The Daily Gazette - Schenectady, NY
Daily Gazette

As blindness advances, artist keeps working
Wednesday, May 14, 2008

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Photographer: Ana Zangroniz

Daisy Hayes shows one of her pen-and-ink drawings at her Saratoga Springs home on Tuesday. At the age of 32, Hayes is legally blind, with no vision at all in her right eye and only about 40 percent vision in her left eye.
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— From her mother, Daisy Hayes inherited both her artistic ability and the rare syndrome that is ruining her eyesight.

Hayes, 32, always liked to draw and paint, but as she goes blind, she finds herself more and more in her easy chair with her pen and ink or paintbrushes.

The Corinth native used to cook and clean for a living.

From 1995 to 2005, she had her own tattoo parlor, Pandora’s Box, in Corinth. The tattoos on her leg, arms and torso she did herself; the ones on her back and shoulder she designed and someone else inked onto her skin.

That’s all part of the past now. “You can’t see, you can’t do tattoos,” she said.

Magnifying glasses that attach to a headset make drawing on paper easier for Hayes, who lives at Embury Apartments with her husband Ron Hayes, 68.

In her chair, she re-creates scenes from her imagination, from photos people bring her or from her favorite magazine, National Geographic. “I’ve even done dogs for people. They bring me pictures of their dogs,” Hayes said.

She works in acrylics and pen and ink, and is currently making sketches for a book of Embury resident Edward Grocki’s poems.

Her work has been exhibited in the activity room at Embury, which picks resident artists’ works to display, and a pen-and-ink drawing of a clown made a circuit with a New York State Council on the Arts exhibit.

Eight years ago, Hayes began losing her vision shortly after she was in a car crash and hit her head on the steering wheel.

“I went to 14 doctors. They couldn’t figure out what it was until they did a DNA test,” she said.

That test finally determined the culprit: MELAS, or mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke syndrome, a progressive nerve disease that affects the entire body. It’s rare and is usually inherited on the mother’s side of the family, Hayes’ doctor told her.

Ron Hayes said the syndrome usually manifests itself when people are very young, and doctors think the car accident accelerated the disorder that lay dormant until then.

Now, Hayes’ right eye is completely blind; in her left, she has about 40 percent of her vision. She uses a cane to get around outside her apartment, and her husband goes with her any time she leaves.

“I’ve memorized this whole building,” she said, noting the Glens Falls Association for the Blind taught her to memorize the route to the staircase so she can escape from her sixth-floor apartment if there’s a fire.

The syndrome will leave her completely blind, will damage her hearing and give her seizures and strokes. It also has numbed her nerves, so she had to learn Braille with her fingernail because she couldn’t feel the bumps with her fingertips.

“You can pinch me with a needle, and I wouldn’t feel it,” Hayes said.

There’s no cure or treatment, and she knows it’s only a matter of time before she is wheelchair-bound.

Hayes, whose husband is 68, is a younger resident of the senior housing complex. “I feel like I stick out, but they say I don’t.”

On the contrary, said Pat Rachiele, marketing assistant for The Wesley Community, Hayes is well-liked. “Everybody loves her.”

It’s easy to see why.

The bubbly woman who smiles and laughs a lot doesn’t let the condition get her down.

“It was hard,” she admitted. “But I’ve had a lot of people help me out. They just tell me to keep doing what I’m doing as long as I can before I go fully blind,” she said.

She already had to stop riding motorcycles because of her hip problems. “I can’t walk a long time. I can’t sit a long time,” Hayes said.

She and her husband, a Glens Falls native, moved into Embury Apartments four years ago. Ron Hayes works for the Wesley Community doing housekeeping and security.



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