Last Sunday night apparently was “bad genes” night on the TLC television network. There were two shows about people with terrible genetic conditions: one about this girl, who was “born without a face,” and the other about this guy, who was born with a condition that made his skin sluff off at the slightest bruise. They struck me as remarkably different portrayals people cope with bad circumstances.
In “Born Without a Face,” the family of the little girl with Treacher Collins Syndrome comes across as simply amazing in their unconditional love and acceptance of their little girl. From their Caringbridge journal, it appears they are Christians, which doesn’t surprise me. They ooze faith, determination, and affirmation of life, despite they incredible pain and difficulties they must face every day.
“The Boy Whose Skin Fell Off” is billed as a celebration of a full life in the face of disability. Johnny Kennedy, the man featured in the film, faces his impending death with jokes and joi de vive. Kennedy displays an angular Brittish wit of the sort that allows a James Bond character to spout wry double entendres while hanging upside down over a tub of ravenous sharks. For example, when a gorgeous Brittish actress who works with Kennedy’s charity foundation gives him a tearful hug, he sneaks a peek down her blouse and winks at the camera. We’re supposed to feel that Kennedy is living with gusto.
But the Kennedy story left me empty. The gusto seemed put on, the witticisms a shield against reality rather than a way of making peace. Kennedy seemed the true existentialist, one who understood that carpe diem leaves you with nothing as the diem slips by, that there is nothing but the grasping for its own sake. I found that sad, not uplifting, like reading Ecclesiastes as a mere statement of the way things are instead of as a pointer to meaning in God.