The darkness is off in the distance, looming somewhere in the future.
Joseph Iames knows what is coming. After being diagnosed with a vision condition called retinitis pigmentosa, he is slowly going blind.
Iames still can see well most of the time. Corrective lenses have given him close to 20/40 vision — worse than normal eyesight, but still enough to drive, work and function in his day-to-day life. So with the time he has left with his vision, he’s preparing.
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With the help of Bosma Enterprises, an organization that works to create possibilities for people who are blind or visually impaired, Iames is better prepared for his future.
The 22-year-old Center Grove area resident has learned how to use a cane, how to read Braille and how to use adaptive technologies, such as larger computer screens and special computers to type, email and read.
“If I do go blind, it’s not as scary now. I have a lot of techniques I use already, and will already be there,” he said.
Iames has a job with Bosma sorting boxes and preparing deliveries that will allow him to live independently even after he loses his vision.
“Joseph knows what he wants to do in his life, he’s at the point where he wants to make a better life for himself, and he’s gained the skills to do that. He worked hard, was here every day and put in good effort,” said James Michaels, vice president of programs at Bosma Enterprises.
Even from the time he was a child, Iames realized something was off with his vision. He was often tripping and falling, was overly clumsy and could not see in the dark.
“I hated trick-or-treat as a kid. I never really wanted to go, so they knew something was up at that point,” Iames said.
His parents took him to see multiple optometrists to determine what was wrong with his vision. But nothing pinpointed the issue until Iames was 14 years old.
On a checkup to a new optometrist just as he was about to start high school, the doctor spotted something concerning during the examination and recommended he see a specialist that day.
That’s when Iames was diagnosed with retinitis pigmentosa.
Retinitis pigmentosa is a group of rare genetic disorders that leads to the breakdown and loss of photoreceptors in the retina, the light sensitive cells at the back of the eye that make vision possible.
The condition only affects about 1 in every 4,000 people worldwide, according to the National Eye Institute.
“In a way, it was a relief to know why I couldn’t see at night, why we always thought I was so clumsy,” he said. “At the same time, it was extremely scary and depressing, because I’ve been told by so many doctors that there’s this possibility of me going completely blind.”
Doctors haven’t been able to give Iames an estimate as to how long he’ll keep his vision. Some people with retinitis pigmentosa lose their vision quickly, while others develop “tunnel vision.”
Others can see much of their adult lives.
“They don’t know until it happens,” he said. “Each case is completely different. For the longest time, that was the scariest thing.”
In the face of such an uncertain diagnosis, Iames and his parents have opted to prepare as best they could.
The family was raising money for the Foundation Fighting Blindness, an organization that researches a cure to retinitis pigmentosa and other vision disorders, when they learned about the services Bosma Enterprises offers.
A representative from the organization spoke with the family, and the more they researched it, the more it sounded like something that could help.
“The biggest thing that appealed to me was that they only deal with visual impairments. A lot of other rehabilitation centers here in central Indiana deal with vision impairments and hearing impairments and other things,” he said. “Bosma was the best for me because it’s strictly vision.”
Bosma Enterprises was founded in 1915 to help people navigate blindness. The organization, which is based in Indianapolis, has grown to offer job training, rehabilitation services and other programs to give the blind greater independence and self-confidence.
“Our mission is to create opportunities for people who are blind or visually impaired,” Michaels said. “If you lost your vision overnight, how would you function? We want to help people find ways to manage life after vision loss.”
Counseling helps the newly blind adjust to the disability. Programs, such as the rehabilitation center, teach people to work around their vision loss and dress themselves, cook their food and do other household activities.
A custom-built trail helps people work on orientation and mobility around real-world obstacles such as curbs, bricks and grass.
For Iames, one of the most valuable skills he’s gained is learning to walk with a cane. He developed the skills to use it to navigate around his house, determining where he was by what he was feeling in front of him.
Many of the tricks he’s implemented into his life already, even though he can see. Every time he gets out of the car, he walks to the far side of the driveway, where the grass meets it, so he knows exactly where he is and how far from the house he is.
“When I was first diagnosed, I didn’t want anything to do with a cane. It was scary to think about it. It took many years before I thought that I might as well learn how to use it,” he said.
Iames learned how to read Braille. Starting with a larger version of the tactile language, he figured out the alphabet, punctuation marks and numerals.
Once he got the feel down, he moved to a standard version of Braille. He’s confident that if he does lose his sight, he’ll still be able to read.
He also was provided with a new laptop equipped with a larger monitor to meet his vision needs. Technology called ZoomText enlarges the entire screen and alters the appearance of text so he can better see it.
For Iames, all of the new skills he’s learned have helped him feel more comfortable about an uncertain future.
He has a 3-year-old daughter, Skylar, and he wants to be able to function independently so that he can care for her without assistance.
“I’m more confident. The major reason I went to Bosma is that I want to be able to move out and get my own place, and to take care of my daughter without having anyone worry,” he said.
Iames works at Bosma in a temporary position, with the hope of landing a full-time job with the organization. Each week, he does jobs such as unloading and packing boxes, working on the packaging line and filling bags of icemelt, which Bosma sells to support its programs.
The experience over the past few years has helped Iames accept his vision loss. Instead of looking at it as a crushing roadblock in his life, he is determined to make it another obstacle to work around.
“The biggest thing I’ve learned is, just because someone has a vision disability, it doesn’t mean that they can’t do everything that a fully sighted person can,” he said. “I’m able to do so much now.”
What: An organization providing opportunities to the blind and visually impaired.
Where: Based in Indianapolis
Examples of programs
- Rehabilitation center: giving people skills to cope with their vision loss, including learning to use a cane, read Braille and navigate their homes.
- Counseling: Helps the newly blind adjust to their disability.
- In-home rehabilitation: to help those who cannot leave their homes learn to be more independent.
- Training and employment services: Allows the visually impaired to find jobs, often with Bosma, and support themselves financially.
How to get more information: Contact Bosma at 317-684-0600 or 866-602-6762, or go to bosma.org.