Invitation: Hanna's Living End-of-Life Celebration
You are invited to attend
Hanna du Plessis’ Living End-of-Life Celebration
Join us virtually or in person, Sunday October 6, 11am to 2pm US Eastern time
“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!
Details and RSVP
Sunday, October 6
11am to 2pm, US Eastern time
Union Project
801 North Negley Avenue
It will be SO helpful if you let us know you’re coming. Please RSVP.
Virtual attendance via Zoom will be available. RSVP to receive a link.
If you want to know more about Hanna’s life and approaching death from ALS, you can read more here.
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.
Sign up before October 2nd
Whatever you plan to do, please sign up here with a short description before Oct 2nd.
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.
See you there!
Questions?
Ask in the comments below (because you’re probably not the only one wondering), or email Marc.
Hanna Celebration
Hanna du Plessis' Living End of Life Celebration
Save the date!
Sunday, October 6
11am to 2pm, US Eastern time
Union Project
801 N Negley Avenue
Virtual attendance available—RSVP to receive link
Let us know you're planning to come
Fill out the form below (scroll down to see the whole thing), or click this link to see the form on a new page by itself.
Seeking a Producer / Developer for our Season of Grief and Gratitude
We seek a part-time, limited-term ensemble member to help us produce The Season of Grief and Gratitude.
Summary
Okay Then is preparing to publish two books by Hanna du Plessis—The Grief Essays and The Gratitude Essays. But we don’t want to simply publish books. We want to help Hanna’s ideas and invitations come to life for people, groups and organizations. So we plan to also produce:
– A subscription site for the essays
– Ways for the community of readers to contribute their writing
– Supplements (print, audio, and…?) to the books that serve as scaffolding for group conversation and support for leaders
– An edition of the books that includes community voices
We seek a part-time, limited-term ensemble member to help us produce The Season of Grief and Gratitude.
– Work with Marc Rettig and Okay Then advisors to strategize and design
– Implement the subscription site
– Support audience development and communication
– Potentially help host the community of readers
We expect this engagement will last about three months, starting with one day a week or less to more intense involvement during development, then tapering off. The specifics will unfold as we work together.
Background: a project that springs from two series of essays by Hanna du Plessis
This Fall, we are making a series of media and experiences based on two essay series by our featured voice, Hanna du Plessis. The first is a set of forty essays on grief, written after Hanna’s miscarriage in 2021. The second is a series on gratitude. Partway through that writing, Hanna was diagnosed with ALS, a terminal disease. Yet she continued writing on the theme of gratitude, producing another forty essays altogether.
Hanna has a remarkable way of connecting personal grief to community and societal grief, with a generosity of spirit and depth of language that has already helped many readers. Her essays, along with her illustrations and photographs, are the core of the project we are undertaking in 2024. We are proceeding with urgency, knowing that Hanna may be reaching the end of her life.
Preliminary book covers for the Grief and Gratitude essays
Intended outcomes: community, books, and more
We are going to do more than simply publish two books. We aim to engage a community of readers, and so that some of the books’ form, content, and supplements emerge from that community. We anticipate producing a set of audio episodes—”podcast episodes without the podcast”—as supplements to the books.
The work: big picture and details, concept to pixel-pushing, people and media
We hope you’ll be able to help with all these aspects of the work:
Audience
Building an audience for The Season of Grief and Gratitude through list development and early promotions.
Subscription site
Developing a subscription site, collaborating on the content and experience plan then implementing it on a platform like Substack or Ghost.io.
Content production
Adding content to the main Okay Then site, including free “gifts” spun off from the subscription site. Also developing the content and experience for a set of “kits” that provide scaffolding for leaders, groups and organizations who want to use the conversations and practices that come from the Season of Grief and Gratitude.
Social media
Taking point on a social media presence for The Season—establishing accounts, inviting people to join, and sending out ongoing news and gifts.
Online events for a community of readers
Supporting a community of reader/contributors from which the final content of Hanna’s books will emerge.
You might love this and be great at it if you...
- Like making web stuff. Specifically Wordpress and either Substack or ghost.io. Actual Wordpress experience is important. But I think anyone who has tinkered much with such things can figure out the others pretty quickly. Extra credit if you can prepare images for the web, and are confident in Adobe suite.
- Like supporting people’s learning, engagement, and conversation
- Feel a connection with “soulful” topics like loss, grief, and gratitude
- Have experience with WordPress, subscription sites, popular social media platforms, etc., and like learning and applying new web tools
- Are comfortable co-creating through the design process, working through the uncertainty of early stages, evolving results through iteration
- Want to support the early steps of a new purposeful organization!
Expectations
Team
You will work closely with Okay Then founder Marc Rettig
Location
We prefer someone who lives in Pittsburgh, but will happily consider remote collaboration.
Schedule
Our ambition is to start this work in early September, launch the subscription site in late October, and hold at least one community event before the end of 2024.
Commitment
We anticipate about a three-month engagement with time commitment at first less than one day per week, building in intensity, then falling off once the subscription site is launched. It’s reasonable to expect an average of two days per week.
Compensation
As a bootstrapped early-stage new venture, we should let you know up front that compensation must unfortunately be below market rates. Let’s talk.
The start of something good?
While we are open to this being a one-time engagement, we hope that this work could lead to longer term collaboration as Okay Then’s business grows.
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 