Ebook: Metamorphosis: Who We Become after Facial Paralysis

Losing her smile to synkinesis after unresolved Bell’s palsy changed how Faye Linda Wachs was seen by others and her internal experience of self. In Metamorphosis, interviewing over one hundred people with acquired facial difference challenged her presumptions about identity, disability, and lived experience. Participants described microaggressions, internalizations, and minimalizations and their impact on identity. Heartbreakingly, synkinesis disrupts the ability to have shared moments. When one experiences spontaneous emotion, wrong nerves trigger misfeel and misperception by others. One is misread by others and receives confusing internal information. Communication of and to the self is irrevocably damaged. Wachs describes the experience as a social disability. People found a host of creative ways to reinvigorate their sense of self and self-expression. Like so many she interviewed, Wachs experiences a process of change and growth as she is challenged to think more deeply about ableism, identity, and who she wants to be.