After reading poems from “The Body Lives Its Undoing”, and presentations by collaborators at Town Hall on Wednesday, September 18th, I opened up the conversation to the audience. The questions were penetrating and while I did my best in the moment to respond, later that night I had further thoughts that I want to share.
How to keep hopeful when struggling with an autoimmune disease
A difficult question was posed by someone living with an autoimmune disease; she asked how to deal with hope, specifically, how to keep up hope when one is in pain and seemingly closer to despair. At the time I answered by recalling my struggles with pain and despair as a parent of a child with an autoimmune disease who, when in the thick of her treatment I had no knowledge of whether she’d get better, I also despaired. I fell off “the Hope wagon” often. And I came to think this was going to be a wild roller coaster ride and the resulting stress might sicken me in some way too.
