DAYBREAK, Utah (ABC4 News) – A Utah man living with a rare, genetic eye disease is learning to adjust to a life when his sight will no longer exist.
Two years ago, Ryan Boudwin was diagnosed with Retinitis Pigmentosa – a rare, genetic disease that’s only found in one of every 3,500 people, according to the National Library of Medicine.
“If you had to live your life looking through a paper towel tube, then that’s probably somewhat what it’s like for me in that it’s easier to see things that are further away but it’s not really enough to like see the whole room at once or anything like that,” Boudwin said.
Boudwin’s limited vision won’t last forever. Eventually, doctors say, Boudwin will go completely blind and there’s no telling how long that could take.
“It’s a pretty crappy hand of cards to be dealt. But whining about how your cards suck is not productive,” Boudwin said.
Living with this rare condition requires Boudwin to make adjustments to his life. Like learning how to read and type Braille and, walking with a cane instead of driving.
“I knew I was going to become a full-time pedestrian because it’s not safe for me to drive anymore,” Boudwin said.
Learning to adjust to a new normal also comes with challenges.
“For me, the biggest challenge is winter,” Boudwin said.
Slick and snowy sidewalks require him to wear spikes over his shoes.
“Most people are thinking, well, I just gotta clear my driveway so I can get my car out, and they forget that there are some people like me that use the sidewalks year-round,” Boudwin said.
And walking across the street isn’t always easy either.
“If it’s not a fully controlled intersection with like a red light, then people very rarely are willing to yield,” Boudwin said.
He said a lack of understanding from the public is tough.
“I have random strangers always coming up to me saying, ‘You’re not really blind, why do you have a cane or whatever,’” Boudwin said.
Boudwin said blindness affects everyone differently.
“Because everybody assumes that if you’re blind you have no light perception at all, and you see is blackness and that’s your life,” Boudwin said. “Reality is, like 80-90 percent of blind people have some kind of remaining vision which it might be different depending on the nature of the cause of their blindness.”
There is no cure for Boudwin’s failing eyesight, but he is not giving up on life or his family.
“My wife and children didn’t stop needing me because my eyes stopped working,” Boudwin said.
And with the help of training, he continues to move forward.
“Being blind is going to be inconvenient but it doesn’t have to be a crippling disability that controls your life,” Boudwin said.
Boudwin attended the Workforce Services Rehabilitation Services training and adjustment program in Salt Lake City.
The program “helps students achieve greater independence through its core values of infusion of hope, mastery of skills, integrating into society, and emotional adjustment,” according to Workforce Services.
Classes include: Braille literacy, cane travel, adaptive technology/computers, home management, wood shop, and needle arts.
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