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Posted on Fri, Dec. 05, 2008 10:15 PM
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I know all about living with Tourette syndrome

No one can know what it feels like for another to live with Tourette syndrome.

But I can come close. I’ve had Tourette’s for more than 40 years. Most of my symptoms concern the shaking of my head. I shake my head so hard I can hear the thud my brain makes when it slams into the insides of my skull. I shake it an average of 10,000 times a day.

Over the last 43 years that’s more than 150 million times.

I’m not kidding.

Having a physical tic is exhausting. I hurt. I’m tired. I haven’t slept well in years. One time at a fast-food restaurant I shook so hard my glasses flew off my head and landed in another customer’s Coke. Mortified, I apologized, explained, and bought him a new drink.

But as tough as my tics are, I cannot imagine how much more difficult my life would be if I had the explosive vocal tics that Brad Cohen, the subject of my article in today’s paper, faces on a daily basis. When you twitch and shake, people just think you’re weird (which I am). When you make sounds, you tend to stir up much more serious trouble.

Brad has faced a level of discrimination and ignorance I’ve never known. He’s been kicked out of movies, booted off golf courses and asked to leave restaurants. He’s had to invoke the Americans With Disabilities Act and threaten to sue just to protect his legal rights.

Recently I had the pleasure of meeting and interviewing Brad, and his wife, Nancy. Hallmark Hall of Fame brought them to Kansas City for the screening of Brad’s life story, “Front of the Class.” As we talked — and ticked — I found a man of considerable intelligence, sensitivity, wit, charm, perseverance and positivity. Knowing what he had been through and all that he had accomplished inspired me in ways I can’t adequately explain.

Suffice it to say Brad is more than a survivor. He is an ambassador, a pioneer and a teacher to more than just his students.

And having met him I am proud to call him one of my heroes.

In the coming years I will look back many times and draw inspiration from my meeting with Brad Cohen, who has proven that — with enough resolve and belief — your dreams really can come true, no matter the obstacles that stand in your way.

Thanks, Brad.

To reach feature writer James A. Fussell call 816-234-4460 or send e-mail to jfussell@kcstar.com

 

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