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The Gift

December 21, 2010

by Mark Dunning

I spend a lot of time in this blog writing about the desperation of Usher syndrome. I write about the fear that we all feel, the fear of what the disease might one day take from us. But it's the holiday season s and for today, I'd like to talk about the flip side of that fear. I want to talk about the gift of Usher syndrome. First a quick story:

I met a fascinating man in London last week or, rather, I was reintroduced to him. I was traveling on business. My company's home office is in the city. I have been with the company for 12 years now and when I first started, the Chief Financial Officer was a volcanic man, legendarily crass and vicious. Staff of all levels feared approaching him for he was wound so tight that the mere quiver of a voice could cause him to explode. When he was terminated a few years later for telling the Chairman to perform and unnatural act on himself a few too many times, there were streamers in the sky and Eewoks dancing in the trees. Tears were shed, but they were born of joy and relief. A time of great evil had passed.

So imagine my surprise when I was invited out by a large group of those I have worked with for a long time to go have a few pints with the very man described above. Stranger still, they were positively giddy at the prospect. He is a changed man, I was told, you will hardly even recognize him.

Well, I recognized him as soon as we walked in to the pub. He still had the same salt and pepper hair, the same glasses, the same roundish physique. There was only one noticeable difference. He was smiling. A lot. And he greeted everyone warmly, like he'd been anticipating the evening with relish. Before long he and I had a chance to talk alone and he told me his transformational story.

He had never liked his old job. Never liked the pressure. It wore on him every day, cranking him tighter and tighter and tighter until he could not help but explode only to be wound up again. After he was fired, he tried similar positions, always with the same result: pressure, explosion, and termination. Finally he reevaluated his life and thought about what he really enjoyed, what he really wanted to do, what would really make him happy. And the answer was clear.

He wanted to go to the pub, drink beer, and talk with friends.

That's it. That's what he enjoyed most. Well, it's a little more than that. He didn't want to just slink off and become some drunken sod propped on the corner bar stool. He wanted to experience lots of pubs and lots of beer and make lots of friends. He wanted to talk philosophy and sports, politics and love. He wanted a fulfilling life surrounded by people he enjoyed. He wanted to be happy.

His termination was the catalyst that committed him to action, but it was not for several more years before he found his opportunity. His epiphany came in the form of a contest. It was a beer tasting contest that included an essay and speech on why you liked a particular beer and what, exactly, beer meant to you. The winner was to be named 'Official Beer Taster for the City of London'.

He entered, spilled his passion before all to see, and won. Now he writes a blog on beer and is paid several thousand pound a year to travel the city, visit the pubs, and have a few pints with friends. He is invited all over the world to beer festivals and brewery openings. And he is undeniably changed for the better. He is now one of my heroes.
But I have lots of heroes these days for his story is not unique, at least not in the world of Usher syndrome. You see we, too, find ourselves reevaluating the rubble of our lives. Yes, the man above chose his stresses while we had ours thrust upon us, but it doesn't really matter what started the fire. All that matters is that the house burned to the ground.

In blowing away the ashes, I have uncovered the most amazing stories of success. People with Usher syndrome are not supposed to be able to ride horses or to dance or to sing in a chorus, but my daughter does. People with Usher are not supposed to travel Europe or speak multiple languages or be accepted to study at University College London, but I had lunch last week with a young lady with Usher who did. They are not supposed to pack up a van with other young deaf people and drive from the UK to India (yes, India!), but I dined last week with a woman who had. They are not supposed to climb mountains or change the ways of the US Senate or win awards for their charitable efforts when they are still teenagers or be invited to stand beside the President at a bill signing, but I know people with Usher who have done those things, too.

This past year I have traveled to Spain and Denmark. I have dined with friends in London and had a barbeque on a beach in Seattle. I have made new friendships with people in Taiwan, Australia, Greece, France, Israel, the Netherlands, Sweden, and Germany. I've watched my daughter speak at MIT and been taught genetics by professors at Harvard. I've run a road race and seen my daughter win a blue ribbon in a charity horse show. None of it happens without Usher syndrome.

I hope you don't take the above paragraph as pretentious or promotional. It is simply to marvel at my family's good fortune. My life, my daughter's life, and those of the people described above are deep and fulfilling not in spite of Usher syndrome, but BECAUSE of Usher syndrome. Like my friend the beer taster, we all were forced to reevaluate our lives and to think about what we really wanted to accomplish. We all recognized that time is short and that the time to act on our dreams is now. Because time IS short. It's short for all of us, regardless of whether we have Usher or not. The clock on our mortality is always ticking. It's amazing how few people recognize that fact and how many fewer act because of it.

The beer taster and I talked about that over a pint. We talked about the massive river of commuters we saw in Victoria station plowing from somewhere to somewhere else. We wondered how many of them were really going where they wanted to go and what it would take to cull them from the herd.
For him it took a conflagration to cut him loose. For my family and me, and the many, many, many people I have been blessed to meet, it was Usher syndrome that changed their course. We all know the potential dangers that lurk out there, but at least for today we should see the good in Usher syndrome. It builds more families than it tears down, welds together more people than it separates, and enriches more lives than it ruins.

I still would not choose Usher syndrome for our family but I'm thankful we received it as a gift.

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