BEING BRENT: What life is like when you have Tourette’s in Surrey

Spending time with Surrey's Brent Burgher may lead to a few uncomfortable moments but it will forever change the way you view Tourette’s

Surrey's Brent Burgher has lived with Tourette's since he was nine years old. Living with the disorder can be heart-wrenching and lonely

Spending an afternoon with Surrey’s Brent Burgher may lead to a few uncomfortable moments but it will forever change the way you view Tourette’s. Click here to read Beau Simpson’s column on how Burgher became a family friend.

 

SURREY — Brent Burgher grasps a flimsy, blue rope and hauls his rickety crab trap to the water’s surface.

The only thing he sees inside is a meager basket of chicken necks, his bait of choice.

“Nothing,” Brent sighs.

The 31-year-old Cloverdale resident lifts the trap above his head and heaves it back in the water.

“Let’s try it again.”

An avid crabber – his grandfather was a commercial crab fisherman – Brent says he is well known to visitors of White Rock’s iconic pier. If you’ve walked along it on a sunny day, chances are you have seen – or more likely, heard – him.

“I love coming here,” he says. “Crab fishing is my passion.”

Having Tourette syndrome means there aren’t many public places where Brent feels at ease.

But the pier is different. It’s his safe zone, which some might find ironic, considering it’s just a stone’s throw away from the restaurant where a man offered to “put him out of his misery” by shooting him in the head.

Curious tourists gather around Brent’s bucket, eager to check out his humble catch of the day, a four-and-a-half-inch male red rock crab.

Suddenly, Brent’s jaw stretches wide and he lets out a sharp, thundering shriek.

“Sorry,” he says to nobody in particular. “I have Tourette’s.”

The tourists scurry away.

“I think I scared them.”

Brent yanks up his trap and it hits the pier again with a hollow “thwack.”

Nothing.

 

STORY CONTINUES BELOW

 

A CONFUSED CHILD

For a young Brent, life before Tourette’s was good. His childhood was filled with the kinds of things one would expect.

He adored animals – horses in particular (he says his mom has always been “obsessed” with them). He loved school, his friends, family, pets and video games.

Things were fairly typical in Brent’s world – until his life changed forever at nine years old.

“I was playing Super Mario Bros. and I would start yelping. I’d start going ‘agggh!’ at the beginning of the game.”

“I was really confused. We didn’t know what it was for a while. My mom was thinking about taking away all my video games. But I’m fine with video games now,” he says with a smirk.

His grandparents first brought something called Tourette syndrome to the family’s attention after they read an Ann Landers newspaper column. It was about a child whose behaviour resembled Brent’s.

His parents took him to Children’s Hospital in Vancouver, where he was diagnosed with the rare neurological disorder that causes people to make sudden movements or sounds, called tics, that they can’t control.

Brent’s mother, Lise Brady, says the diagnosis was devastating for the entire family.

“It was a very emotional roller coaster for all of us to watch him go through this.”

Brady says at that time, there wasn’t a lot known about Tourette’s and, as a mother who took very good care of herself during her pregnancy, it was tough trying to figure out why this was happening.

“He would scream hundreds and hundreds of times a day,” she says. “It was very crippling for him.”

By the time he was 15, Brent’s Tourette’s exploded. Going to school became difficult – and violent.

“School was rough,” he says.

SEE ALSO: How a guy with Tourette’s became a family friend

“I was very, very scared. I was bashing my head on desks, going to the bathroom stall to get out my tics, screaming out loud and bashing my head against the walls to get it out of my system so I could go back to class.”

Needless to say, he missed a lot of school.

“I was beat up, bullied and teased – a lot of that.”

At 20, Brent went to live in a FolkStone Adult Family Care Home and has lived in care homes since, says his mom.

“Because of the Tourette’s, it was hard to find a placement for him and he can’t go into a group home because of his screaming,” Brady says. “But FolkStone has been wonderful about finding Brent a good placement and he lives with a wonderful family in Cloverdale – he’s been there for four or five years now.”

 

A MISTREATED MAN

In his own neighbourhood, Brent cuts a conspicuous figure.

“Everybody knows me in Cloverdale,” he says.

Most days, he can be seen – and heard – walking through communities to get to his favourite burger joints – either Vera’s at Hillcrest Village or McDonald’s on 64th Avenue.

Regularly mistreated,  Brent says he understands why his tics may exasperate some neighbours.

“You don’t want to hear screaming all day, and it’s over and over – it sounds like you’re being murdered.”

And while most people in the community are accepting of his unique traits, Brent says others say “really, really cruel things” all the time.

“People are really afraid of me. They look at me like I’m on drugs,” he says. “It’s just not fair.”

Teenagers are often the worst culprits.

“I’ll walk down the street and scream, and they’ll scream back. But they don’t understand because they don’t know what it is.”

But Brent says adults – who should know better – can be just as harsh, usually in restaurants.

Recently, he was ordering at his favourite McDonald’s when his tics flared up. Two women behind him became visibly annoyed,

“Go do that outside,” they snapped at him.

Brent says he apologized and told them he couldn’t help it due to his Tourette’s.

“They said, ‘yes, you can, now go do it outside.’”

Although he usually turns the other cheek, this time Brent defended himself.

“I told them that they shouldn’t be making fun of people with disabilities.”

Staff at McDonald’s – another one of Brent’s safe places due to its accepting employees – took notice, giving the women their money back and asking them to leave.

CLICK HERE to learn more about Tourette syndrome.

But Brent says that’s far from the worst he’s been treated.

Brent recalls a time he was eating fish and chips at a restaurant in White Rock when his vocal tics became particularly raucous. He apologized to diners and explained to them he had Tourette’s.

A burly man leaned over Brent’s table.

“He said, ‘How ‘bout I put a gun to your head and pull the trigger. Would that make you feel better?’ Then he walked out the door. That was just the meanest thing anyone has ever said to me.”

 

A POSITIVE ROLE MODEL

Brent can’t drive a car, go to movie theatres or cook – knives or a pot of boiling water would be extremely dangerous in his hands. It’s also hard for him to have friends. But Brent chooses to focus on what he can do. He refuses to let his disorder define him.

“There are so many people who have helped me in my life,” he says. “So many people I would like to thank, all my family, friends and doctors.”

Almost every day, he thanks his father for instilling this positive attitude in him.

When Brent was 14, he was in the hospital and was extremely depressed. He will never forget what his dad told him.

“He said, ‘Brent, there are people in this hospital right now who are worse off than you, so just be thankful.”

It forever changed the way Brent looks at his disorder.

“I look at it this way – there are people with cancer and other things that are way worse than what I have. I’m not dying. I just have Tourette’s.”

For him, life is looking up.

He regularly sees two doctors who specialize in Tourette’s – Brent calls them “geniuses” – and he says his disorder seems to be getting more manageable as he gets older.

And he just got his first job through Sources Employment Services delivering flyers.

So what’s next?

He’s great with kids, he says, so he would love to be a mentor and role model for young people with Tourette’s.

And while his goal is to get a “real job” one day, Brent’s real mission is personal.

“I really want to get my Tourette’s better. It might take a while but I will.”

But more than anything, Brent says he doesn’t want people to feel sorry for him. He just wants to be accepted.

And he wants people to treat those with Tourette’s with more respect and understanding.

“Don’t make fun of them,” he says solemnly.

“Don’t judge them just because they are making sounds.”

beau.simpson@thenownewspaper.com

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