhibit than performance, we’ll make sure to have a place for it at the venue, on the web, or both.
If you are sharing your piece virtually, please upload it by October 2nd so our tech team has time to string it together (we’ll provide a link).
Physical or digital artifacts like a book or a paper hat are also welcome. We’ll find a place for it at the venue and/or on the web.
Please do it badly. This is the time we have to express our love and heartbreak. Don’t allow overthinking or perfection to get in the way.
I invite you to offer something as a group
Groups that come to mind
Meyersparkers
Pro Arte Alphen Park
Interior design at the University of Pretoria
Pretoria maats, even if you live elsewhere
Switch
ID, Chicago
Chicago friends
Facilitator and racial justice friends, including Theater of the Oppressed PGH
Improv people and the high scores! Make me a silly song!
University pals: Carnegie Mellon, SVA and Ohio State University
May day choir, if nothing else, sing most beautiful sky please!
Carlow writers
NBD Collective
Fellow dancers I met through the pillow project
YROL beloveds!
Garden crew
Polish Hill mates, chicken tenders (narrated dancing chicken video?)
Family! Rossouws, du Plessis, Fickle, Montana family, chosen Pittsburgh fam, Payen and those I didn’t mention.
July 2024: How's Hanna?
In this update
– How’s Hanna?
– Available now: a children’s book illustrated by Hanna!
– Finance update
How is Hanna?
(This is Marc writing.)
It is a remarkable time, with the intensity of life in this season, the constant presence of loss and love, the thousand moments every day of participating in one another’s experience of it all, daily difficulties and hilarities.
How is Hanna? Part of the answer is that her symptoms continue to progress. More things take more time and more effort. Movement. Communication. Getting up in the morning. Going to bed at night. She gets around in her powered wheelchair, in the house, around the neighborhood, and on adventures. She uses a walker to transfer from her chair to the bathroom or her bed.
Hanna continues to write, using a device controlled by tracking her eye movements. On the one hand, holy smokes that’s amazing. On the other hand, you know how frustrating it can be to use a lot of software? That, but now you can’t use your hands. It makes so much possible, at the price of great patience and ALS-inflected cuss words.
Pain is still present, especially at night in her shoulders and arms. Medications help manage it, allowing Hanna to sleep for good stretches of hours. But it’s still pain. The people in the “Care Force” have learned a series of stretches and movements we do with Hanna each morning and other times during the day, which help maintain her range of movement and hopefully help manage pain. (Too often we forget or get caught up in All The Things and don’t do daily hand stretches, which is frustrating for Hanna.)
Food is still a pleasure. Hanna gets most of her nutrition through her feeding tube, supplemented by so many people’s tasty and healthy gifts. During these hot days, watermelon and ice cream are essential staples.
Whatever small pleasures there are through the days, the limitations that come with ALS can create a sense of being disconnected, isolated from life and the relationships that are such an essential part of Hanna’s life. If you’re doing something, consider inviting Hanna!
A few recent outings
– Swimming! One of the Pittsburgh public pools has a lift that can help this water-girl get in the water.
– Braai! (S’what Afrikaaners call grilling.) Cook out in front of Hanna’s house.
– Fireflies! Soaking in the magic that is a firefly-filled dusk in Homewood Cemetery
Boppa’s Bald Stories—Hanna illustrated a children’s book!
The headline for this book’s press release says,
It has been almost three years since Hanna started the first sketches for this book, and it’s finally available! It’s really funny and gorgeous! Not because I say so*—I’ve watched people get lost in the stories, chuckling over the words and illustrations. I’ve had moms tell me their kids want to hear it over and over again. So yes, Boppa’s Bald Stories!
Here is it’s web page, with pictures, a sample story, and links to buy the book.
With your connection to Hanna and the high probability that there are bald people in your life, you might like a copy! US folks, you can order it just about anywhere you like to buy books online (pre-order until the July 31 release date.) South Africans, I have not yet found where Boppa is offered in your country. I want to fix that!
And say, it would be wonderful if you could post a review of the book on whatever site you’d like. Amazon, Goodreads, Barnes and Noble,….
. . .
* Full disclosure: I’m related to the author, the bald guy in the book is my brother, I’m biased toward the illustrator, and I’m the publisher.
Update on finances
Here’s the most recent update over on givebutter.com/hanna-care, where we’ve seen a lovely burst of generosity, and where we are still collecting support for the costs of qualified caregivers for Hanna:
“Thank you all, so much. The paid caregivers have made a big difference in the lives of all the people involved with Hanna’s care and thriving.
We’ve had a bit of a windfall, which will help stretch these donations by directing them exclusively to caregivers. We anticipated high expenses for a wheelchair-accessible van. To our surprise, a local person who is replacing the van they’ve used for their son has offered the old van to Hanna for just $500 (plus the cost of repairs). It’s a wonderful gift that lets us stretch your donations further.”
The amount of labor involved in finding, contacting, vetting, and scheduling paid caregivers is just huge. Many have helped with that work, but here’s a particular shout-out to Erika Gold Kestenberg for her enduring efforts and bulletproof good cheer.
The expense of this is high. So far we are in reasonably good shape, but continually keep an eye on our burn rate, the resource pool, and the calendar.
Thank you all SO MUCH.
Boppa Advance Copy
Advance Reviewer's Copy
Click the “X” made of arrows in the bottom right corner to expand to full screen.
(“Echoes” of the illustrations along the centerline between pages do not appear in the printed book.)
PRE-ORDER NOW
for July 31 release
Boppa's Bald Stories
"Boppa," asked EmmyJean yet again, "Tell us how you got bald." And Boppa explained it again, differently and even more crazy than last time, and swore it was all true.
It was lightning! It was a bear! A shark, a tornado, a man with a very small lawnmower…. When the kids ask their granddad yet again, “Boppa, how did you get bald?” he answers with a different wild story every time, and swears they’re all true. Boppa’s wife “Yaya” is the author, Laurie Trott Rettig. She gathered Boppa’s stories and the moments of home and belonging that surround their telling. She asked Hanna du Plessis to capture the mix of kids, grandparents, and magical imagination in her wonderful illustrations. Written for young readers, each story and illustration offers a world of love and whimsy.
What readers are saying
The stories
Click to read "Boppa and the Green Hair"
Laurie Trott Rettig, author
Throughout her life in Montana wheat country, Laurie Trott Rettig has created places of home, creativity, generosity and whimsy. She has four grown daughters and one son, with an ever-expanding number of grandchildren. The Lark and Laurel House, which was a bed and breakfast, is now a whirl of life and playful exploration: music, games, food, spontaneous theater, backyard concerts, and a steady flow of guests. It was from this swirling life that the Boppa stories were born.
Laurie was raised and schooled in central Montana. She attended the University of Montana in Missoula and Montana State University, completing a BS in Home Economics and elementary education.
She spent time in Japan, England, and Spain before returning to her beloved prairie. There she took turns at being a farm wife, a teacher for the Quatre Fleurs home school, a public school teacher and later a teacher of English in South Korea.
In 2010 Laurie achieved her dream of becoming a bed and breakfast owner. That same year she achieved another long-cherished dream when she became the wife and partner to the man who loves her. She knows him as “Ross the Boss,” but he is known to the grandchildren as “Boppa.”
Through it all, Laurie has exercised her gift for creating alluring spaces for intimacy, connection and relationship.
Hanna du Plessis, illustrator
Hanna du Plessis illustrated her first children’s story when she was in her early twenties. Through the following years she’s never stopped sketching, painting, and creating expressions of wonder and the full range of human emotions. She’s worked as an architect, a designer, a teacher, a dancer. Born under apartheid in South Africa, then living in the US, she has dedicated her life to collaboration toward equitable and sustainable life for all.
Hanna met Yaya and Boppa and the roiling rest of the family a decade ago. Laurie showed her the bald stories, the two laughed and imagined together, and here we are.
In December of 2023, Hanna was diagnosed with ALS. This is a progressive neuro-muscular disease, and Hanna’s hands became too paralyzed to paint. That’s why the illustration for one of the stories in the book is still a sketch. Now in 2024, Hanna is choosing to use her energies in other ways, and offers that final sketch with love for Yaya, Boppa, the stories, and you.
You can learn more about her life, writing and art by visiting okaythen.net/voices/hanna-du-plessis.
Oppression and Sue
“How do I change the world? It’s a beautiful question. The only problem is that when I ask that question, I ask it with the same mind that raised me. If you were raised in an oppressive system, that culture lives inside you. I see it in myself and the people I work with—we want to bring a better future into the world, but we have inherited the tools of Oppression.”
We are thrilled to be in the process of bringing you Hanna du Plessis’ richly illustrated modern fable, Oppression and Sue. It’s easy to read, but points to a lifetime of practice for anyone who seeks to use their life in service to a life-sustaining future for us all.
In a few pages, Hanna uses a gardening metaphor to raise many profound questions. In developing this book, we hope to go beyond simply reproducing her text and illustrations. We want to make a tool. We’re asking ourselves,
“How can this book have a live beyond the bookshelf? How can it help leaders and groups host conversations that matter in their organizations and communities?”
True to Okay Then’s nature as a “participatory production company,” we are collaborating with some wonderful co-creators who will add perspective, stories, questions, facilitation guides, and activities for anyone who wants to use Hanna’s book in their world, with their people.
Sample pages
Video: CareForce at the Variety Show
CareForce on stage at the Polish Hill Variety Show
Dear folks, we’re aware we haven’t updated you since mid-May. This is short—the main thing is, we wanted to show you a video!
Briefly,
– Hanna’s symptoms continue to progress, with corresponding upping-of-attention to her movement, balance, and overall care.
– Hanna continues to write, using a Tobii-Dynavox gaze-tracking device. Like most of the gear designed to support people in her situation, it’s both wonderful and infuriating. Hello, learning curve.
– We have regular help from two paid caregivers
– We are acquiring a used wheelchair-accessible van, for a price that really amounts to it being a gift.
– The major themes beyond basic care: end of life planning, hunger for continued connection to friends and family, creative voice (Hanna was just the guest on a podcast; more about when it’s published), spiritual life and fulfillment through this wild mix of loss, vitality and community.
Now…. On to the show.
Thanks to Mark Knobil for shooting, editing and posting the video.
Departing Royalty
by Marc Rettig
for the Kenyon Creative Nonfiction Workshop
“We must risk delight. …We must have the stubbornness to accept our gladness in the ruthless furnace of this world.”
Jack Gilbert, A brief for the defense
First I need to tell you about the life that’s being stolen.
It’s a block and a half from my house to Hanna’s, and we both know the neighbors along the way. Especially Hanna, who made that walk twice a day for a decade. It’s a five-minute walk, but Hanna often took half an hour. She carried old cards from a library card catalog. She’d say, “Oh, look at you, you’ve grown so much!” to a magnolia bud, a baby pine cone, a weed in the sidewalk crack, then pull out one of those cards and carefully sketch its portrait on the back.
Hanna gave the same attention to the neighbors, keeping sketches of their lives in her mental card catalog. “How was your daughter’s trip?” “What did the doctor say?” “Is that a new blouse?”
Thirty minutes each way for ten years cultivates a lot of love.
ALS, that thief, has stolen those daily visits from Hanna, and from the neighbors. It’s a progressive disease that slowly unhitches nerves from muscles, degrading and stealing the body’s ability to speak, chew, put on a shirt, scratch an itch, walk down the street, sketch a bud. The thief took her voice. She writes slowly on an electronic slate. For all their love, people don’t know what to say to a dying woman, however wholeheartedly she is dying.
Now I can tell you about the photograph.
Hanna’s trip from her writing desk on the first floor to her nap on the second floor is a geography of loss. She moves from her wheelchair to the stair lift with the support of a walker. Each of those—chair, walker, and lift—were heartbreaking symbols on first meeting. Now she waves like departing royalty as the lift carries her up the stairs.
Arriving in the bathroom I lower her skirt and support her descent to the toilet. When she first needed that help and we knew she would need it for the rest of her life, her heart broke. Wailing tears and snot. Now she smiles at a safe soft landing on the seat. When she’s done I help her stand, and use tissues to dry her. We glance at each other in the mirror with amused shyness.
In the photograph. we’re using a bristly motorized mouthpiece that vibrates to brush all her teeth at once.
The first time we used the brush, Hanna yelled at me, and sobbed tears of frustration. You have to squeeze it just a little so it will fit in her mouth. We hadn’t learned that. The disease is infuriating, utterly, as are its necessary devices, methods, and mysteries. In that moment we were defeated.
Now light is pouring in the window and the air feels cool. We two friends are together. There will be games in the evening. The brush is humming. It all smells like mint.
I’ve just said something like, “I’m so glad for this edible carwash.” Hanna laughed, and that pushed foam out around her teeth, and that was funny too. And our laughter at the joke and the foam, that was funny, and the motor is vibrating and there’s foam in the sink, and we don’t have control, and…. And it’s all so delightful. There’s only joy in those crinkles at the corner of her eye.
In the midst of all we were living, the moment felt huge. I drew a great breath of delight. I let go of the brush and the walker, reached for my phone and took the picture.
In this moment we were collaborators in the practice of stubborn joy. The poet Jack Gilbert taught us that years ago after Hanna’s miscarriage. Hanna took the lead in walking into difficult country, learning to hold both light and dark through our days, learning to meet life as it is rather than as we want it to be. Loss and gladness, mine and yours, and the neighbors, the city’s, the world’s. That’s a lovely and difficult joy. Once in motion, it’s hard to knock off its tracks.
As is usually true for noble ideas, the practice is mundane. It’s a little noisy. It uses up a lot of tissues. But through that practice we may come to the place where we ascend with a smiling wave, like departing royalty, as are we all.
Bright Green Box (via Short Reads)
Hanna was just published in a literary magazine called Short Reads, which sends one highly curated short essay a week to its subscribers.
Here’s the link!
via 
Another Light: Making Space for Healing
"This painting marks years of walking through a certain kind of night—a deep walk through ancestral healing of trauma around abuse, trying to listen and find a route …that could help clear this pattern of abuse in the family. This was medicine for that. ...There is help and assistance that is not always visible. It was a turning point for me as a mother, artist, and human."
- Denise, portrait subject and co-creator
Forming a creative collective, dreaming ways for art to touch people and communities
After a twenty-year hiatus, Jeffrey Dorsey began painting once again. Over five years, twelve rich and intimate portraits emerged, each portraying someone with a full and remarkable story. He calls the project Another Light. (You can see more about his process, the people and the paintings on Jeffrey’s Facebook page for the first phase of this project.)
Given Jeffrey’s heart for people and community, and the breadth and diversity of personal stories found among the portrait subjects, a traditional gallery exhibit doesn’t seem right. The search to figure out the right fit led to a pair of questions:
– How might this collection of story-laden portraits be a catalyst for profound public conversations?
– What if the answer was created collectively by the artist and his subjects?
Select details of the paintings
Click to enlarge
This is just the sort of question that lights us up.
Platforms for voices that touch lives. Acts of collective creativity. Courageous conversations about trauma, healing, race, power, loss, and transformation. We couldn’t resist.
With Jeffrey taking the lead, the collective has started dreaming of ways that the paintings, people, and their stories can create opportunities for collective healing. The next steps for phase II, called Another Light: Making Space for Healing, involve identifying spaces to install the project, building co-created public and private programming led by participants of the collective, and raising funds to market and document this phase.
Okay Then’s Marc Rettig is supporting the work through planning and playful imagination, and hosting and facilitation. Okay Then aims to stick with the collective through the long creative process, because we know something wonderful can happen when these stories meet new communities.
Know a project or voice that could use the support of a "participatory production company?"
Hanna du Plessis
“It’s not only my body that is dying. Think about so many other bodies—of people and places—you know it's a time of dying. As Vanessa Machado de Oliveira says, it’s a time of ‘hospicing modernity.’ Hospice like I'm giving someone a soft transition out of life. I believe it is our collective work to usher out this worldview of power-over, and bring in something more beautiful.”- Hanna du Plessis
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Hanna is our first featured voice...
…and she is dying of ALS.
Through her teaching, coaching, group hosting, writing, art, loving acts and lived example, Hanna has touched thousands of people. She’s a leader in showing what’s needed for us to create together a world where all belong. We are so excited to bring her voice to you.
A message from Hanna recorded in April 2023, a few months after her diagnosis
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Hanna's story
Hanna’s career has revolved around an urgent sense of possibility—that we can become more able to co-create the thriving world we can dream of.
Beginnings in South Africa
Hanna grew up in apartheid South Africa, with a clear social caste system that still reverberates in inequitable practices that harm everyone. Living there, she witnessed how patterns of oppression perpetuate in our own bodies and in the social fabric, one generation after another.
Moving from design to social transformation
Around 2010, Hanna left the world of design and strategy to learn about social transformation. She embarked on a different 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, entire organizations. She has been an artist, a dancer, a writer, and performed improv on stage.
Hanna’s persistent driving question throughout these years has been:
“Seeing that the world is a living system, that we are all participants in its emergent complexity, and that oppression and trauma are embedded in our society, how do we create together toward an equitable and sustainable future?”
Living, dying and writing with ALS
In March of 2023, Hanna was diagnosed with ALS, a degenerative neuromuscular disease that slowly robs the body of its functions. She has committed this time to writing, and we are thrilled to have some of her work in development.
Learn more, learn how to help
Hanna’s community of care has a home at okaythen.net/hanna. You can see some of her past writings, follow her story through updates, and see ways we can all support her through this time.
Some past works
Hanna speaks at TEDx Pittsburgh
The desegregation of self
Toward ending white silence
Current and forthcoming work by Hanna
Bedsores and Bliss
Finding fullness of life with a terminal diagnosis—a pocketbook containing a remarkable collection of essays written as Hanna experienced her diagnosis and life with ALS.
Coming Winter 2024
Two more books from Hanna coming in late 2024 and early 2024—a collage of memoir and essays, and the full collection of her ALS writings.
Boppa’s Bald Stories
A children’s book featuring Hanna’s beautiful and whimsical illustrations. NOW AVAILABLE!