Johnny Walsh, who is nearly blind, stood before an audience at The Comedy Club on State and joked about whether he wants to have children.
“I feel like if I had a kid, it would just be one really long game of Marco Polo,” said Walsh, 32, who is legally blind from a condition called Usher syndrome.
His brother, Mike Walsh, 37, has the same genetic disorder, marked by progressive loss of peripheral vision after childhood and significant hearing loss at birth. The condition causes about 50 percent of deaf-blindness in adults.
Mike has taken more than 80 flights to 10 countries and 15 states this year, raising awareness about blindness through a blog called Flight for Sight and exploring as much of the globe as he can.
“The world will not wait for me to see it,” his first post began.
The Walsh brothers, sons of UW Regent David Walsh, are in some respects a disparate pair. Johnny, bookish and methodical with a ready wit, is an attorney specializing in estate planning and business law. Mike, adventurous and carefree, studied dance in college and worked as a professional sports mascot.
Usher syndrome has put them on a parallel path. Hearing aids largely mask their hearing impairment, but their tunnel vision can’t be helped by any tool or medical procedure. Most people see nearly 180 degrees in front of them, but Johnny sees only 5 degrees — half of the mouth of the person he’s talking to. Mike sees about 15 degrees, the full mouth and a bit around it.
They don’t know if or when their remaining vision will vanish. They hope for progress from Dr. David Gamm, a UW-Madison ophthalmologist whose research, supported in part by the Walsh family, seeks treatments or cures for retinal diseases such as Usher.
As they wrestle with the complexities of dating and what the future holds, the Walsh brothers make the most of their situation by pursuing passions befitting their personalities.
Johnny does stand-up comedy, drawing from the law, bachelorhood and his limited vision for jokes. Mike uses social media to connect with people around the world.
“They have the strength of character to say, ‘This is the hand I’ve been dealt. I’m going forward; this is not going to hold me back,’ ” said Dr. John Vukich, their ophthalmologist at Dean Clinic.
Fall in pond signals problem
David and Nancy Walsh learned that Mike, their first child, couldn’t hear properly when he was 22 months old. He was soon fitted with hearing aids.
Twin daughters Katie and Molly, 35, were born with normal hearing. Johnny, the fourth child, had moderate hearing loss like Mike and started wearing hearing aids at 4 weeks old.
The Walshes figured having two children with hearing impairment was some kind of genetic anomaly, but they didn’t know more complications were to come.
One night when Johnny was 14, he fell into a pond on Maple Bluff Golf Course while walking home from Rhythm and Booms fireworks. He didn’t see the water.
An avid tennis player, Johnny started losing track of the ball. While riding his bicycle, he ran into garbage cans. Friends joked that he was becoming clumsy.
In 1997, when Johnny was 15, he was diagnosed with Usher syndrome. The condition involves hearing loss and retinitis pigmentosa, which causes night blindness and erosion of peripheral vision.
Mike’s vision was fine, but he was also found to have Usher the same year, when he was 19.
Several years earlier, Nancy Walsh, 63, was diagnosed with multiple sclerosis. Her condition, which causes her to use a wheelchair, added to the family’s medical challenges. But she modeled independence, driving and taking flights by herself.
“The stronger I am, the better they’ll do,” she said.
After Johnny’s diagnosis, his field of vision shrank rapidly. Still, he graduated from Edgewood High School and attended the University of Notre Dame in South Bend, Indiana.
Assisted by students who took notes and read books to him at times, he did well at Notre Dame. But he learned that adapting to a new environment was difficult. So he returned home and enrolled in UW Law School, a pursuit he attributes to being stubborn.
“My grandfather was a lawyer, my father is a lawyer and, vision or no vision, I was going to become a lawyer,” he said in a speech last year at the 35th anniversary dinner for Access to Independence, a disability resource center in Madison.
Mike, who also graduated from Edgewood High School, went to the University of Colorado, where he studied communications and dance.
Soon he became Rapidman, the mascot for the Colorado Rapids, a professional soccer team near Denver. He also worked as a back-up Miles, the Denver Broncos’ mascot.
About five years ago, Mike started having trouble driving at night. Soon, during mascot gigs, he had to do the unthinkable: take off his mascot head to see.
Three years ago, he moved back to Madison, working as a social media specialist for UW-Madison’s Athletic Department.
He stopped driving two years ago, even during the day. Last year, he started using a cane. It’s difficult for him to talk about what might come next: giving up his bicycle.
“I’m at a point where I can barely still ride my bike alone,” he said.
Living with near-blindness
Johnny works at Axley Brynelson, a law firm on Capitol Square. When he reads, he sees one word at a time.
“It’s painful,” he said. “But as I get more and more experience ... I’m able to rely less on having to look stuff up.”
At home, he goes through nearly three books a month, reading some and listening to others, such as Ken Follett’s ‘Century’ trilogy, on audible.com.
He turned to stand-up comedy four years ago, seeking a diversion from a previous legal
Telling jokes about his disability is cathartic, he said. In 2011 and 2012, he was a finalist in the Madison’s Funniest Comic competition.
“I am single. I have no game,” he told an audience last year. “I go up to a girl at a bar and say, ‘Are you hot?’ That’s my game.”
Johnny lives less than two blocks from work, in Capitol Point Condominiums on Hamilton Street. Mike lives there, too, in a separate unit.
Last month, Johnny moved to the top floor, the 14th. From his balcony, a person with normal vision can take in a panorama of the east Isthmus, including large portions of lakes Mendota and Monona.
As Johnny looked toward the Madison Gas & Electric power plant on Blount Street, he said he could see only the tops of three of its four smoke stacks.
“It will take me a while to put all the pieces of this view together,” he said.
Mike hasn’t spent much time in his condo this year. He’s been away from Madison well over half of the time since he started Flight for Sight in January.
A friend who is a flight attendant for Delta Air Lines gave him a pass that lets him fly at a reduced rate.
Mike “crowd-sourced” much of his journey, letting Facebook friends vote on where he should go, what he should do, even what souvenirs he should buy.
He went paragliding in New Zealand (“the single scariest thing I have ever done in my life!” he said in his blog), spoke at an Usher syndrome conference at Harvard Medical School and spent four days in Ethiopia, where he visited a school for the blind and wrote about its need for Braille writing tools and canes.
Mike said he was passive about his condition for years. Now, “I’m on this journey of forcing myself to learn more about it,” he said.
Facing the future
Johnny and Mike think about getting married and having children. But the prospect is complicated, they said.
Johnny said some women aren’t interested in being with a man who is nearly blind, while others “are so way into the caretaker role that it’s a little overwhelming.”
He doesn’t like going out to unfamiliar bars or restaurants. “It’s like walking into a black hole of confusion,” he said.
Mike said some women view him as a man who has overcome obstacles. “That’s how really cool people see me,” he said.
He wonders about the “gene thing” — if a potential mate should be tested to see if she carries the Usher gene. A positive result would mean each of their children would have a 25 percent chance of being born with the condition.
Johnny said that shouldn’t matter. “I’m happy to raise somebody who has Usher syndrome, and I’m happy to raise somebody who doesn’t,” he said.
Later, he said he “would prefer they didn’t have it. It just makes things significantly more difficult.”
Mike offered another assessment. “If a kid has Usher syndrome, the thing is, he’s not dying, he’s a human being,” he said. “It’s just a challenge, like, that’s their challenge.”