Happy Thanksgiving! I am always so aware of how lucky I feel as someone with diabetes that at least how well my diabetes is is pretty much up to me. I am reminded again this morning of how lucky I am as I read the "Neediest Cases" in the New York Times. Many readers know that this column begins every November and last three months - typically the stories are on page B1 of the New York Times. They are heart-wrenching and apt to make anyone with a job and health insurance and family or friends feel indeed how lucky they are. The drive started in 1911 and this is its 95th year - it is said to have started on a cold Christmas Eve that year, "when a down-on-his luck man approached Adolph S. Ochs, the publisher of The New York Times." The next Christmas season, the Times published 100 brief profiles, as the paper describes, "tiny windows into disparate situations that evoked readers' compassion, and provided them a way to improve people's lives in their community."
The paper says it receives contributions from a few dollars up to $1 million and go to seven charities. 100% of the money raised goes to those in need as the NYT covers all the administrative costs. Since 1912, almost $160 million has been dispensed, plus $62 million was raised for the families affected by the attack on the World Trade Center on 9/11.
We highlight today's column because it is all about those suffering with diabetes. It seems right that this is on Thanksgiving, because those of us with the illness but not in dire circumsances like those described in today's piece (see below) have so much to be grateful for. We also note thet contributions to this fund have been declineing and last year fell 8%. This is probably largely due to Katrina and the tsunami in Asia, but if you have any money to spare, I always think the Neediest Cases is a good place for it to go. Too, there are many others - and this one is very focused on New York - but it's also true that one in five New Yorkers -- and one in three New York children -- lives in poverty, much higher than national averages - and this is also a city suffering far more than its share from diabetes. Says the NYT: ''This fund cannot answer the needs of them all,'' he said, ''but it can, true to its historic name, relieve the suffering of the neediest.''
Scroll down to see today's piece and if you would like to donate, please visit:
Finding Help to Bear the Load as the Burdens of Diabetes Pile Up
By KARI HASKELL
Published: November 23, 2006
Edward Monroe of East New York, Brooklyn, calls diabetes “the sugar,” a mild name for an insidious disease. It killed two of his cousins, a niece and, two years ago, his brother. His mother is in constant pain caused by diabetes. And now Mr. Monroe, who has had two operations to remove diabetes-related gangrene from his left foot, is afraid that the disease will take his leg.
But his fear of having a leg amputated is eclipsed by an even greater concern: that his two boys, whom he raises alone on public assistance, could be placed in foster care.
With the help of the Brooklyn Bureau of Community Service, one of the seven charities supported by The New York Times Neediest Cases Fund, Mr. Monroe received financial assistance and help from home attendants that has kept his family intact.
Problems like Mr. Monroe’s are all too common among poor New Yorkers who are afflicted with diabetes, a growing scourge in the city. The circumstances in some of the city’s poorer neighborhoods, where cheap fast-food restaurants are plentiful and fresh produce is scarce, can pose a special challenge for diabetics, whose symptoms may worsen when they eat the wrong things.
Without proper health care, symptoms like blurred vision and excessive thirst are often misinterpreted or dismissed. These are the first signs of Type 2, or adult-onset, diabetes, in which the body is unable to convert sugar into fuel. As the disease progresses, so do the complications. Diabetes is the leading cause of blindness and non-traumatic amputations in the United States, according to the federal Centers for Disease Control and Prevention. Nearly two-thirds of diabetics die of heart disease.
Medications to treat diabetes are expensive, and there is no cure. For the poor of New York, many of them uninsured, the disease can force difficult decisions between seeking treatment and being able to provide for a family. Almost 50 percent of the poor or working poor in the city have no more than $500 in savings, according to a recent study by the Community Service Society of New York, another of the charities supported by the Neediest Cases Fund. The fund’s 95th annual campaign began on Nov. 4 and will continue through Feb. 9.
For people struggling with the burdens of diabetes and poverty, an emergency infusion of money from the fund can ease the despair the disease can cause, provide time to get back on track and help restore dignity.
The money raised during this period will continue a long history of providing help to people like Mr. Monroe, who has been battling the disease and raising his sons alone since their mother abandoned the family several years ago.
Keeping a Family Afloat
“Sometimes I look at my leg and it is really, really bad,” said Mr. Monroe, 43, gripping his cane and carefully settling into a living room chair. His left calf was swollen and black. “Every doctor tells me something different.”
Before diabetes, Mr. Monroe was a strong man who hauled heavy boxes and labored in stockrooms. He would spend his free time with his sons, Shakheem Scott, now 8, and Rasheem Monroe, 7. They enjoyed fishing on lazy weekend afternoons.
But since his second foot operation, last fall, Mr. Monroe is more likely to stay upstairs and watch his sons play in the backyard of their apartment building. They sometimes fight over a bike. “I could only afford one,” he said. “They have to learn to share.”
The operation last fall removed the gangrene from his foot, but not the throbbing pain. “The pain, I can’t tell you about the pain, boy,” he said, shaking his head.
On his bedside table, there is a cluster of pill bottles. One prescription is for pain and one controls his blood pressure. He also takes pills for his diabetes, in addition to injecting insulin twice a day.
Working a stockroom job has been impossible since it became painful just to stand up, he said.
Mr. Monroe lives on Supplemental Security Income payments of $651 a month and $174 a month in welfare. Medicaid covers most of his medical care. He pays $225 in rent for his subsidized apartment and $125 for electricity every month. What is left is used to pay for transportation to doctors, co-payments for his medications, food and, if possible, clothing for the boys.
“I didn’t think I was going to come down with sugar,” he said. “My mother warned me not to eat ice cream. I didn’t listen.” Now he is afraid to eat, he said. Unable to afford fresh produce, he buys canned or frozen food.
And he sometimes breaks down and gives the boys “kid food” like frankfurters or cereal. He spends $60 in addition to $93 in food stamps for groceries every month.
“I raise my boys like my mother raised me and my four brothers. She told us to love one another,” Mr. Monroe said. “That’s the same thing I tell to my boys.”
Since his foot problems began, he has worried about losing the children. That possibility seemed imminent about a year ago.
He and the boys were living in a shelter when he had the foot operation last fall. While he was recovering in the hospital, an Administration for Children’s Services caseworker inquired about the boys, who were staying with Mr. Monroe’s mother in another part of Brooklyn and were not going to school.
When he was released from the hospital, the children’s services agency asked the shelter to help Mr. Monroe obtain the subsidized apartment in which he now lives.
The agency also contacted the Brooklyn Bureau of Community Service. Marilyn Mellien-Harris, a caseworker who visited Mr. Monroe in his new home, saw that the boys had outgrown their clothes and that the apartment was bare. With $648 from the Neediest Cases she bought some pants and shirts and a dining table and chairs. She also assigned morning and evening homemakers, who tidy the apartment and prepare the boys’ meals and get them ready for school.
“I am grateful for the table and for their service,” Mr. Monroe said. “Without them I would be lost. I was doing it before, but I had more strength then.”
Most of the other furnishings in the home are items that Mr. Monroe found on the street. “You would be surprised with what people throw away,” he said. He spent $175 at a secondhand store to buy bunk beds for the boys. But just before he sat down in his living room for an interview, the bunk beds collapsed.
“When I see it crumble, I said, ‘Oh, my God, now I have to focus on that,’ ” Mr. Monroe said. He stood up, leaning on a cane, and limped into the boys’ room. He directed the boys to put the twin mattresses on the floor.
“I don’t want to sleep on the floor,” Rasheem said in a tiny voice.
Mr. Monroe responded: “But the bed fall apart. Now Daddy’s got to do something to get you another bunk bed.”
“When?” asked his son.
“I can’t tell you that, Ra Ra,” Mr. Monroe said. “I can’t tell you that, boy. I don’t know myself.”
The Brooklyn community service bureau responded, using $478 of Neediest Cases money, and within weeks Shakheem and Rasheem had new bunk beds.
Fear as Eyesight Dims
Before Nusrat Anwar, 60, and Mohammad Anwar, 61, of Forest Hills, Queens, learned nine years ago that they had diabetes, they were content, knowing that they were raising two wonderful children.
“I was so happy when my girls were born, I remember giving everyone presents to celebrate,” said Mrs. Anwar, a teacher at the Therese Cervini Head Start Center in Queens.
She pulled an album off a bookshelf to show off family photographs, including some of her daughters, Faroghe, 20, and Fatima, 18.
“But now I can’t see their faces,” she said, leafing past pictures of her own wedding 20 years ago in Pakistan, and stopping to pull out a photograph of a young woman with long raven hair — Faroghe. Though she could not see the picture clearly, she knew it by its size.
Mrs. Anwar described her blurred vision: “It is narrow from the top, then spreads, then extends and squeezes.”
“When you put a pencil in the water, it is dented. That is the same with me,” she added.
Her vision is getting worse despite two cataract operations and laser surgery. She is worried that she will lose her sight completely. “I’ll miss seeing my children, my work, colors,” she said, her voice drifting off. “I won’t be able to read anymore or write poetry.”
The Anwars, unlike Mr. Monroe, do not have a strong family history of the disease. They are not overweight, and they do not eat sweets or drink alcohol.
“I don’t know why I have the disease,” said Mrs. Anwar, who moved to the city from Pakistan to join her husband just after they married. “Sometimes I blame New York.”
Mrs. Anwar learned that she had diabetes after an annual health exam at her school, which is financed by Catholic Charities of Brooklyn and Queens, another of the seven agencies supported by the Neediest Cases. Shortly after the diagnosis, her husband’s doctor told him that he, too, had diabetes.
The illness affects Mrs. Anwar more than it does her husband, she said. Even with her medication and a change in diet, her cholesterol level is too high. “My doctor says if I don’t get it under control, my diabetes won’t improve,” she said.
Her sugar levels are not Mrs. Anwar’s only health concern. She takes pills for arthritis, osteoporosis and the canker sores on her tongue. She has drops for a recurrent ear infection. Last month, she had a fungal infection on a toe.
The Anwars have health insurance, so visits to a doctor cost them a $10 co-payment. But even though their plan covers 80 percent of the cost of their prescriptions, the Anwars must pay full price at the pharmacy and wait for the insurer to reimburse them. “When you have to pay $400 to $600 at a time it is really hard,” Mrs. Anwar said.
With the out-of-pocket costs for medicine and a mortgage payment of $1,900 a month, they barely get by on her salary and the money her husband makes as a driver for a car service, she said. As soon as money comes in, she pays it out.
“Sometimes I am afraid something will happen to me,” she said. The family has no savings. Recently the Anwars did not have $1,000 for college fees for Faroghe, who is a junior studying communications and journalism on scholarship at Fordham University. Faroghe’s wages from a part-time job paid for textbooks.
Mrs. Anwar received $1,000 from an unexpected source: the Head Start school where she works. Natalia Sabatini from Catholic Charities of Brooklyn and Queens was able to get the money, from Neediest Cases, to cover Faroghe’s school fees.
“I couldn’t believe it,” Ms. Anwar said. “ I was really grateful.”
Faroghe, too, was appreciative. “It is one less thing to worry about,” she said, looking at her mother.
A Fresh Start in Life
Jacqueline Drake, who turns 40 today, has lived with diabetes for 12 years. With help from the Community Service Society of New York, an agency supported by the Neediest Cases Fund, she said, she is finally ready to deal with her disease.
“Forty is going to be my year,” said Ms. Drake, sitting on a chair in her apartment in Park Slope, Brooklyn, surrounded by a bookshelf, a new sink, stacks of pans and some boxes. “I have so much to be thankful for.”
“I have a brand-new apartment, I have a job, my mother is alive and well, and it’s a better time now,” she said. “Before it was so bad.”
She says she has put an end to years of destructive choices in relationships and food, and she has learned to manage her diabetes. As a birthday present to herself she plans to have gastric bypass surgery within the next year.
“You see this?” she said, holding her belly. “I am morbidly obese. I thought I was just fat.”
Ms. Drake, a home health aide, knows that the operation will not cure her diabetes, but it is likely to lead to greater mobility and make it easier for her to exercise. The cost of the operation will be covered by health insurance provided through her union, 1199 United Healthcare Workers East. Union representatives, she said, determined that paying for her surgery would prove less expensive in the long run: she estimated that insulin costs her insurer about $1,500 a year.
Her weight problem, she said, stemmed from bad eating habits she formed in childhood. It caught up with her in her late 20s, when she began to experience one of the first symptoms of diabetes.
“I was drinking, drinking, drinking — soda, water, whatever I could drink,” she said. Her mother recognized the warning sign and persuaded her daughter to go to the emergency room, where Ms. Drake found out her glucose level was dangerously high — 960, far beyond the normal range of 80 to 130. “They were surprised I was actually able to walk into the hospital,” she said. “I went straight to insulin.”
At the time, she worked hourly jobs and did not have health insurance. Not understanding the gravity of the disease, she said, she stopped taking the insulin because it was expensive and inconvenient. Soon her eyesight became blurred and her body weak, and one day she passed out. For the second time in six months, she found herself in the emergency room.
“Because I was working, I couldn’t get Medicaid or qualify for food stamps,” she said. “You are right in the middle crack, and you are trying to reach out. It was like, don’t you all see my hand? I need help.”
Without help, she said, she could not always afford to buy insulin. She wound up back in the hospital again.
Becoming a home health aide provided Ms. Drake with a bit more stability. Her assignments sometimes required her to live with elderly clients for long periods of time; when they did not, she would rent cheap apartments and depend on what her clients had for food — usually provisions from food banks. It was not the best diet for her diabetes, but she had no other choice, she said.
“I’m a home health aide,” she said. “You wouldn’t believe that we take care of ourselves worse than anyone.”
By the beginning of 2001, she was working 20 hours a week and qualified for health insurance through the health care workers’ union.
While she was beginning to succeed at her job, Ms. Drake was not doing as well in her personal life. She had met a man who was charming and made her feel important, but who partied too much, she said. She thought she could help him, she said, but soon he took advantage of her good will and put her in financial peril.
In early 2003 they moved in together, signing a lease on an $1,100-a-month two-bedroom apartment in Crown Heights. But she discovered he was cheating on her while she was at work, and by November 2003 she had moved out.
“I saw so much potential,” she said. “I thought by helping him I could help myself, but he ended up pulling me down.” Ms. Drake found a one-bedroom apartment in the same complex for $775, and she thought her name had been taken off the first lease.
By the middle of 2004, she said, she hit a dry patch at work and could not pay her rent, which had increased to $815. She owed more than $3,000 in rent.
When she approached her union for a loan, she was turned down because her name was still associated with the apartment she had shared with her former companion. He had left it, owing $7,000 in back rent.
“I was so frustrated,” she said. “I wasn’t going to pay his rent.”
At housing court she was given the number of the Community Service Society, another of the seven charities supported by Neediest Cases.
She spoke with Madelyne Hidalgo, a caseworker, who helped Ms. Drake with the paperwork needed to clear her of responsibility for her former companion’s back rent. Ms. Drake received the loan from her union, but she still owed slightly more than a month’s rent and was on the verge of eviction.
Ms. Hidalgo used $914 in Neediest Cases money to pay the outstanding amount. Ms. Drake said settling the matter made her feel that her life could begin again.
Last April, she learned of a vacancy in the Park Slope apartment building where her mother, Ellen Drake, 66, lives; the previous tenant, a diabetic elderly man whom Ms. Drake had become friendly with while visiting her mother, had died.
At $775 a month, the rent-controlled apartment was affordable. Ms. Drake got the apartment, but did not have money to move her possessions out of storage. Ms. Hidalgo helped her again, using $594 from the Neediest Cases for the move.
“I can’t believe I have my stuff back,” Ms. Drake said. Her crystal candy bowls are especially precious to her, she said, because they were gifts from women whom she once cared for.
“Before I was in contact with Community Service Society and the Neediest, I was depressed and all my bills was backed up,” She said. “You name what was wrong, was wrong.”
But her outlook has improved. “Forty is going to be my time,” she said. “It is all about me.”