"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 ...1