Finalizing my divorce, searching for a new place to live, re-evaluating the possibility of a family—I was stressed out in November of 2009. Then my face stopped working.Finalizing my divorce, searching for a new place to live, re-evaluating the possibility of a family—I was stressed out in November of 2009. Then my face stopped working.

The diagnosis? Bell’s Palsy, or damage to the 7th cranial nerve (similar to what Justin Bieber is experiencing with Ramsay Hunt Syndrome). Though it’s technically “reversible,” 10-20% of people develop a movement disorder called synkinesis. Effectively, as the nerve heals, it regrows to too many places; more “frozen” than paralyzed, those of us in this unlucky group end up mis-wired. It affects our facial expressions and movement, and it can impact tear ducts, salivary glands, the sense of taste, and the ability to filter light and noise. For me, it also meant adjusting to an array of very different social reactions to my face and enduring years of frustratingly inappropriate medical treatment. Like any good social scientist, and as I sought ongoing treatment and support, I was ready to do some research.

The diagnosis? Bell’s Palsy, or damage to the 7th cranial nerve (similar to what Justin Bieber is experiencing with Ramsay Hunt Syndrome). Though it’s technically “reversible,” 10-20% of people develop a movement disorder called synkinesis. Effectively, as the nerve heals, it regrows to too many places; more “frozen” than paralyzed, those of us in this unlucky group end up mis-wired. It affects our facial expressions and movement, and it can impact tear ducts, salivary glands, the sense of taste, and the ability to filter light and noise. For me, it also meant adjusting to an array of very different social reactions to my face and enduring years of frustratingly inappropriate medical treatment. Like any good social scientist, and as I sought ongoing treatment and support, I was ready to do some research.