Seven years ago, John Corneille’s world was crumbling. “I almost hit rock bottom,” the 54-year-old recalls. He’d recently left his law firm, his marriage was in jeopardy, and he could no longer hide that he had retinitis pigmentosa. “It was bad enough where I had to check myself into a school for the blind, in Chicago. I stayed there, from January to May.”
And that’s when his life turned around.
“I learned how to use reading software, how to use a cane, how to type,” John explains. “So that rejuvenated me—personally, emotionally, mentally—and made me realize I can lick this thing.”
That “thing” is what millions of people with retinal diseases face—a loss of eyesight that gradually strips away one’s vision-dependent abilities. Driving, for instance, or playing sports. John not only returned home to his wife, Pam, and their two daughters rejuvenated; he joined the Foundation, where he became an exemplary fundraiser and, eventually, director of its gift planning program. All because of his faith in FFB’s ability to facilitate treatments and cures for retinal diseases.
But until that day arrives, John, who lives in Dekalb, Illinois, needs to function. For him, that began with letting those outside his immediate family know about his RP. “Denying it, becoming more reclusive, not going to social engagements for fear others would find out—that wasn’t good for me,” he says.
It was, however, understandable. Even though John was diagnosed with RP at age 5, his parents chose not to tell him. “They didn’t want it to limit me, which I respect,” he says. And, for a while, it worked. John was a straight-A student and varsity athlete. But he had problems seeing at night games. At age 18, during a routine eye exam, he discovered why. The doctor let slip that he had RP.
It wasn’t until John’s junior year in college that his eyesight was so bad, he had to quit playing organized baseball and football. “That was very difficult because sports had been such a big part of my life,” he recalls. “And I was still trying to play intramural sports to fill the gap. When I went to law school, I played intramural football and ended up breaking a bone in my hand, clearly because of the vision loss.”
Concerned about his burgeoning career, however, John did not share his RP with colleagues and friends. And he didn’t see the need. He could still drive and, because he had central vision, study documents. But during the late 1990s, those tasks became serious challenges. Driving at night, as he recounted in a blog post last year, was so dangerous, his law partners recommended strongly that he stop. And work demanded the use of visual aids.
John was beginning to detect a pattern. “With gradual vision loss,” he explains, “you tend to think, ‘Well, at least it won’t get any worse.’ You get to the point where you’ve adjusted, made accommodations in your work and life. And then you realize it is getting worse.”
And, as it got worse, John became more reclusive, putting a strain on his family. Although he was depressed, “I’m not a counseling-type person, and I don’t take meds,” he says. “I thought it was what weak people do. But I’ve changed my mind. I now think counseling and talking to people is good.”
John’s version of “therapy” was to stop hiding his vision loss and dive into the Foundation’s mission—which includes speaking before community groups and attending FFB’s annual VISIONS conference, where, for many with retinal diseases, “it’s the only time they feel normal,” he says.
Without such support, John doubts he’d be able to handle continuous vision loss. Lately, he says, “I can’t sit at dinner and see anyone across from me, even if it’s good light. I can’t see the face of my five-month-old granddaughter. A year or two ago, I at least would have been able to make something out.”
As much as he struggles, John is able to reacclimate. Case in point: After he quit driving, he rode his bike to work instead. Then he had to give that up. But a couple summers ago, he invested in a tandem bike. “I ride it with others,” John says. “Not too long ago, my daughter’s boyfriend and I went on a 27-mile trip. He was the pilot.”
Pictured, above: John Corneille and his wife, Pam, get ready to hit the road on their tandem bike.