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Izenberg: A rare disorder shapes an extraordinary man



He was my student one summer up at Robert Morris College, near Pittsburgh, where I hosted a weeklong seminar that had all the intensity and none of the charm of a journalistic boot camp. But what I remember most about that time had nothing to do with the classroom. It had everything to do with the cool of the Pennsylvania evening, when I would stand on a hill overlooking the floodlit basketball courts and hear his laughter soar high above that of all my other students as they played the game.

He played it with passion.

He played it with joy.

His name is Scott Chesney, and he played it from his wheelchair.

That was 11 years ago.

Now fast-forward to the present. He is sitting in front of 200 kids, ages 8-15, at a basketball camp at Seton Hall's Walsh Gymnasium this past week and every one of them has his eyes fixed on the wheelchair. Basketball was once Scott Chesney's game, and at Verona High School his future appeared to be a magic mural of tinsel and popcorn and toy balloons.

He was 15 years old, and in his mind's ear he could hear the noise of basketball crowds as yet unborn, building along what he knew would be his personal horizon. And then, without warning, nothing -- nothing but dreams deferred and adolescence denied.

It began with a numbness in his left foot. It climaxed in the paralysis of both legs. It stretched on through 21 medical procedures and a three-hour operation and finally a diagnosis. And even the diagnosis was a matter of chance. A visiting South African doctor had seen one case of this rare and obscene disorder. Had he not come to Columbia Presbyterian Hospital that month, Scott Chesney might never have known why he never walked again.

There have been 12 documented cases of foix-alajouanine syndrome -- a malformation of blood cells that can hide in a body for a lifetime with no damage or can erupt without warning or provocation like an anatomical Vesuvius. In eight of those previous cases, the eruption was in the brain and the victims died.

"Mine was sort of upside down," Chesney will tell you. "That's why I'm alive today."

He has lived in his wheelchair for 16 years, but he refuses to let the wheelchair live in him. Instead, on this day at Seton Hall he will tell the kids about what he calls "finding the zone on and off the court." He says things like, "Dream to believe and work to achieve"... all of them clichés and catchphrases except for one thing:

Scott Chesney has lived them.

He puts the kids on the court blindfolded and tells them to dribble, and they can't. But he tells them they can. He tells them to deal with what they have and forget about what they don't have.

"Go into the basement, turn out the lights and dribble," he says. "Learn how to visualize and you will achieve."

At first they look at him and think, "How can he tell me this? His own dreams were shattered and never achieved." Chesney knows what they are thinking and he tells them out loud, "When dreams are shattered it's because other, brighter dreams are going to come along in their place -- but only if you make them happen."

He talks about challenge. He tells them to go home and try to put on a pair of pants without moving their legs, as he must. He gets a call from one kid:

"I did it, Mr. Chesney. It took me three hours."

He sugarcoats nothing. He tells them everything, which is why they listen. The kids are more honest than the adult groups he addresses.

"Do you sleep in your chair?" an 8-year-old wants to know.

"I love them for that," he says, "because they do not worry about being politically correct. They are not uncomfortable with people like me. If they can harness that honesty with their intellect, then I've helped them free themselves and done something good."

So how does this happen? How do you survive youth destroyed yet never forget how to laugh? How do you look at your retired basketball jersey on the high school gym wall and come to terms with what might have been?

Don't let him hear you call this a tragedy. Call it a journey, and the one that brought Scott Chesney from there to here is almost surrealistic when you analyze it.

Begin at the beginning. His parents are florists and they have no health insurance on the morning Scott tries to get out of bed and staggers because he thinks his foot is asleep. Verona and Cedar Grove hold a Scott Chesney Day. They make some money for the bills. More important, an anonymous donor hears about it and sends a huge check. Then he does more.

He becomes a part of Scott Chesney's life. He is there in the hospital years later when Scott's father dies. He is there, encouraging him in his work for the Miami Project -- a group desperately trying to find a cure for paralysis. He is there through just about everything, and one day he says to Chesney:

"Have you ever thought of traveling to study this thing, of seeking all the knowledge no matter where it is? I'll fund it."

There are actually two journeys.

The first covers 15 countries in 15 months. The second, which is funded by corporations to whom he has begun giving motivational speeches, covers 26 countries in a year. What started as a research project takes an unexpected turn. It begins far from home in a place far more mental than it is physical.

"I was sitting in a hotel room in Athens," says Chesney, who is now 31. "I was in this city where the curbs were high and there were no wheelchair ramps, and I was an emotional and physical prisoner at night in this room. I had lost my teenaged years and the games I loved to play. I had looked in the mirror and cried. I thought, 'What am I doing? Who am I? What do I want?' And for an instant what I wanted was to check out -- suicide.

"And then something happened. I felt the stillness and the silence and a sort of voice inside me that said, 'Stop looking outside. Look inside yourself.' That's how it's been ever since."

The travel took on a new dimension and a new goal. Chesney would stand inside the stone cubicle that was once Nelson Mandela's prison cell on Robbins Island in South Africa and recall Mandela's words: "I wasn't surviving. I was preparing."

In India, Chesney would spend 40 days in a nonmedical hospital in a place called Coimbatore, where they practice a kind of healing called Ayurveda, which they claim is 5,000 years old.

"I couldn't go outside for three weeks, couldn't cut my hair or nails, couldn't shave and for 13 days sat alone in silence," he said. "I learned a lot about myself. In China, I saw a paraplegic tied to a post doing Qigong (a self-healing art combining movement and meditation). In Hawaii, I did the Tony Robbins' fire walk on my hands while he held my feet."

Meanwhile, he speaks and people listen. So sing no sad songs for Scott Chesney. He is on a nonstop voyage of discovery.

All he asks of others is to share in the joy of what he learns.

Jerry Izenberg appears regularly in The Star-Ledger.


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