Update: new gear, travels, and bountiful support

A general update: Hanna is doing well, all things considered. She has a new ventilator and cough-assist device, and tools to help her communicate. The writing workshop in Ireland is going well. People have responded incredibly with financial support.

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A view of the campus at Trinity College Dublin

Traveling to Ireland

Hanna makes her first international trip since her diagnosis, and unfortunately discovers the seams between systems of support. Fortunately she was able to navigate the discomforts, but what does this say about our collective treatment of those in the margins?

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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.

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A jumbled pile of dusty broken plates

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.

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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.

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A tray of brightly colored Easter eggs

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.

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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.

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A painted collage of people's inner state and outward gestures

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.

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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.

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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.

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