Osteogenesis imperfecta: Motivational speaker Sean Stephenson uses his disorder to inspire others
His mom asked him the question that changed is life: 'Is this going to be a gift or a burden?'
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)
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:
"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."