Sitting at my computer desk back home in Louisiana, I am daunted trying to fit the profoundness of October 14-16, 2017, in a simple blog post. Know that the warm, homelike sense of togetherness was there, in much greater amount than this writing implies.
When it comes down to it, togetherness was the most impacting part of this weekend. FA is such a rare, such an unknown disease, that people with FA mostly feel doubly burdened: not only do we have to battle a progressive, debilitating disorder, but we have to explain the symptoms aggravatingly often to those unfamiliar with it. (If we had a dollar for every time someone thought an FA patient was drunk, we’d never need another research fundraiser.) But being in Philadelphia this weekend, among crowds of people familiar with FA, finding people willing and eager to help in all circumstances (I especially appreciated those who offered to push me in my wheelchair down the thick carpeted hall.) - well, that was indescribably comforting.Add a comment