Moebius Syndrome and pain: neurophenomenology and the ‘lived experience of impairment’.
Extended narrative first-person accounts of the pain-experience in male and female adults with Moebius with attention given to pain facial expression.
My interest is in shared awareness of pain grounded in empathy, and the extent to which facial expression is a mechanism of empathy and second-person consciousness of pain. Given that the experience of pain as a form of human interaction is partly facial and thus mutually reinforcing, what happens to a person in pain closed permanently to pain facial conversation? Is his pain not more intense? Or, cognitive? How do Moebians typically perceive the link between pain and the threat of danger? Does facial paralysis modify the experience of pain by shaping the magnitude of pain and hence the magnitude of suffering?
1 comment
Comments feed for this article
May 24, 2009 at 4:14 am
Leslie Daseleer
I find your questions interesting. I am a 53 yr old woman with Moebius. My question would be if a person WITH facial expression were to wear a mask, would they still be able to experience these emotions? Since we are born with this condition, and have never known any different, do we learn to comensate? Are we different than people that loose facial expression as adults but have it from birth? I believe people with Moebius see, feel and reeact the same as people with facial expression…after all we can only see our differences when we look in a mirror or someone else points them out. I remember as a very young child not realizing I was any different….