Invitation: May 17 singalong

Pittsburgh folks! It's a singalong...


After the gorgeous snowy serenade under Hanna’s balcony for her real birthday on the 17th of January, we decided the 17th of every month would be Hanna’s birthday. Woo!


May 2024: Request for donations

6 May 2024

Hello dear folks,

This update is about money. So many of you have given, with so much generosity. We’ve been stewarding your gifts as best we can, and still have over 80% of your donations in reserve. But now Hanna’s needs have progressed in ways that require us to start spending. So we’re writing to let you know about the financial needs for Hanna’s care.

We are hiring paid caregivers
We aim to hire two people to cover 95 of the 168 hours in a week. Including fees and payroll tax, that comes to $9,700 per month. (Know someone who might be qualified and interested? Please send them our job description.)

We are arranging for a wheelchair-accessible van
Access to transportation is so important for Hanna. We’ve had intermittent access to a wheelchair-accessible van, which was so wonderfully helpful. We need one that she can use any time, and have found a place that offers three-month rentals. The cost for three months is $9500. We’ll start with that, then assess the value of extending another three.

How you can help
One-time donation: use either of the buttons below to make a donation of any size (we’ve learned from your past generosity how small amounts add up to great help)

Monthly donations are especially helpful, because knowing what’s coming helps us manage these monthly costs. Click “Monthly” at the top of the donation form to set a regular monthly amount.

For these two goals—consistent good care at the level Hanna requires, and reliable access to transportation—we are looking at $14,700 a month. For starters we’ve set a goal to raise three months funding at that level, or $45,000.

It’s not a crisis (yet)
Between the funds we started with and your donations over the last year, we can proceed with all of these plans right away. We don’t have to wait. The money we now request will allow us to keep going beyond what we’ve saved, hopefully without ever having a crisis that forces difficult and unwanted decisions.

We’ve set up a new fundraising campaign on GiveButter—chosen because it’s easy for you, easy for us, and we’ll spend little on transaction fees. Note the “one-time” and “monthly” options at the top of the donation form.

Quick donation shortcut

A quick pop-up form, if that’s all you need.

Big Picture

Hanna's Care on GiveButter

Great for seeing our progress and for sharing with others who might want to help.


A little more back story on care

Since December 1 of last year (when I started doing stats), 24 people have provided direct care to Hanna in her home. That doesn’t count many more who have helped organize, clean, feed, launder, entertain, manage, and more. These are people who have helped Hanna with her growing challenges of movement, rest, medication, pain management, nutrition, personal care, communication, travel,…. Every day and night, all day and night. One person has spent the equivalent of ten weeks “on the job.” Many have consistently shown up week after week. More still fill in gaps and come to assist as they are able, however they are able.

It’s an amazing effort. Hanna is SO GRATEFUL for this amazing community, as is everyone around her. What a community of caring, attending, doing whatever is needed through all these changing needs.

But the needs are exceeding our ability to care. Increasingly there are gaps in the schedule we must quickly fill. Hanna’s care is becoming more complicated and more medical. Many of us are doing respectable but amateur duty in physical therapy, medication, nutrition management, etc,. and because there are so many people helping it is difficult (impossible?) to have consistent knowledge and technique across everyone involved.

Hanna needs skilled, dedicated, loving care. Then we can all be there to support, help, and continue the flow of life with Hanna. That’s what this fundraising campaign is for.

Thank you all, as always, for your love and support. More updates soon on Hanna’s life, writing and publication, recent public events, and more.

Marc


Seeking a compassionate caregiver

March 2024

Hello,

Here in Pittsburgh we are looking for a compassionate caregiver with a gentle soul, to be part of Hanna’s fabric of care.

If the job description below sounds like you or someone you know that might be interested in climbing aboard this magnificent ship of care to accompany Hanna and the CareForce on this uncertain journey, please send an email to Erika Kestenberg at careforce@okaythen.net with the following information:

A brief written note, voice note or video clip sharing why this position appeals to you.
Your full contact information, including phone, email, and address.
The date you’re available to start.
A description of your past experiences working as a caregiver, or a resume if you have one you’d like us to see.
Whether you have criminal background and child abuse clearances or need to acquire them. (If there are flags on your criminal background that are not relevant for this position, feel free to still apply and let’s talk about them).

Thank you! Share this link as you see fit, and/or download a PDF of the job description with the button below and pass that along.


Seeking a Compassionate Caregiver for Hanna du Plessis
Our CareForce is looking for a compassionate caregiver with a gentle soul for our special friend Hanna. (You can learn a lot about Hanna’s life, her ALS, and her care by visiting okaythen.net/hanna.)

CareForce is the name we gave our mighty group of friends currently caring for Hanna 24/7. Hanna has been contending with bulbar onset ALS for the last 15 months. She is living in the Polish Hill community of Pittsburgh. As an ideal candidate, you should have a diverse and progressive mindset, excel in understanding non-verbal communication, be patient, and have a deep capacity for empathy. Experience with ALS care is a plus, but not required.

Key qualifications include the physical ability to support 130 pounds, emotional resilience, and excellent listening skills. The role demands strict hygiene practices, including wearing masks and minimizing illness exposure. We value trustworthiness, reliability, a joyful spirit and the ability to work well in a team. An appreciation for a tidy living space, comfort with caregiving tasks, and openness to feedback are important. We are seeking a candidate who is adaptable, self-aware, and willing to engage in an honest dialogue about fit and changing needs.

Monday-Friday, 8am-3pm, $25/hour
Hanna is transitioning from being supported only by her CareForce friends 24/7 to also having paid caregivers. It is exhausting for Hanna, and increasingly dangerous for her, to adjust to a constant rotation of different caregivers. As her needs increase, we need reliable, consistent, and skillful support to help her live well while dying. She is looking for someone who can provide consistent work 35 hours per week, primarily Mondays to Fridays between 8:00 am and 3:00 pm, starting immediately. Consistent support is also needed on weekends and some overnights as well. At present we can offer $25 per hour. We are seeking dedicated caregivers who can stay engaged with Hanna and her CareForce for a 6-12 month commitment, in cooperation with skilled nursing and hospice workers as needed.

Compassionate Caregiver Qualifications
Prior caregiving experience needed. Ability to support moving a 130 pound person from sitting to standing to sitting, with laying down and sitting up in bed, etc. A current driver’s license, clean driving record, and car insurance are preferred, but not required. The ability to maintain transportation to and from Hanna’s home in Polish Hill.

Sample Daily Activities
• Preparation of meals for oral ingestion and the use of a PEG feeding tube (which is easy to learn)
• Assistance with bathing, grooming, oral care, and toileting.
• Lifting and assisting Hanna in and out of bed, a chair and from the toilet.
• Morning and afternoon stretching Hanna’s body
• Assistance in using mobility support devices (chair lift, wheelchairs, walkers, etc…)
• Supporting Hanna’s ability to communicate through a myriad of tools (laptop, boogie board writing tablet, signs, iPad, etc…)
• Assistance with medical equipment (bi-pap ventilator, humidifier, cough assist, suction).
• Support with schedules for Zoom appointments and appointments in and outside the home.
• Administration of medicine for pain management
• Maintaining records of medication, food and drink intake, and other information about Hanna’s condition.
• Movement and outdoor activities
• Light household cleaning
• Assistance opening and reading mail aloud
• Infusing joy, fun, and humor into everyday life as much as possible.

How to Apply
If this sounds like you and you are interested in climbing aboard this magnificent ship of care
to accompany Hanna and the CareForce on this uncertain journey, please send an email to
Erika Kestenberg at careforce@okaythen.net with the following information:
• A brief written note, voice note or video clip sharing why this position appeals to you.
• Your full contact information, including phone, email, and address.
• Date you’re available to start.
• A description of your past experiences working as a caregiver or if you have a resume you’d like to include.
• If you have criminal background and child abuse clearances or need to acquire them.
• (If there are flags on your criminal background that are not relevant for this position, feel free to still apply and let’s talk about them).


February 2024: How's Hanna?

21 February 2024

Dear people,
It has been MONTHS since we gave you a what’s-going-on update. Some of Hanna’s writing appeared here in December, but before that the last update was back in October while Hanna was in South Africa.

This is Marc writing. I’ll do my best to give you the important facts, woven with words from Hanna. And I’ll mix a little unimportant but entertaining stuff, and well… update you.

Feeding tube: Pipe for Eating Good

If you read “A dying girl goes to grad school,” you have a sense of the ways in which Hanna’s physical condition is changing. The biggest change since then is this: on January 31, Hanna had surgery for a PEG feeding tube. There are different kinds of feeding tubes. Hers is a PEG, which stands for “Pipe for Eating Good.” No, that’s not right. It actually stands for three US$20 medical words, but the key part is that word “tube.” Hanna has new plumbing.

Before the tube, chewing and swallowing had become such a chore, it was tiring to consume enough oatmeal, yogurt and lasagna to achieve the goal for daily nutrition. “I’m tired, but I have to keep eating.” That energy tax is a dear thing to pay when the daily energy budget is low. It’s energy Hanna would rather use for connection and creative work.

The hope was that the tube would allow Hanna to eat for pleasure while getting sufficient nutrition through the tube. That’s sort of true, but Hanna’s reaction to an earlier draft of this paragraph went something like this: ”Too rosy. It’s a chore to adjust to formula, my bowels are loose, and I can get nauseous. So there’s still a double labor of food and formula.” One rose: Hanna no longer needs to pass full glasses of ass-flavored medicine across her taste buds.

On Christmas morning, five chicks hatched in Hanna's house. The first-born was naturally named "Little Baby Jesus," or LBJ for short. The gray chick at far left is Shnookie. Photo at right: Shnookie seven weeks later. Yeah, I know.

The two weeks after surgery were terribly difficult. Hanna says “devastating.” Here’s what she says….


Hanna, 7 February 2024

Dear ones, this is the week where I feel defeated by this illness. I feel like I am on a reality TV show, “Medical Marathons,” where the aim is to break the spirit of the patient before the body breaks. There is the post-surgery pain, nausea and healing, the steep learning of wound cleaning and feeding with a PEG, new medications, at least ten more medical professionals and two more companies to establish relationship and interact with (omg, please stop asking me questions!).

But then there is also the fact of ALS: while healthy folks return to the same level of functioning after surgery (or illness, or travel), we don’t. I am contending with significant and frustrating changes. While I could use my phone some before, my hands are too shriveled up to use my phone. while I could turn around in bed (I am a side sleeper), I can no longer turn on my side – for lack of strength and because my right shoulder is often in great pain that will not allow me to go back to sleep. While I could wipe my bottom before, I can no longer manage that either. Communication with my board, tablet and computer is becoming more and more difficult, as if I am moving in a sludge of snow. I am quick to cry and short tempered. I turn into a tantrum after 10pm. These losses compound—to not sleep well, to not stay connected, to not have time to be quiet, to not work at my craft….

And the people around me keep showing up, keep smiling, reading to me at 5am, administering scary pain-meds at midnight and then again at 4am, massaging my sore fingers, bringing me food, brushing my teeth, scraping my tongue. Figuring out systems to helps us learn, tirelessly teaching each other to feed me through a tiny tube, making videos with Honey Dew, a teddy bear body double, to socialize a good way to wipe my bottom. How unlucky and lucky we are—to love a dying being and nurture a growing community.


Sometimes people ask about finances

It’s difficult to describe the labyrinth of systems, policies, agencies and gatekeepers traversed by a few dear people close to Hanna. And and and the surprising well of gifts and grants, offerings and flows. I’ll mention a few of those blessings, then mention where we are with paid care—the real potential money sink.

Hanna has qualified for both Medicare and Medicaid (well, provisional emergency Medicaid; we are reapplying this month), and has policies under both programs. For those not living in the US, this means she is covered by insurance that is mostly designed for “old people” and “poor people.” Being covered by both means most of Hanna’s devices, medications, and doctors’ care is provided at little or no cost.

Thank you to the many who have given to Hanna’s fund through the links on this site. For the most part we have held this money in reserve for future costs of care. We’ve used some for need-it-now supplies or devices, and expenses in support of Hanna’s communication, writing and publication.

Hanna is also benefiting greatly from the many ALS-specific nonprofit organizations, as well as some State of Pennsylvania programs. There are so many kind people who give their time and expertise to people living with ALS. I’ll show you some of the results below. Shoutouts to Team Gleason (portable electric chair and communications tablet), Adam Rossi of adamsolarrides.com (electric trike), and Rahel’s sister Molly for the loan of a wheelchair-ready, ramp-extending, fully modified van.

The biggest costs are yet to come. It’s already the case that, some of Hanna’s needs exceed the capacity of our group of loving volunteers. We’ve started to pay for care from people who do that for a living, and this will surely increase. We’ll never stop being with Hanna every day, we’ll never stop showing up to care. But we’ll need more dedicated care providers as time goes on. That can become remarkably expensive.

So how is the financial situation? I’ll say it’s okay. And as I say that I have a serious look on my face as I gaze toward the horizon. It feels like something expensive is over there….

Molly loaned this wonderful wheelchair-ready van. Hanna tries on her new electric chair. Basically it's Optimus Prime.


Hanna, 15 February 2024

Happy valentine’s week. I LOVE YOU! And for the first time since infancy i can honestly sing along with Mariah Carey, “I can’t live without you.” Can’t eat, wipe my bottom, get up, go to bed, take my meds, feel the goodness of life without you. OMG, utter helplessness,de pendence and all this vulnerability ensconced in your love. What a glorious tragedy.

Sharing something I wrote at Carlow

His job, he tells me, is to see to it that i die of old age. And we both laugh knowing i won’t make it to 48. He hands me the clear plastic tube, three inches long with a blue bubble attached to one end and shows me how to put it where my tongue makes a k-sound, how I should press it against my palate for three seconds, then rest for five for ten reps every other day, as it might slow my tongue from turning into stone.

Then he asks me if I received the EMST, and i vaguely remember yet another masked woman at the ALS clinic handing me a bright green box and, on leaving the room telling me to use it–what is it?– and me diligently packing it in my suitcase to use when I travel and the damn green box following me, unopened, and still, this morning, it sits on my dining room table, reminding me that I am dying and not doing my best to keep living by forcing the air out of my lungs through the respiratory strengthening device: five reps, resting for 5 seconds between blows and one minute between reps, three times a week.

I push the box aside noticing my fingers curling in like a bunch of bananas and now I feel badly for not stretching them as the occupational therapist instructed, but with the table cleared, I do the stretch the physical therapist showed me–five reps of 20 second holds, seven days a week–so I don’t get a frozen shoulder, frozen, immobilized before its time, the time it takes for ALS to paralyze enough voluntary muscles for me to die, die before my time for a lack of trying.

Frozen or slushy shoulder

That shoulder i wrote about just got worse and worse. My primary doctor thinks it’s frozen. My occupational therapist says it’s not frozen yet. Slushy then? I think of my shoulder as the responsibility-absorbing limb in a collapsing body. “Legs you can’t walk, I’ll hold you up on the walker. Leftie, you’re so weak, I take over hand work. Mouth you’re mute, I’ll speak for you. Soul, you dream of writing. Let me help you—even while I am being paralyzed to the degree that i can no longer stretch or lift myself, even when my fingers are inflamed, even if it hurts so bad.”

Burnout. At the moment it hurts so much that i need pain meds in the day and twice at night, and even then I can’t always sleep.

I spent a good day gnawing at the bottom of the despair-barrel. But as I cried in defeat, my runny nose made spectacular snot bubbles, compelling us to laugh and so doing finding a ladder of levity out of the barrel.


The snot bubble from Marc’s point of view…

Hanna really was stuck down in that barrel. Tears and tears. We’d dry her eyes and blow her nose. (Hold the tissue to her nose, close one nostril, two or three blows, then the other, mop up.) All tidy, then it would begin again. Tears and tears, drips and drops, in cycles of sadness. I look at her. She looks at me. She sobs, and suddenly there’s a miracle: a huge glistening globe blooms from her right nostril, shining in the kitchen light with swirling blue and yellow reflections. It pauses, it’s glorious, then it pops. We look at each other. I say something like, “What a wonder!” and we both laugh and laugh. The second time this happens, the spell is broken. There is once again room for delight. Hanna is able to start dreaming again, of museum visits and crepes for supper.


Postscript: cheerful or sad?

Surely you notice the difference in tone between Hanna’s writing and mine (Marc). I’m speaking cheerfully. Hanna is reporting the first-person reality of living in a dying body.

Everyone who experiences this season is experiencing heartbreak. Myself included. We are each, alone and together, learning the art and practice of making a place for sorrow in the much larger home of our being. The pain in Hanna’s shoulder, the curve of her fingers, the weakness of her tongue and entire body will not be ignored. For her the loss is manifest in each moment. She has no choice but to inhabit it.

The rest of us have more choice about the source of our expression. We can speak from our sorrow. We can speak from our experience of life’s glad gifts. We must speak from both, and from the place where the two meet. Hanna still does, despite it all. And I, now writing to you, choose to speak from wonder.

Here’s how this showed up in a recent Zoom session with people from both the US and South Africa, gathered to talk about the practices of healthy relationship with loss.

Hanna: ALS is a bitch. I don’t feel I can keep up with grieving the losses I face. I felt ok up to the surgery and chronic shoulder pain. My reservoir of resilience is low and I’m apprenticing myself to want to live, even when I feel utterly demolished. I struggle to not feel resentful at life.

Hanna: I’m so quick to judge my past actions. I’m encouraged to stay with the feelings, to create a loving home for all of it, even the despair and fuming rage.

Alisa [paraphrased]: It just feels like we’ll keep taking care of Hanna forever. And Hanna, I crave to hear your anger! Trust us to help you practice trusting your anger. We’ll do this together.

Hanna: I feel like going into rage is useless, who is listening anyway? Nothing will change, I can see rage as a waste and will myself into acceptance.

Otto [Hanna’s brother]: Hanna, please tell me what brings you joy now.

Hanna: When you lie in the kelp at Sandbaai and you see the mountains and imagine the pajama sharks and twittering crayfish, there is a deep sense of wellbeing. And I can tap into that, I can see birds, smell coffee, see you, remember fynbos or Oom Bossie. I can hug and watch Netflix and be in the stream of care with all of you buoying me up. And I know the pain and hardship will pass and so will this beauty.

Hanna's writing desk; Pot pie is here!; A directory of links essential to coordinating our "Care Force"

Love and gratitude for you all. Sending squadrons of bright, blooming, buoyant nose bubbles to add wonder and laughs to whatever it is you’re feeling today.

Hanna and Marc


To Speak
Denise Levertov

 

To speak of sorrow
works upon it
moves it from its
crouched place barring
the way to and from the soul’s hall—
out in the light it
shows clear, whether
shrunken or known as
a giant wrath—
discrete
at least, where before
its great shadow joined
the walls and roof and seemed
to uphold the hall like a beam.


Birthday song: community magic

19 February 2024

We will post a most newsy update in the next day or two. But first we wanted to share the magic of this moment from Hanna’s birthday last month. On a clear, cold, snowy night with the moon looking down, a group of friends and neighbors gathered under Hanna’s balcony….


Hanna and Ti Wilhelm reading Hanna's work at Carlow

Gratitude to my donor

Hanna and Ti Wilhelm reading Hanna's work at Carlow
Hanna and Ti Wilhelm reading Hanna's work at Carlow

A letter from Hanna to the donor who made it possible for her to continue participating in the Carlow University MFA in Creative Writing. 

Dear Donor,
Thank you for what you have made possible for me. In November of last year I started to develop symptoms. Coming from a healthy family and having been well for most of my life, the five months between symptoms and diagnosis was a black night of swimming in an anxious sea. When I was diagnosed and given two years to live with the prospect of a slow and unstoppable demise, I fell into questioning whether life was worth living. But a disease like ALS does not permit long spells of despair, because there remains a ridiculous amount of work to do to make sure you have medical coverage, the equipment you need, accessible housing, etc. I felt like this darn thing consumed me.

The call from Tess (director of the Carlow University MFA in creative writing) and the possibility of the MFA opened a much needed avenue through which life returned to me. I had been wanting the structure and support of Carlow’s MFA program, but it wasn’t financially possible for me. Being white and educated already, I didn’t feel like I deserved a scholarship—there are people who need it more than me.

So I want to thank you for what you made possible for me. Whereas this terminal illness asks me to end my career I felt so passionate about, you gave me a new beginning. Whereas this curbs my mobility, you helped me get out and travel to Ireland! Whereas this shrinks my world of engagement with others, your generosity opened a community of writers to me. Whereas this confines me to a chair, through my writing I am going to wonderful and frightening places. Whereas this can take over my life, the monthly deadlines have given me permission to prioritize and claim my creative practice. Whereas this can make me feel like deer turd and like a good-for-nothing writer, the monthly mentor meetings and feedback are building my belief that my voice is worthy of being heard. Whereas this has taken my ability to speak from me, this program is giving me voice. Whereas this illness will ultimately take my life from me, my words will remain.

Yesterday I cried, not spoons or cups, but buckets of tears. A friend asked me what I was feeling, I wrote on my board, “How would you feel if you can no longer speak and you are losing your ability to lift your limbs, chew and swallow, breathe without support or travel home to be with your family?”

He paused and said, “I’d feel afraid.”

I wrote on my board, “I am terrified.”

He held my hand. We breathed together. Then he asked, “Can I tell you what helps me when I feel afraid?” I nodded yes.

“I remember that I am loved.”

Thank you for your love that is a lifeline in this dark time. I am beyond grateful to you for choosing to invest in me, and to Tess for seeing me and introducing me to you.

I respect the fact that you are anonymous. And also, if you ever want to meet in person, please know that I would love that.

Wishing you so much wellbeing.

Sincerely,
Hanna


A dying girl goes to grad school

The first two weeks of January 2024 (right now!), Hanna is attending a two-week intensive / residency as part of her MFA in Creative Nonfiction work at Carlow University. This means being on campus for part of each day, with students and faculty who aren’t familiar with her life with ALS. 

Before the semester began, Hanna wrote the following letter to her colleagues at Carlow.

Dear Carlow companions,
I’m so glad to join you for the January writing residency. I am writing because for the first time in my life, I am attending grad school in a disabled and dying body. Going on a writing retreat with a terminally ill person might be new for you too. So it’s bound to be awkward, but maybe I can share some things that will help us both get a feel for what it may be like.

I am not in control. On the ALS functional scale, I have lost 60% of my abilities. That’s a lot of body no longer functioning well! I’m like an old phone who might suddenly run out of battery life mid-workshop, please excuse me. My legs seem to miss running and will break out in a tremor at the weirdest times. Just welcome it.

I need full time care. A beloved friend, Laurie, is flying in from Montana to be my companion. She is cut from the same cloth as Rachel Watson and will fit right in. I’ll be leaning on her and if we need more support, we will definitely ask you.

Left: Off to the first day at Carlow in 2024, with Laurie and Marc. Right: navigating campus in the new folding electric wheelchair.

I look and act disabled. Which means that even though I feel like a songbird inside, I am disabled. I even have the parking sticker. In my able-bodied life I found it trying to relate to disabled folks and you might too. If you feel the urge to pity me or be overly nice and helpful, please go get a coffee and drink it slowly until you feel ready to try seeing me in my wholeness.

You will see little of me. This disease is a jealous bastard and has me breathing with a BiPap for twelve hours each day. It requires me to stretch daily so my limbs don’t turn into kettle-fried crisp. And eat, omg, I eat with a tongue that moves like a geriatric snail. So on a good day I will join you for three hours. I will not be able to generate much writing during the residency.

I am mute. I communicate by writing on a board, which Laurie will read. I miss talking! And I hate being talked at. I invite you to share silence with me. If I write on my board and invite you with a gesture to read, please read aloud to bring my voice into the room, so I know I have written legibly and you have understood. When we talk together, please ask me questions I can answer clearly with a yes or a no. If you ask two questions at once, I cannot respond and be understood. For example: Don’t ask “Would you like coffee or tea?” Please ask, “Would you like coffee?” Then wait for a reply, and if I say no, ask if I would like tea.

The paralysis is affecting my limbs and core. It is like the dial of gravity keeps turning up and my limbs seem to be stuck to surfaces. I heard yesterday that I am approved for a portable electric wheelchair which I don’t know how to drive yet! I hope to get it before the residency. You can also bet that I will be the slowest mover. Please excuse me if I roll in late!

My lung capacity keeps lessening. Any respiratory disease (a common cold, a flu, a mysterious sniffle) can land me in the hospital and I will not recover to this level of functioning again. This is a source of stress for me. I want to be in community, be loved and held and not get ill. My neurologist made it clear that I must mask at all times and invite others close to me to do so, and to up their hand washing game. Please be on the side of my safety. If we share a writing space and you are able, please mask up. If you or someone in your household has a respiratory infection, please keep your distance from me. It’s hard for me to ask, because I am a hugger-bear, but please be conscious of transferring cooties – don’t touch me without consent.

Because of this I will not join you for dinner, which is a sadness (I love hanging out, I love good food) and a relief (because I am gross).

I am gross. After your speech muscles go, your swallow functions follow. So be glad we are not sharing a meal! And even if we don’t dine together, my gross warning persists: I am no longer able to manage my saliva well and I can choke by swallowing my saliva (and disrupt your reading). With lungs that can’t cough so well, there will also be excessive throat clearing. I’m not trying to get your attention, I just have phlegm in the wrong place.

My emotions are right there, ready to surface. Don’t be alarmed if I cry. Don’t be scared if my laughter sounds like a donkey in labor or if I vocalize frustration in a moan. Part of dying is being vividly alive also. I feel stripped of my filters. Please just be in the moment with me. There is nothing to fix.

Despite all of this and no makeup, I am still a beautiful badass and I am excited to be with and learn from you as we keep writing, shifting, breaking, righting and remaking ourselves and this world.

With so much love,
Hanna

P.S.
I’m attaching a drawing—Laurie wrote a children’s book for which I made the illustrations.

A few of Hanna's illustrations for the book, "Boppa's Bald Stories."

Ireland, Beet Juice, Sea, Moon, Gratitude

In June 2023, Hanna attended a two-week writers’ residency at Trinity College Dublin. She wrote the following after her return. 

Oops! You all received notice about this post before it was fully cooked. The words are ready, but the photos aren’t. We’ll replace the duplicate and not-relevant-to-the-story photos in a bit. Meanwhile,… hello! (And a newsy “How’s Hanna?” update is coming soon.)


Beet juice and water

Our two-week writers’ residency at Trinity College Dublin ended with with a weekend in Sligo. After a full week of workshops, we headed to the west coast of Ireland by bus. Most folks packed a small suitcase with clothes and a backpack for books and computers. I too had my suitcase and backpack, plus my ventilator case, a bag with ventilator pipes and my humidifier and a fifth bag with my protein powder, smoothie ingredients and blender.

Thankfully Rachel came over to help me pack, as everything is more difficult with weakening hands and a careful-not-to-fall walk. She helped me carry my bags. For a moment I stood in front of the Graduates Memorial Building surrounded by my five bags, feeling the afternoon sun shining onto me and the solid granite steps. And then, like ants carrying cookie crumbs, my new friends whisked my bags to the bus stop.

The same kind hands repeated this when we arrived at Saint Angela’s College. Everyone settled in, then went into town for dinner. But after a morning of class and a four-hour bus ride I did not have the energy to go. So I stayed in. My room had a view of the lake. The sky and lake were dove gray, as was my mood. There is a particular aloneness in staying behind not because you want to, but because you can’t keep up. At least I had two treats—A beer Matthew gave me on the bus and some droë wors (dried meat sausage) we got when Brian discovered a South African store at our pee stop.

I opened the big window that looked out on Lake Lough Gill. The cool air smelled of moss and pine. I reclined on the couch. Then Edward, who works at St. Angela’s, walked past my window. I needed a wedge to keep a heavy internal door open. I got up to ask if he had any extra door stops. He said he would bring me one. But instead of walking off to get it, he stayed to tell me that he too writes, and how he loves Tolkien, and how the first and second world work. How he believes in ginger and turmeric, but not in mindfulness. How he minds his dreams. I listened while shifting my weight from one leg to the other. When he paused, I took the opening and said, “I don’t have much energy. Please excuse me, I am going to sit down.”

I didn’t sit for very long before there was a knock at my door. There stood Edward, with two door wedges in his right hand, one wood, one plastic. And in his left, a bottle of local beet juice.

“Here,” he said, handing me the juice, “This is good for your energy.” I inspected the bottle of crimson juice. He could tell that I was pleased by his gift and proceeded to tell me of other things that might help with low energy. I told him that my lack of energy is a result of a terminal illness. He didn’t quite know what to say, so he said everything that came to mind. I listened until the end of his story about bee stings that stimulate the lymphatic system that can cure many illnesses. Then I excused myself again.

The next day the beet juice went into my smoothie. But my body was not used to this quantity of root vegetable essence. During dinner on Saturday evening it felt like someone was stitching my stomach lining to my diaphragm. I couldn’t finish my dinner. Back at home, my travel companions heard about my discomfort and told me to wait outside their dorm. One came back with ginger tablets, the other with peppermint oil. The oil mixed with water soothed me to sleep. As I settled, the corners of my mouth turned upwards.

Ancient walls line roads and fields in Sligo
Hanna reads her work, assisted by ventilator and amplifier


First-hand lake, second-hand sea

On Sunday morning Rachel walked me down to the lake. It was warm enough to swim! Donna held up a towel to create a changing room for me. I was for this water like a desert was for rain. I couldn’t get in quickly enough. But the ragged rocks bit into my feet, soft from city shoes. I was afraid I’d fall. Sienna offered her flip flops. M. and C. took my hands and walked with me until I could lower myself into the bosom of the lake to be caressed by the silky water.

There are no words for how much I love to swim.

C. walked me all the way out of the lake and then returned to swim some more. I hurriedly dried myself, as I still needed to pack before we left. Again M. helped me carry my things to the bus.

The lady at reception said, “Please come back!” I replied, “I definitely will.” It was not quite a lie. My heart really wanted to. But my body, this body, is dying. Then Edward came up to shake my hand and said confidently, “I will see you again, Hanna.”

Part of our group was staying behind to go swim in the ocean—something I longed for just as much if not more than swimming in the lake. But I didn’t have the energy. I dragged myself to the back of the bus. I wanted to come back. I wanted to swim in the Atlantic and have dinner at B.’s place, then take the train back to Dublin. I wanted to, but I could not. B. came to hug me goodbye. A small storm of loss rumbled through me and spilled into public view. R. came and sat beside me, put her hand on my back, and offered me a tissue..

On Monday, back in the air-conditioned classroom of Trinity College, T. took a seat next to me. She is one of the people who stayed in Sligo to visit the ocean. When the reading ended she handed me a tiny see-through shopping bag. In the bag were three shells she picked up at the beach. I held one to my ear and I heard the song of the sea. My heart swelled and tingled like bubbles on a breaking wave.

That night I woke up in the wee hours unable to return to sleep. I reached for the large shell. It fit snugly in my hand. I rested my thumb in the smooth opening. My phone played the sound of the ocean and I imagined myself being carried.

In these two photos, Hanna and Elsa exhibit their good taste in fabric prints


Circles of care (one of them the moon)

On our second-to-last evening, we had a student reading at Books Upstairs. The shop greeted me with that good old bookshop smell. To my right was a table with all the classics bound in colorful fabric. My fingers itched for them, but I walked past and up the wooden stairs to a small salon style space with tall windows overlooking D’Olier Street.

Each student got to read for up to four minutes. I felt proud of the people around me. When it was my turn, I put on a tiny mic and ramped up the volume on my little speaker. I used my ventilator to help me take generous breaths after reading each paragraph. The audience had a printout so they could follow along. My friend M. bought me the Lady-Gaga-style mic and formatted the printout. Many friends contributed for me to afford the ventilator.

To be heard even as my words become mush and voice recedes is to be validated as a whole person.

After the reading we went to a pub. T. got up and offered me her seat. B. put half a pint of Guinness beside me. One of the mentors that I hadn’t met pulled her chair close to mine. She told me about a friend of hers who had passed away from ALS. We proceeded to have a lively conversation that helped me feel seen and heard, even though I was using mostly a pen and paper and occasionally my phone to communicate. When she got up, she wrote down her email address and said, “Please. Please email me. I am here for you in any way I can be.”

After the excitement of the evening wore off and the beer settled in, we realized that the kitchen had already closed. It was past my bedtime (I had been really good at getting to bed early!) but my hunger drove me into the street with the rest of the crew. The only place close and open was an American diner!

After a burger and fries we made our way back to Trinity, our fingers sticky with ketchup. It was after 11pm. I was grateful for B.’s arm that held me steady as we walked through the bustling street, over bumpy pebble stones and alongside a man clearly high on something. We arrived at Trinity where many of our group stood gathered under the hundred foot high stone constructed bell tower. Our program said that there would be a rose moon reading at midnight, but I had no hope of being awake then. I was barely awake as I stood there, so I headed for my bedroom.

It was, and is, difficult for me to discern how much I can do without overextending myself. Once in my room and ready for bed, I felt a longing for the gathering. So I zipped my coat over my pajamas, slipped the room key into my pocket, and went out to find them. The group of writers had formed a circle under the tower. Inside that was a smaller circle made of fresh cut roses, and in the center were candles.

I arrived at a special moment, I could tell. The circle opened and drew me in. Later I heard that moments before my arrival the group offered prayers and wishes for my health. Standing there, braided into the ring, I was given the candle and the opportunity to set an intention for the new moon. All I could think as I was being held so tenderly by this group was, “Thank you, thank you, thank you.”

In these two photos, Hanna and Elsa exhibit their good taste in fabric prints


The kindness of life in loss

After check-in for my flight home, the lady at the counter ordered a wheelchair. I waited in the designated area. The gentleman who came to get me arrived too soon. “May I have three minutes to say goodbye to my friend, please?” I asked. “Of course,” he replied. “Take your time.”

Amelia, a friend from highschool, picked me up after the residency and we had a fabulous four days on the west coast of Ireland. Both of us grew up in a world with no tolerance for tears. And now, here we were at Dublin airport about to say goodbye whilst both of us knew this might very well be the last time we saw each other. My tear tide was already rising.

“Well,” she said, “I think we can do what we were taught to do. We sweep the fact of your illness under the rug and pretend it doesn’t exist.”

“Let’s do that.” I replied. We leaned into a long hug.

I said, “Come visit in Pittsburgh.”

She said, “See you when you travel through London again.”

We disengaged from the hug and I sat down in the wheelchair. James the gentleman helper wheeled me off. I felt empty, as if a tide had pulled back leaving only a vacuum pulling at my throat. Waiting for the elevator doors to open, I saw Amelia out of the corner of my eye. She had followed us. She stood there, blue Café Nero coffee cup in hand, smiling. I smiled back.

Then the doors opened, and James pushed me into the small space. I looked back over my shoulder and Amelia appeared within view. She waved, I waved. As the stainless-steel doors slid closed, Amelia kept moving to hold my gaze until the door snipped our eye contact like scissors and the escalator started to ascend. The corners of my mouth curled down and tears began to roll. I held back a sob. When the doors opened again, I used my sleeve to wipe my eyes. I felt a warm hand on my shoulder followed by, “Are you okay, miss Johanna?” It was James’ voice.

But really it was the kindness of life, meeting me once again.


Video: Grappling with Acceptance

Hanna's voice: Grappling with acceptance


I do not come from the grieving type. We have stood at graves of beloveds who died of cancer, car crashes, murder. We didn’t grieve. We moved on. I google grief and see that it’s a process: denial, anger, bargaining, depression, acceptance. “F-that,” I say, slamming my laptop closed. “No time to be a sad sack.” Naively, I try to white-knuckle acceptance.


Hanna & Co. at Creative Mornings Pittsburgh

Every month, people in cities all over the world gather in person to talk about a common theme. These gatherings are what Creative Mornings is all about: free events that bring people together for meaningful conversation.

The theme for May 2023 was “Acceptance,” and Hanna was invited as the guest speaker for Creative Mornings Pittsburgh. Acceptance—a challenging theme for someone who has been diagnosed with ALS!

Hanna brings her usual frank honesty, joy of life, and invitation into the bigger story. She was assisted in this presentation by a group of friends: Tiffany “Ti” Wilhelm, Marc Rettig, Erika Johnson, Erika Kestenberg, Michelle King, and Seth Payne. The hosts of Creative Mornings Pittsburgh are Nathan Darity and Bridget Mullins.

It was quite a day. Watch the video below, and look below the video for a link to the text Hanna wrote in preparation for her talk.

CORRECTION: “Grief is praise”

Folks, at 4:23 in the video there is a mistake in the subtitles that we didn’t catch. And what Hanna really said is way more interesting than what you might get from the titles!

She doesn’t say, “Grief is spread.” She says, “”Grief is praise.” Then later, “I feel a lot of praise this morning, because….”

The idea that grief is praise comes from Martin Prechtel’s book, “The smell of rain on dust.” You can read a short piece from Prechtel on this idea here: Grief is Praise on the Daily Good site. 

"Grief expressed out loud, whether in or out of character, unchoreographed and honest, for someone we have lost, or a country or home we have lost, is in itself the greatest praise we could ever give them. Grief is praise, because it is the natural way love honors what it misses."


READ HANNA’S TEXT

Hanna wrote this piece in preparation for this event. It is not a transcript of the video, though it is nearly that for the parts which were read by Hanna’s friends at the event.

Download PDF of "Grappling with Acceptance"

Update from South Africa

4 October 2023

Hello dear people,
We didn’t mean to let this much time go by without an update. But here we are. And here we are with notes from Hanna on her time in South Africa, with helpful footnotes by Marc. We close with a few points on the question, “How’s Hanna?”—highlights on her condition and experience.


Hanna writes… 

I don’t know what to say about my time here in South africa. So I’ll start with the easy thing by giving you numbers. I spent 67 days here and slept in 14 different homes. I traveled far by car and plane, too many miles to count. And I visited with 80 people between the ages of 4 months and 97 years, sometimes one-on-one, sometimes in a small group. As I am writing this I feel tired and oh so-so-so-so enriched.

I was with my people and I love being with them. I had the joy of my family coming together, taking time off work, flying up, constructing temporary multi-generational homes, preparing feasts, playing games, exploring each other’s stories and life outside the playing games, exploring each other’s stories and life outside the stoep°. It soothed me in a deep way to see them step in as my ability to be a mom and companion recedes. We are cared for.

I was in my country, from visiting a township where people struggle to get by, to staying two nights in a fancy, fancy lodge. I got to be near, if not in, my medicine places—at the foot of a fynbos° mountain, at the edge of the sea with the salt spray in my face (and once falling into it by accident!), for a moment in tea-colored fynbos water, sitting at the ocean whale watching, noticing spring unfurl. The scent of dust and rain, the sight of the southern cross.

I got to have micro adventures, like my cousin borrowing a wheelchair from the hospice and pushing me on a thrilling ride on a red dirt down hill bike path°.

Marc's footnotes

Stoep
If you’re in the Western US, the porch. If you’re in the East, the stoop. Veranda, if you’re fancy.

Fynbos
An unbelievably diverse, dense, colorful, verdant mix of plants—bushes, grass, flowers—across the Western Cape of South Africa. When sage prairies of the Western US look at sexy magazines, they’re hoping for pictures of fynbos.

Thrilling ride
It is very fun to give Hanna a fast ride downhill in that sporty wheelchair. Imagine the thrill of wondering whether you can bring the whole package to a stop at the bottom of the slope. (Let’s not speak of the trip in the other direction, uphill through the fynbos.)

I got to celebrate two of my beloveds getting married and witness a community celebrating these two men’s love and union. And I got to dance with both grooms, our hearts and eyes flooding with love and laughter.

I loved being with your kids! Looking for chicken eggs in your garden. Drawing together. Holding the twin future Springboks.° Laughing together as the triplets danced. Listening to this person finding his or her way in the world. Seeing you in them and wondering who they will become, wishing I could stay to be here as they grow up.

I got to remember stories with my people. Jumping off cliffs at eighteen.° Burp-tennis championships°. The transition to post-apartheid. Our weddings and our college professors. I got to bear witness to my people’s lives: such joy and such difficulty.

I received the most tender care. My uncle making a fire° and filling a hot water bottle for my chilly feet.° My aunt sewing velcro on my pants so i no longer need a button. My cousin washing my back and my feet, holding my foot to her cheek while crying. My sister-in-law soaping up my body while making me laugh. My sister providing all the meds we need. and my mom, my always mother caring for me diligently and with such devotion, everyday she could.

Springboks
The South African National rugby team, of epic significance to the country. For one taste of the reasons why, see the movie Invictus. These twin babies were dressed in green Springbok onesies. One baby was smiling, one baby was crying, so no clear divination on the Bokke prospects this weekend against Ireland.

Cliff-jumping
I heard the story of this cliff-jumping from someone who was there, and who told the story at an amazing decibel level. He showed me a picture of the cliff. I think it was easily 100 feet high. “Every man who goes up there hesitates a long time before he jumps. Some of them decide they can’t do it. But not Hanna. She approached the edge and said, ‘Is this where people jump from?’ I said it was. Then she just took a step and jumped, without a thought about it.”

Burp tennis
I look you in the eye to make sure you’re ready. Then I swing my imaginary racket and give my best burp just when I contact the imaginary ball. Follow through is important. Now it’s coming to you. You burp-swing to return my serve. We keep going until one of us fails to burp. 15-Love.

Making a fire
With a propane blowtorch. Yes. I’m used to the idea that you try to start a fire with a single match—at least three sizes of wood between kindling and the big stuff, arranged in a careful lean-to. No stove or fireplace I saw in South Africa offered kindling. Just a stack of big logs and packs of kerosene-soaked biscuits called “fire starter.” And now here’s Hanna’s uncle, filling the stove with big chunks of wood, pushing a nozzle into their midst, and turning on the afterburner.

Hot water bottle
People kept offering me these! And I didn’t understand. We’d check into a guest house, and bottles would be waiting at the foot of the bed with little fuzzy coats on. Here’s the thing. It’s rare for a house in South Africa to have central heating. Winters aren’t cold-cold, but even so the sheets aren’t welcoming when it’s 6 Celsius / 43 Fahrenheit. So after a couple nights of Tundra-Boy prideful rejection, I tried going to bed with a hot fuzzy-coated rubber bottle at my feet. Pretty good, pretty good.

And we were the recipients of such generosity. Here, have my car. Here, stay in my home. Here, let me cook many meals for you. Here, let me spend a week with you, I’ll care for and drive you. Here, have my woolen shirt. Here, i’m going to fundraise so you don’t have to money-worry. Hey, I’ve shined your shoes. Not to mention the gifts you gave me that i will wrap and pack with care.°

I sought clarity on some past hurt, and sometimes received justification that confirmed the gap between us and other times truthful and healing words wove us closer together.

Some people could receive me in my grief and pain, walking me closer to embracing what is. Like my cousin talking me to a stream not too far from where her own baby died. He died in the same year as my miscarriage. And she held me as I deleted the pregnancy apps from my phone through my tears. Or you holding me as I wail and wail and wail for everything that I am losing. Or you staying present when I scream with frustration when i want you to hear but my mouth can no longer make words you can understand. Or when i choke and the smoothie burns like fire in my lungs and nose.

Many people, like my past self, have little practice in “grieving with the dying.” And it was difficult for me and for them too. I wrote a letter sharing my experience of feeling isolated in grief, and that led to healing conversations.

I walk away with a deep sense of connection to people and place. Having been nourished by you, I feel more ready to trust this withering away. My people in Pittsburgh have also been a stellar support system. i am returning to that home with a sense of their arms stretching across the ocean, like the light of the full moon on water, to welcome me

I also walk away with heartache. Many of the places we visited have since been scarred by floods, fires or massive waves. The camp we stayed at at Pilansberg, and hectares of veld around it, are now burnt to the ground. The Marina Beach cafe where you had your ice cream was smashed in by waves. The town of Stanford where we spent a night is under water—the worst floods in a hundred years.

Finally
The rest of this update takes a more serious tone, so I will stop these light-hearted footnotes. But before I go I want to tell you that there is one bird here that sounds just like those up-and-down slide whistles. “BEEEeeeooooo. booooEEEE?” And there’s another that yells like it’s afraid of heights.

I feel the presence of climate catastrophe, a result of our modern life. And I know that I am contributing to it with all the miles I travel and my Western lifestyle. It is ironic for me, flying back to the US soon, that the airplanes and cars I rely on to bring me home are destroying the home of my body. (Here is an article linking environmental toxins to ALS).

Maybe that is the modern conundrum. I am not the only one in this sticky taffy. We all experience, to some degree, that what secures our comfort comes at the expense of something or someone else. The inequity in South Africa is a burning sore in my heart. I want for all people to feel safe enough and have their needs met, and we are so far from it. I acutely feel the urgency of working together over racial lines to heal and restore and rebuild.

But in my experience not many people share this urgency for action with me. Many people, like my past self, do not see a way to engage in shifting things. I’m not talking about being kind to black folks, or the fact that one has black friends or that one treats your domestic worker exceptionally well. I am talking about being engaged with others, across racial lines, in the work of facing the wounding of our past and the pain of the present and finding the healing and repairing action we need now. For while it is incredibly difficult, it is also sacred healing work that restores us to each other, that gives us back a sense of belonging and I hope, a chance for a thriving future.

It is my dying wish that everyone of us might find our role to play in healing and repairing past harms, and invest in the rainbow nation and beloved community. Smile. Yes, I am serious when I write this because I love you, your children and our country and I want y’all to thrive, together. I want everyone to feel at home, to be at home and not destroy the livelihood of others to do so.

I worry that I am sounding preachy. Please listen through my words to hear the deep ache for wholeness.


Addendum: How’s Hanna?

Some notes for those of you wondering about Hanna’s physical condition, her symptoms, how her ALS is progressing.

Hanna’s back is much better. So far as I know she has experienced only one spasm during the last three weeks.

But her core strength continues to weaken. She can’t really sit up in bed by herself any more. She needs the right support, and has to roll over and kneel on the floor to get up.

She can’t walk as far as she could when she came to Africa the end of July. Maybe half as far, and then she needs support.

Hanna can no longer wash her own hair or under her arms. She feels her arms are weakening significantly. Her left hand is much weaker than her right.

Because of all this, she needs someone to dry her after a shower, and help her get dressed. Eating is becoming increasingly difficult and messy. She needs help cutting food.

This will eventually affect her use of technology for creating and communicating. She continues to write almost daily on her laptop. We have begun the process of identifying and acquiring eye-tracking tech (“I can type with my eyes!”) so she can begin practicing its use for communication, writing, web surfing, entertainment, etc.

And it continues to become more difficult for Hanna’s to communicate with speech. It takes effort for her to be clear, sometimes even with people who talk with her every day. Tools like the speech tablet and “Boogie board” erasable writing tablet are hugely useful.