About Us Advertise Get the Magazine Subscribe to Newsletter Contact My Account 203.431.1708

Poised for Success – Charley Seckler, who has muscular dystrophy, enters into his own at NYU

Charley Seckler aims to start each day at peace, both with where he’s headed and where he’s been. His approach involves copious amounts of coffee—black—befitting his current crossroads: Charley is on the brink of his college career, and the soon-to-be freshman is keeping an open mind until he figures out where he feels comfortable.

For now, it is in New York City. On the Tuesday after Labor Day, when the fall term begins at NYU, Charley will be among the newest students in the College of Arts and Sciences. It is a milestone that has nothing—yet absolutely everything—to do with his journey with Duchenne muscular dystrophy, a genetic disorder characterized by progressive muscle degeneration. The way he sees things, it’s about finding balance, and a big city’s burgeoning independence is as good a start as any for this 19-year-old from the village of Egremont.

“Medicine is definitely a help but a lot of times—like if my back is bothering me or I’m in pain—if I just do things in life, that helps the pain not be there,” explains the graduate of Monument Mountain Regional High School. An off-the-cuff internship with Flavio Lichtenthal at No. Six Depot in West Stockbridge led Charley to his proposed food studies major at NYU. “I’m excited to learn about food through different lenses, from cooking in the kitchen to local agriculture,” explains Charley. He cooks here and there, his favorite restaurant is Cafe Adam (if he has to choose), and over the summer he took a course at NYU called Urban Agriculture—a class whose content hinges upon the intersection of urban and rural approaches to growing food.

Now that September is here, Charley has turned his attention to navigating the intersection of urban living for a rural kid. He no longer relies on others to give him rides—to school, to hang with friends, to pick up food. “Don’t get me wrong, I love it here, but it’s a process,” he says about living in the Berkshires while in a wheelchair. Entering another environment has been instrumental in Charley’s acceptance of life with Duchenne. “Living in the Berkshires, with nobody thinking about my condition, I was kind of in denial,” he says of the diagnosis that came at age four. He has learned a thing or two about how to handle people and their awkward ways. He began using the wheelchair in his junior year, which elicited lots of questions.

Those who ask about Duchenne or the wheelchair ultimately earn his respect. “If you are going to look, at least take the initiative to actually know me.”  His passions run the gamut—from a wide range of music and film, to coffee and travel. (He went to Copenhagen over the summer.) What he has learned about himself is that he is drawn to the energy of others.

“I always saw myself in New York,” Charley says, pointing out that his grandparents and three aunts live there. As a kid, he loved Times Square and other tourist destinations; his favorite area now is right around NYU. “There are creative people everywhere, coffee shops everywhere, a beautiful park—it’s like everything I love,” he says of the Greenwich Village/Lower East side location of the university.

He is also learning to love the convenience of a place pulsing with millions of people. He planned to move into a dorm at the start of the fall term.“I just go down an elevator and I’m right on the street,” says Charley, smiling at how life in the city just flows. Which isn’t to say he won’t miss the Berkshires. Charley has an affinity for Blue Hill Farm’s sausage sandwich at the farmers market, and his favorite hangout is Rubi’s. He will miss his friends—dozens of whom have carried Charley on their backs, a tradition that stems from pure necessity and has grown to be a symbol of the unconditional support he feels from those he grew up with.

“They understand me the best and have seen the process of Duchenne and how it’s progressed over time,” he explains. His philosophy is simple, and his smile is infectious; he sees himself as humorous, optimistic, and outgoing, which means he is inevitably poised for success.

With school just starting, Charley will happily pass on math and chemistry for courses on humanity and self-improvement. He recently read David and Goliath by Malcolm Gladwell, a book that brings into sharp perspective the simple fact that a weakness can become a strength the more we learn to compensate against it.

“The stress of having [Duchenne] is enough; worrying about what other people think is kind of unnecessary,” he says in characteristically Charley fashion. “I’m going to slowly let life happen and not worry about it too much.”

 

 

 

Share On :

post a comment

X
X