More than meets the eye (and ear)

by Jenny Hasenjaeger, Bennet, Nebraska

Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ Larry the Cucumber, Levi Benson’s lips have been crooning tunes, and those on the listening end have been loving every note.

Accentuating his singing talent are his skills on the piano, violin (wife, Jaime, also plays), and guitar, which he began nurturing when he was nine years old.

“My parents said I could learn to play rock if I also studied classical, so I learned to play both while growing up in Grand Island, Nebraska,” Benson said.

Today, his Johnny Cash-like bass voice is as deep as the passion he has for the gift of music and sharing it with others. If given the choice to do anything, he said being a country music singer would top the list.

“I love getting the chance to tell stories through songs, whether they are mine or someone else’s. I would love to give people music to unite over—music that celebrates life’s successes and challenges.”

In December 2017, Benson came face to face with a challenge that wasn’t music to his ears. Following a series of tests ordered when his body started having difficulty adapting to the physical stresses of an active military life, he was diagnosed with FSHD Type 1.

“I never imagined being medically retired from the military due to FSHD or being diagnosed with FSHD in the first place,” he said.

Benson said FSHD challenges him in ways he has never been challenged before.

“When your body decides it’s done doing something and you don’t have a choice, it’s hard to accept right away,” he said. “But the adaptive challenges are always uplifting, and when I overcome through adaptation, I feel a surge of victory and confidence that I can do whatever task is set in front of me.”

While he still has lower-extremity strength, Benson’s greatest weakness is in his upper back muscles, which causes a lot of fatigue when he doesn’t adapt movements to accommodate daily tasks. And Benson’s tasks are many as he is a full-time student in the Doctor of Chiropractic program at Cleveland University-Kansas City.

“My father is a chiropractor, so it is something I grew up around and knew I wanted to do. In light of my FSHD, I have a passion for researching the effects and benefits that chiropractic care could have on patients with neuromuscular conditions,” he said.

Benson is emphatic that FSHD is not going to define who he is. “I have moments of apprehension about the future but know that God will use this in my life for His glory,” he said. “I don’t know what tomorrow will bring, but I know that I will keep fighting, pushing forward, and enjoying life because every day is a gift.”

He encourages others with FSHD never to give up on their passions. “The days when a hobby or dream seems impossible, it may just be a sidetrack that takes you the long way around,” he says. “Enjoy the ride, show kindness, and love yourself, so you can then turn around and spread that love to the people you meet along the way.”

Note: Levi Benson (stage name, Levi James) participates in FSHD studies conducted in the Kansas City area and is involved in FSHD Facebook groups. Enjoy his performance in the video below:

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