Hurricanes and Science Teachers
August 28, 2009
By Mark Dunning
I'm heading off to vacation in Maine next week. Tropical Storm (soon-to-be Hurricane) Danny is going to Maine the same week, apparently. I find the weather to be a lot like Usher syndrome. It's this big mystery that I have no control over that effects my life every day. Usher, like Danny, also rudely intrudes at times, threatening to ruin my plans for the future. But what can I do? I can't control the weather.
Or can I?
You see we're still going to Maine. We'll either wait for the storm to pass or head up a little early, but we're going. I'll pack up all the yard furniture before we leave so I don't find a lawn chair in living room when we return. We'll bring lots of books and matches and candles in case the power is out in our rental cabin for an extended period. In short, we'll make do with what we have. We'll probably end up having a great time, actually, and if nothing else it will be a vacation to remember.
The point of this is that Usher is what you make of it. I can neither control the weather nor my daughter's vision loss. They both bring dark clouds and can bring darker moods. But I can control how I deal with them. I can cancel my vacations and stay inside with the windows shut bemoaning my luck or I can adapt to the situation, get out, and live on. And, as with our hurricane vacation, we'll probably still have a great time.
Like the weather, we all feel small and helpless in the face of the Usher diagnosis. I can neither change the course of Hurricane Danny nor the course of Bella's diagnosis. The only thing that would move Danny away from Maine is a high pressure system and I can't create that.
And here's where the analogy ends. We can create our own high pressure system when it comes to Usher and it's a lot easier than you think. Jennifer touched on it in her last posting. We can each create a little pressure, generate a little movement, with our actions. And they don't have to be big actions.
I talk all the time about getting the word out about Usher syndrome. You don't have to be a reporter on the Today show or know a movie producer or be a celebrity to make it happen. You can create that movement, that pressure, one person or one roomful of people at time. I've given a couple of dozen talks on Usher in the last few years. My audience has ranged from three people sitting around a conference table to a couple hundred in an auditorium. The point is, I'm not exactly Michael J. Fox when it comes to drawing power. But it all helps.
Like Danny has suddenly become in New England, we need Usher syndrome to be a household word. Right now you say Usher and people think of the singer or 'The Fall of the House of...', not syndrome. We don't need big fancy marketing campaigns to change that. We just need constant pressure. You don't have to sing from the rooftops. Jennifer gave some great examples in her last post. You just need to talk to your science teachers about Usher or give a talk at your local community college or write an article for the local paper.
We can change the course of this hurricane and we can do it using only the power of our lungs. Just take a deep breath and we'll all blow it out to sea.
