What Does It Feel Like to Be Blind? — ‘I Had to Figure It Out’
Key takeaways:
Loss of vision can be scary because you don’t know how it will affect your life.
Peter Berg lost his vision because of diabetic retinopathy. It took time for him to figure out how to deal with being blind.
With patience, he learned he can do all the things sighted people can do — except see.
Losing your vision can be a scary thing. But it is something you can manage with training, says Peter Berg, who has been blind for more than 25 years.
Peter lost his sight in the 1990s because of diabetic retinopathy, an eye condition that can cause vision loss and blindness in people with diabetes. Over time, blood sugars can damage blood vessels in the light-sensitive layer of tissue in the back of your eye, called the retina. As the condition progresses, these blood vessels start to break and leak, which can result in seeing floating dark spots or cobweb-like streaks.
With treatment, these vision changes sometimes go away. Without treatment, however, scars can form in the back of the eye, impairing your vision more. And blood vessels can continue to leak, further damaging your vision.
Losing his sight
Peter was in his mid-20s when he lost his vision.
“I spent the first half of my life with vision and now the second half without,” he says.
It was a transition that happened relatively quickly. He started to have vision issues in late 1994. By the end of 1996, he was completely blind.
At first, he went through the stages of grief: denial, anger, bargaining, depression, and acceptance. Eventually, he says, he realized he had to take charge of the situation.
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“My approach was, ‘OK, I’m blind — what do I do now?’” says Peter, now the Americans with Disabilities Act (ADA) coordinator for the University of Illinois Chicago’s Office for Access and Equity.
“I went from working full time as a customer service manager for a grocery store chain in the Chicago area to being totally blind,” he says. “I had to figure out what Blind people do as a career. Because sitting around and doing nothing, in my mind, was not an option.”
Patience and perseverance
Adjusting to his loss of sight took time. But with patience and perseverance, Peter says he found a way to manage it.
He didn’t get much help from the medical professionals who had worked to retain his sight, he says.
“My last surgery was done by a highly skilled and recognized surgeon in the Chicago area. And when I went in for the follow-up appointment after my last surgery, I realized that from his viewpoint, [the surgery] was a failure,” Peter says.
“There was no, ‘You’ve lost your vision, here’s resources and here’s the state bureau for blind services.’ It was nothing like that. It was more like, ‘It didn’t work. Have a nice day.’”
Peter says he had to figure out how to be successful on his own.
“I’d encountered [Blind people] somewhat in my previous life, and I knew that they were out there doing things and being successful.” Peter says. “I didn’t know what those things were, and I didn’t know how you got those skills. But from that point, it was like, ‘I’m gonna figure out what is out there and what I can do.’”
The learning journey
Peter says he thought his first step was to learn Braille, a tactile writing system with raised dots that you read with your fingertips. But a phone call to his local library led him to state vocational rehabilitation services, where he was able to enroll in a 14-week program that taught him how to accomplish daily tasks.
For the first 7 weeks, he participated in a residential program that taught orientation and mobility, as well as how to travel independently, cook, use a computer, and take care of other aspects of daily life.
During the second 7 weeks, Peter lived at home and traveled independently from the suburbs of Chicago by train into the city.
With training, he says, he was able to learn how to live on his own, just like sighted people do.
“People misunderstand the disability and see things from the perspective of: ‘This is how I would do it and just don’t see how (pardon the pun) someone that is blind could accomplish this task,’” he says.
“They don’t understand that people who are blind, given the opportunity to be properly trained and have access to resources, can do most everything that anyone else can do — except see.”
Learning how to travel independently, he says, was the scariest thing. But with time, he found a way to manage day-to-day life with vision loss. He learned how to do things without his sight, he says, just like he learned how to do things like cut vegetables and cook when he was sighted.
“Do I cut myself? Yes. But sighted people cut themselves when they cut vegetables, too,” he says. “I cut up vegetables before I lost my vision, and I have cut them up since losing my vision. It [cutting myself] just happens sometimes if I’m not being as careful as I should. But again, there are adaptive techniques that people can incorporate to do things. You just have to learn how to use them.”
Overcoming his fears
Over time, Peter learned to live on his own. For the last 22 years, he’s worked at the University of Illinois Chicago. He serves as the ADA coordinator, where he helps provide accommodation requests for employees and others at the school with disabilities.
Initially, he says, his diagnosis left him in fear — mostly of the unknown and what might happen next. But now, he says, with training and practice, he knows what to expect and how to adapt, just like a sighted person would.
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