Submitted by: Ellen Burns Deater
Family gatherings take place throughout the year, not just at the reunion. But for many of us who are far away, it is not possible to make the trip “home” more often than yearly. When the family was smaller and geographically closer, the get togethers for Decoration Day, Independence Day and Christmas were times of sharing experiences with the disease, as well as other family stories.
I remember a large family meal in Mona and Carl’s basement when they were building their “new” house. A cup of coffee was being passed hand to hand down the table to Russell. Harvey sat next to him, and as he passed the cup and saucer asked, “Where do you want it? On your head or in your lap?” With that, his crippled hands failed to retain their grip and the hot coffee spilled on Russell’s pants. Without missing a beat, Russell turned to Harvey and said, “I thought I had a choice!”
They, and other family members, discussed their symptoms and treatments. Since the Deater family now covers the country, it is less easy to have those discussions. I have received permission from some folks to share what they have learned about the disease.