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!
Mid-meds check-in
I am doing well. I started full doses of MG meds last week, and feel slightly better. But my energy is zapped. More doctor visits in Feb and March. My three learning edges: income, a web of care, and receiving help.
Gratitude 35
GRATITUDE FOR BRINGING THE LIGHT - There was no “happy” in my birthday this year. My mind went to the dark basement where questions flutter like bats. But you. You brought the light.
Diagnosis still in process, and a challenging possibility
Details of what we learned from Hanna's EMG and battery of blood tests. This is probably not Myasthenia Gravis, but the next two weeks are needed to confirm that. There is a much more difficult possibility, uncertain but necessary to begin considering.
Gratitude 34
GRATITUDE FOR ANGER - When she comes home, the anger has congealed around her throat.
She feels vulnerable and sidelined. A second anger takes her back to childhood. The third anger spans the decade of her marriage....