MY LIFE WITH MOEBIUS DEPARTMENT
So the other day I went in the morning to get my hair cut. I went to my usual place; thought this time I got a hair stylist who had not done my hair before. Anyway, I'm sure she noticed my Moebius differences right away, but at first didn't say anything about it. She just chatted about the weather, etc. Until, that is, it was time to trim my mustache.
She then asked me to move my lips in a way that would make it easier to trim the old 'stache. I explained to her that I couldn't. And she didn't mind; she was very good about it. In fact, instead, it led me to explain exactly what I couldn't move my lips; to explain Moebius, of course. And it led her to ask some questions about it and to seriously want to know more about it. All good, in other words.
What was interesting, though, were some of the questions she asked about. I think the questions she asked probably reflected what many in society think when they encounter Moebius. First, when I explained what it was, she asked if I had to take a lot of medicines and drugs to combat it. Well, no, I answered. Then, since we'd already discussed the fact that I had a wife and son, she asked me if my son had Moebius. Nope, I answered; and I explained that Moebius doesn't (necessarily) work that way. So then she said that all this was very interesting and that she was glad to know about it. "I have to admit, I've never heard of that before," she said concerning Moebius.
And of course most people haven't. But it's one thing we can do--raising awareness, one person at a time. It's what I tried to do as my fall semester of teaching began this week, too; on the first day of class, I devote about 5 to 10 minutes to explaining to my students that I have Moebius Syndrome, what it is, and so forth. I imagaine most of them have not encountered it before, either. But now they have. And that's a good thing.
"Life is like a game of cards. The hand that is dealt you represents determinism; the way you play it is free will."--Jawaharal Nehru
Each time we tell someone about Meobius they say: I've never heard of that before (including health professionals) - but then, i'd never heard of it before our son, so....
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