This is what it is like to go blindMy mother, Nisha Falcigno, has a disorder that slowly deteriorates vision. She says a disability is not a death sentence.
https://www.washingtonpost.com/wellness/2024/11/08/blind-low-vision-skills/My mother, Nisha Falcigno, 61, was diagnosed in her early 30s with cone-rod dystrophy, a rare, genetic eye disorder that slowly deteriorates vision.
For much of her life, she lived as a sighted person with some limitations. But a rapid decline in her vision in the past 10 years now classifies her as legally blind with low vision.
Nisha Falcigno was diagnosed with cone-rod dystrophy, a genetic disorder that leads to a loss of vision. (Photos by Olivia Falcigno for The Washington Post)
By Olivia Falcigno
November 8, 2024 at 7:00 a.m. EST
My mother, Nisha Falcigno, 61, was diagnosed in her early 30s with cone-rod dystrophy, a rare, genetic eye disorder that slowly deteriorates vision.
For much of her life, she lived as a sighted person with some limitations. But a rapid decline in her vision in the past 10 years now classifies her as legally blind with low vision.
Over 50 million American adults 18 and older self-report having some vision loss. “Of these, 3.89 million adults have a lot of trouble seeing, even when wearing glasses, and 340,000 cannot see at all,” according to estimates from the 2022 National Health Interview Survey.
Low vision is “a chronic visual impairment that can’t be corrected with glasses, contact lenses or medical treatments,” according to Johns Hopkins Medicine. And many blind people can have low vision.
“While many may think of blindness as a complete loss of sight, the reality is that it exists across a wide spectrum, with most people still retaining some vision,” reports the American Foundation for the Blind.
Since my mother was no longer able to drive, she left her suburban home in Connecticut, where she had lived for 25 years and raised her children, to return to New York City. The grid system and her familiarity with the city made it an ideal place to live. “It’s one of the only places I knew with my eyes closed,” she said.
https://www.washingtonpost.com/wellness/2024/11/08/blind-low-vision-skills/#:~:text=She%20found%20support%20in%20rehabilitative%20services%20at%20the%20New%20York%20State%20Commission%20for%20the%20Blind%2C%20Lighthouse%20Guild%20and%20VISIONS.%20She%20learned%20to%20walk%20with%20a%20white%20cane%20and%20read%20Braille%20and%20trained%20in%20screen%20reader%20software%20such%20as%20Job%20Access%20with%20Speech%20(JAWS)%2C%20audio%20descriptions%20and%20voice%2Dover.
She made adjustments so she could do simple tasks such as pouring a glass of water — by using bright-colored drinking glasses instead of clear ones — and complicated ones such as reading instructions on a medicine bottle — by using a screen reader service — tasks that are often overlooked by sighted people.
“My loss of vision was debilitating. I didn’t know what to do first. It was like learning how to walk again,” my mother said.
At first, using a white cane (with a red bottom) was tough for her because it communicated her “secret” to the world, she said.
“An all-white cane means that the user is completely blind. A white cane with a red bottom means that the user has low, but some usable vision. A white and red striped cane means that the user is totally blind and/or deaf,” according to the Central Association for the Blind and Visually Impaired.
Then, my mother realized, it was a superpower. She found community wherever she went because people could identify her disability and would offer to help. She made friends with her Braille teachers, grocery store employees and many others who have supported her through this life adjustment. “When I was sighted, there was so much I didn’t see. But now I see people as they truly are,” my mother said.
Before her vision declined, she enjoyed yoga, cooking and writing notes to her loved ones. She still does, with the aid of assistive devices. She uses the cane to walk to yoga, tactile bump dots to label her oven for cooking and a template to sign notes.
My mother also finds it rewarding to be of service to others, as so many were to her. As a cancer survivor, she volunteers at the hospital where she was treated, lending emotional support to patients.
And she uses her advocacy skills as an attorney on the board of an organization that empowers the visually impaired and blind community.
“I see it as the answer to my why. Helping cancer patients and advocating for those with vision loss redefines my purpose in life,” my mother said.
She hopes to remove the stigma that she said the sighted world projects onto the blind community. She wants to highlight the skills of disabled people and push back against the notion that a disability is a death sentence.
Her strength has taught me to be more resilient. I believe there is no battle that is insurmountable because I watch my role model overcome hurdles daily. I’ve watched her fall and get back up, stronger every time. And often, when I walk into her house, I learn about a new gadget or tool she has discovered to help her perform her daily tasks.
Since I was a child, I have been asking, “How does she do that?” and my mother has been responding jokingly, “Very carefully.”
Now, when people ask me how she does anything with her visual impairment, I respond, jokingly, “Very carefully.”
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