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.
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.
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?
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.