Life Goes On for Julians, Part 1

Editor's note: This is the first part of a two-part story (Read Part 2) on Jeff and Kim Julian and the life they lead as they continue to battle amytrophic lateral sclerosis. A one-hour special telling the lives of Julian and fellow ALS sufferer Bruce Edwards, entitled Courage on the Fairways, will air Tuesday on TGC at 8:00 p.m. ET
 
Matthew Hegarty lights a cigarette. He flicks the ashes outside the cracked window of his rental car while the man in the passenger seat holds a one-way conversation.
 
Matthew’s not being rude to his new acquaintance – under normal circumstances he would out-chat the chatter. But now he’s starting to get a little nervous.
 
A little levity is given when he sees the signs acknowledging the baffling fact that Branson, Mo. is home to Jakov Smirnoff.
 
Hegarty, however, is not there to see the 1980s Russian comedic icon. He’s made the four-hour trip from Kansas City to Branson under more serious circumstances.
 
Hegarty is a producer for the Golf Channel and he and his cameraman are headed to the home of Jeff Julian. Hegarty is working on a 1-hour special entitled "Courage on the Fairways," which tells the stories of Julian and Bruce Edwards, and the disease that has stricken them both – amyotrophic lateral sclerosis (ALS).
 
Hegarty and his cameraman finally reach their destination. They park alongside the curb outstanding a modest ranch-style home.
 
They exit the vehicle and walk up the driveway. Matthew swings open a wrought--iron gate just as a woman opens the brown, wooden door it shields.
 
The woman is dark-haired, athletic and classically attractive. She has beautifully tired blue eyes.
 
Matthew and cameraman greet Kim Julian and her parents as they enter. They then make an immediate left turn and step inside an entertainment-room-turned-office.
 
There, in a wheelchair, facing a closed armoire sits Jeff Julian.
 
“Matt,” welcomes a computerized voice that Jeff now uses as his own.
 
At first look you might feel sad or sympathetic, shocked even. Here a handsome 42-year-old man who stood 6-foot-2 and weighed nearly 200 pounds, a man who was a professional athlete, sits in a wheelchair that seems to swallow his frail body. He has no use of his right arm and can only use his left hand to steer his electric legs. His right leg is immobile, leaving the left as his only fully-functioning limb.
 
He sports a red Boston Red Sox hat not to cover his graying hair, but to extend pride in his most favorite of teams. He has a neatly trimmed salt-and-pepper goatee. His jaw trembles uncontrollably. A ventilator pipes oxygen directly into his trachea. His thinness creases his jeans.
 
But if you look past the physical deficiencies, you’ll see the real Jeff Julian. Not the outer shell, but the man trapped inside.
 
It’s in his eyes.
 
There’s a lot of life left in those eyes, if his body would just allow it.