Hanna in middle distance, surrounded by sage brush, gazing across frozen fields and the Missouri river

22 February 2023

This is Marc, offering another update on Hanna’s health and life, and a couple of helpful links.

In this update…
– Medical update and next step
– Reflecting on “help,” and two resources: a sweet video and a helpful slogan
– Postcards from the wide winter prairie

Hello from Montana! I grew up here, and it’s still an important place in my life. Soon after Hanna and I met she made her first trip to the wide prairie, fell in love with place and people, and has been returning every couple of years. Now we’re having a winter visit to this Home on the Range.

Medical update and next steps

MRI results
In the continuing process to look under every diagnostic rock, Hanna recently had an MRI of her neck area to see if there might be something structural that’s causing her symptoms. That MRI came out clear, which is to say it did not suggest a cause. In the doctor’s language, “MRI showed mild spine arthritis which does not explain your arm weakness.”

This weakness is mostly in Hanna’s left hand and arm. Which is not her drawing hand. She says, “I can still illustrate!” More about that below.

New meds
Today Hanna received a prescription for Riluzole, a medication used to slow the progression of ALS. ALS has NOT been diagnosed, but this is intended to slow progression of her symptoms. But it’s going to take a few days to actually obtain the pills. Here in Fort Benton the pharmacist isn’t in today—he works at the liquor store on Wednesdays. Meanwhile this medication is unusual enough that they don’t keep it on hand. If they can order it, and if it isn’t too expensive, we’ll get it once it can make its way here through the snow and cold.

Next step: EMG, March 6
You may or may not recall that Hanna had an experimental period taking a medication that reduces symptoms for people with Myasthenia Gravis (MG), sometimes dramatically. She did experience partial improvement, which led her neurologist to prescribe another EMG on March 6. The first EMG (the day we first met the monster) was a general neuro-muscular examination. This one will be “a specific nerve conduction test for MG (repetitive nerve stimulation).”

ALS specialist, March 20
It would be glorious if this appointment turns out to be unnecessary, but it is on the calendar—a visit to the clinic of Pittsburgh’s highly-reputed ALS specialists.

And so we go.

Reflecting on “help,” and two resources

When someone we love gets seriously ill, most of us feel a bit discombobulated. We don’t have much practice. We WANT to help. We feel we SHOULD help. But what help would genuinely be helpfu? We WANT to express our care. We feel we SHOULD express our care. But does that make the person feel weird? Is it too much if everybody is doing that? Does talking about the illness center the illness rather than the person? But if I don’t talk about it, or if I trust their network and stay out of it, will I seem like a distant uncaring friend? That’s not me!

It’s confusing. Discombibblebating.

Here are a couple of things (thank you Lizzie and Etta!) you may find useful for de-discombibblebating.

Video: RSA Shorts animation of Brené Brown on empathy (<3 minutes)
If you’re not aware, Brené Brown is a researcher on matters of empathy, shame, and vulnerability, and quite an effective communicator. A rare combination! This short video gets to the nut of how we might source our response to people who are in a dark place.

Along these lines, here are two things I’ve heard Hanna say about things that DO NOT help.

– “Please don’t try to cheer me up. Just be in it with me.”

– “How I am shifts from moment to moment and I would prefer not to answer the question, ‘How are you?’ several times a day. If you want to reach out, just tell me that you think of me or send me something that brings you delight.”

Short essay: How not to say the wrong thing (LA Times)
This is the source of the catch phrase, “care in, dump out.” Which didn’t make much sense to me until I learned about the little diagram. Very useful!

This week or next we’ll add a “resources” section here, including a way for you all to share any resources you find helpful. AND we’ll provide a Hanna-specific tool for helpful help.

Postcards from -20F

We’re in Montana! We’re working on book illustrations!
Okay, officially it’s -1F. But the gusting North wind and 66% humidity makes -20 the “feels like” temperature. (That’s -29C, dear folks in SA.) And so we are getting a beautiful dose of wide-horizon winter.

Here is another view of Hanna communing with the sage while the wind kisses her cheeks.

Hanna walking through endless sage prairie covered with snow

Ten minutes of that, and it’s necessary to return to the warm pickup.

Aside from this beating-heart landscape and beloved people, the other reason for coming to Montana is to push a project to completion. Hanna is illustrating a children’s book called Boppa’s Bald Stories. Boppa is my brother’s “grandpa” name. A few years ago the grandkids made a game of asking, “Boppa, how did you get bald?” Every time he would answer with a different tall tale, from bears and sharks to lightning bolts and tiny lawn mowers. His wife collected the stories, they’re going into a book, and Hanna is the illustrator.

For example:

Two of Hanna's illustrations

Thank you all, as always, for your continued care; for Hanna, for those around her, and for one another. Each day is full of light and gratitude.

More soon.