I am devastated. It makes me so sad and angry that skin conditions can be fatal.
Megan was talented - she interned in the disabilities department of the White House, and wrote for policy websites. She was so smart and funny - and we always made light of our shared experience of rude encounters with strangers, something we had in common. Megan wrote a lot about life with EB, asserting her (our) right for respect.
We'd never met in person but I felt we shared a closeness, discussing difficulties of being an adult with a rare condition when so many others speak for us. Scrolling back through our messages this morning reminded me how much she's done to shape attitudes about skin conditions (both externally and in skin condition communities). I'd often message her to seek her opinion - I valued it so much. She really *got* disability politics and pride, questioning the way skin conditions are perceived, and reiterating she did not need saving. She was one of the few who share my strong opinion that questions about our appearance are intrusive.
Here's an excerpt from my favourite piece of her writing.
"Though Individually uncomfortable and at times, even amusing, these incidents collectively have left scars on me as real as the ones on my body. Rather than heal me as they intended (and you know the old maxim about good intentions), they helped break my self-esteem. They brought forth questions I’ve sought to stifle, questions that repeat in my head with sadistic rhythm when I’m out in public. Do I really seem that broken to people when I walk out the door? Does my body project a fate seem so grim that I actually need saving? Every once in a while I have to actively remind myself that what happened to me was an objective case of a genetic splicing error-not the Devil’s handiwork."
Do take the time to read her blog. She was such a good writer. So intelligent.
Rest gently, Megan. You are so missed. You are far too young to leave this earth.
I hope everyone who knew Megan is doing ok. Sending my love to her family and friends.
In the past nine months, three feisty, beautiful, intelligent, world changing young women I've known and loved have passed away. It's not fair. Life is so precious.