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….


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.


Update: Back pain, South Africa, and tadpoles

24 August 2023

Hello dear friends,
Here is an update that mixes words from me and Hanna. The biggest topics this month have been her back pains and her time in South Africa. To avoid confusion, I’ll put my own words in italics, and Hanna’s in regular type.

Oh, and this—people have commented on past updates saying they want pictures of the pet tadpoles and preying mantis. I aim to please. See the gallery at the end of this update.

Hanna hurt her back

In early July, Hanna had her first ambulance ride of her life. Earlier that day she and Seth went canoeing. There was a moment when she leaned back, expecting support, and there was none. Pow. Hours later the pain was still great, and it was ambulance time.

Hanna’s back problems started two decades ago. She says,

I would have occasional episodes of pain that would a couple of days. They were bad enough to land me in bed—it was too painful to move. But they would eventually wash over and away, and I would be back to an active life.

The condition worsened during the pandemic, leading me to specialists and x-rays. I was diagnosed with degenerative disk disease, and the only way to combat this condition is to strengthen my core. So I began to swim again, and do daily exercises. But ALS weakens your muscles, and Bulbar-onset ALS starts that weakening in your core.

After the canoe trip, her back would go into a spasm when she moved. Here’s how Hanna describes those hours after the canoe incident.

My spasms changed from occasional short episodes to endurance contests lasting… god knows how long. Seth says an hour. I was gripped in pain, howling, panting, shaking uncontrollably in my whole body. Snot and tears everywhere. Like a scared animal, Seth says. They finally started to settle when Seth brought my breathing machine. The shaking lasted all the way to the emergency room, where the wonderful staff provided care and a shot of valium.

The cosmic wires got crossed! I was asking for a whole-body orgasm, but with my poor speech they heard “whole-body spasm.” Thanks ALS 🙂

She jokes, but the weeks after were difficult. Try to sit up: back spasm. Someone tells a funny joke: back spasm. Sneeze: back spasm. And so on. This led to the core group of folks around Hanna to organize full-time care. We set up a schedule, and made sure that someone was there all the time.

Two falls

Every time I visit the ALS clinic, they ask this question: “Have you fallen yet?” They ask because your first real fall signifies the beginning of a different chapter. The end of mobile freedom. Your future is now splattered with grab bars, handrails, sharp furniture edges wrapped in foam, walkers, wheelchairs.

Less than a week after the trip to the ER, Hanna had her first fall. She fell in her bedroom, and landed on her back. Mercifully nothing broke. But it did re-injure her back, making it impossible to sit up and finish a meal without a spasm yanking her off the chair.

The back pain continued and sometimes spiked. Over time the episodes became less frequent and less severe. And now she is feeling better.

The second fall was in South Africa, where she has been with family since the last days of July. She fell down some stairs, arrived at the landing at the bottom of those stairs, then continued down the next flight. !! Again, we feel so grateful that the damage was marginal: a sore and swollen ankle, some scratches and bruises. Lizzie lent her a cane that she uses on and off and Elsa borrowed a walker for her to use.

Eish! (as they say in South Africa)


Hanna in South Africa

I haven’t said a peep lately. In part because I was knackered. In part because I am having a hard time typing. My left hand is becoming a rake. And in part because I am able to do less and less with the time I have. Seth is helping me dress and perform tasks like opening a tube of toothpaste.

I want to say a few things.

IT IS WONDERFUL TO BE HOME
The familiarity of the things I grew up with meets me like a receiver meets a telephone (That’s a line from Seth’s daughter Early.) The familiar brands I see in the pantry, like Black Cat peanut butter. The taste of Boerekos
(“farmer’s food”)—pannekoek, sosaties en pap. The scent of spring in a jasmine flower or a braai at the boeremark (In South Africa they don’t barbecue, they braai). The shape of familiar trees like a kapok boom. The sound of my family laughing around the dark wooden dinner table.

IT IS A JOY TO BRIDGE MY WORLDS
It has been such a delight to have my worlds meet and enjoy each other. Rachel (my niece) is 11—a year older than Early and a year younger than Otto. Together they are a wild fire and a whirlwind of excitement and laughter. My SA family have been exceedingly wonderful hosts. My mom brought us breakfast in bed, my dad braaied a beautiful Sunday lunch and now we’re at my sister’s. She ordered pizza and made one of my favorite desserts—a peppermint crisp tart.

IT REMAINS A CHALLENGE TO BE ILL
This afternoon I sat in a block of sun light. I couldn’t see the shadow move, but twenty minutes later the patch of light had crept over my legs and fallen onto the floor beside the bed. ALS is like that. My body has changed so much in the last seven months. Being back home but not being as able as I was before illuminates the change. The most difficult thing is to speak and not be understood. The second is the diminishing capacity to walk, run or climb with confidence. And tied to that, the use my hands.

The saddest moment of our trip was being at the sea. The water was rough, the waves were high. In my usual form I would run into the wildness and play in the waves like a seal. But i couldn’t. The best I could do was stand in the water, holding onto Seth so I didn’t lose my balance and fall in.

I am reminded everyday of good principles to live by, like “one day and one symptom at a time,” and “grieve what is lost and then focus on what is possible.” I remind myself that I even though I have a sense of this illness’ progression, I have no idea what awaits, including wonderful things.

CONTINUED GRATITUDE!
In the moments after I tumbled down the stairs, I felt so much support and care. I remembered Mr. Rogers’ saying, “Look for the helpers.” But my cynicism slid in said, “Ja, they are here now. But they’ll be off playing mini-golf tomorrow and you’ll be all alone.” Not long after I opened my email and saw your air miles rolling in. And I thought, “You are wrong, cynicism.”

Ya’ll’s love and support is life-giving. Thank you to everyone who helps logistically, who makes me food, who offered me their Delta miles! Thank you for financial support (my ventilator’s humidifier broke, I need adaptive undies, my home needs equipment, I need a hand brace and a retainer to help with swallowing, etc. etc. And thanks to you I am able to meet my needs.

I want to write you all love notes, but my energy doesn’t match my intention. Please take this as a personal note of thanks!


I promised you tadpoles and mantises…


Delta air miles to help Hanna?

UPDATE: Tickets secured!

After a looooong struggle and dance with Delta’s systems, which included having Hanna’s account flagged for possible fraud because of all the miles gifts that were coming in, we’ve had a breakthrough. A member of this community reached out to someone Most Senior in Delta, and within a few minutes all the needed flights were secured.

What a gift. Sheesh.

Systems can’t care. People can. I spent uncounted hours at my desk and nearly four hours on the phone with people whose ability to care is limited by policies and processes. The architects of those policies and processes necessarily work in broad strokes that cover most typical cases. The need to defend against fraud is understandable, but those defenses prevented the people I spoke with from acting on their desire to care.

Things didn’t loosen up until we spoke with someone who had the power to act outside the system, outside the broad-stroke processes. Once we found that someone, she waved a wand and Poof! Confirmed flights.

(Huge thanks to Amanda, who had the idea and follow-through to make this happen. Huge thanks to Susanna at Delta, who has a magic wand and who wields it with love.)

 

Original post follows below.


14 August 2023



Hello,

This is a short-term request for a very specific kind of support. Here’s the situation in nice businesslike bullet points, just like the ones they use in presidential briefings….

• Hanna is in South Africa with family, friends, and all the creatures and memories of her home.

• She is experiencing sporadic and quite difficult back pains. These started two decades ago, continued off and on, worsened during the pandemic. As ALS weakens her core, the back issues are becoming more persistent.

• A dear friend worked conversational magic to score Hanna a lie-flat bed in the first-class cabin to South Africa. That’s the ONLY way to make a seventeen-hour flight possible for her.

• Now we are working on making the same arrangement for Hanna’s return flight, without spending the $8,000+ required for a first-class seat. We’ve had the brainstorm of using air miles. The price in miles? 495,000.

Well, we thought we’d try.

If you have accumulated air miles on Delta or one of its partner airlines, and would be willing to donate some of them toward this possibility for Hanna, please contact Marc Rettig before the morning of Thursday, August 17.

Thank you, fellow sailors on these seas.

Marc


Short update: Hanna in SA + event summary

31 July 2023

Hello all,
This is Marc, with a short update. Some are wanting to know how things went with Hanna’s trip to South Africa, and some have asked about the event we announced in the previous update. Here’s a wee bit about those two things.


Successful landing in South Africa

Hanna, Seth and the kids have safely arrived in South Africa, They are now in the wide strong arms of family and friends there.

Thanks to the efforts of the “TLC team,” especially Erika aka “Goldie,” Hanna had a first class seat for the 17-hour flight from Atlanta to Johannesburg. Given the way her back troubles have been flaming up, this was really the gift that made the whole trip possible.


Hanna, Marc, and Ventilator introduce the evening's topic

Report on “Design for the Inevitable” workshop

As we mentioned last time, Hanna and I held a conversation hosted by the Pittsburgh chapter of the Interaction Design Association. Our friends Raelynn and Ashley, partners in the design firm Dezudio, wrote a really great summary of the event.

Read Raelynn and Ashley’s report here.

Debriefing after the event, Hanna and I shared a few ways this evening felt important.

– It felt sooo good to be hosting these profound conversations together. This has been our work for more than a decade, and it still feels right.

– This exploration of how our collective creative work might embrace the “shadow” aspects of human experience is hugely important for our times. We’d like to engage more with these questions. And we will.

Thanks to Jack Moffett and the rest of IxDA Pittsburgh, and warm gratitude to Ashley and Raelynn for writing such a great summary.


More soon; ways to help

We’ll send a more detailed update soon. I know I’ve not said anything this time about symptoms (some progression), morale (usually high), or needs (thanks to soooo many). And there are announcements coming about publication of Hanna’s writing and work. (Preview: see the new main page of okaythen.net.)

Since Hanna is in South Africa, the Pittsburgh food train is turned off until her return. Meanwhile we continue to collect and save against future expenses. You can find links for that here: okaythen.net/hanna/hanna-help.

Thank you all. Here’s wishing you good flow and an open heart in your dance with what life is bringing you.

Marc

“Establishing a relationship with grief, developing practices that keep us steady in times of distress, and staying present in our adult selves are among the central tasks in our apprenticeship with sorrow. This is the hard work of maturation. In the traditional language of apprenticeship, this would be called achieving mastery. In the language of soul, this is the work of becoming an elder. An elder is able to touch grief deftly and is able to craft sorrow into something nourishing for the community. Teacher and grief specialist Stephen Jenkinson says, ‘Hold your sorrow to a degree of eloquence, whereby everyone around you will be fed by your efforts to do so.’ Becoming skillful at digesting our grief makes us a source of reassurance and stability for the wider community.”

Francis Weller, Wild Edge of Sorrow


Update: back from Ireland, ALS is always moving

Pittsburgh people: Hanna and Marc are hosting a conversation the evening of Monday, July 17. Come join us!

12 July 2023

Hello sweet people,
This is Marc, with an update on many aspects of Hanna’s life, progress, and needs. I’m working from an outline that Hanna provided—these are my words but it’s her story. The headlines:

– Ireland was great! There is so much to be grateful for.
– ALS is always moving
– July: lots of doctor visits, and some needs
– What’s next: South Africa!


Ireland was the best thing ever!

If you’ve followed the updates you know that Hanna was in Ireland on scholarship from Carlow University. She had two great weeks of writing instruction, coaching, and community. Each morning she had a session with a mentor. Then most days lunch, naps, writing and energy maintenance filled the rest of the time. There were a few adventures and explorations in Dublin, and a few days after the workshops to travel to Sligo. What was there? Roads and fields lined with stone, goats, horse carts, green landscape, and the sea. 

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

Hanna says it felt like a vacation from ALS. She’s home now, reconnected with the logistics of living with a healthcare system that requires hours of labor and attention in order to receive its benefits. Also she’s reconnected with the wide strong arms of caring friends and loved ones.

Hanna’s lists…

Feeling such gratitude for everything that did not happen in Ireland

No COVID: Coming home and putting the unneeded COVID meds back in the medicine cabinet. The exposure of long flights feels risky, and COVID would be a huge setback. All good!
No falls: There was no need to use gauze and tape as she didn’t fall! (She had a few near misses, but the bruises on her right arm tell the story of a good catch.)
No pain: Her back didn’t hurt until she came back, so put those pain meds away.
No diarrhea, no loss of appetite or weight

Feeling so incredibly grateful for all your contributions!

– Everyone who helped getting ready for the trip.
– Everyone who contributed financially.
– People who took care of SO many details (power converter, smoothie maker, sufficient supply of medicine, communicating needs to airlines, researching and acquiring communication aids, getting pants that fit! To name only a few)
– Help with so many expenses (international phone plan, medical travel insurance, cost of being there…)


ALS is always moving: this is a time of transition

Hanna’s mom was here with her for a month, and soon after came the trip to Ireland. Now that season has ended, and as she cares for herself Hanna is finding that her body’s regression is more clear.

Her hands are getting more clumsy. She dropped her glasses, broke a very special bowl, burned herself.
Her core is weakening. Standing is becoming more difficult, which makes cooking and cleaning more difficult.
Standing up from a seated position is becoming more challenging. Getting down on the floor and getting back up from the floor is becoming really difficult.
Weight: Hanna gained weight in Ireland . Was it the baked beans and eggs at “The Buttery” or the fish and chips or the half-pints of Guinness? When she returned home, Hanna started losing weight. One response: we are adding more “Give in Kind” slots for food delivery in the rest of July.

Looking forward into the Autumn, Hanna might need to transition to more full-time care, as dressing and basic hygiene are also becoming difficult. Her space also needs adjustments to be more disabled-friendly. There are services out there for this kind of help. We are learning how to tap them and making our way through the process of qualifying and registering. And we are scoping out possibilities for a more accessible place for Hanna to live.

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


July holds many doctor’s appointments

– Pulmanologist to check in on how she and her lungs are doing
– The ALS clinic for a meeting with the whole team there
– A preliminary visit with a surgeon to discuss the feeding tube operation
– A check up with her primary care physician
– Another swallow study as her choking is increasing quite a bit
– Hopefully a consultation with a doctor about her back pain


Help in July–open slots for meals

Might you sign up for food delivery?
We’ve added more slots, which you can see if you scroll down on the Give In Kind page. It’s easy to sign up, and you can either bring food to Hanna’s house, arrange for a delivery, or send a gift card. (Do read the “Special Notes” above the calendar before you decide on the food.)


What’s next?

Hanna will be in South Africa through August and September. Seth and the kids will join her for a few weeks in the beginning, and Marc will join her in September.

In preparation, we’re working to get the right insurance in place, acquire and configure a tablet that can help her communicate in both English and Afrikaans, and generally do all we can to smooth her travel and support a joyful experience.


“How are YOU?”

A friend sent me a note last week that simply read, “How are you?” That was the whole note. I get that question pretty often. A concerned tone: “How are YOU?”

One
I walked to Hanna’s place to pick up some papers. When I arrived I found another dear friend getting out of her car to visit. As we were about to go into Hanna’s house, another car pulled up. A third friend! We went up the stairs together, and so started a kind of party. Catching up on news, eating snacks from five different countries. The door opened—it’s a fourth friend! Mixing gin and tonics. Hanna’s boyfriend Seth arrived. Conversation swirls, people clearly love each other. We discuss what games might create a level playing field for everyone, regardless of speech ability and hand strength. What if everyone has to use a speech app? A load of laundry gets done, the kitchen is swept, the tadpoles and pet mantis are fed.

We are woven into a fabric, able to hold grief and joy at the same time.

Two
I have email from a relative. We enjoy and love one another, but don’t communicate very often. She says, “I understand that life is not happy for you with the worry of Hanna and I dread to think how she feels.” In composing a response, it’s not only that I want to assure her that “life is not happy” is the wrong picture. It’s that I would like to offer her the possibility of a relationship with loss and death other than worry, unhappiness, and dread.

It is possible to accept that there are torpedoes, but refuse to sink.

I wish that woven fabric and sturdy buoyancy for her. And for you. Tight fabric, few torpedoes, and buoyant life to you.

Marc


Update: new gear, travels, and bountiful support

14 June 2023

Hello dear people.

This is Marc writing. It has been about a month since the last “How’s Hanna?” update. SO much has happened. Hanna’s mom was here much of that time, and other family has visited. There were outings—to a cabin in the woods, to “The Ruins,” to tables and porches and gardens and ponds all around. And seemingly bottomless engagement with systems and infrastructures of care.

I’ve talked with a few of you recently, and heard some common questions. Maybe those questions are a good guide for this update.

How is Hanna?
The surface, physical answer is “pretty great for someone with a terminal diagnosis.” She notices some progression of her symptoms—speech difficulty, strength, breath, energy. At the same time the routines of sleep and energy, diet and weight are paying off. She has gained ten pounds since her low point in March. Her days have many moments of joy, she’s getting things done. I imagine she would say she can’t do everything she wants or thinks she should do. But if you’re distant from Hanna you should think of her as someone still very much engaged in life.

New gear aplenty
Over the past month, a lot of helpful gear has arrived at Chez du Plessis. A few are helpful on the voice and communication front. This includes a “boogie board”—a thin, butt-simple tablet for quick messages like, “A small oat milk latte please” or, “Baie dankie, my skattebol.”

There’s an iPhone app called Speech Assistant that makes it quick for Hanna to type things which the app then speaks out loud. It uses a proper-sounding English-accented lady voice that I find pretty amusing.

And thirdly, Hanna has a voice amplifier like you might see someone using who’s leading an exercise class. It has a thin headset microphone and a not-too-big amplifier and speaker on a strap. She can wear it around her neck and be heard in a large room or at a noisy dinner without working hard to raise her voice. We learned from a speech pathologist that the effort to be heard contributes to Hanna’s depleted energy at the end of the day. This voice amplifier helps.

And there’s more! The arrival of the ventilator and cough-assist device was a big day. When you hear “ventilator” you might picture someone at a hospital hooked up to a machine that breathes for them. This is not that. This is portable, much like a CPAP device for people with sleep apnea. Hanna can use it at night with a mask to help her breathe well while sleeping, or she can use it during the day with an attachment that looks like the stem of an oversized smoking pipe. If she’s talking a lot or otherwise feels short of breath, she can put that in her mouth, inhale, and the ventilator helps by providing pressure. She gets deeper breaths with less effort. More blood oxygen, more energy, better days.

Which is all great. At the same time, all these devices are reminders that Hanna is someone who needs them. The day of the ventilator’s arrival was emotional. Difficult. It’s wonderful to have good deep breaths, it’s wonderful to be understood and participate in conversations. And it’s difficult to realize you need help with these basic aspects of life.

How is Hanna? Stubbornly joyful.

Hanna wearing a ventilator mask, Hanna sitting with mosaics
Hanna models her new mask. Hanna among the mosaics at The Ruins.

How did Creative Mornings go?
It was really great. It was moving, profound, and very huggy. They are working to edit a video of the session. We’ll post it here as soon as it’s available. Meanwhile here’s a photo gallery.

How is Hanna doing in Ireland?
Things definitely got better after the trial of getting there (here’s her story about that, in case you haven’t seen). I’m sure she’ll tell us in her own words before long. I’ll briefly report that she’s in writing workshop every morning, taking time to write outside of that, and when her energy budget allows she’s getting a taste of campus and country. I know this isn’t telling you much. Just wanted you to know that so far the trip there was the hardest part, and it sounds like the time there has been rich and rewarding.

Hanna in a hat near the sea
Hanna looking like a local

So is the diagnosis final then? Still having tests?
Yes, the diagnosis is final. There’s a rhythm of visiting the ALS Clinic every three months, engaging the clinic’s various specialists as needed in between. Clinic visits include a breathing test and strength tests as well as a standard protocol that’s repeated each visit to monitor progress of symptoms. When Hanna returns from Ireland she will begin a new medication (“tastes like bunny dook!”) which for many people slows progression and extends life.

I hope it’s okay to ask, but how’s the money situation?
The short answer: this is currently not a source of stress, and there has been incredible progress.

The longer answer: we’ve made great progress in enrolling Hanna in programs that qualify her for different kinds of insurance (hello, Medicaid), which will greatly reduce or eliminate some of the most expensive co-pays. There’s still work to do on this front, but things are falling into place.

Then there are expenses we can only anticipate without knowing when they will arise. That’s why we started the donation fund last month, and…

Holy smokes, you all. The generosity. The fund is now just short of $18,000. More than half of that came from two donors. The care, connection, and generosity has left me speechless and has touched Hanna so deeply.

I can feel embarrassed by this bounty. I talked with my neighbor about this. She is a cancer survivor, well familiar with what it’s like to navigate the finances of a serious illness. Her advice to me: “It’s too early to relax. Don’t say no to offers of help, thinking you’ve got it covered. There will come a time when the costs go up and the story is no longer a fresh concern for people. You’ll need everything you can gather.”

As a bright-side-looker, I feel it’s important to hear balancing lessons like this. So we’re going to leave the donation link up. A thorough and humble thank you to all who’ve given in this way. (And others in so many other ways!)

Thank you. Thank you.

Marc


There is a brokenness
out of which comes the unbroken
A shatteredness
out of which blooms the unshatterable
There is a sorrow
beyond all grief which leads to joy
And a fragility
out of whose depths emerges strength
There is a hollow space
too vast for words
Through which we pass with each loss
out of whose darkness
we are sanctioned into being
There is a cry deeper than all sound
whose serrated edges cut the heart
as we break open
to the place inside us
which is unbreakable and whole.
All the while learning to sing.

 

Rashani


Event: Hanna at Creative Mornings Pittsburgh, 26 May

Hanna will be speaking at Creative Mornings this Friday.

Hello,

This one goes out to those in the Pittsburgh area. Hanna will be the featured speaker this Friday for the Creative Mornings event. It’s, you know, Creative Mornings, so if you want to start your day with coffee, interesting folks, and Hanna, it all starts at 8:30am.

Here’s the place for to see the details and sign up for a free ticket.

See summa yinz there!

Marc


Update: feeling better, Mom, medicine, and a new fund

9 May 2023

Hello dear folks,

This is Marc. I see it has been a month since we last sent an update. If too much time goes by and you’re wondering what’s going on, the safe assumption is that life is clucking along like so many chickens. We’re busy each day pecking at grubs. If something especially difficult or wonderful happens, we’ll let you know right away.

Here are the headlines….

A video
Through her work, teaching, learning and travels, Hanna has gotten to know quite a few people. There are many who do not yet know about her diagnosis, and rather than sending them an email she wanted a way to speak to them more personally. So we made a video. You can see it on the front page of this site.

(Shiny coins of gratitude to Mark Knobil for guiding, shooting, and bringing big heart to the project, and to Michelle King for encouragement to choose video over email.)

General health update: good days, a new medicine
Hanna’s health has continued to improve since those difficult weeks during and after Covid back in March. She has regained almost all of the weight she lost, and adjustments in medications and eating make for better days in general—more energy, better mood.

Hanna does notice continued progress in her symptoms. Speaking is becoming more difficult. Weakness in her hands continues, though she can still type, write, and draw. She’s noticing some weakness in her legs too. This is more noticeable when she wakes up at night. Not quite trusting her balance, she uses a walker to get her safely to the loo and back.

Hanna is about to try a new medicine, called Relyvrio, which was just approved by the FDA last Fall. Like other ALS drugs of this time, it’s not a cure but has been shown to slow the progression of symptoms, which extends quality of life. That said, it tastes worse than bear flop and the side effects can be pretty unpleasant. So chickens, please strut and squawk your best on behalf of a comfortable experience for Hanna.

Mom is coming!
Hanna’s mother Elsa is arriving in Pittsburgh tomorrow, and staying almost to the end of May. Elsa is a walking generator of loving care and good cheer, so this is a great gift. (Ask her about the time she hatched a baby chick in her bosom.)

A sweet surprise for Hanna as a writer
For years, Hanna has participated in Carlow University’s Madwomen in the Attic, which “values women’s work as writers, dreamers and architects of society.” The faculty of that program have given Hanna a great honor: sponsorship to participate in a writer’s residency at Trinity College Dublin this June. They really are providing wonderful support for Hanna as a writer. Someone will travel with her and help her be comfortable and cared for through the experience.

(After seeing photographs of the library there, I’m calling it “Hogwarts for writers.”)

An impressive and elegant high ceilinged library
The library at Trinity College Dublin, photo by Dilif

Help (thank you!) and finance—a new way to contribute
Thanks so much to those who have used the GiveInKind site . Your meals and groceries make it easier for Hanna to maintain her critical high-calorie high-protein diet despite her limited budget and daily energy. Hanna says she’s aware she hasn’t sent a thank-you to each person who contributed, and intends to. If you’re reading this now, please know your help really helped!

A warm and deep thank-you to those who have sent gift cards through GiveInKind or used Hanna’s PayPal link to send her money directly. It has been a relief to have this financial cushion and permission to spend on things that make life more wonderful. Thank you, thank you!

There are now two ways to help financially.

1. Contribute to Hanna’s daily/near-term needs (or use this link if you simply feel most comfortable giving this way). There is a button on the “Ways to Help” page that takes you to Hanna’s personal PayPal link. It’s called “Send Hanna money.” For convenience I’ll put it here too.

Send Hanna money

2. Contribute to a fund for Hanna’s longer-term medical and life needs
We are starting to see some bigger expenses. For example, the co-pay for a portable ventilator and cough-assist is going to be $1,000 per month. In the Fall Hanna will be eligible for medical assistance which will cover most of that. Between now and then we want to keep her lungs strong and energy levels high, which means paying the bill.

Hanna’s employer, Fit Associates, is accepting donations and managing a fund for the bigger needs we can already see and those we can only anticipate. Fit’s role is really one of simplicity and convenience—all donations will go to Hanna in full, the books will be open, and funds will be distributed in response to Hanna’s ongoing needs. Each month we’ll update the overview statement beside the button on the “Ways to Help” page to reflect needs and progress.

To donate to the fund: bit.ly/hanna-fund 

May is ALS awareness month
May is ALS Awareness Month, and the home for that is the ALS Association. We’d love for you to know about this and participate if you can. Now that we have reason to benefit, we have been struck by the warmth, generosity, and quality of support that’s available through our local chapter of the ALS Association. We highly recommend it as worthy of your support.

Love and breadth of life to you,
Marc (and Hanna)


The wild edge of sorrow
I am reading a book by psychotherapist Francis Weller, whose whole career has had to do with grief. The book is called The wild edge of sorrow. I’ll leave you with a few quotes.

“There is some strange intimacy between grief and aliveness, some sacred exchange between what seems unbearable and what is most exquisitely alive.”


“Grief and love are sisters, woven together from the beginning. Their kinship reminds us that there is no love that does not contain loss and no loss that is not a reminder of the love we carry for what we once held close.”


“Our broken hearts have the potential to open us to a wider sense of identity, one capable of seeing through the partitions that have segregated self from world.”


“Those who undertake the full journey into their grief come back carrying medicine for the world.”


“Bringing grief and death out of the shadow is our spiritual responsibility, our sacred duty. By so doing, we may be able to feel our desire for life once again and remember who we are, where we belong, and what is sacred.”


“[Each emotion and experience] has vitality in it, and that is our work: to be alive and to be a good host to whoever arrives at the door of our house.”


“…the two primary sins of Western civilization: amnesia and anesthesia—we forget and we go numb.”


“We were not meant to live shallow lives…. …We are designed to encounter this life with amazement and wonder, not resignation and endurance. This is at the very heart of our grief and sorrow. The dream of full-throated living, woven into our very being, has often been forgotten and neglected, replaced by a societal fiction of productivity and material gain. …Every sorrow we carry extends from the absence of what we require to stay engaged in this ‘one wild and precious life.’ [Mary Oliver] And every sorrow is made more difficult to metabolize by that absence. Grief work offers us a trail leading back to the vitality that is our birthright. When we fully honor our many losses, our lives become more fully able to embody the wild joy that aches to leap from our hearts into the shimmering world.”

 

Francis Weller, The wild edge of sorrow