Torey Harrah is bored and wants to check her Facebook page. Like many teenagers, she’s obsessed with the online social network, where she spends hours every day.
“Are we done?” she asks her interviewer in a way that is both off-putting and secretly hilarious.
Asked about herself, the 17-year-old answers in quick yeses and nos, lilting mmhms and matter-of-fact head nods.
She’s a hard nut to crack.
[youtube]http://www.youtube.com/watch?v=li8lLQUDkx8[/youtube]Casting director and filmmaker Tisha Blood knows: “As a documentarian, I can tell you, she’s a tough interview.”
A family friend and neighbor, Blood has known Torey since she was scampering around in princess dresses, and she spent 10 years making a documentary about Torey.
“She has impeccable comic timing and the best sense of humor I’ve ever seen,” Blood says of the Woodrow Wilson High School junior.
But Torey is shy because of Apert syndrome, a rare craniofacial abnormality that has cost her 56 major surgeries, most of them involving her head and face. When she was an infant, Torey’s appearance was so shocking that her mother, Andrea, 25 at the time, tried always to keep her covered in public.
Today, Torey’s face looks pretty normal, but it’s not. Doctors at Medical City removed one of her ribs to build cheekbones. (“I still miss that rib,” Torey deadpans.)
And when she was about 6, she had a surgery that pulled the center of her face forward. The surgery required her to wear an adjustable device, called a distraction, on her head for three months after the operation.
“Torey’s Distraction” is Blood’s movie about Torey and the surgery.
“It shows all the emotional trauma she went through because at 6 years old, she didn’t really know why we were changing her face,” Andrea Harrah says.
The distraction made comforts like sleep and food elusive. Torey became sick while she was in the distraction, and she had to be rushed to the hospital for an emergency tracheotomy.
While it was happening, it was just life, Andrea says, and they dealt with it as it came. But “it’s hard to watch the movie,” she says, because “when you see it on the screen, it’s totally different. I get emotional, and so does Torey because she doesn’t like to see me cry.”
Torey’s mom and dad, Randy, funded the film with Blood and other friends, and they are entering as many film festivals as possible.
The movie took the Audience Choice Award at the Austin Film Festival last year.
“Torey affects everyone she meets,” Blood says. “There’s something magical about her and the way she sees the world.”
When Torey was little, she had a happy, outgoing personality. But as she realized her differences, she withdrew. Now she’s something of a loner, and she likes to stay inside most of the time. There are a lot of places she refuses to go because she dreads how people will react to her looks.
The movie is compelling because most people know what it’s like to feel outcast, misunderstood, alone, ugly. And most people don’t have craniofacial abnormalities.
“People don’t normally get to look behind the door the movie opens,” Blood says.
The movie was as “labor of love” that Blood, a business owner who was a single mother at the time she started filming, worked on in her spare time. In 2004, she decided to stop work on other film projects until she finished “Torey’s Distraction”.
“I had no idea it would be such a long process, but I always came back to it because of the story,” she says. “I could never let it go because I started really understanding their world.”
The film features two other mothers and daughters with Apert syndrome who were also being treated at Dr. Jeffrey Fearon’s Craniofacial Center at Medical City Dallas.
Andrea Harrah says she wants to get as much exposure for “Torey’s Distraction” as possible so that more people will understand what it’s like to live with a craniofacial abnormality. They expect to begin screening it at high schools throughout Dallas soon. They’re also trying to raise money to send kids to the Children’s Craniofacial Association’s annual camp, which is known as Cher’s Retreat.
“It’s a life-changing experience,” Andrea says. “Torey’s gone for three years, and it’s made a huge difference.”
The family lives in a spacious Prairie-style home on Munger that is undergoing renovations. Andrea and Randy bought the house 15 years ago after the family moved from Florida to Dallas so Torey could be treated by Dr. Fearon, and they chose the house because of its huge attic.
“My dream is to finish out the attic and make guest quarters so that craniofacial kids and their families can come and stay with us while they’re in the hospital,” Andrea says.
“Life is hard for these kids. I’m just trying to make it a little easier for them.” — Rachel Stone
Click here for a video. And find more information at toreysdistraction.com and craniofacialcenter.org.
