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The problem is that Craig's body – even without the strain of such a hectic social calendar – is literally falling apart. It's been four years since he was able to stand up, even with someone holding him. To go out for a few hours each night means he needs a full day to recover. To be out five nights in a row is torture.
But in Craig's mind he has to do it, to squeeze in as much as possible, because while his physical limitations make his work difficult, they'll someday make it impossible.
As Preston Craig loses ever more control of his body, he takes comfort in one thing: his increasing ability – through his choice of music and sheer force of personality – to shape the scene.
Craig was 7 years old, maybe 8, when he knew something was wrong. The community race, a fundraiser event held near his family's home in Clayton County, should have been easy. But he kept stumbling. Volunteers had to help him to the finish line. When he got home, his knees were bloody from all the falls. "That was one of the first times that I became very, very aware that something was different with me than other kids," he says. "As a child, you don't know how to process it."
Craig visited a parade of doctors before he and his parents ended up at Emory. Thick-gauge needles that measured the electrical impulses traveling through his muscles were pushed into Craig's neck, arms and legs. It took several nurses to hold him down.
The doctor pulled Craig's mother into his office. He told her he was pretty sure her son was suffering from facioscapulohumeral muscular dystrophy, or FSHD. What's more, FSHD is a genetic condition that can be passed only from parent to child. That meant that not only did Craig have the disease, but his mother had it, too.
FSHD is one of 40 forms of muscular dystrophy, and in most cases, one of the least debilitative. The disease typically has its most serious impact on the face ("facio"), shoulders ("scapula") and arms ("humeral"). Sometimes, FSHD doesn't become apparent until middle age, which is why Craig's mother didn't know she suffered from it. She had a few small symptoms – an inability to whistle, for instance – but nothing on the scale of her son.
Only one in five FSHD sufferers ever requires a wheelchair, and they often don't need it until they reach old age. Just one out of 20 shows symptoms in childhood. For some, FSHD amounts only to hunched shoulders, weakened arms and an asymmetrical smile – a smirk.
Craig's case was different.
As a child, he ran like a German shepherd puppy, loping along as if he were all hands and feet. He was clumsy. A picture of him at age 4 shows him holding a fishing line, a fresh catch dangling from the end, and his back is unnaturally arched. Only later would the family realize he was arching that way to compensate for lack of strength.
He walked relatively normally until he was 18. But after an experimental steroid treatment, which he says gave him a false sense of power and made him think it was OK to walk to his heart's content, one of his hips began to give out. Over the course of a few weeks in his senior year of high school, he went from walking with relative ease to barely walking at all. It was as if he suddenly forgot how to do the most basic thing. He was fine, and then he had no balance at all.
One day late in his senior year, he sat down at the lunch table at Eagle's Landing High School and couldn't get back up. He later determined that certain muscles could no longer bear his weight. He couldn't stand up from a seated position, but if he were to lean forward and kneel into another chair, he could lift himself up that way, using his hamstrings.
Still, there were only so many adaptations he could make before he had to turn to outside help: "It was prom, I think, that I first picked up my cane."
Craig walked with a cane until the first day of his sophomore year at UGA, when he traded it for a wheelchair. The chair was a massive relief. He'd been falling all the time and was stressing out about the shortest trip. To walk to the bathroom was a task. He says the wheelchair "was like getting my legs back."
He gained another measure of independence when, a semester shy of graduation, he was offered a job as a computer network engineer for K&G Men's Center. But even with a job, an apartment and a car (a minivan with a dropped floor that could accommodate both Craig and his wheelchair), he continued to devolve.
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