Sightless individuals gain perspective from perceived disability
Sharon Chernick, 74, still does almost everything now that she did before she lost her sight; she takes care of her houseplants and her cat, gets her reading in through audio books and she still buys season tickets to Butler Little Theater each year.
But every once in a while, she’ll misjudge her reach and spill a handful of spaghetti onto the floor that was meant for the pot of boiling water just a few inches from her hand. Because accidents still happen even though Chernick sticks to the capable mindset that another non-seeing person gave to her when she first started losing her sight in her mid-50s.
“You run into funny stuff like that, and you just have to laugh. It was hysterical,” Chernick said. “You can still do anything you want to do, except you have to learn to do it differently. And that stuck with me all these years.”
When Chernick was diagnosed with retinitis pigmentosa, she was in her 30s and had never heard of the condition, which is caused by a genetic mutation. But the optometrist who diagnosed her told her there's no treatment, no cure, “so just go home and live your life.” So she did, and in her mid-50s, her sight closed in from her peripherals and is now “one percent” of what it was before.
But a handful of years ago, Chernick caught a television interview with Judy Kahl, who was promoting the Foundation Fighting Blindness, where she mentioned that she, too, had a condition that made her lose her eyesight — retinitis pigmentosa. Chernick got in touch with Kahl, and now helps the Foundation Fighting Blindness, and works with the Blind Association of Butler and Armstrong Counties, to help other people navigate a world without sight.
“There is a world of help,” Chernick said. “If you start losing your sight, my biggest suggestion is don't fold in and quit living. Stay involved, stay active.”
Chernick has lived in her current home since 2015, and has become so familiar with the place that she can navigate its rooms on her own with just a little bit of feeling around. She has a cat, keeps houseplants, decorates and even has a television and photos stand on shelves around her living room and dining area.
Chernick said it’s easy to navigate her home, but entering an unfamiliar space leads her to need some help, whether it be from her white and red cane, or from someone she trusts, including people from the Blind Association.
As she explained, her eyesight started closing in from her peripherals, so her central vision is all that barely remains. Chernick said she learned that her mother, who had great eyesight, was a carrier of the gene that leads a person to develop retinitis pigmentosa, and her sister has a version of the condition that slightly differs from her own.
“My sister is seven years younger than me, she's my only sibling, she also has the condition but her condition manifested where she has no central sight but she has peripheral,” Chernick said. “I can see forms. It's like light and shadows for the most part. What I really miss with having this condition is I don't see people's faces anymore.”
Her perception of colors is also nearly gone, save for one exception.
“I don't see colors except when I dream,” Chernick said. “I dream in vivid color, and it's like awesome. I wake up and go, 'Wow, was that cool.'”
Chernick worked at OPM in the Boyers area when she began losing her sight, and said the company actually hired a specialist who helped her continue working there as her sight deteriorated. She had to stop driving during her tenure at the facility, though, but she found Butler Area Rural Transit, which gave her and some other workers rides to and from the site each work day.
It was another resource Chernick learned about after her sight started disappearing. While her’s left her relatively slowly, she said it actually helped her mentally adjust to the idea of being blind. Others who have similar conditions to hers have reacted differently, Chernick said, but she encourages them not to lose hope because “losing your sight isn't the super tragic thing that everybody thinks it is.”
The Blind Association and the Foundation Fighting Blindness have resources for non-seeing people, people losing their sight and sighted people who may come across vision-impaired folks. Chernick said many non-sighted people, including herself, don’t want to be treated differently than anyone else, but there are common courtesies people can extend to non-sighted individuals to make sure they are safe and comfortable.
“Don't look at them as their disability. Don't identify them as their disability. I have a name, and I'm a person, just say who I am,” Chernick said. “When people grab my elbow and start moving me, first of all, that can be a safety issue because blind people have a different sense of balance and a different sense of their surroundings.
“You never touch a blind person without telling them, 'I'm going to touch your shoulder, I'm going to touch your wrist,’ that type of thing.”
Judy Kahl, a longtime trustee for the Foundation Fighting Blindness, said there have been scientific advancements recently that give her hope to decrease the number of people affected by blindness.
“There are trials for various retinal diseases (that) we should have within one to three years FDA approved and then we should start to see some action,” Kahl said.
Kahl has been promoting the Foundation Fighting Blindness and its efforts for decades, having lost her hearing when she was in her teens, and her sight going away a few years after. She has Usher Syndrome, a disease with no cure that can cause loss of vision and hearing, ranging from minimal to complete deafness, and is brought about by a change in genes.
Her whole life, Kahl has been motivated by Helen Keller, a person she learned about before Kahl even started losing her hearing. She saw the 1962 film “The Miracle Worker,” which is a dramatization of Keller’s life, and Kahl thought of Keller once she began losing her sight and hearing.
“When I saw it and I remember how moved I was,” Kahl said of the movie. “ I couldn't think of anything worse than being blind and deaf. Little did I know that I would be confronted with both in my lifetime.”
The Foundation Fighting Blindness event is on Keller’s birthday — June 17 — as a tribute to the late activist. There will be music and fun Saturday afternoon at the Strand in Zelienople, but Kahl said she hopes to screen the film about Keller at a future Foundation Fighting Blindness event.
Chernick said anything that offers a person hope after beginning to lose their sight could help them navigate their new lives, and she credited her faith with helping get her through the emotions, too. But her new life as a non-sighted person has led her to think of every day as a blessing.
“I think the biggest emotion is hope, you have to get hope somehow,” Chernick said. “You're still a person and I really don't feel all that different. I haven't really been able to sort that feeling out but it just doesn't bother me.”
For more information about the Foundation Fighting Blindness’ event, visit thestrandtheater.org.
