Brian Bays, of Wheelersburg, creates art as way of holding on to the “visual world.”
Bays has a genetic disorder that causes dominant optic atrophy. The disease causes his optic nerves to degenerate, so that less information coming through the lenses of his eyes actually makes it to his brain. Normal onset for a man in his 20s, while women tend to have earlier onset and start to lose their vision as teens.
Onset can also be caused by stress. Because it is an issue with the optic nerve and not the eye itself, glasses do not correct the problem. Optic atrophy disorders tend to be passed through the mother; however, in the case of Bays, his father had the disorder as did his niece on his father’s side of the family.
Now, Bays has two young daughters who exhibit symptoms. The only hope for a cure is experimental research being done in Florida that is having success but costs $20,000 for just the first round of treatment. Patients made need two or three rounds.
Though born with the disorder, Bays did not experience serious vision problems until later in his life. His vision is now so bad that he had to retire from his job. He also has types of color blindness. Despite all of this, Bays is a very productive painter.
Bays says he first started noticing that his vision was progressively getting worse when he was in college as an education major.
“I was doing student teaching and noticed I was having trouble driving,” Bays stated. “It just kind of happened one night.”
Bays’ vision is so bad that things people can see from 350 feet is what he sees from 20 feet. With his colorblindness, he has trouble discriminating between similar colors, such as orange and yellow or green and blue. Sometimes one eye also pulls, causing double vision. Bays has trouble recognizing people that are further away than three feet.
“I have to be careful of curbs, potholes, steps and such things,” he commented.
As his vision has left him, so have many of his great loves, with reading being among the most difficult. Bays, who has always been an avid reader and is a self-published author, has to read with bifocals and a large magnifier. Still, it is difficult to read something lengthy like a book. He has tried e-readers, but has to zoom in so closely that it is difficult to navigate through the pages. And still, avid readers know that there is nothing like the feel of a book in their hands.
“I miss the feel of a book, the smell of a book, everything about a book,” Bays stressed.
After college, Bays become a teacher’s aide and then a substitute before spending the next 13 years of his life teaching emotionally disturbed children. Several years ago, he had to give up driving. The last time he had it renewed, he was restricted to daytime driving only.
“That was difficult,” Bays stated. “As a teacher, I could not always commute during daylight hours.”
By the time he went to renew his license, his vision had gotten so bad that he no longer felt comfortable behind the wheel.
“By the time I gave them up, it was a no brainer,” he stated.
Just a few years later, Bays also had to give up his career. Then, in 2013, he had to retire from teaching and is now disabled.
“The thing about a disability is you have to realize there are things you have to give up, even if you give them up kicking and screaming,” Bays explained.
Rather than kicking and screaming, Bays chooses to celebrate the things that he can still do. Married to a teacher and with two daughters in school, Bays spends much of his day home alone. With fewer options of ways to occupy his time, Bays dedicates his time to his passions — playing guitar and painting.
“I’ve always had the creative bug,” he commented. “I’m still motivated and ambitious.”
Bays says that he loves guitar because it is not visual but still allows him to be creative. Meanwhile, he loves painting for the opposite reason.
“Painting still gives me a connection to the visual world,” he explained.
Painting also presents him many challenges as he struggles with color and focusing his eyes for detailed work. He tries to keep his paintings simple, only using a few colors and large basic shapes. When he was younger, he did pencil drawings and could sketch out complex paintings. He also has to trust colors by paint labels.
“What helps is that I was painting before I lost my eyesight. It is just adapting old skills to new challenges,” Bays stated.
Bays says sometimes he makes mistakes as a result of his vision loss.
“Sometimes, it looks wrong to me, but others say it does not. But, I have a few where I really do get it wrong,” he confirmed.
Despite the strain and headaches he gets from painting, Bays just finished 100 works of varying subjects.
Bays’ vision seems to have stopped worsening for now. Though it is possible that he may lose his vision completely, he is hopeful because his dad did not and lived to be 87.
Reach Nikki Blankenship at 740-353-3101 ext. 1930.
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