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—
at least, where before
its great shadow joined
the walls and roof and seemed
to uphold the hall like a beam.