Oak Brook therapist lives life one way: Big
Sean Stephenson rolled his wheelchair right in front of the Dalai Lama.
“How old are you?” the Tibetan spiritual leader asked.
An understandable question, given that the 32-year-old Stephenson is 3 feet tall, weighs 56 pounds and uses a child’s car seat.
“Are you in any pain?”
No, Stephenson answered, despite the genetic disorder that caused him to suffer more than 200 fractures in his youth and stunted his growth.
The private audience with the Dalai Lama that followed was “the most magical, spiritual experience,” said Stephenson, an Oak Brook therapist.
Check off another item on Stephenson’s bucket list. He threw out the first pitch at a White Sox game while lying on the ground, a technique he practiced for three months. (He can’t walk or stand). His book, “Get Off Your BUT,” is a worldwide success with editions in Korean, Japanese, two Chinese dialects and Arabic. He is close to finishing his Ph.D.
He never got that date with Natalie Portman, but it’s moot now.
In May, Stephenson proposed to Mindie Kniss, 32, a personal coach, giving her an amethyst ring in front of friends who gathered in California for the occasion.
It’s the latest chapter in Stephenson’s remarkable life.
He was born with the most severe form of osteogenesis imperfecta, or brittle bone disease. Virtually every bone in his body broke during his birth, and doctors expected him to die.
Today, he is a successful motivational speaker who makes $15,000 to $20,000 for talks in the U.S., up to $30,000 internationally.
In just the past few weeks, he spoke in California at a Whole Foods convention and in the Bahamas to 2,500 employees of a South American electronics giant. Back home, he was followed for a week by a documentary film crew from South Korea, where his self-help message has struck a chord.
His father travels with him on business; Stephenson needs someone to lift him onto the toilet, into the car and out of the shower.
“Everyday, I am constantly humbled,” Stephenson has said.
But he’s managed, as he puts it, to live “a really big life.”
He started earning pocket money for speaking when he was still in high school.
“He’s one of the most engaging and phenomenal speakers in terms of storytelling, impact, having empathy for the crowd, being funny,” said Joe Polish, founder of Arizona-based Piranha Marketing and the Genius Network. “I’ve been doing large events with multiple hundreds of people for 15 years, and Sean is always one of the best, if not the best speaker.
“He’s never gotten jaded. A lot of people in the speaking world, it’s a speech to them, it’s a gig, but Sean really cares about his audience,” Polish said. “He really cares about people. He wants to help.”
The subtitle of Stephenson’s book is “How to End Self-Sabotage and Stand Up for Yourself.” In his private therapy practice, Stephenson specializes in 12-hour “breakthrough” sessions designed to identify the real issue blocking his client’s happiness and deal with it on the spot.
Polish said he has done considerable personal development, but a session with Stephenson “is a pretty intense experience.”
Stephenson has his critics, and they include some who’d like to see him in the forefront on disability issues.
He says that would be too limiting.
“I don’t consider myself a disabled person,” he said. “My container is not my identity. I do have physical challenges, but I don’t feel a (calling) to just work on disability issues.”
Stephenson met the love of his life, Kniss, in 2009 after she “friended” him on Facebook.
“A friend of mine in Portland suggested five different people who were doing interesting things, and one of them was Sean,” said Kniss, who specializes in coaching people recovering from heartbreak and loss. Her website is www.restartyourheart.com.
Stephenson response: “I thought she was cute, so I accepted the friend request right away,” he said.
Kniss grew up in the Northern suburbs, and suggested they meet for coffee when she came home for the holidays. She wanted to talk business. He had other ideas.
It wasn’t love at first sight. But over the next several months, the connection grew.
“I was going on other dates and thinking of her,” Stephenson said.
But he was wary. “I was protecting my heart,” he said. “She was like, ‘Look, you can’t deny what’s going on here.’”
They both come to the relationship after having done, as he puts it, “a lot of work on our own psyches.” It’s not unusual for them to sit up until 2 or 3 a.m. reading personal growth books together. They just completed a four-day retreat together in Chicago.
When they aren’t working, they enjoy working out together. (Stephenson is sure his weightlifting regimen is one reason his bones aren’t breaking anymore.) They go out for vegetarian food. They love to tease each other.
“Not a day goes by that we’re not laughing,” Stephenson said.
Since the couple met, they’ve traveled together to 12 states, Costa Rica and Mexico. Kniss has no trouble getting Stephenson in and out of a car or airplane on her own.
“I’ll just pick him up,” she said. “It would be really difficult if I couldn’t, if we always had to have somebody with us.”
Not all the reactions to their relationship are supportive. A few online commenters have been hurtful, but even some people they know don’t seem to get it.
“A friend of mine said, ‘Sean, he seems really great. It’s so wonderful you can look past his disability,’” Kniss said. “I just looked at her. I’m not looking PAST anything.”
Stephenson proposed in front of 103 of their closest friends at a gathering in Venice, Calif. Kniss knew it was coming, but not when.
The tipoff was that Stephenson was “a nervous wreck,” she recalled. He never gets nervous before speaking.
He held his iPad in front of him with the words he wrote to express his love. Auburn’s “Perfect Two” played in the background.
“I might not be able to climb like you, but with you by my side, I can float to the top of any hill, mountain or vortex ... I might not have the hands for the strongest of massages, but not a day will go by that I don’t work out the kinks in your spirit.”
And finally: “Mindie Kniss, will you grow young with me, transform the world with me and do so proudly as my wife?”
The wedding is planned for fall 2012. Stephenson, who has a tendency to “go big,” wants to stream it live. Kniss, who is a more private person, hasn’t decided.
They plan to move to Arizona, to live with friends in a one-level, accessible home near Phoenix. Last winter’s huge snowdrifts in Chicago made it too hard for Stephenson to get around.
Both families are happy with the match.
“My family likes Sean more than they like me,” Kniss quipped.
For Stephenson’s family, it will be a bigger change. He grew up with wise, extremely supportive parents — a father who quit work to become his son’s caregiver, a mother who told Sean it was OK to feel sorry for himself, but only for 15 minutes. He has never lived anywhere but the Chicago area, even for college.
“It’s bittersweet, but they’re happy that I’m living out my dreams,” Stephenson said.
The couple have small, matching tattoos on their wrists of the infinity symbol. The images touch when they hold hands.
One of the items still on his bucket list is to write a relationship book with his future bride.
“We’re big believers in setting goals and going after them,” he said. “I want my life to be an example of human potential.”
Sean’s bucket list
Sean Stephenson believes if you have a bucket list, you should tell as many people as possible. You never know who can help you. Here are some of the things still on his list:
Ÿ Be sketched in the nude by a college art class
Ÿ Do stand-up comedy with Dane Cook
Ÿ Spend a week in silence
Ÿ Live on the streets for 24 hours
Ÿ Interview Tom Cruise, Leonardo DiCaprio and Anthony Hopkins
Ÿ Attend Academy Awards
Ÿ Attend Super Bowl
Ÿ Wheel 15 miles in a racing chair
Ÿ Take a train trip with wife from New York to Los Angeles
Ÿ Open the NYSE by banging on the gavel
Ÿ Appear on Regis & Kelly
Ÿ Speak at the Sydney Opera House
Ÿ Turn life story into a major motion picture
Ÿ Speak at an abused womens shelter
Ÿ Learn to drive (and own) an accessible vehicle
Ÿ Meditate for an entire day
Ÿ Scuba dive in the Caribbean
Ÿ Observe an autopsy
Ÿ Experience zero gravity in a special retrofitted airplane
Ÿ Make $5 million in the year I turn 35
Ÿ Travel to 12 countries in Europe
Ÿ Chopper in for a stay at Burj Al Arab Hotel in Dubai
Ÿ Co-author best-selling relationship book with Mindie Kniss
— Anna Madrzyk