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Diabetes, part 2
Living at an Epicenter of Diabetes, Defiance and Despair
Bad Blood
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NY Times
January 10, 2006
By N. R. KLEINFIELD
Currently diabetes is the third leading cause of death in the United States. It is a disease in which the body does not produce or properly use the insulin necessary for the body to absorb glucose (sugar). The glucose then accumulates in the blood-stream until levels get dangerously high. Diabetes affects an estimated 18,200,000 people and there are another 15,000,000 not yet diagnosed, just in the United States alone!
Globally, the statistics are staggering.
Millions of people find out from their family physician that they will have to change their lifestyles as well as having to take medications and blood tests for the rest of their lives. Complications from diabetes can lead to blindness, kidney failure, heart disease, nerve damage, limb amputations and even death.
What is Diabetes??
Type 1 and Type 2 diabetes are diseases in which the amount of sugar in the blood rises to dangerous levels. Neither is truly curable. Type 2 is more prevalent, representing more than 90 percent of all cases.
Blood sugar, known as glucose, is the body's primary fuel and is produced during digestion. The sugar is then shuttled by the blood to cells with the help of the hormone insulin. In Type 1, a gland, the pancreas, no longer produces insulin because the immune system has destroyed the cells that make it. Thus sugar builds up in the blood, causing internal damage, while cells starve.
In Type 2, the body can generally produce insulin, but the diabetic's cells cannot properly use it. In some Type 2 cases, insulin production is insufficient.
(A third type, gestational diabetes, afflicts a small number of pregnant women. It usually vanishes after the birth, though it increases the woman's risk of developing Type 2.)
How people get diabetes remains unclear. Type 1 typically surfaces in childhood and is believed to stem from genetic factors activated by an environmental trigger, like a virus. Type 1 diabetics require daily insulin injections to live.
Traditionally, Type 2 appears in people over 40. Its onset is also tied to genetics, but is linked to obesity and inactivity as well. Researchers agree that in many cases, the disease can be delayed, and possibly prevented, through exercise and weight loss.
At the same time, individual behavior cannot explain everything. Most overweight people never develop Type 2 diabetes. And thin people do get it.
But most Type 2 diabetics are overweight, especially those who carry extra weight in their abdomens.
People typically have Type 2 for 7 to 10 years before it is diagnosed, by which time its untreated presence will often have led to complications.
Type 2 diabetics typically take medicines that improve responsiveness to insulin and stimulate the pancreas to make more of it.
NY TIMES ARTICLE Jan 10 2005
Santos Alicea tottered haltingly over to the art shop in East Harlem, his legs screaming. The regulars knew what he was going through. They always did - the diabetes was speaking. He confirmed this with numerical rigor: 228, his nasty blood-sugar reading this morning. Nods all around. They had ugly numbers, too.
James De La Vega owned the art shop on Lexington Avenue, near 104th Street, and regarded the sidewalk out front as his living room. There, with his friends and family, he shared a lot over the years: Latino art and culture, the slow cadences of East Harlem life, runs of hard luck. And diabetes.
Indeed, in East Harlem, it is possible to take any simple nexus of people - the line at an A.T.M., a portion of a postal route, the members of a church choir - and trace an invisible web of diabetes that stretches through the group and out into the neighborhood, touching nearly every life with its menace.
Mr. De La Vega, a 33-year-old self-styled "sidewalk philosopher" whose murals and sidewalk chalk drawings are familiar neighborhood ornaments, has a mother with diabetes. His stepfather's case was confirmed in March. And a number of Mr. De La Vega's friends who occupied his chairs or sat in the bordering garden, well, they had it. Mr. De La Vega said he would probably get it, too.
In East Harlem, in fact, it seems peculiar if you don't have it.
Months spent in the easy company of the shop's dozen or so regulars reveal something more than just the insidiousness of Type 2 diabetes, the disease's most common form. Those months, and conversations, disclose with relentless consistency the human behavior that makes dealing with Type 2 often feel so futile - the force of habit, the failure of will, the shrugging defeatism, the urge to salve a hard life by surrendering to small comforts: a piece of cake, a couple of beers, a day off from sticking oneself with needles.
That behavior is all the more evident in East Harlem, a gritty neighborhood where problems back up on people like fallen dominoes.
For as bad as diabetes is in New York, it is staggeringly worse in East Harlem. Precise numbers are hard to ascertain, but the prevalence of the disease, factoring in an estimate for undiagnosed cases, has fluctuated in recent city health department surveys between 16 percent and 20 percent, as many as one in five adults.
People in East Harlem die of diabetes at twice the rate of people in the city as a whole. Diabetes-related amputations are higher than in any other part of New York. For hospitalizations linked to diabetes, East Harlem is the third-worst neighborhood. It has the largest percentage of obese people, whose weight makes them more susceptible to Type 2.
The fact that East Harlem is roughly 90 percent Hispanic and black, groups believed to have a genetic predisposition to the disease, explains part of the problem. There are also other factors: bad food habits, little exercise, rampant poverty and, according to health officials, poor access to medical care.
In East Harlem, then, you're in the teeth of an epidemic, a place where, as health officials warn of a worsening crisis, you can see the ruins the disease has already wrought.
Most of the afflicted people in East Harlem have Type 2 diabetes, the focus of this series, which has been linked to obesity and inactivity, as well as to heredity. (Type 1, which comprises only 5 percent to 10 percent of diabetes cases, is not associated with behavior, and is believed to stem almost entirely from genetic factors.)
East Harlem is not just any neighborhood. It is the fabled home of Rao's, the always-booked Italian restaurant, and El Museo del Barrio, which celebrates Latin culture. Early on, it was the repository of Russian Jewish, Irish and Italian immigrants, congealing into the city's hub of Italian life; after World War II, a Puerto Rican influx converted it into Spanish Harlem.
Recently, there has been an uptick in Mexican, Dominican and Asian arrivals, and stirrings of gentrification. But the core population that has been its ballast for a half-century is being eroded by forces as powerful as real estate values and immigration waves: a deviously complicated disease, poverty and simple human frailty.
'Then I Started Cheating'
The sun was piercing, and the light banged off the side of the art shop. The air was stippled with fragrances of fried meat. Crammed inside the claustrophobic interior were assorted paintings, decorated mugs, greeting cards and other oddments. Elsie Matos, Mr. De La Vega's mother, sat out front, her dark hair in a ponytail. The two of them still lived together. She was 56 and worked in the office at a local public school.
She discovered her diabetes coincidentally, as many do, nine years ago. A boil on her left thigh refused to heal. A blood test told her what she didn't want to know. Her fasting blood-sugar reading was nearly triple the 126 milligrams per deciliter that defines the illness.
She was no stranger to the complexities of diabetes. A few years ago, an East Harlem coalition fighting the disease enlisted her son to sketch some pithy warnings. He did this for brochures; and he scattered chalk drawings across the sidewalks of East Harlem, depicting his barefoot mother in a sun dress and hoop earrings, beseeching people: "Eat well and exercise!" "Test your blood for sugar!" "Check and protect your feet!"
It turns out that the woman in his sketches was a version of Ms. Matos that had ceased to exist. She was no longer that thin. And like most people burdened with the disease, whether they lived in East Harlem or Chelsea or Jamaica, Queens, she toggled back and forth between obeying its dictates and ignoring them.
When she got the diagnosis, the doctor told her to shed 100 pounds. With a crash diet she did just that, slimming down to 150. She stayed thinner for a year.
"Then I started cheating," she said. "Sandwiches. Frankfurters. I didn't care. I didn't think it would matter."
She was put on pills. Those who have diabetes usually suffer from related conditions, especially high blood pressure and high cholesterol, and often swallow 8 to 10 pills a day. Ms. Matos had high cholesterol and asthma.
She was warned that she had to control her lust for calorie-rich food, that taking pills was not enough. Doctors like to say that patients can eat their way through the pills. And a cruel truth of diabetes care is that many oral medications prompt weight gain. Oral diabetes drugs also tend to lose effectiveness. They sometimes work for a few years, then have to be teamed with other drugs. Anyone who has diabetes long enough is likely to find herself on insulin.
Ms. Matos frowned at her stomach. She said she was 165 or 170 pounds, still too much. "The doctor said if I didn't diet, I'd have to take the insulin," she said. "I don't want the needle."
Despite that dreaded prospect, she had difficulty satisfying the disease's persistent needs. Among widespread chronic conditions, diabetes is arguably the most arduous to control.
Diabetics not only need to take an array of drugs, but must also prick themselves one to four times a day to check their blood sugar, keeping a log of the results, and then adjust their eating habits according to the readings. Blood-sugar meters are much improved from years ago, when they had to be plugged in and warmed up for an hour. But some diabetics skip the readings, filling in fake numbers to show their doctors.
For many Type 2 diabetics, doctors say, a half-hour of daily exercise and the loss of as little as 10 to 15 pounds can make a big difference in their health. Still, that can be a formidable challenge.
Understandably, people talk about wanting to take a vacation from diabetes, but it grants no time off.
Ms. Matos often found herself succumbing to a lifestyle guaranteed to make her sicker. Until it has been in the system for a long time, diabetes doesn't hurt. In East Harlem, what doesn't hurt is often ignored.
She pointed out that many people in her world were stressed out and depressed. There are other serious health issues, like asthma and H.I.V., the signposts of many poor neighborhoods. Their cobbled-together lives drain residents of their resolve. And so they cede diabetes the upper hand and eat what tastes good to them to counteract the gravity of unhappiness.
So if diabetes didn't cause her pain, as it didn't most of the time, then Ms. Matos dismissed it as a problem for another day.
"Listen, if I want to eat a piece of cake, I'm going to eat it," she said. "No doctor can tell me what to eat. I'm going to eat it, because I'm hungry. We got too much to worry about. We got to worry about tomorrow. We got to worry about the rent. We got to worry about our jobs. I'm not going to worry about a piece of cake."
Ms. Matos gave a feeble glance at a shopper mulling the mugs and T-shirts. She carried her glucose meter around, but didn't like to use it regularly, especially when she was with friends, a vanity of hers. "It's embarrassing to check your blood in front of people," she said. It irked her, this machine laying a claim on her.
Diabetes, then, had worn her out. She was quite direct about that. "I hate it," she said. "I hate diabetes. I'm tired of checking my blood three times a day." She tidied up some merchandise.
"You get used to it, but you know what?" she said. "You don't get used to it."
Society of the Sick
First Raul Rivera parked his bike, then he slid into a chair. A shadow fell over his face. The street was characteristically cacophonous. The door to the art shop was agape.
Diabetes hadn't visited him yet, but his stomach was expanding, and that gave him pause. He knew what diabetes did. It made you somebody else.
He was 50 and lived with his mother. She was 66, and after more than a dozen years with diabetes had been hit by its full-court press. Kidney dialysis three times a week. Open-heart surgery. Dependent on a wheelchair. Legally blind. It was Mr. Rivera who had to inject her with insulin twice a day. "She's black and blue from all the needles," he said. Lately, she had been in the hospital more than out.
Mr. Rivera, after a back injury, quit his job as a parking attendant 15 years ago. He had no income or insurance. He had not been to a doctor in several years. Last time he saw one, he was told he had high cholesterol and given medication. He didn't take it. He didn't like pills. "That's me," he said.
Juan Concepcion, 57, Mr. De La Vega's stepfather, materialized. He had been a truck mechanic, until he became disabled by rheumatoid arthritis. In March, he spent 12 days in the hospital after nearly passing out, and his diabetes became bleakly clear. Ten years ago, his father died of diabetes. "He kept taking sugar," Mr. Concepcion said. "He kept drinking beer. He was a stubborn guy. They cut one leg at the ankle. Then they took the other above the knee."
He stared unblinkingly into the distance. "I felt I was too strong for it," he said.
He drew on a cigarette, ashes fluttering in the air. He knew he should quit. Smoking is especially bad for diabetics. "I check my blood every morning and every night," he said. "I'm supposed to do it four times, but sometimes my fingers hurt and I don't do it as often." He was trying to lose weight. "I loved my coffee with three sugars. My Pepsi, Coke, beer." He was given a book about diabetes by a doctor. "But I didn't go deep into the book, because it makes me lose my mind," he said. "I'm going to do it slowly. But I know, this is a killing machine."
He shook his head. "Everywhere you go here, someone tells me they have diabetes. I'll go into a store and ask for coffee, no sugar. They say, 'Oh, you have diabetes?' "
He was having trouble figuring out how to fit the disease's maxims into his life. "I'm trying to give up beer," he said. "I would drink at 7 at night until 3 in the morning, watched boxing and baseball, drinking beer. I drank 15 or 20 beers in a night."
He had been avoiding his drinking buddies. "I have friends who have diabetes and they continue drinking," he said. His doctor told him to avoid stress. "How do you do that, not put worries in your head?" he asked. "I have to go on living. I've always been a fast guy."
Across East Harlem, there is a great range in response to the disease: some diabetics embrace the daily regimens that now frame their lives, many others constantly struggle to. Doctors say the will to fight the disease is often eroded by its psychological toll.
Sitting with these men and women whose lives were pervaded by diabetes, one couldn't escape feeling that they shared a dark cosmic joke - that diabetes was too much to master at the individual level in a world that had become so hospitable to it.
Mr. Concepcion said: "Everything about this neighborhood, the pollution in the air, it all makes you sick. Don't get me wrong, we love this place, we love Spanish Harlem. But it does stuff to us. Now it's giving us all diabetes."
Mr. De La Vega nodded. "We love eating trash," he said. "We grew up eating McDonald's, and I still find myself eating candy and chocolate cake."
People got huffy about their doctors. "Mine tells me, 'Lose weight, exercise more,' " Ms. Matos said. "Let him live my life and see."
Mr. Rivera said: "You know what I think? I think there's a cure. We're the poor, so they don't want to give it to us."
Mr. Concepcion rubbed his forehead. "Since I got the diabetes, maybe twice a week I sit down and pray," he said. "Because if I don't take care, I'm going to go down the drain. I put myself in God's hands."
Mr. Rivera bathed Mr. De La Vega with an odd look: "Did Mike have diabetes? The guy who passed away?"
Mr. De La Vega said, "Yeah, he had it."
"He was, like, 300 pounds."
"He would brag about eating a pint of ice cream every night."
"He used to eat six pork chops in one sitting. Then he would drown them down with a quart of Budweiser. What was he when he died?"
"Fifty-four."
"You know Bigwig? He's 42. He just found out he has diabetes. Like, two weeks ago."
New Rhythms, Old Patterns
Bigwig pulled up a chair beneath a thicket of light. The streets were puddled from morning rain. His real name was Luis Hernandez. His job was route supervisor for a produce company. He was a veteran member of the art-shop crowd, and now a new admission to its diabetic subset.
His vision had been getting a little blurred - he'd look at a paper and it was like 3-D vision; one morning he woke up and one eye wouldn't focus - and a physical found the source. "When they told me, it was like somebody punched me in the gut," he said.
His diabetic mother died in 2004, at 59. She had done little to address her condition. She continued to smoke and eat generously.
He was confused. He said his doctor put him on pills and suggested avoiding juice or sweets, but didn't tell him much more.
He weighed 252 when he got the news. He had cut it to 245. He knew it should be lower. But he found it excruciatingly hard to adopt a new rhythm of life, particularly since it was less appealing than the one he had.
Bigwig had to go. Maria Calderon stopped by to visit Elsie Matos. Give her a moment. Ms. Matos was waiting on a young woman torn between two T-shirts.
Yes, Ms. Calderon had it, too. Seven years since the diagnosis. She was 69. She was 210 pounds, and had been told to lose weight. "I didn't think it was important," she said.
Then, more than a year ago, a solution presented itself, and it was the worst kind. Her grandson was killed in a holdup over a car.
Devastated, she lost her will and her appetite. She shed 60 pounds. Now she was gaining again, six pounds in a month.
"How can you worry about your health when you don't know where you're going to live next week?" she said.
She watched Ms. Matos help the customer. "We are the poor people," she said. "We only get the crumbs. I used to advocate a lot. I got tired. I don't do it anymore. I'm not tired in my heart. I'm tired in my body."
She said to Ms. Matos: "I have a friend, she's diabetic and everything else. She takes 52 pills a day. She has everything in the book. When she calls, she wants to talk for 99 hours. I say: 'My sister's calling. I've got to get off.' "
Ms. Matos said: "What, 52 pills? She's nuts."
Frank Gonzalez had something to say. He was 77, compact, peppy. He used to work as a security guard at a hospital, had clocked 16 years with diabetes.
When things were not going well, as they weren't now, you could see the fanned-up embers in his eyes. Hear his speedy voice: "Diabetes is the worst disease I've ever seen. You can't trust it. Two weeks ago, I got all messed up. You know why? I've got two machines. One gave me a reading of 150. The other machine gave me 130. I said this can't be. So I changed the batteries on both machines. You've got to keep an eye on your machines."
He went on. "Diabetes is something you have to look at from all sorts of angles. It takes a long time to find out the real truth. And you know what? You never find out the real truth."
He went home, a couple of blocks away, to take a blood-sugar reading. He opened a hallway closet, wedged full of supplies - test strips and lancets and pill bottles and batteries. Most, but not all for diabetes. He showed a bottle: Viagra. Opened it and smiled: half-full.
He inserted a strip into his machine. He swabbed his ring finger with alcohol, then pricked it with a lancet. The machine counted down 45 seconds. The reading: 152. High. He stared balefully at the number.
"It could be I've been sitting too much," he said. "I should be out and walking. I don't know, I was going to do the cleaning."
A Geography Lesson
A few things to notice. On Third Avenue, around the corner from the art shop, a banner outside McDonald's proclaimed, "$1 Menu." Down the way, plastered on Burger King, "New Enormous Omelet Sandwich. It's Huge." At KFC, a sign boasted, "Feed Your Family for Under $4 Each."
The art-shop gatherers sometimes talked about 96th Street, the tangible southern divide of a neighborhood and of a disease. Go north of 96th Street and you enter a constricted world laden with poverty. Go south and you find promise and riches, thin not fat, the difference between East Harlem and the Upper East Side, the difference between illness and health.
Go north and the chances of bumping into a diabetic are maybe 20 times greater than if you go south. For the Upper East Side, according to the health department, has the lowest prevalence in the city, about 1 percent.
In East Harlem, people sometimes have to choose between getting their diabetes medication and eating. They sometimes share their pills, cut them in half and take half-dosages. They improvise. Everywhere blare the signals that the best meal is the biggest meal.
Nutritious food exists, but it isn't easy to find. Dr. Carol R. Horowitz, an assistant professor at Mount Sinai School of Medicine, heads an East Harlem coalition trying to improve diabetes care. She oversaw a study several years ago that tracked the availability of diet soda, low-fat or fat-free milk, high-fiber bread, fresh fruit and fresh vegetables in food stores in East Harlem and the Upper East Side.
Stores on the Upper East Side were more than three times more likely than those in East Harlem to stock all five items. It did not seem to matter that East Harlem has more than twice as many food stores per capita as its wealthier neighbor to the south.
Diet on the Down Low
All the same, it was worth asking: Why not stop with the doughnuts and fried calories and eat salads, drink diet soda?
James De La Vega laughed. "We've got cultural differences," he said. "Here, for a guy to eat a salad, he's a wimp. He'll eat a big portion of rice and beans and chicken. The women can't be chumps, either. A woman can eat a salad but has to eat it on the low. She has to do it quiet. They make fun of you: What are you, a rabbit?"
What's wrong with an orange?
Mr. De La Vega said: "Oranges are messy. You dirty your teeth."
Uncontrolled diabetes is a forced death march. Literature handed out in the community underscores this.
Knowledge alone, though, is never enough to change behavior, particularly in an overwhelmed neighborhood. Chocolate cake may be a risk, but it tastes so good on a bleak day. What stops that?
Mr. De La Vega said: "People ultimately feel powerless about a lot of things. People think about bigger things. They think about survival. Kids grow up fighting in the streets, so you want to raise big, strong kids. So you give them three pork chops, a nice tall glass of soda to make them strong. You realize, some of these people go to prison, and they have to be strong. They eat and they eat. Nobody teaches them about diabetes."
"I have two nieces," Ms. Matos said. "They're 24. I call them the sumo wrestlers. They eat everything."
Mr. De La Vega said: "A lot of people eat on the streets. I eat breakfast on the street and lunch on the street, and sometimes dinner. I have hot dogs. I had two today."
His mother said, "If you drink a diet soda and a man is watching, he'll say, 'Why you drinking that?' "
Mr. De La Vega said: "Nobody here goes out and gets an apple. They get cake. People here associate diet as unhealthy. If you're dieting, then you're sick. You look at the people on the streets, they're heavy. That's the way we grow up here."
Mr. De La Vega was silent, listening to the boom box. He said: "Around here, if you make it to 40, you think, hey, I'm lucky, I made it to 40. You have to understand, the philosophy out here is we're going to die from something."
Young and Unconcerned
At times the art-shop regulars pondered what diabetes meant for the neighborhood's young. They surveyed the pudgy children sauntering past and shook their heads.
And so, a not uncharacteristic East Harlem story. A couple of blocks away, on East 102nd Street, lived Xiomariz Downs. She was 15, sweet and polite. She weighed 287 pounds. She lived with her mother, Olga Pagan, her grandmother, her brother, her sister and two cousins in an apartment not intended for that many people. Someday, she said, she wants to be a missionary or a beautician.
On a Thursday, after school, she was in sweatpants at the Bally gym near her home, her second day in an attempted fitness regimen. Her grandmother had enrolled her.
At the start of last year, when she was still 14, she was found to have Type 2 diabetes. It happened this way: She had gotten horribly depressed. Her mother had lupus, and had had two strokes. School had been going badly; Xiomariz was failing math, English, science and history. She made a feeble attempt to cut her wrists. She spent a week in a hospital and the diabetes revealed itself.
Doctors had been hectoring her for years, saying that if she didn't lose weight she was going to end up with diabetes. But she didn't feel sick. She wasn't worried about what might happen at 40. She was a teenager, with teenage hauteur, living in the now.
Again she was told to diet. Her mother said Xiomariz was "on the see-food diet - every food she sees, she eats." Her mother felt frustrated: "I want her to go live with her father and have him knock some sense into her - literally." He, too, had diabetes.
Xiomariz didn't mind her weight. "I feel my weight makes me look like me," she said. "So I don't have to look like those skinny people."
Not long after starting, in fact, she quit the gym - too much time and too much money.
She didn't comprehend the terror of the disease. "I know you can't pass it like kissing someone or something," she said.
Some mornings, rushing, she neglected to take her pills. She had stopped checking her sugar. She said she had lost the meter.
Was she worried about her diabetes?
She moved her head from side to side. "Sometimes I forget I have it," she said. "It's not that big a deal."
What other disease would she compare diabetes to? She thought a moment, and found the answer. She said, "A cold."
Veterans, and War Stories
Santos Alicea had not been by the art shop in days. He was usually around so often that he seemed part of the decor. Now, here he was again, scraping somnolently along behind his walker. He had just gotten out of the hospital. Doctors had removed his right eye. The usual reason around here: diabetes. He got the disease 20 years ago, at 47. He used to work in a laundry and as a security guard, until he had a heart attack.
He plopped down onto the brick ledge beside the art shop. "I'm killing time," he said. He gave a craggy grin.
He settled his walker before him. "The circulation is no good in my legs," he said. He rubbed them.
He unabashedly admitted that good management of his diabetes often seemed like a drama of grand futility. "I got 200 this morning," he said, reciting his latest reading. "Not good. Maybe I ate the wrong thing. I had rice and beans last night. It was good."
He was talking to Jose Castro, 52, a squat man with a grizzled face, worlds of feeling in his eyes. "I got it, too," he said. "Yeah, I got the diabetes."
The diagnosis came six years ago. Was he monitoring his sugar?
"I check once a day or every two days."
How was it?
He laughed. "Been a little high," he said. "I started eating Frosted Flakes. What can I say? I like them. You can't always be eating things without sugar. Sometimes, you have to take a chance."
He used to deliver flowers, but stopped a few years ago after having a liver transplant. Besides insulin, he took 10 pills a day.
He took a drag on a cigarette. He said he was working on quitting. His method, he said, was to sleep a lot. "Sometimes, I sleep all day," he said.
He bore a visible scrape on his left arm. His circulation was bad and he sometimes saw double. "I'll be watching TV and I'll see two images," he said. "I have to wink to see the show."
He had fainting spells, falls. Thus his bruised left arm. He showed another mark on his right arm and one above his eye.
"The other day, I took my blood count and it was 40," he added. "My son took me to the hospital. They said I may have forgotten to take my insulin. I don't know. I don't remember."
He used to keep a log of his readings, but quit. Why?
"I don't know," he said. "So many things you have to do. It gets boring."
A mariachi band arrived in the garden and began to play. Mr. Alicea and the others tapped their feet.
As New York got ready for its evening routines, Mr. Alicea tired, his eyelids sailing down, and he returned to his two-room apartment across the street. His furniture was plain. Bare bulbs protruded from the ceiling. Mr. Alicea shared the place with his older brother, Pedro.
He, too, had diabetes. His vision was poor, his circulation was not good, he had asthma, he had a weak heart. A while ago, he had fallen and broken his arm and hit his head, and had not been himself since. "He's like a baby," Mr. Alicea said. "He's supposed to use insulin, but he doesn't like the needle."
He didn't like to prick his finger to check his sugar level, so he had no idea what it was. Pedro didn't go out much. No scale was needed to judge that he was obese. He watched TV, one more soap.
A home attendant helped care for them. She had dinner on the stove, cream of tomato soup. The dining table was shoved against the wall. Resting on it was a box of corn flakes and a container with doughnuts.
The phone rang. Santos spoke briefly. "My daughter," he said when he hung up. He said she lived in the Bronx, and worked as a waitress near Yankee Stadium. "Yes, my daughter," he repeated. "She has diabetes."
Racing Against the Blade
There is no way to talk about diabetes without talking about money, because they are interwoven. The story with Fernando Salicrup was the foot and the money.
Go see him, Mr. De La Vega had said. He'll tell you something about diabetes.
He was an artist, too, 58. He did computer-assisted art, printed out his efforts on a big Epson printer in the back of his apartment.
He got the diagnosis 20 years ago. His mother and grandmother died of diabetes complications. "They told me about diet and exercise," he said. "But you're a young man, and you don't listen. I didn't take it very seriously."
He had no insurance, either, and so he took his medication when he could afford it, tested himself when he could afford it.
He got a drink. He walked slowly, with a cane. He told the story. Nearly two years ago, overseas for an art exhibit, he twisted the big toe on his right foot on the cobblestone streets. It became infected. When he finally got to see a doctor, the toe had to be removed, along with two others. The infection spread, and he lost the final two.
"All the things you take for granted, you have to give up," he said. "Dancing. You have to plan things out, take things slow. It's not just that they operate on your toes. Your veins aren't working properly. You don't have feel."
He was worried about his vision. An artist without eyes, that was tough to imagine. He mentioned a sad case, a jazz drummer he knew. He had diabetes and had to have a hand amputated. His hand, his livelihood.
When he had the amputations, Mr. Salicrup was in the hospital a month and a half, amassing medical bills he put at more than $300,000. It was an amount in some ways laughable to him, because he expected never to pay it off in this lifetime, but at the same time he knew it was a serious matter. He gave something each month, and it constricted his life, hanging over him like a sentence. He had since acquired insurance, for which he paid stiff premiums.
"You make choices," he said. "Instead of buying sneakers, you stay with what you're wearing. I've got to stay ahead of the blade."
He massaged his leg. Diabetics, often with subdued feeling in their legs, don't realize they have cuts until irreversible infections set in. Doctors caution that they should check their feet daily, using a mirror if they can't see past their stomachs. That they never go around barefoot. That even abrasive socks can lead to an infection. That a simple toenail-clipping mishap can escalate into an amputation.
Five toes gone, Mr. Salicrup didn't want to lose more. He did his best, he said, to tame his illness. He never cut the toenails on his left foot. He paid a podiatrist. He still had a hard time wrapping his mind around that: Here he was, a grown man, paying somebody else to clip his nails.
One Fewer Shop, One More Ghost
The city seemed caught in overcooked air. The art-shop regulars were out, the usual byplay. A gaunt man was selling Gillette razors out of a backpack: $7. Interested, Santos Alicea dug out some bills and took one.
Mr. Alicea mentioned that another diabetic had died the other day. A massive heart attack, and the man became one more diabetes ghost to haunt the neighborhood.
Elsie Matos was displeased with her blood sugar. It was mercilessly high.
Raul Rivera, wearing a smudged T-shirt, began watering the garden's plants, swishing the spray back and forth. How was his mother? Bad, he said. Very bad.
Bigwig said that he had shed some weight, was getting used to one-and-a-half spoonfuls of sugar on his corn flakes instead of four. But also, he had stopped taking his diabetes pills, not wanting to get too used to them, not knowing if that was right or wrong.
James De La Vega's art shop closed at the end of August. Word arrived that the space would become a hot-dog place. Mr. De La Vega moved down to the East Village.
The regulars frowned on the displacement. "Just what the diabetics need," Ms. Matos said. "Hot dogs."
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