February 2024: How’s Hanna?
An update on Hanna's health, finances, and experience. Life with a feeding tube, shoulder pain, and progressing symptoms, along with writing, baby chicks, and endless generosity of care.
Birthday song: community magic
On Hanna's birthday, in the cold clear winter night, a group of people gathered under Hanna's balcony for a serenade.
A dying girl goes to grad school
A letter Hanna wrote to fellow students and faculty at Carlow University, describing her condition and requesting their collaboration in her experience.
Ireland, Beet Juice, Sea, Moon, Gratitude
Moments and stories from Hanna's time in Ireland, each an example of the dual bounties of loss and gratitude that come with ALS.
Video: Grappling with Acceptance
Video of Hanna's talk at Creative Mornings Pittsburgh this past May. The theme that month was "Acceptance"--a challenging topic for someone diagnosed with ALS. With the help of friends, Hanna brings honesty, humor, and profound invitation to us all.
Update from South Africa
Hanna shares rich impressions and reflections from her time in South Africa. Marc adds wise-cracks. At the end we describe some of the ways in which Hanna's symptoms are progressing.
Update: Back pain, South Africa, and tadpoles
As ALS weakens her core strength, Hanna increasingly has to cope with back pain (along with other progressive symptoms). Meanwhile she is in South Africa with dear family and all the joys of home. Her experience continues to mix this joy of life with physical difficulty and the anguish of loss. Eish! (as they say in South Africa)
Delta air miles to help Hanna?
We seek donations of air miles with Delta Airlines or one of its partner airlines, to accommodate Hanna's excruciating back problems as she returns to the US from South Africa.
Short update: Hanna in SA + event summary
Hanna has safely arrived for a month (maybe two) with family in South Africa. And friends have written a great report of the "Design for the Inevitable" event conducted by Hanna and Marc.
Update: back from Ireland, ALS is always moving
A general update: celebrating the writing workshop in Ireland, experiencing both gratitude and the concern of progressing symptoms. Next up: a lot of doctor's appointments, and two months in South Africa.