One of the best-known sad stories in the e-patient movement is that of SPM member Regina Holliday, her husband Fred, and their two children. Fred died three years ago of kidney cancer in a series of failures of American healthcare, leaving a story that Regina now tells in public speaking, blogging, and – most especially – painting, through her murals and her “Walking Gallery”: people send her jackets and tell her their health story, and she paints the story on the back.
The idea of the Walking Gallery is that among the people you see on the streets there are many medical stories, but they’re invisible. The Walking Gallery brings them out where we can see them. It makes the impact of healthcare visible. There were at least six Walking Gallery jackets at TEDMED, and they got attention.
I’ve heard Regina’s story, but now it’s in the Library of Congress. Click the image at right to go to Ted’s blog for the audio (play online, download, or send to iTunes). Or click here.
A year ago our long-time friend Ted Eytan MD, who has also long supported Regina, recorded a 42 minute interview with Regina for StoryCorps, the NPR audio project. It includes details I’d never heard of what it was like to be shoved aside and belittled by clinicians, to be given little information by clinicians while Fred was dying, to be left to herself to go home and google to find the information she needs.
It’s an important story, powerfully told, with good dialog between two smart, feeling friends.
(Regina’s post last year introducing the Walking Gallery is here. If you don’t know her, explore the rest of her blog.)