I was a small child when fast food restaurants took off. More than once I had 40 cents in the tight grip of my right hand and politely waited my turn in line at Burger Chef. More than once when I finally got to the counter and reached up to put my change on the cold stainless steel, the tall lad taking orders made eye contact with the tall customer behind me and ignored me completely. I was invisible to them. I waited and waited until a kind adult moved up in the queue behind me and said, "I think she's next."
Today we have drug developers, clinical researchers, big ALS not-for-profits, and the FDA all representing their own interests. They have a kind of professional altitude that often keeps them from looking at dying people with ALS directly in the eye.
When will those with ALS and their caregivers themselves be a part of every decision and transaction?
I think they're next.