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Tag Archives: Ehlers-Danlos Syndrome
Events come and go. Audiences come and go. Sometimes we wonder how we are doing, if are reaching people, providing enough to help grow the world’s literary heritage person by person. This season, we received the following letter. How humbled and grateful we are.
A thousand gratitudes have flown through my mind and I am sure that the count will grow further as the events of the day really sink in.
I get out so little that I have to select very carefully my activities beyond work and medical appointments. That you have all taken the steps to include me, to be kind toward me, and to be well yourselves around me, speaks much to the ways in which simply being our best possible selves can help others be well also.
It’s not that I felt treated more specially than anyone else, but that I felt treated as specially as everyone else. It is so easy to feel different, exotic, unusual, especially with all the luggage I carry just to get through a day that it can be off-putting for me to feel like I must explain myself just to be among others. On top of that, another attendee complimented my “entourage,” that is, my friend, Jeffrey, and the interpreters, who accompanied me through the event so I could get through.
You can tell that many of my go-to sentences about my health are well rehearsed because the social stickiness of navigating life with multiple disabilities [Ehlers-Danlos Syndrome, Dysautonomia, and hearing loss] gets to be old hat somewhere around the bazllionth iteration. All of this is pretty old hat for you because you are sensitive individuals with a clear idea of what it means to be aware of how we treat people, but it’s always nice to hear that our efforts and ways of being matter. It means more when we are in those life spaces where we question ourselves, when self-assuredness is particularly thin. Save this note for that moment. If it’s not enough, call me, I’ll make more. (more…)