So every so often I read a newspaper article or get a Google alert about someone with Moebius syndrome who sounds really interesting or has a fascinating life story that they’ve shared with the paper, who I haven’t heard of before and who isn’t involved with any Moebius groups. And part of me always wants to flag them down somehow and convince them that getting involved isn’t too scary or overwhelming, or that just getting together with people who share experiences is worthwhile enough reason to attend the gatherings. There’s somewhat of a perception that once you’re “successful” you don’t “need” support groups… which is true to a point, but as an adult the social connections are for me the most valuable part of being part of this community. So, I always refrain from contacting people because it’s really a personal decision, but it kind of saddens me sometimes that there are people who I would like to get to know who don’t want to be involved. I know it’s a personal decision, but as someone who can’t imagine not wanting to be involved if I had the opportunity presented to me… I find it interesting.
Natalie Abbott 