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.
All day long I was challenged, brought to new places in my thoughts, confronted with the brevity within me from which I had been hiding (avoiding, which we call coping, but which doesn’t accomplish what actual coping gets done) because it wanted me to make decisions regarding my health that will be very hard to make alone. The exercises were overwhelming, and this is actually a good thing, because it was a safe and productive environment where I could work on my own perceptions. As a community leader in the Ehlers-Danlos Syndrome world I really need to take care of my own thoughts first, so that I can help others grow. You have helped me do this work, and I thank you very sincerely.
As a disabilities advocate I find it necessary to mention how very accessible (if not uniquely accessible) the entire event was, both at the workshop and at the presentation. Even the sign language interpreters tried the exercises – did you know that? They enjoyed the class, faced some of their own thoughts, and helped me communicate mine to the class, because I was able to “hear” and keep up.
I am not the same person I was before the workshop. Something in me finally understood that my work and attitude have power that can change minds, help others understand, and hopefully, feel better. Clearly you can tell that being sick has taken over my life. But I’ve got a hold of the reins and this wild horse will have to sleep sometime.
It was wonderful to be included, and I hope I can participate or help in another HoCoPoLitSo event in the future. Even if it’s for a one-night event manning a donation table, if I’m well enough, I’m in!
Anyway, in short, thanks a lot-a-lot.
Sama Bellomo is a rehabilitation technologist who writes accessible curricula to help individuals with disabilities gain employable skills on their way into the workforce. Sama attended the Lucille Clifton Poetry Series Workshop and Reading with Michael S. Glaser.