James Cooper kept scrunching his nose to shoo off an annoying fly on his face. He had no other way to do it.
His right hand gripped the control knob to his motorized wheelchair. His left hand didn’t move the entire time we talked at Central Park Plaza in downtown Valparaiso.
We spoke next to a park bench with the statue of Orville Redenbacher cemented to his seat. How ironic, I thought, considering that after our chat only one of the three of us would be able to stand up and walk away.
Cooper twisted his right hand ever so slightly to adjust his wheelchair, getting a better view of all the action. He watched passersby along Lincolnway. Businessmen hustled to appointments. Cars whizzed past. Parents chased their kids through a splash pad on a picturesque summer day.
“I forgot to bring popcorn,” Cooper joked, spinning his chair toward Redenbacher.
The 37-year-old Kouts man lived most of his life in Valparaiso and returns there often.
“It’s still my town,” he said with a smile.
Cooper lives with his parents. His mother serves as his primary caregiver. On the day we met, his medical assistant drove him to appointments in Cooper’s handicap-accessible full-size Ford van.
Cooper misses driving on his own. He misses playing guitar. He misses being alone, without needing round-the-clock care.
“That’s probably my biggest challenge,” he said, again twitching his nose to ward off that fly.
As a young boy, Cooper was diagnosed with Duchenne muscular dystrophy, a genetic disorder characterized by progressive muscle degeneration and weakness. It’s caused by an absence of dystrophin, a protein that helps keep muscle cells intact.
Its symptoms typically show up in early childhood and it primarily affects boys. Cooper could be its poster child. He soon became unable to walk. By 12, he was dependent on a wheelchair.
He graduated from Valparaiso High School but while attending Ivy Tech State College he developed double pneumonia. He was hospitalized for three weeks. Doctors told him he would not be able to eat, talk or breathe on his own.
“They said I would not have a very productive life, if I even survived that evening,” he recalled.
He experienced a near-death, spiritual experience that opened his eyes to a life of deeper meaning, beyond his condition, his wheelchair, his declining health. He somehow managed to regain the ability to eat, talk and breathe on his own.
After being sent home, with a 24/7 ventilator, Cooper began breathing in a new awareness for life as a Christian Buddhist.
“My life of spirituality began,” he said. “I studied all religions, all philosophies, everything I could get my hands on.”
In 2004, he dedicated himself to Jesus Christ.
“This made me want to be involved in social justice and make lives better for people in my situation, as a disabled individual,” he said.
His wholly trinity became Jesus, the Rev. Martin Luther King Jr. and Mahatma Gandhi, influencing his new convictions.
“I could no longer just sit there and not do anything about the prejudices in our society against disabled people,” Cooper told me.
In 2012, he formed a disability rights group called 3-D – Disabilities and Disorders with Dignity. With 13 core members and many more supporters, it’s been active in Northwest Indiana, mostly Porter County.
“I will continue the struggle until the end of me,” he said.
Last year, he attended a faith-based college to earn a degree in biblical counseling.
“I plan to use my gifts and my life experience to teach others to be positive, to strive for their highest potential,” he said.
Even after the recent 25-year anniversary of the historic Americans with Disabilities Act, a stigma still handicaps most able-bodied people, he believes.
“We’re no different than you,” Cooper said. “I would like to get married and have children someday. I have the same dreams and thoughts like everyone else.”
He welcomes honest questions from others about his life, his feelings, his situation.
“Honestly, I’m fine, really,” he told me, lifting only his eyebrows.
By doing so, he reminded me of one of my favorite songs, “Woman with the Strength of 10,000 Men,” written in 1991 by singer-songwriter Peter Himmelman.
“From the moment I saw your face, I knew I could never take living for granted,” he sings. “I froze right in my place, as I became aware of the ground on which my feet were planted.”
The song is about a quadriplegic woman he once met in Minnesota who could only move her eyes and eyebrows. However, she used her extremely limited physical ability to communicate with others through a computer, painstakingly choosing each letter, word and sentence.
“I was speaking to you with my voice,” he sings. “You were speaking to me by choosing letters with your eyebrow. You didn’t have no choice and yet you had an attitude like that’s just the way that it goes now.”
The song is written as an apology to the woman, whose name was Susan (who has since died). But also as an apology to everyone else in similar situations.
“Susan, I owe you an apology,” he sings. “For all the days I just let slide right through my hands.”
I thought of this lyric while Cooper explained how he’s not missing anything in life.
But what about his condition? His deteriorating health? His extremely limited mobility? His obvious challenges? His future? These are the honest questions he rarely hears from others. Instead, they feel they must tiptoe around his wheelchair, his feelings, his fate.
Cooper lunged into the questions, addressing an existential dilemma that he’s obviously been grappling with for many years.
“If you want your life to be a living hell, you can make it that way,” he said flatly. “If you want your life to be something better, you can make it that way, too. There are no excuses, not for any of us.”
Twitter @jdavich
