Larger than life

Jonathan Studebaker was quite the local celebrity. Just ask his older brother, Alden.

Whenever Alden would visit Chico, he recalled, “people would be driving by in their cars and stop and reach out the window and wave and say, ‘Hey, Jonathan, how are you doing?’ spontaneously.”

Jonathan had a larger-than-life personality in a smaller-than-average body. He was born with a rare genetic disease, osteogenesis imperfecta, which caused his brittle bones to break frequently throughout his life. This also meant that Jonathan spent much of his life in a wheelchair, in a lot of pain, and in and out of the hospital.

But he didn’t see his disease as limiting. In fact, in his autobiography, Not Just Any Bag of Bones, he described it as “a very small part” of who he was on the inside, despite it standing out as a “very visible part” on the outside.

Jonathan’s book was published last year, 17 years after his death. Alden saw to it that the manuscript was shared with the world, though Jonathan initially asked him not to publish it, for fear of what the family might think.

The autobiography, penned around 1996, paints a portrait of a man who defied the odds and doggedly pursued his dreams, living an extraordinary life. Within its approximately 250 pages, Jonathan not only reflects upon his experiences and accomplishments, but also encourages others to do the same, inviting the reader to see life as an opportunity to “show the world your work of art.”

Years after his brother’s death, Alden said he felt an urge to return to the manuscript and realized it was a treasure.

“Every time I read it, I said, ‘This is a story that would appeal to a lot of people,’” whether the reader is living with a disability, loves sports or just enjoys autobiographies, Alden told the CN&R. “His optimism was infectious. It really was. He did not let stuff get in his way.”

Jonathan spent much of his childhood in Shriners hospitals, which he called his “second home.” His family moved around a lot—he grew up in Hawaii, San Mateo, Indiana and Michigan.

Alden said because the two were eight years apart, they grew much closer in their adult years. Jonathan, the youngest of four, was “kind of the mascot of the family. He was the comedian, even for somebody who was in pain a lot.”

The U.S. National Library of Medicine estimates that six or seven people per 100,000 worldwide live with osteogeneisis imperfecta. The disease is classified by types, and Jonathan’s was more severe: He fractured bones before he was born, and over the course of his nearly 36 years of life, he broke more than 100. Over his lifetime, Jonathan had many attendants who helped him with his daily needs, like getting into and out of the bathtub, mopping the floors, preparing dinner and running errands. He referred to them as “the glue that holds me together.”

Though Jonathan’s intelligence was often underestimated, Alden said, he and his parents persisted in advocating for his mental acuity. “It’s amazing he got as good an education as he did,” Alden said. “Particularly in those days, they just wanted to pigeonhole people like him into special ed.”

Jonathan arrived in Chico in 1983 to attend Chico State, which he described as “one giant roller coaster, never a dull moment.” He pledged the Sigma Phi Epsilon fraternity and, as a fierce football fan, served as the kicking coach for the Wildcat football team. He graduated in 1987 with a degree in communications and decided to call Chico his home.

Post-college, he hosted a sports segment called “Chalk Talk” for the local NBC affiliate. For 10 years, he was the honorary head coach of the East-West Shrine Football Classic.

Later in his life, Jonathan was an educational and motivational speaker, an advocate for those with disabilities, and passionate about public service. He was responsible for the installation of what became called “Studebaker strips” downtown—the smooth paths in the center of the faux-bricked and bulbed intersections—to ease the crossing for those in wheelchairs.

When Jonathan was born in 1965, the doctors gave him a week to live. But “[w]ith each passing day, I was defying the experts,” Jonathan writes. He died in 2001 from complications from pneumonia, just shy of 36.

At the time of his death, Jonathan still had a lot on his to-do list. He had dreams of being a head football coach and winning the Super Bowl. He wanted to expand his efforts to educate people about individuals with disabilities.

“I knew I was doing something right,” he writes. “I had letters from children who shared stories of how they were no longer afraid to play with kids with disabilities.”

He was a Chico Planning Commissioner, a member of the city’s Affirmative Action Committee and Transit Board, and president of the local chapter of the Lions Club. He ran for Chico City Council in 1996, finishing ninth in a field of 19 candidates.

As the book concludes, Jonathan reflects on the questions “Who am I?” and “Why am I here?” and asks his readers to do the same. “I want to be happy. I want to be healthy. I want to live life to the fullest and make the world a better place than when I arrived here on May 20, 1965,” he writes.

Alden said his brother definitely accomplished that wish, and his book is a testament to that. Jonathan had a lot of “moxie” and “certainly lived life with a lot of gusto.”

“He didn’t hide his light,” Alden said. “He put it out there for everybody to see.”