This past spring, NC State’s student newspaper, Technician, published a lengthy interview with North Carolina’s poet laureate, Shelby Stephenson. In the story, the 76-year-old Stephenson leads student journalist and English major Kevin Schaefer around his Benson farm, naming birds and sharing the history that led to his appointment as the poet of Land of the Pine:
“As he continued to identify the ravens and mockingbirds that flew by and pointed to the house where his father once lived, Stephenson said his writing stems mostly from the sights and sounds he experiences in his daily life.
“Poetry became personal to me,” he said. “My subject is culture — the people, family, the drama of life, the living. We’re finite, and mortal and don’t know the unknown unless we write about it in words.”
Shaefer’s story moves with Stephenson, weaving together the poet’s Harnett County roots, his Wisconsin college years and his ultimate return to southeastern North Carolina.
That sense of movement belies a fact of Schaefer’s daily life: He needs help making nearly all physical movements, the result of a lifelong struggle with type-2 spinal muscular atrophy, a degenerative neuromuscular disease.
“The last few years, it’s taken a toll on my upper body strength,” Schaefer said. “It’s made everyday tasks more difficult, and I’m much more dependent on other people than I was five or seven years ago.”
Despite his declining physical strength, Schaefer has developed a strong voice in the English department and in campus student media circles. In addition to writing about Stephenson, he’s reviewed films, interviewed “Saturday Night Live” alum David Koechner and profiled an NC State graduate who designs solar-powered alternative vehicles.
Schaefer has also been actively involved with Campus MovieFest, a showcase for student filmmakers, and he writes film reviews online. That work — which he hopes to continue professionally after graduation — grew out of his love of film and writing. That same love brought him to the College of Humanities and Social Sciences in the first place.
Prior to enrolling, he spent summers attending the English Department’s Young and Teen Writers’ Workshop. He’s done it all with the help of a service dog, a motorized wheelchair and a mechanical arm. That arm is one-size-fits-all, though, and its utility is declining, Schaefer said.
This past spring, he tried out a piece of technology that outdoes anything he’s used before: the Jaco, a robotic arm built by Canadian manufacturer Kinova. Using the joystick that controls his wheelchair, Schaefer opened doors and cabinets, fed himself and raised a coffee mug to his lips.
Those are all actions that typically require another person’s help.
The Jaco arm could be a game-changer for Schaefer, but it would be a costly one. He and his family have started a crowdfunding campaign to raise the $50,000 he needs to buy the arm. Donations small and large have carried Schaefer beyond $30,000. He’s hoping to raise the rest this academic year. Schaefer also hopes his effort, which has drawn support from small donors and area businesses, will raise awareness of SMA and make it easier for others facing the illness to get new tools.