Tuesday 3 February 2015
I've just found out that Lucy Glennon (@lucytweeting) has passed away.
Those of you who knew Lucy will know that she was tireless in everything she did. Even when she was very, very tired. She always somehow found that last spoon to defend a friend or fight a wrong.
She was one of the first people I got to know on social media and she would often get in touch to see if anyone was writing about a particular disability story of the day or if we were "live-tweeting" a parliament debate.
I've met just a handful of people campaigning who simply march on, resolutely, no matter what obstacles are put in their way. "Over there, in the distance" is a condition so painful or cruel, they simply force themselves to look away. It is always there, yet never there. It controls everything they want to do, yet controls nothing they need to do.
That for me was Lucy. She couldn't bear injustice and fought it however tired she was that day. If it was no-one else's "job" it would be hers to speak for those she worried were voiceless.
I suppose because of her remarkable resolve, I thought of her condition, Recessive Dystrophic Epidermolysis Bullosa as something "over there" as well. We made each other laugh on dark days, shared recipes on Twitter and discussed our dysfunctional bodies online in the hope it might inform others. But I didn't think of her as sick or vulnerable. I thought of her as a lion in a cute hat.
You can read more about Lucy's life here : http://benefitscroungingscum.blogspot.co.uk
You can donate to the Sohanna fund for EB fund here sohanaresearchfund.org