Columns

Pondering the ‘what ifs’ in life with rare disease

I spent a small fortune on cute books for the kindergarteners I taught at Brockman School, then a self-contained public school in Columbia, South Carolina. The students, many with severe disabilities, delighted in hearing the animated voices of the stories I read to them. My own…

Finding balance between excitement and routine in life with SMA

In every popular sitcom, there’s always a central setting for the characters to congregate. For some it’s a workplace, such as the Dunder Mifflin branch in “The Office” or the government building in “Parks and Recreation.” Other shows feature a shared living space, such as the geek-decorated apartment in…