Longtime readers will recognize this story, but I’m posting it again here–and on Medium–to honor Moebius Syndrome Awareness Day:
When Burt Minow was born in 1922, his disability — partial hearing loss and complete facial paralysis—was immediately apparent. His mouth was frozen in a sort of frown, and he could not suck on a nipple to get milk. Doctors advised his parents to put him in an institution and forget about him. Continue reading →
I hunkered down at the library this week, working on a couple of long-term projects.
I kept one eye on Twitter, though, as I always do, and wanted to share what distracted — and inspired — me this week:
Radiolab: Worth — what would you pay for another month of life? How about a year? They get into the debate about Solvadi, which I find fascinating, and wind up talking to patients, “the people who aren’t at medical conferences.” Thanks to Mike Evans, MD, for tweeting the link.
I respect secrets. When my grandmother died at age 96 and a half, her final words were: “Erase my email.” Why? I don’t need to know. And she is not someone you want to cross (present tense — her spirit is still here with me, urging me to live a big life.)
But I am also a voyeur. So I visit PostSecret and greedily drink each one, like I’m doing shots of other people’s truth.
PostSecret’s creator, Frank Warren, opened a door for people to creatively reveal themselves to, essentially, themselves. And, when everyone rushed in to share, he let us all in on the biggest secret: we are all imperfect, we are all human. Continue reading →
I have a new essay up on Medium: Thank you, Sean Parker. I tell why I’m so grateful to him for his gift to food-allergy research and l share a little bit about why I don’t read comments on food-allergy stories.
Forty-five makers, thinkers, designers and doers gathered in Cincinnati for a two-day meeting to kick off “Phase Zero” of a new initiative to imagine a new system of care for people living with Type 1 diabetes (T1D). The best way I can describe the group is that everyone was “game,” meaning up for anything, silly or serious.
She emailed me with a very intriguing question, so I’m sharing it here for discussion:
Moebius Syndrome is a highly visible, but “unrecognizable” condition. That is, strangers immediately notice that our faces and speech are different, but they don’t know the reason for the difference. They don’t understand the cause, nature, or accommodations needed for it. This makes Moebius more challenging socially than disabilities that are visible but better recognized (i.e. using a wheelchair). Continue reading →
Inspired by a call for essays about e-patient travel stories:
There is an unspoken code at airport gates. Don’t touch me. Don’t touch my stuff. Don’t step in front of me unless you have a heck of a good reason, especially if I got here before you did. Continue reading →