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.

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.

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.

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….

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.

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….