Holy Chutzpah
"WHY IS IT, when we talk to God, we call it prayer, but when God talks to us, we call it schizophrenia?" That quip by Lily Tomlin has taken on many layers of meaning for me since 1986, the year we learned our seven-year-old son Joel had Tourette's Syndrome. We noticed it first when he started playing soccer. At practice and during games, if the action was elsewhere on the field, he would stand at his position and look directly at the sun. It was painful to his eyes, and we had warned him repeatedly that it could damage them permanently, but he couldn't seem to stop. Then came other things he didn't seem to be able to control: blinking of the eyes, facial and body tics, contortions, jerks, ritual movements, random vocalizations, barking sounds, repeated clearing of the throat; and for a while the barely suppressed urge to touch the burner on the stove when it was hot. What have I done?
Having no name for what we were witnessing, we were scared and perplexed. As I watched Joel struggle, I struggled with guilt. I wondered: Is it something I've done to him? Of all our kids, Joel was the one I had most often lost my temper with. Like his dad, he could be maddeningly bull-headed and combative. He was articulate beyond his years, and his words were often piercing and inflammatory. Words have great power in our household. I had frequently reacted to his words with words of my own. Over and over, in minute detail, I replayed mentally every confrontation we had ever had. Guilt and remorse pounded me like heavy surf. Joel was scared, too. One night as Lauretta was tucking him into his bed, saying evening prayers, he spoke in the darkness, haltingly: "Mom, you know the things I do? … I know I'm not doing them.… I know Jesus wouldn't make ...
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