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.
I wish we had gotten more time to explore our love of writing, but I appreciate these words. Thank you Marc for keeping us posted, and thank you Hanna for…everything. Much love <3
Thank you Marc for keeping us updated with all this precious news – I’m sure this takes many hours. Please know that it means the world for so many of us so far, and so far removed, from Hanna’s, and this whole community of love and care, lived experience from day to day, hour to hour.
Bless you Careforce. I’m blown away that this level of care, attention, love, and time in the trenches is possible, and being done with and for Hanna. I pray that, and wonder if, this happens for many people all around the world living the reality of ALS or similar.
Thank you Hanna’s family – all of you from different continents. You demonstrate what Love as a verb looks like.
Dankie Hanna. Thank you for being open and true, as you’ve ALWAYS been and cannot be anything other. I am so thankful that you’re willing to keep us in the loop, and educate us, on your journey. What a terrifying wonderful scary humourous deeply difficult glorious cruel reality this is.
It is hard for me to wrap my head around everything busy happening, yet my heart is so so so very grateful to receive the Gift of being included in all the news, from far far away.
Love,
Mia
Hanna, your “stubborn joy” is an inspiration to me. I’ve been reading (and rereading) chapters of your Bedsores and Bliss, a little book filled with enormous wisdom, reminders that I should approach every day with gratitude and grace. Know that your published works improve lives. I look forward to having your 2025 book of essays in my hands, too. Peace and love.
You continue to be an inspiration my friend. I wish I could be there with you to bask in the silence a bit together. I think of you daily and send my love.
Thank you very much Marc for a wonderful feedback and for sharing the great and not so great part of Hanna’s journey
You are all sent from above
And thank you super hero Hanna for continuing to share your life with us sis ♥️♥️♥️♥️♥️♥️
I am daunted by the enormity of love in this community of Hanna’s and Hanna’s spirit.
I am a person with ALS.
I hold space today for Hanna.
So much light & peace.
Melody
Ah Melody, thank you and much love to you. (And wait…. Did I hear you in a podcast or Story Corps episode a while back?) Thank you for “light and peace.” Passing it back to you.
Thanks for this update.