I’ll admit that I was a support group cynic in my younger days. My attitude was that I’d figure things out on my own. I just couldn’t see the benefit of sitting around a table and talking to others about my struggle with facioscapulohumeral muscular dystrophy (FSHD). In retrospect, my viewpoint was shortsighted and selfish.
My first actual experience with support groups was forming one for people who were blind or vision-impaired a couple of years after I lost my sight. The group met at a local church once a month for about a year. It eventually evolved into the Somerset County Blind Center (SCBC), a small nonprofit I directed from 1995 to 2008.
Many members became SCBC employees and continued to participate in group sessions, along with other vision-impaired people from the community. Except for an occasional visit to observe meetings, however, I stopped participating in the support group part of it. As the organization’s director, newsletter editor, chief fundraiser, and sometimes bathroom cleaner, I simply couldn’t sit still for an hour to discuss vision loss.