2024 Retrospective
Hello dear folks,
This is Marc writing. Happy new year to you. Well, that’s what people say. I really mean I wish you nourishment, protection, creative flow, and a balance of go-juice and rest-berries as we turn this calendar page.
In this update we’re looking back over the remarkable story of the past year. Scanning through the timeline, you’ll get a sense of the fullness and challenges of life for Hanna and all those around her.
There are three sections:
Several people contributed to the words and timeline below: Hanna, Ti, Lizzie, Akie/Erika, and I. Many others took the photos.
A timeline of 2024 with Hanna
January
Cheeping chirping life!
Hatched on Christmas day, newborn chicks stay in residence at the Oasis (our name for Hanna’s house).
Creative study and work
Ten days of attending a Carlow writing residency, supported each day by Laurie Rettig. Here’s Hanna reading (through Ti) at the ending celebration.
Getting around
Grateful for the gift of a very orange and slightly wonky wheelchair-accessible van. And grateful for Team Gleason, who supplied a portable electric wheelchair. In the house, Hanna uses a walker to get around and a lift to get up and down the stairs.
Communication
There are Boogie Boards all over the house, which Hanna uses to communicate. Mostly writing, and an occasional hilarious sketch.
Art
The “Gratitude” painting Hanna created in December gets finalized and printed. You can order a print of your own here!
Birthday
Hanna gets a gorgeous birthday serenade on a snowy night below her balcony. Here’s a video.
Medical
At the end of the month, Hanna has surgery to install her feeding tube. The experience: “like being badly beaten up.”
And so so many visits with PTs and OTs—physical therapists and occupational therapists. “If my memory serves me right I have had consultations with ten different OTs and PTs. Only three of them had experience with ALS.” The Careforce team does their best to learn new stretches and exercises, and earnestly but inconsistently assists Hanna each day.
February
Body
After the feeding tube surgery, Hanna’s hands and arms rapidly decline. She can no longer raise her arms, and typing becomes a mush of text.
Pain
Shoulder pain visits Hanna every night, disrupting sleep and being… well, painful! We have an appointment with a shoulder specialist, who tries to help manage the pain with a steroid injection.
Medicine
Hanna has her first encounter with opioids.
Communication (or not)
Because of her hands, Hanna is not able to use her laptop or phone. Because of winter, she is homebound. A sense of isolation sets in.
Birthday
We’ve decided that the 17th of every month is Hanna’s birthday. This month it’s observed with a massage and a Zoom with her South African family.
Team morale
Both Hanna and the Careforce members struggle with the steep learning curve and sleep interrupted by pain. Morale takes a torpedo.
Money
After months of government paperwork, we’re approved for Act 150—a state program meant to provide pay for caregivers. After obtaining approval we realize that it pays so little, no professional caregivers or agencies will accept it. We can’t hire help.
March
Getting around
Hanna’s custom-fitted power wheelchair arrives March 1. It’s a 450-pound wonder that can take her around the neighborhood, tilt back for comfort, and knock over furniture. Seth’s daughter Early names it “Bone Cruncher.”
Mamma!
Hanna’s mother Elsa visits for two weeks.
Pain
Shoulder pain continues, annoying bedsores develop on Hanna’s hands and elbows, and we continually experiment and improvise ways to manage through positioning, pillows, and medications.
Team
The complexity increases, but the stellar team comes through to meet it.
Writing milestone
During a meeting with Hanna’s writing mentor and MFA department head (Hello Geeta! Hello Tess!), it becomes clear that the best course of action is to gather existing pieces and arrange them into a manuscript. On March 24, Hanna submits her essay collection to developmental editor Geeta Kothari of Carlow University.
Scenes from January to March
Click photos to enlarge
April
Facing death together
Nearly thirty people from Hanna’s team and extended community gathers for a group conversation about death, at the Irma Freeman Center for Imagination in Pittsburgh.
Adventure
Hanna, Seth and the kids, and a few friends have an amazing day trip to Ohio to experience a total solar eclipse.
May
Writing milestone
Met with Sarah Shotland of Carlow University to explore ideas for publishing. Together we conceived the idea of a chapbook—the short (and therefore faster to publish) collection of essays that became Bedsores and Bliss. And Sarah agreed to be the editor!
Friend! Friends!
Over the year, friends from out of town sometimes came to visit. We can’t put them all in the timeline, but this month it was Ben Graham who joined life at the Oasis for a few days (and provided this placeholder for Hanna to say to all those friends, “I loved you being here”).
A show and a parade
Careforce people shared moments from their caregiving experience at the Polish Hill May Day variety show. Thanks to Mark Knobil, we have video.
The next day many of us, including Hanna, joined in the Polish Hill May Day Parade—an annual celebration of human spirit and the power of loving community. Here’s a video to give you a taste.
Mamma!
Hanna’s mother Elsa returned for a three-week visit, once again weaving into the life and work of the house.
Getting around
The quirky orange van proved to be too quirky. But we need transportation to get Hanna out into life! The choice for now is a rented wheelchair-accessible van. It’s expensive, but everything works.
Communication
Tobii arrives. That’s a tobii Dynavox TD I-13—a fancy tablet computer with infrared cameras that can follow Hanna’s eyes. As her ability to type and write declines, this will make it possible for her to continue writing and communicating. But there’s a learning curve, and for now Hanna is still using Boogie Boards a lot.
Birthday! Birthdays!
With so many people involved, there is often a reason to celebrate someone’s birthday. Sometimes that happens quietly in WhatsApp, and sometimes it’s a party. This month was a party for a special birthday: Seth’s 50th. Grateful.
La la la munch
Singalong and cookout in front of the Oasis, with Eric Lipsky on guitar.
Help, great help
Our first professional caregiver joins the team: beloved Amanda. She fits right in, she’s great and attentive and caring, and everyone rejoices!
June
Getting around
Hanna still using a walker in the house. We learn how best to support her in risky moments.
Communication
Hanna starts using Tobii more for writing and communication, but it’s a long and frustrating process to learn to type with her eyes. Selecting, copy-and-paste, scrolling… ugh.
Hanna’s voice
Hanna and Lizzie recorded an episode of Dana Daugherty’s Untethered to Rooted podcast. You can listen here. (And hey, the next episode features more of Lizzie.)
Scenes from April to June
Click photos to enlarge
July
Communication
The Tobii speaks, but none of its voice options sound anything like Hanna. Marc found a company that will make a voice based on past recordings, and now we got to try it. It’s better, sounding a little like Hanna in Finland. But it is so very monotone. Hanna calls it “the roadkill voice”—”because it’s flat and lifeless.”
Adventure
Hanna and Seth make a trip for a friend’s wedding in the woods.
Getting around
The rental van was expensive! But now we have the wonderful gift of a new (to us) van, thanks to Tina Calabro and family. Mostly it works. Mostly.
Adventure + designing death
Hanna, Ti, Seth, Marc, Kyle and Lizzie make an EPIC road trip to Vermont to visit a MAID clinic. MAID is “Medical Aid in Dying”—a process legal in a few US states that allows people choice in how and when they die. Hanna isn’t decided on this, but she wanted to make sure the choice is available to her. This trip was necessary for that.
Published!
Boppa’s Bald Stories is a children’s book written by Laurie Rettig (who supported Hanna during her January residency at Carlow) and illustrated by Hanna. You can learn more and buy a copy here! Buy three!
August
Brother!
Hanna’s brother Otto visited for ten days. He jumped right into helping, and joined adventures with Hanna, Seth and the kids. Hanna gets her last swim of her life!
Designing death
Hanna , Otto, Seth and the kids chose a burial site at Penn Forest green burial grounds.
Writing
All through the summer, Hanna continues work on the manuscript for her next book—the one that will follow Bedsores and Bliss.
Symptoms progress
At an appointment, the neurologist says, “You have become too weak to walk.”
Facing death together
We have a community storytelling night about “a time you almost died.” And the shroud is unveiled—a gorgeous fabric shroud for Hanna’s body, covered with pockets for people’s “Letters Upstairs.” (You can write one if you want. Here’s how.)
September
More wonderful help
Marin, our second professional caregiver, is wonderful. She had been present a few hours a week, and now she takes on a larger role. We are all so grateful.
Adjusting to limitations
An amazing team moves Hanna’s bedroom from upstairs (a big loss!) and creates a bedroom cocoon in the first-floor living room, complete with velvet curtains.
Health
Hanna’s hands weaken to the point where, after driving into the sink too many times, she can no longer drive the wheelchair herself. It’s hard to need to ask each time you want to move or tilt. Now most of her communication consists of requests.
Scenes from July to September
Click photos to enlarge
October
Mamma!
Hanna’s mother Elsa visits for almost three weeks. We all always love and benefit from her big warm loving presence.
Communication
Remember “the roadkill voice?” This month we installed a new voice for Hanna, developed by ElevenLabs based on three hours of past recordings that Marc fed to their algorithm. At first it’s promising but very quirky. With the help of Bridging Voice, we get it to be reliable, expressive, and it sounds like Hanna. Lovely.
Celebrating life and death
What a wonderful big wild thing was Hanna’s “Living end of life celebration.” Many beloved people came to Pittsburgh. 150 people in the room at the Union Project, something like 70 people attending via Zoom, many more watching the livestream. Enjoy the video.
Symptoms progress
Hanna loses her ability to stand using a walker, and needs to be held upright when using the urinal.
Adjusting to limitations
The ALS Association provides us with a Hoyer Lift and slings to hoist hanna up and down between bed, wheelchair and toilet. They also provide a “Shower Buddy”—a wheelchair that can roll over the toilet. Convenient, but it irritates “George” the hemorrhoid.
November
Hanna’s voice
Hanna is one of three writers featured in Carlow University’s “Raising Our Voices” reading event. She is celebrated at the Zoom gathering, and Marc reads her writing to the audience.
More help
We connect with Ron Hoffman of Compassionate Care ALS.
Facing death together
We have a “Letters to Upstairs” gathering on Zoom
Symptoms progress
Hanna can no longer swallow solid food. She can still enjoy a pudding and Reiko’s savory egg custards. But to savor Thanksgiving flavors they must be rendered to pudding consistency in the food processor. She increasingly needs to use a suction machine (like at the dentist) to manage snot and saliva.
Published!
Hanna’s book—the chapbook conceived back in March—is officially published. It’s called Bedsores and Bliss, and is available from Okay Then in print or as an eBook, or through your favorite book site. Buy three!
December
Hanna’s voice + facing death together
We hold a beautiful book launch event for Hanna’s book at City of Asylum in Pittsburgh, which was also live streamed. Sarah Shotland, who directs Hanna’s co-publisher Madbooks, invited other local authors to create and share pieces on “what feels terminal.” A great night. Here’s a video.
Money
For over a year we have been blessed with people’s financial support. We spent little from that pool, first using other funds and saving for the bigger expenses that are sure to come. This month we began using those donated funds for paid caregiver expenses.
Getting around
The new-to-us van was in sore need of repairs. Compassionate Care ALS supported the cost of those repairs. Such a helpful gift.
Adjusting to limitations
We began using the Hoyer Lift for transfers between chair, toilet, and bed. This is a time of numerous experiments with ways to pee without the ability to stand, including three different bedpans and an external catheter.
Love
Despite missing South Africa home, we have a beautiful family time over the Christmas break, complete with a “bush tree” Seth had cut. We’re lucky to have the kids with us.
Scenes from October to December
Click photos to enlarge
The year in numbers
Hanna's score
The medical world uses a standard assessment to evaluate ALS patients, and to track the progression of their symptoms. It’s called the ALS Functional Rating Score. Hanna takes this assessment each time she visits the ALS Clinic in Pittsburgh. Here you can see what makes up the score.
Here is a graph of Hanna’s score through 2024. It’s a cold telling of the story of her progressing symptoms.
Click to enlarge
Finances
Your donations for 2024 totaled just over $20,000. Amazing. Wonderful. Such a blessing. In May we began paying professional caregivers, with an outlay of just over $42,000 in 2024. We still have some cushion, but we will soon begin another round of fundraising. (Here’s a link to our donation page.)
Click to enlarge
A force for care
It’s astonishing, this community of care. The numbers below were harvested from the sign-up sheet we use to organize ourselves, to make sure there is always at least one competent loving caregiver with Hanna. The numbers aren’t as exact as they look—truth is there are many hours that aren’t recorded in the sheet. Still this gives a sense of the sheer volume of attention paid through the year.
Click to enlarge
Reflections from Hanna
As I’m writing this, the foreground feeling is weariness. I hear my shallow breath, almost raspy and rapid as if I’d just climbed three flights of city steps. To go from walking (with great difficulty), eating and typing to being almost completely paralyzed, on a ventilator fourteen hours a day, and not being able to eat in the span of a year is… It’s a lot to bear. The pace of my bodily demise is relentless and crushingly humbling. Sometimes humiliating. There is always something new to learn, something gone to mourn, some new wound or machine and routine for sixteen or more caregivers to learn.
But then the clouds move and a radiant sense of gratitude mixes with my fatigue. Inside my soul is an oil lamp, lit by all of your love.
Objectively I’m dying the best ALS death I could hope for (aside from being too far from South Africa). By Mark and Catherine’s grace I live in a beautiful home, with a view that helps me see my insignificance and connects me to birds, squirrels and trees. I am warm. I am well fed. I am well medicated, keeping me comfortable. We have (unlike at home) reliable electricity and water. We aren’t in a war zone. I am not in a care facility where I am another body and burden for an underpaid worker, or worse, where young women like me, paralyzed and mute, are often victims of abuse.
ALS is a masterclass in surrender, patience and trust. Sliding into complete helplessness accompanied by pain, discomfort, and all the so-called “negative” emotions isn’t a walk in the park. Rather it’s a year in the trenches. What made living inside this possible is yes, prior spiritual practice and cultivation of life-sustaining habits, but in the foreground is you all. Supporting me from the tiniest homemade book that reads, “Hanna you are the beast” (a spelling error delight) to showing up five days or two nights a week to care for my every need, to help me make every move and everything in between. You and the ways you show your love create a loving and supportive environment that buoys me up when I feel like going under.
I’ve always feared this place—savings depleted, government support negligible, ill health. But here I am, doing well because of the geology of friendships that has formed out of mutual care, care for our families, our neighborhood, racial justice, social transformation, writing. Layers upon layers of meaningful work and connection tilling the soil for this moment. This moment that defies our societal story of scarcity, isolation and lack. What else might be possible that we can’t see from here?
It would bring me great joy to write you all a long thank-you for sustaining me. But when I look back on my day’s speech history, it’s mostly made of requests. “Please move my arm. Lip balm please. Please square my hips.” And so on, ad nauseum. So, I know it might not feel good to have your gifts and exquisite expressions of love go unacknowledged by me, but I am thanking you.
Sssssh. Listen. Hear that? I thank you with my smiling silence.
Video of "Life in Unraveling" event is now available
Readings from Hanna’s new book, Bedsores and Bliss. A gathering of guest writers whose work and voices made a fabric, woven with Hanna’s invitation. Thanks to everyone who gave so freely and creatively to the prompt and the occasion.
Video of the event is available through the button below, along with details of Hanna’s prompting questions and biographies of the guest authors and poets.
Video: Life in Unraveling
For a clickable list that lets you jump to any part of the program, click the “Watch on YouTube” button, then click “more” in the description below the video and scroll down.
An Evening of Joyful Unsettling Voices
Hanna du Plessis is Okay Then’s first featured voice. She used to facilitate social change and taught “Design for Social Innovation” at Carnegie Mellon University and the School of Visual Arts. Now she writes while dying of ALS. Publications include her first book, Bedsores and Bliss, the Pittsburgh Post-Gazette, “Song of Ourself, Voices in Unison,” and the Carlow University Creative Writing MFA 20th Anniversary Anthology.
Veronica Corpuz is an interdisciplinary poet who explores themes of her Filipino-American identity and family, as well as grief and loss in her work. She is a member of the #notwhite collective and Madwomen in the Attic program at Carlow University.
I Medina Jackson is a community educator, mother, poet, spoken word and Hip Hop artist with over a decade of non-profit sector leadership and management experience within the field of education. She is the co-facilitator for the Black Transformative Arts Network, and Director of Engagement at Pitt’s P.R.I.D.E. Program (Positive Racial Identity Development in Early Education).
Joy Katz’s poems and essays document race inside and around her transracial family. As part of If You Really Love Me, a multidisciplinary artist collective, her most recent project was live music for wage workers. She teaches poetry and nonfiction for Madwomen in the Attic and other programs across the country and eats a lot of licorice.
Adriana E. Ramírez’ nonfiction novella, Dead Boys, won the 2015 PEN/Fusion Emerging Writers Prize. In 2019 she was awarded the Carol R. Brown Creative Achievement Award for an Established Artist by the Pittsburgh Foundation and the Heinz Endowments. She is a poet, critic, essayist, and columnist. Her forthcoming nonfiction book is titled The Violence.
Dakota Rottino-Garilli has a wealth of experience in youth advocacy, education, and therapeutic support. She is a licensed social worker who has worked with challenges related to mental health, systemic inequities, and community empowerment. She serves as the Post-Secondary Support Program Manager at ARYSE Pittsburgh.
Cedric Rudolph is a poet from Alabama, a student of poetry and pedagogy, and a teacher of writing in many different settings. Among them: two years teaching creative writing at the Allegheny County Jail and a semester at the State Correctional Institute-Pittsburgh. Cedric recently placed third in Eavesdrop Magazine’s Queer Joy Contest.
Teddi Salsgiver is a neuroqueer poet and current MFA student at Carlow University, where she completed her undergrad in Creative Writing and American Labor History. She has been a member of the Madwomen in the Attic Writing Workshops since 2013.. She shares her life in Pittsburgh with two partners and two puppies.
The event: Questions from the teetering balance between devastation and joy
What keeps us going when parts or all of us, things we love, those we love, are terminal?
How might we support each other as we lose what’s precious?
This all got started because of Hanna du Plessis.
She just published a book called Bedsores and Bliss: Finding fullness of life with a terminal diagnosis.
She says,...
Hanna has ALS, a progressive terminal disease.
So she’s dying,
and at the same time she is LIVING.
“This little book is about journey. How do we keep walking and finding our way
when the road ahead must pass through difficulty?
This question 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?”
We had this event to celebrate Hanna’s book. We asked Hanna, “What’s the heart of this? What is your invitation to the guest authors?” She said,
“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? Be it because of systemic racism, exposure to environmental toxins, police brutality, systemic neglect and poverty, immigration, queerness… things that are intrinsic to us but not handled with enough care for us to thrive.”
“Dear one, I’m so curious about what it is like for you. How are you living? What keeps you going? How might we support each other as we lose what’s precious?”
Bedsores and Bliss! Print and eBook!
IT’S HERE!
You can learn more and read excerpts in the full description of Hanna’s book.
How to buy Bedsores and Bliss in the US
If you live in the US, you can purchase the book using the button above. It’s also listed on bookshops.com, Amazon, Barnes & Noble, and most other book sites. But we like it when you buy it directly from us. 🙂
Elsewhere (like South Africa)
If you live outside the US, we recommend ordering through Amazon or your other favorite book-buying site that ships to your country. Amazon recently launched amazon.co.za, but so far Hanna’s books are not listed there. (We don’t know why!) But amazon.co.uk carries both Bedsores and Bliss and Boppa’s Bald Stories and does ship to South Africa.
Save the date: Reading and launch event December 9
We’ll post more details soon, but here’s our first notice:
Monday, December 9
6:30 to 8:00pm US Eastern time
Bedsores and Bliss launch event, with readings by Hanna and a wonderful group of guest authors
City of Asylum, Pittsburgh
The event will be broadcast via livestream and recorded. More details soon!
Bedsores and Bliss! Print and eBook!
Bedsores and Bliss is now available for purchase
You can learn more about the book and read excerpts in our full description of Hanna’s book. We promised to let you know when it went on sale, so… yes! It’s now available.
How to buy Bedsores and Bliss in the US
If you live in the US, you can purchase the book using the button above. It’s also listed on bookshops.com, Amazon, Barnes & Noble, and most other book sites. But we like it when you buy it directly from us. 🙂
Elsewhere (like South Africa)
If you live outside the US, we recommend ordering through Amazon or your other favorite book-buying site that ships to your country. Amazon recently launched amazon.co.za, but so far Hanna’s books are not listed there. (We don’t know why!) But amazon.co.uk carries both Bedsores and Bliss and Boppa’s Bald Stories and does ship to South Africa.
Save the date—reading and launch event December 9
We’ll post more details soon, but here’s our first notice:
Monday, December 9
6:30 to 8:00pm US Eastern time
Bedsores and Bliss launch event, with readings by Hanna and a wonderful group of guest authors
City of Asylum
Pittsburgh
The event will be broadcast via livestream and recorded. More details soon!
Letters Upstairs: An invitation to loving correspondence (Nov 17)
Beloveds,
On the 17th of every month, we make space to connect and share with Hanna and to celebrate together. This month the invitation is to gather in person and online to write “Letters Upstairs” to people who have already passed on.
Here's the plan for Sunday, November 17
Prepare: 6:00pm South Africa time / 11:00am Pittsburgh time
Meet with friends or family, or settle yourself in a cozy spot with pen and paper. Write a letter.
Gather: 6:30pm South Africa time / 11:30am Pittsburgh time
Gather on Zoom to visit with Hanna and take turns sharing letters. Sharing isn’t required! Just an option and a way to be together.
Here is the Zoom link. No need to register, just show up.
bit.ly/okayzoom
We hope you will find people to gather with in person. Share hugs and treats, and tell stories before and after we Zoom together.
Here are the guidelines from Hanna
“I’m preparing for a journey to a place I’ve never been, but where people I love have gone before. Akie’s brother Chris remembers a brief bright visit to a place he calls “upstairs” after an accident forty years ago. Ever since he has spoken of abundant love for everybody, “My sisters, my brothers, upstairs, downstairs, everybody. Everybody. Love love love.”
“Who are your people who have gone upstairs? May I carry a message to them from you when I go?
“To send a letter upstairs:
– Write a letter on paper. Please use thin, biodegradable paper.
– Make a copy for yourself to keep.
– Fold it up or put it in an envelope addressed to [Your Person], Upstairs, ℅ Hanna.
– If you don’t want anyone to read it, seal it.. (no stickers or plastic tape – biodegradable only).
– Put it in another envelope and mail it to me, or bring it over in person, or get it to Elsa so she can bring it.
“When it’s time for me to go, whenever that is, your letters will be tucked into pockets in my shroud. It will be a comfort to know your blessings go with me and that your people (some of whom are also my people) will be there to welcome me on the landing.”
How to deliver your letter to Hanna
Address your envelopes according to Hanna’s instructions above. Like this:
If you can’t join us on Saturday the 17th, you can still send a letter. Hanna welcomes them any time between now and her delivery date.
Coming soon from Hanna du Plessis
Sign up to receive (occasional) news about Hanna's books
Hanna's body, mind and heart have roamed courageously, and so does her writing. Her many forms of writing—essays, stories, lists, scenes—are needed to hold the bursting force of life and inquiry she contains. Through the lens of her experience we are invited to consider questions of belonging, becoming, suffering and joy across all scales from the history of nations to the song of a single bird.
Memoir as a collage of scenes, moments, histories and reflections, from apartheid South Africa to a Pittsburgh ALS clinic. Together they make a grand invitation to readers—to deepen our relationships and expand our embrace of life’s griefs and joys.
Working title, not the final cover
Co-published with Madbooks of Carlow University, to whom we are hugely grateful.
In the two years since her diagnosis of ALS, through the progressive loss of her voice and ability to move independently, Hanna has written with rare courage and honesty. This book expands on the Bedsores and Bliss chapbook with remarkable reports from the place where unimaginable loss meets stubborn joy.
Working title, not the final cover
Living End Celebration
Video: Hanna's Living End of Life Celebration
What a profound and memorable day. SO many people came together to celebrate Hanna’s life and voice, and to practice holding grief in community. was attended by 140 people in person, 90 people in Zoom, while another 50 watched the livestream.
Here is the recording of the event (with its variety show format), and links to the program, Hanna’s reading, a photo gallery, and more.
Watch the show
For a clickable list that lets you jump to any part of the program, click the “Watch on YouTube” button, then click “more” in the description below the video and scroll down.
“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
More from the show
Follow Hanna's life and work
Final Details for Hanna's Living End-of-Life Celebration
What you need to know about
Hanna’s Living End-of-Life Celebration
Sunday October 6, 2024
What is this event?
Well essentially, a Living End of Life Celebration is a funeral/memorial service for someone who is aware they’re living their final days/weeks/months. Like Hanna whose respiratory-onset ALS is progressing constantly and is terminal. A living funeral is a unique celebration of life and a chance to say/write/share things that you would usually share AFTER someone passes away.
We’re so lucky that Hanna is still very much ALIVE. In Hanna’s words, “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.”
Things to know if you're attending in person
Please take a COVID test the morning of the event
If you are the slightest bit sick with a cold or other illness (especially anything respiratory), please participate virtually. We want to keep Hanna breathing as long as she possibly can and keep her direct care workers well so she has the care she needs.
Wear a mask during the whole event
We’ll have extras available at the event, but perhaps you want to decorate your mask before you arrive. (Variety show participants – it’s ok if you take your mask off during your performance.)
What to wear
Hanna says, “traditional funeral with a twist!” Wear a festive hat or choose one at the door. Mostly, wear anything that you will feel comfortable in.
Food: potluck snacks, not a meal
We’ll have a snack table, and we’ll ask people to eat and drink outdoors. Potluck contributions to the snack table are encouraged and welcome. Don’t expect a full meal!
We’ll have support for big emotions
A few people at the event, mostly therapist folks, will be present to hold space for big emotions.
A place for kids
We’ll have a place and activities for kids (and anyone), staffed throughout the event.
Things for EVERYONE to know
If performing in the variety show is not your thing, there are other ways to send your creativity to Hanna
You are heartily invited to communicate more directly to Hanna—write or draw something before or during the event, bring a photo, a piece of art or a meaningful object, make a video, bring a poem or quote that resonates, anything! Your creativity is welcome.
You can send writings or other media by email to careforce@gmail.com
or you can submitting them by adding them to the Google folder HERE.
(These messages will NOT be shared live the day of the event. We’ll make sure Hanna sees them after.)
Hanna has invited anyone to write a letter to someone who has died.
She said, “When it’s time for me to go, whenever that is, your letters will be tucked into pockets in my shroud. It will be a comfort to know your blessings go with me and that your people (some of whom are also my people) will be there to welcome me on the landing.” We will have writing materials.
There will also be opportunities at the celebration to share your insight about care, learn to wrap a shroud for green burial, make art, and be close to friends and strangers in a moment of grief and joy.
It’s going to be a unique and meaningful day. We hope you can join us.
– The celebration team