Dr. Hasan Orhan Akman
New York City September, 2014
I've heard for some time about Dr. Akman and his pioneering research into the nature and possible cure for APBD, Adult Polyglucosan Body Disease, the untreatable, some call fatal, genetic disease with which I am afflicted and that currently has me paraplegic with other challenging symptoms. Based on what I've heard about him and his luminous navigation of uncharted genetic frontiers, l envision Dr. Akman as a white haired older sage in the vein of Gandolf or Yoda, with esoteric thoughts visibly circling his head like streaking comets. I am refreshingly surprised (and yet, not so surprised) when we meet to see a young man who could biologically be my son. We set out into the upper east side neighborhood and speak about many things, including his family, his native Turkey and APBD. I must admit that I get a little lost when he speaks of genetic mutations and such. We make some photos in the afternoon light and head back to the gallery where my KINDSIGHT® exhibit is on view and he expresses sincere appreciation for my stories about real people. I want to thank him in return for what he is doing, for braving and forging a pathway of possibility and hope into the existence of uncertainty that those of us afflicted with APBD live with. I say to him a couple of the few Turkish words I know: "sag olun"- "Thank you for doing what you don't have to do."