Osteogenesis imperfecta: Motivational speaker Sean Stephenson uses his disorder to inspire others
http://www.chicagotribune.com/health/chi-sean-stephenson-05-may05,0,4199197,full.story His mom asked him the question that changed is life: 'Is this going to be a gift or a burden?'By Ted Gregory | Tribune reporter May 5, 2009 Guest pitcher Sean Stephenson, 30, a motivational speaker with a genetic disorder, hands the ball to John Danks at Sox Park after throwing out the first pitch in April. It was just one of many goals Stephenson set for himself. (Tribune photo by Nuccio DiNuzzo / April 25, 2009) Born with a disorder that would leave him 3 feet tall and so brittle that coughing could fracture a rib, Sean Stephenson could not walk as a child. He was racked with pain. People stared at him all the time. Except on Halloween. On Halloween, everyone looked different. His distinct physical appearance, the consequence of osteogenesis imperfecta, helped him blend in, and he loved that. But on Halloween morning 1988, he broke his leg after catching it on a door frame. His favorite day became an agonizing one. He was hysterical until his mother asked him the question that would change his life: Video Related links * Sean Stephenson: Living large Sean Stephenson: Living large Photos * Interview: 3 feet tall, but living large Video "Is this going to be a gift or a burden?" Two decades later, the man who at birth was supposed to survive only 24 hours is doing his best to convert what would seem to be an insurmountable challenge into a gift -- to himself and others. Stephenson, who turns 30 on Tuesday, is a psychotherapist and inspirational speaker. His self-help book, "Get Off Your 'But,' " was released Friday, and on April 25 he finished filming a TV documentary pilot for A&E. A college graduate pursuing a PhD in clinical hypnosis, he's toying with the idea of running for Congress, after he opens orphanages for kids with disabilities and a summer camp aimed at eliminating "self-sabotage" in children. "I embrace my life," he said one morning from his 17th-floor office in the Oakbrook Terrace Tower. "I've lived the life of a rock star." Like any motivational speaker who has clipped on a microphone, Stephenson weaves similar quips into every conversation. "Self-sabotage is the biggest problem on the planet" is one. "If someone is telling you no, you're talking to the wrong person" is another. "Compare leads to despair" and "fairness is an illusion" are other favorites. He also stresses that "connecting," which he defines as "an exchange of our humanity," is vastly different from communicating, the simple exchange of information. Understanding that difference can be one of the most powerful tools in changing people's lives, Stephenson maintains. Given where he came from, it's difficult to dismiss Stephenson as another entry in a seemingly endless supply of self-helpers in bookstores, at business seminars and online. Born in Chicago and raised in La Grange, Stephenson endured more than 200 bone fractures by the time he was 18. His genetic disorder, which also can stunt growth, left him with arms so short he is unable to scratch the top of his head. "You lose your ego pretty fast," said Stephenson, who weighs about 47 pounds and is among about 50,000 people in the country with some form of osteogenesis imperfecta. "There were things that I was pretty uncomfortable with." In cars he travels in a child seat. He needs a stick to press elevator buttons. His father routinely carries Stephenson. And when not using his wheelchair, he must scoot along the ground "like a penguin," he said. He is quick to credit his parents, Gregg and Gloria Stephenson, who live with him in Oak Brook, and his sister, Heidi, with developing his inner strength. Apart from that fateful Halloween lesson and the daily, physical support they give their son, the Stephensons emphasized a few basics: They made him focus on what he can do and dismiss what he cannot. They used an egg-timer to contain his episodes of self-pity to 15 minutes a day. During his frequent bouts of pain, they would ask him to visualize pleasant memories. And they refused to hide him. "You decide to face the music," his mom said. "He was a child first. The OI and the wheelchair come next." Added his dad: "We tried to instill a lot of positive things in his life, but he took it and ran with that. It all comes down to what someone does with what they have." Stephenson soon found that sharing his vulnerability led people to open up to him. He realized he could use that effect to help, he said, and became a motivational speaker at 17, although he served as a spokesman for osteogenesis imperfecta at 11 years old. Majoring in political science at DePaul, Stephenson worked as an intern for President Bill Clinton -- who gives a video endorsement of him on Stephenson's Web site -- and U.S. Rep. William O. Lipinski before graduating with high honors in 2001. While working as a motivational speaker, Stephenson would be approached by people who wanted to share personal problems in hopes he could provide answers. That led him to earn a degree in psychotherapy and a practice in "breakthrough therapy," in which Stephenson sees a client for an intense 12-hour session to transform the client's life. "He just had this compassion about him," said client Jamie Coombs, 26, of San Diego. Coombs was trying to break free of drug abuse and the emotional scars from two rapes. Stephenson had her close her eyes, place herself in those nightmarish moments, then asked Coombs to comfort herself, forgive herself. "I don't know what happened to me, but I was just in this euphoric place after," Coombs said, adding she's been clean since the 2007 session. "It's like I don't even know the person I used to be." A year earlier, TV producer Bryn Freedman was impressed with an interview of Stephenson she'd heard and contacted him. She started on his TV project. About the same time, Stephenson had been pitching a self-help book, which he considered a natural next step. Last year, he found a publisher and wrote the 225-page book aimed at telling readers, as the cover states, "how to end self-sabotage and stand up for yourself." A few months ago, Freedman put together a deal for a pilot that condenses Stephenson's life into 44 minutes. The 86 hours of shooting culminated with Stephenson throwing out the ceremonial first pitch at the White Sox game April 25. "I am so moved and impressed by how peaceful he is and how insightful and how joyful he is and how he has this extraordinary back story," Freedman said, "but he doesn't focus on that." Instead, he can "take the meaning of that experience and codify it for other people," to help improve their lives "in a very insightful, systematic way," she said. His message typically elicits three reactions: inspiration; self-loathing among those able-bodied folks who struggle to keep up with mundane everyday tasks; and criticism from those who see him -- and attention given to him -- as skewing an honest appraisal of life for people with disabilities. He occasionally is heckled at speaking events and in phone messages, but mostly in e-mails, by people with disabilities "because they say I don't identify with my disability enough," he said. "These are people who are not living out their dreams. "Being 3 feet tall and in a wheelchair is about 2 percent of who I am. I'm more than able. 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