Thursday, January 3, 2013

A Fate Beyond Horrible

A mother in our area recently came to me for advice. Her elementary-aged son was under evaluation for Tourette's. During the conversation, she went off into an emotional rant about how awful it would be were he actually diagnosed. Truthfully, I was caught quite off guard. One would think it a fate beyond horrible.

Is it? I can certainly think of far worse. A Tourette's or even an Autism diagnosis doesn't quite carry with it the horrors known to those whose children suffer from Cystic Fibrosis, Neuroblastoma, or a whole host of other truly tragic diagnoses. Maybe I'm biased, but I can think of many things that frighten me far worse than a Tourette's diagnosis.

If anyone gets it, I get it. Tourette's is, at best, damned inconvenient. It's one of a short list of disorders where the patient takes medication to make others feel better. It embarasses parents. It creates awkward social situations. It carries with it a very real, but ever decreasing level of social alienation. Still, I'm not sure all that adds up to horrible. It hasn't for me and isn't for Nathan.

I covered the benefits of having Tourette's in the early days of my writing. Maybe it's time for a revisit. I will reiterate the point that if a cure is offered, I'm not interested. I like some of the things that Tourette's has given me. I like how being "different" has shaped me as a person and is shaping Nathan.

Upon realizing that she'd effectively declared how horrible it would be for her son to be like my son and me, she attempted to recant. The message had already been clearly delivered. Words, like bullets can't be recalled. Fortunately, opinions like hers have become the vast minority in both Nathan's world and my own.

Tourette's is what it is. What it's not is a fate beyond horrible.

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