How to get through the first 17 hours after learning you have ALS
Written as a step-by-step how-to guide, this essay documents Hanna's experience through the first few hours after hearing her diagnosis of probable ALS.
Update: feeling better, Mom, medicine, and a new fund
Hanna's energy and mood continue to improve, though her symptoms are also progressing. Her mom visits soon, and Hanna has received a wonderful honor as a writer. We have an update on finances, and two ways to help financially.
Eat or be Eaten, and Easter
Hanna reflects on a streak of incredibly difficult weeks, doubly pressed by health issues and "obligations" of self-care. Eat or be eaten. A return to better health doesn't remove all of the challenges, but it does bring firm resolve to LIVE.
Update: Resources and tools, angels and spring peepers
Hanna is feeling much better than she was when we last updated you. As she and her circle settle into life with ALS, a wealth of support and resources have presented themselves. The sleep and breathing lab is delivering energy-restoring tools, and life continually offers episodes of joy.
Caring? Feeling cared for?
Created for a writer's workshop, this example of "hermit crab writing" uses the form of a bureaucratic questionnaire as the vehicle for difficult questions about needing and receiving care.
Update: Visit to the ALS clinic
A summary of the first visit to the University of Pittsburgh ALS clinic. The nut: Hanna's diagnosis is 90% for ALS. They'll pursue the other 10% while beginning treatment to slow progression of symptoms and prolong life. Also in this update: living with this hard news.
Update: Hanna’s week
Hanna reports on a difficult week: feeling her failing abilities, getting Covid on the flight from Montana, feeling the threshold of disability.
An update, ways to help, images and a poem
A quick update on tests and ways to help, and a poem to accompany a moment from Montana.
Notes on help, meds, and a postcard from -20
Hanna is about to start a new medication, and an MG-specific EMG test happens in early March. We offer some useful resources on "help," and send greetings from Montana, where it is -20F.
Update: How’s Hanna, and doctor stuff
The diagnostic process continues, and meanwhile life goes on. I find the "a monster has moved into the house" metaphor to be useful. Details about ways to support Hanna are coming soon!