Wrestling champion with Crouzon syndrome looks back on his 'hero's journey' in new documentary: 'The real flex' is 'being able to stand out'

For Ben Kjar, his unlikely path to wrestling glory while living with Crouzon syndrome was what he called a “hero’s journey.”

Kjar, who was born with the genetic disorder that affects the growth of bones in the skull and results in a craniofacial difference, is the subject of the new documentary Standout: The Ben Kjar Story by director Tanner Christensen. The film premiered at the Slamdance Film Festival in Los Angeles on Feb. 23.

The Utah-born athlete, 41, didn’t always know he would be able to join a sport, much less become a state champion three times over and an NCAA Division I All-American. The fourth of seven children, Kjar was born “almost lifeless,” his father Scott said in the film.

“He was struggling very hard for every breath,” his mother, Stana, said.

Christensen, who grew up in the same small Utah town as Ben, documented the athlete’s life in the film, which includes interviews as well as personal photos and home videos showing everything from a young Ben post-surgery to his struggle on the wrestling mat.

“He told the real story,” Ben told Yahoo Entertainment. “What we see on social media are the highlights a lot of times, and we don't see the lowlights.”

To maintain that authenticity, Christensen showed Ben’s confidence being built up and knocked down throughout the documentary. Anything else would have “just seemed manipulative.” Christensen also said he “didn’t want to get preachy with it.”

So Christensen told the story chronologically, from Ben’s difficult birth to where he is now — a happily married father of three.

‘I just wanted to be normal’

At 9 months old, Ben had his first surgery to make room for his growing brain. It was scheduled to take 10 to 12 hours.

Stana thought this would be a “breakdown moment,” one where she wouldn’t be able to care for her son. Instead, she said in the film, “I had just a blanket of warmth fall over me. Every day that he is with us, we’ll do everything we can for him.”

That’s exactly what the Kjar family did. Instead of treating Ben like a delicate object who couldn’t lead a normal life, they treated him like anyone else in the family — which included a supportive set of aunts, uncles and cousins who “didn’t recognize that he was different at all.”

However, once they started noticing the looks from other kids and adults — and how it started to affect Ben — they realized they needed to find a way to build his self-confidence.

“You feel like you just want to fit in,” Ben told Yahoo Entertainment. “For the majority of my life, I just wanted to be normal.”

His parents enrolled him in everything from piano lessons to dance to a children’s singing group. While they didn’t put Ben in a corner or wrap him in bubble wrap, what they did avoid was sports. Doctors had warned them against contact sports, specifically because of potential head injuries.

However, that’s the path Ben ultimately wanted to take.

When he accompanied his older brother to a wrestling tournament for middle-school-and-younger kids, Ben couldn’t stay out of the action. While not officially in the tournament, Ben pulled kids from the sidelines and wrestled “eight to 10” of them, according to the coach, who appears in the film. For that, Ben earned a special medal for wrestling the most people that night.

“And that gave me a sample of what it was like to feel just like noticed,” Ben said in the film.

His parents eventually relented and allowed Ben to wrestle, acknowledging how it positively affected his confidence. The film chronicles just how hard he had to work at first to simply keep up.

What the film also tackles, aside from sports, is the emotional trauma Ben had to endure as a child. To show that, Ben and Christensen made the choice to hire Colton Fielding, a child actor with Crouzon syndrome who both looked like Ben and had the same character and energy.

“You see him walking down the elementary [school] hall, we were just supposed to give a high-five,” Ben explained of his younger self in the documentary, “and he gives a wind-up slam-dunk high-five.”

Ben even sat down with Fielding’s parents to say that his role was important “to make a real impact.” The documentary would be filmed in such a way that the scenes wouldn’t be at the expense of emotionally “hurting your boy,” he told the actor’s parents.

There are heartbreaking moments of Fielding as a young Ben enduring bullying at school, and also from a father and two kids at the grocery store. At one point, he goes into his bathroom at home wanting to “take his face off.”

Ben said that to film the bullying scenes, they shot the angles separately, with the bullies’ dialogue and actions being shot at a different time as Fielding’s scenes.

“That's when Colton, the little Ben, was in another room so he wouldn't have to hear that and have that impact him,” Ben said. “Secondly, the two kids — both the boy and the girl in the marketplace — are his blood brother and sister.”

‘Hero’s journey’

The film follows a “hungry” Ben as he trains to be a middle school and high school wrestler despite his disadvantages: He was shorter than almost every opponent, small hands, short limbs, his uncle and coach Shandell Smoot say in the film.

But Ben persisted, even saying in his sophomore year of high school that he would win the state championship three times. (He had a “3XSC” patch made for his letter jacket before he even won a single one.)

Recruited by multiple schools, he eventually enrolled at Utah Valley University, where he won multiple victories and saw his face on banners around campus. It's where he also met fellow student Lacol Grant, who eventually became his girlfriend and then his wife. Their relationship was not without challenges, however.

Through tears, Grant describes her mother's negative reaction when she and Ben told her parents they were getting married — a decision the family eventually accepted.

Despite these struggles, Ben appreciates all the wins he’s logged throughout his self-described “hero’s journey.” For him, what started out as wanting to be somebody else eventually became the pride in accepting his “best self” and how he stood out.

“For the majority of my life, I literally just wanted to be normal. I just wanted to fit in,” Ben said. “And if that isn't my biggest pet peeve today.”

Today, as a motivational speaker, Ben has turned his attention to the “unique individuals out there that are just praying and wishing that if your difference was just gone — like I was, like the little boy in the bathroom, if I could just take my face off — if that difference could just go away, then life would be better.”

But, he asked, “What if that wasn't the answer?”

“What's the real flex today?” he continued. “The real flex is being ‘you version 1.0,’ having the internal peace, and then being able to stand out in your own right.”