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