Event: Hanna at Creative Mornings Pittsburgh, 26 May
Hanna will be the featured speaker this Friday for the Creative Mornings event. It’s, you know, Creative Mornings, so if you want to start your day with coffee, interesting folks, and Hanna, it all starts at 8:30am.
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.