Of course Shane has continued to transform common feelings into spectacular poetry, broadcasting a forgotten medium into renewed relevance. For the rare disease community, his poem, Instructions For a Bad Day, I suspect will touch an open ear. His response to the sick person's most dreaded question (how are you?) is an endorsement to "be loud and make noise." He beacons:
"Be forthright. Despite your instinct to say 'it's alright, I'm okay' - be honest. Say how you feel without fear or guilt, without remorse or complexity."
What other invitation do we need to tell our stories, in spite of the days when it's easier to provide the expected, "I'm fine"?
You can visit Shane's website for further instruction, including his medicine, "If your heart is broken, make art with the pieces." You will also find another video version of Instructions For a Bad Day, made by high school students, and Shane talking about this and other life giving projects.