Community of Souls

“I thought I was the only one.”It was a surprising thing to hear from Schuyler. It never occurred to me to think that she really believed she was all alone with her Polymicrogyria, and on an intellectual level, I know she understood that she wasn ’t literally the only person in the world with it. But it wasn’t hard to understand why she would feel that way, or why she now understood just how very untrue that feeling was.She quietly made that statement to me as we sat at the Polymicrogyria Family Conference in Denver last weekend, listening to the keynote address by Australian writer, speaker and life coach Natalie Roberts-Mazzeo. Natalie has been writing about her daughter Chiara online for a number of years atChiara ’s Journey andMiracle Mama, and her keynote address to the conference was powerful and deeply moving. More to the point for Schuyler, however, her story of her five year-old daughter with PMG felt very, very familiar.All the stories we heard felt familiar. And it was in that familiarity that the real value of the conference could be found.I ’ve written about PMG a great deal over the years, so I won’t go into it too much here. It’s not as rare as we believed it was back when Schuyler was diagnosed in 2003, when her doctors found fewer than a hundred confirmed cases, but it’s still rare enough that we are unlikely to even meet p rofessionals who know about the disorder, much less another person with PMG, unless it’s at an event like this one. S...
Source: Schuyler's Monster: The Blog - Category: Disability Authors: Source Type: blogs