WASHINGTON – Standing in front of a room full of politicians and board members,Bruce Ochsman spoke with all the grace of a seasoned orator. His low tones and deliberate manner captivated listeners. Only to be interrupted by a sporadic jerking of his neck.
A sentence,a tic,a sentence,another tic.
It's what someone might do after an electric shock. Or what an armless man might do if a bumblebee landed on his collar.
But Ochsman wasn't shocked,and he has two functional arms.
He also has Tourette Syndrome.
Ochsman,a confident-looking,middle-aged man,might not have imagined years ago,as a child with an unnamed disorder,that he'd be here. But now board members are his colleagues,politicians are his supporters and the rest of us,he hopes,will soon understand him.
About two years ago,TSA and HBO teamed up to film a documentary about Tourette to raise awareness. The half-hour program,“I Have Tourette's,but Tourette's Doesn't Have Me,” which debuts Nov. 12 at 7:30 p.m.,focuses on 7- to 12-year-old children with Tourette. It shows their idiosyncrasies and it voices their desire for acceptance.
Ochsman spoke at a reception on Capitol Hill Thursday to unveil the documentary.
“There really hasn't been anything like this done in the past,” said Tracy Colletti-Flynn,manager of public relations and communications for TSA. “Tourette has been featured in some programs,usually in a comedic or non-factual way. We've never had anything of this magnitude that will reach this many people.”
Like most of the other estimated 100,000 Americans who have Tourette,Ochsman began to have symptoms at a young age. And no one – certainly not his ridiculing peers or his ignorant teachers – could tell him why. Specialists prodded,probed,tested and failed. Finally he got an answer.
“I cannot adequately express my relief,” Ochsman said of the day he was diagnosed,when he was in college. “It was as if the weight of the world had been lifted.”
When he was seeking a diagnosis,the frustrating delay was not uncommon.
“Back then,it was almost unheard of,” said Patricia Eagen,whose 38-year-old son,Keith,was diagnosed nearly 30 years ago. She said the specialist they found in 1979 had seen only three cases of Tourette during the previous nine years.
Now it's more widely acknowledged and diagnosed,but persistently misunderstood.
Since Ochsman was diagnosed,he's done what he can to try to increase understanding. He's a national board member of the Tourette Syndrome Association,whose goal is,according to its Web site,“to identify the cause of,find the cure for and control the effects of Tourette Syndrome.”
Judit Ungar,TSA president,calls Tourette “the most common misunderstood disorder.” Most people,she says,can't understand what besides petty malice could cause a 10-year-old to elbow a classmate in the lunch line. Or what,other than intentional disruption,might compel a third grader to squeak like a mouse in the middle of silent reading.
The short answer is that Tourette causes it. But what causes Tourette? Well,they're working on it.
“We are making progress,” said Harvey Singer,head of pediatric neurology at Johns Hopkins University. “It's easy for us to say that it's inherited,but it stops there. We think it's chemicals within the brain. Lots of people are working very hard at this.”
For a disorder that's been documented since the early 1800s,it's almost laughable how little is known about it. As Singer said,the disorder begins with genetics. What triggers its onset and why symptoms vary,nobody really knows.
All that is known about Tourette,it seems,is what it does. That usually doesn't include inducing streams of profanities. But it can. A tic can be as unobtrusive as an eye twitch,as egregious as a violent flail or anything in between.
It often correlates with other neurological disorders like attention deficit hyperactive disorder and obsessive compulsive disorder. More than 50 percent of the people who have Tourette also have one or both of those,Ungar said.
And why,when a neurosurgeon with Tourette goes into the operating room,do his tics stop? Why,when a professional soccer goalie with an eye twitch gets in front of the net,do his eyes stay open for the whole game?
It's uncertain if those questions will be answered soon,but researchers are working on it.
The film is a project of Sheila Nevins,who this year will receive a lifetime Emmy for her work as a documentary maker,Colletti-Flynn said. It's reason enough for people with Tourette and those who care about them to be hopeful.
Maybe the film will show that those with Tourette are not people to fear or people to mock,but people to respect.
Jackie Baker,10, will give another speech in front of people multiple times her age at TSA's March convention,and the audience will again be awestruck by her poise as they were last year. They will be captivated like those at Thursday's Capitol Hill party were by Bruce Ochsman.
People can call the disorder debilitating,Jackie's mother,Nancy Baker,said. But as she reflected on the wowed response Jackie got from politicians and board members,she said,“or you can call it a huge asset.”