For better and worse, flexibility has defined Margie Jones's life. A rare genetic disorder makes her hyperflexible, to the point that she cannot always support her own body parts, and her joints easily disconnect from their sockets. But Ms. Jones's equally agile mind has found ways to adapt to each new challenge, physical and financial, that has emerged over her 78 years.
Marilynn K. Yee/The New York Times
Of a diagnosis of macular degeneration that she received in October, Margie Jones said she was "devastated."
For the past 100 years, The New York Times Neediest Cases Fund has provided direct assistance to children, families and the elderly in New York. To celebrate the 101st campaign, an article will appear daily through Jan. 25. Each profile will illustrate the difference that even a modest amount of money can make in easing the struggles of the poor.
Last year donors contributed $7,003,854, which was distributed to those in need through seven New York charities.
2012-13 Campaign
Previously recorded:
$3,104,694
Recorded Thursday:
$137,451
*Total:
$3,242,145
Last year to date:
$2,862,836
*Includes $596,609 contributed to the Hurricane Sandy relief efforts.
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At least, that was before October, when she found out she was all but certain to lose her eyesight, crushing news for a woman who lives to create art.
Ms. Jones has known she has Ehlers-Danlos syndrome, a hereditary collagen disorder, since her early 40s. Collagen controls all expansion and contraction in the body, and because her body produces it defectively, Ms. Jones has constant spasms, fatigue and pain.
"You turn into rubber," she said.
She cannot stand without support, or lift her head back up after looking down, or applaud at a concert, because "everything comes out the other side of my hand." Her toes can fall out when she walks, requiring surgery to fuse them.
"I don't want to be one of those old ladies sitting in a wheelchair," Ms. Jones said. So she has made it her purpose to find "alternate ways to do almost everything."
Taste, a cafe across the street from her apartment on the Upper East Side, is a source of support, whether it is the booths that help her sit up straight or the staff members who say, sure, she can pay for the egg sandwich tomorrow. On a recent rainy afternoon there, she sipped coffee, gossiped about the other regulars and reflected on coping with a slowly building avalanche of bad surprises.
"I feel resentful that it hurts so much, but I'm also grateful," she said, "for what I can do," including disco, swimming and even taking the stairs.
"I have goals," she added. "That makes having a problem not the No. 1 thing."
Since before she moved to New York City from Jacksonville, Fla., in 1954, Ms. Jones's goals have centered on her art. She studied at the Pratt Institute before opening her own graphic design business, where she made promotional materials for the likes of DuPont and International Paper, carefully cutting silhouettes and gluing letters by hand. She also began teaching at Parsons the New School for Design in 1979 — three years after the diagnosis of Ehlers-Danlos.
Things seemed fine until around 1992, when she began having trouble writing on the blackboard. She invented a story about having gone to the dentist when her tongue went slack in the middle of class. Her condition deteriorated quickly, and she had to stop working in 1994.
Ten years later, another precipitous decline and the resulting medical bills obliterated her retirement savings.
"I had planned my old age," Ms. Jones said. "I had planned a way to make a living." But after a lifetime of "always solving everything," she said, "I started to feel overwhelmed."
That overwhelmed feeling turned out to be something of a temporary condition. Ms. Jones is still full of canny ways to bridge the gap between her Social Security income of less than $1,200 a month and her exacting standards. Several years ago, the last of her savings went toward a Mac laptop, a tool essential for her medical research and her art. With no money left for lessons on how to use it, she hung out at restaurants during the late-afternoon lull, and young waiters became ad hoc tutors as she prodded them with questions.
"I haven't even gotten to Photoshop," Ms. Jones said. Maybe she will now that her digital photography lessons at the community center have just ended.
But she might not get to use those skills for long. Ms. Jones, so accustomed to figuring out a solution, is suddenly facing a black wall. She has no symptoms yet, but a doctor gave her a diagnosis of macular degeneration in October. The deterioration of tissues in her eyes will almost inevitably lead to virtual blindness.
"I am devastated," she said, her voice trembling. "I think I really thought that because I had the Ehlers-Danlos, I wasn't going to get anything else."
When she received a diagnosis of Ehlers-Danlos in 1976, no one knew what to expect, so Ms. Jones learned to adjust gradually as new obstacles arose. The eye disease, which is better understood, is actually harder for her to cope with. She knows the worst case, and doctors have few ideas about how to forestall it.
After a lifetime of making art for clients, Ms. Jones dreamed of creating work only for herself. She likes drawing and etching human figures and wants to start painting. So the threat to her vision is "like a slap in the face."
For her cousin, it was more than he could take. After getting macular degeneration that progressed quickly, she said, he fatally shot himself last fall.
"I don't think I'm going to go out and shoot myself," she said. "I'm going to make it delayed by doing all the right things — of course, I don't know if that's true or not."
Death has been on Ms. Jones's mind. She has been working on her end-of-life paperwork with social workers at the Carter Burden Center for the Aging, a member of the Federation of Protestant Welfare Agencies, one of the organizations supported by The New York Times Neediest Cases Fund. The federation drew $1,500 from the fund to cover prepaid cremation services for Ms. Jones.
"I wanted to get that taken care of because I have no relatives and no children," she said.
Ms. Jones has not been able to go back to Jacksonville in more than four years, but she hopes her ashes will be buried under the oak tree near her childhood home. It was where she played with girlfriends during the aftermath of the Depression, she said, pretending to be Wonder Woman and Brenda Starr — women "who could conquer anything."
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