Traveling with Sugar

Chronicles of a Global Epidemic

Amy Moran-Thomas

• Publisher: University of California Press
• Year: 2019
• Print ISBN: 9780520297531
• eBook ISBN: 9780520969858
• Edition: 1
• Topic: Social Sciences
• Subtopic: Diseases & Allergies
• Index: Social Sciences

Traveling with Sugar reframes the rising diabetes epidemic as part of a five-hundred-year-old global history of sweetness and power. Amid eerie injuries, changing bodies, amputated limbs, and untimely deaths, many people across the Caribbean and Central America simply call the affliction “sugar”—or, as some say in Belize, “traveling with sugar.” A decade in the making, this book unfolds as a series of crónicas—a word meaning both slow-moving story and slow-moving disease. It profiles the careful work of those “still fighting it” as they grapple with unequal material infrastructures and unsettling dilemmas. Facing a new incarnation of blood sugar, these individuals speak back to science and policy misrecognitions that have prematurely cast their lost limbs and deaths as normal. Their families’ arts of maintenance and repair illuminate ongoing struggles to survive and remake larger systems of food, land, technology, and medicine.

PART ONE

Contexts

Approach

Emergency in Slow Motion

Sugar . . . has been one of the massive demographic forces in world history.

—Sidney Mintz, Sweetness and Power

A lot of people, countrywide, in the whole entire world, here in Belize and Dangriga, are traveling with sugar.

Diabetic is a dangerous thing . . . It’s like cancer . . . It makes you get weak, it makes you get blind, because of the sugar in your eyes and the pressure . . . It makes you get slim, especially if you don’t know . . .

That is the most [serious] thing that is hampering the whole entire world. The diabetic sugar . . .

The whole of your family can get the diabetic. You have to look out [even] if you don’t catch it—maybe your children later on to come . . .

—Anne, expanding on living with diabetic sugar in Belize

I have never seen a good stand-alone picture of “diabetes.” If not for Mr. P’s storytelling, I might never have glimpsed it at all. He was paging through a family album on the kitchen table in his home on Belize’s south coast, showing me pictures of his wife. He smiled back at the old photos of her as a Garifuna teacher standing firm beside a rural schoolhouse. We watched as on the pages she became a mother, then a grandmother. The next time Mrs. P appeared in the album, she was suddenly on crutches. “Sugar,” Mr. P said simply as he paged forward in time, the photographs sharpening in color and filling with grandchildren. In a family Christmas picture his wife’s entire right foot was missing. At one wedding, both of Mrs. P’s legs were gone below the knee. We watched her disappear a piece at a time from the pictures, until she was absent altogether.

Later, that scene kept looping in my memory: Mr. P turning the album’s pages carefully so as not to crinkle its plastic sleeves, the photographic record of loss a surreal counterpoint to the stories he told about raising a family and caring for the generations to come. About the harrowing parts, he only ever repeated, “Sugar.” Back then, I didn’t know about the dozens of different cellular pathways and blood capillary injuries by which you can lose a limb to diabetic sugar’s wears. But I could never forget how he narrated a series of slow losses that somehow had come to feel inevitable.

At the time, I thought I would be writing about another health topic altogether. Early in graduate school, I went for a preliminary visit to Belize to lay foundations for what I thought would become an anthropology project about people’s perspectives on worm control programs. Mr. P had obligingly shown me the apazote leaves in his garden, which could be added to a pot of stew beans for worm treatment. But clearly, intestinal parasites seemed a minor footnote to him, in contrast to the pink housedress still floating on a hanger near their kitchen window. The more people I talked with, the more it appeared that the pressing health issue on many people’s minds was not parasites, but rather the shape-shifting disease of diabetes.

The worms I had initially planned to write about are so easy to visualize. Public health campaigns focused on parasites often put cartoons of their targets on T-shirts and sponsor museum exhibits that display worms in glass bottles of formaldehyde. Fascinated viewers frequently do not read the captions; they just stare at the grotesque-looking specimens. Diabetes, in contrast, is strangely ineffable. You can’t show it to anyone in a jar. It has no totem: no insect vector to put on letterhead like malaria-bearing mosquitoes, no virus to blow up under a microscope and target like Ebola, no tumor to visualize fighting like cancer, no clot to bust like a stroke. It eludes any single, self-evident image.

As Mr. P showed me, in order for most pictures of diabetic sugar to mean much at all, you need to know something about their before and after in time and place. Yet traces of diabetes were everywhere in Belize, once people taught me to pay attention to the quiet, constant presences that so many lived with. I began to glimpse the negative spaces of what was missing: Bodies that sometimes slowly stopped healing. Potent medicines and devices that sometimes slowly stopped working. Specters of lifesaving technologies that existed somewhere else in the world. Memories of former vegetable gardens and lost homelands. Loved ones changing in photograph albums. Missing limbs, failing organs. An empty dress left hanging to outline an absence.

I didn’t know how to read those signs when I first walked Belize’s southern coast, observing what washed up along the tideline. But like my interviews about the health of people and places, the tide arriving from the deep ocean presented a knot of entwined lives I didn’t know how to untangle: the last nylon strings of “ghost nets” that now make up half of the ocean’s plastic debris, long abandoned by fishermen but still catching life until they unravel; curds of broken Styrofoam in clotted algae; hunks of dying coral from the heat-bleached reef; thin gleaming strips of brown seaweed that looked as if they’d been unspooled from the reels of an old cassette tape. Odds were that most of the bright microplastic shards had once been food containers, perhaps ejected from passing cruise ships decades ago in order to be worn down to such confetti-sized slivers. I watched as local women deftly swept the day’s debris from their stretch of beach, treating the sand underfoot like the floor of a well-tended kitchen.

SHORELINES

These are some of the shorelines of sugar to which the stories ahead will keep returning.¹ On a nearby wooden porch worn gray by brooms and sand, I used to sit sometimes with Cresencia and her Aunt Dee in the afternoon when it was too hot to walk anywhere. They would laugh about how I looked even whiter when sweating out beads of sunblock and invite me to stretch with them along the steps, trying to catch a little breeze from the sea. Dee liked to show me the latest foil punch card of tablets from her small bucket of “sugar pills”—an old joke that stayed funny both because they were pills for her sugar, and because she honestly could never tell whether the clinic’s diabetes medications were working better than a placebo. Cresencia had stopped taking insulin injections for carefully weighed reasons after the hospital had last given her up for dead. But from the porch, you could see the tree where a meal of lavish Garifuna dishes had once been buried in the sand as part of an emergency chugú, offerings for the ancestral spirits who had revived her from what her physicians were certain would be an irreversible coma.

Not far from there, on a sunny overgrown highway parallel to the coast, a teenager with type 1 diabetes named Jordan used to walk in a determined half delirium, trying to reach the hospital before diabetic ketoacidosis set in. It was also along this coastline that a legendary healer with diabetes named Arreini used to send me with a tub to hang her sopping laundry after we finished at the washboard, little chores that were part of the daily test and price of being an old midwife’s student. If I didn’t use enough extra clothespins for her heaviest shirts to stay on the line in the stiff sea wind, she would snap at me, “Merigan!” (American), and I was not allowed to ask her any more questions for the night.

Somewhere far across this water lay the sugar islands from which her ancestors had come, and toward which this story will slowly wend back in trying to understand the sugar now rising in her family’s bodies. It was also in Arreini’s seaside kitchen where I met her daughter Guillerma when she was hoping to receive dialysis to clean her blood—even though such intricate technologies from abroad were nearly impossible to procure at that time, much less maintain. Some of these friends have thrived for many years past medical predictions. Other people I knew dealt with limbs that eroded from diabetic sugar and eventually required amputation. Many of their heaviest losses happened between my irregular trips back, although over the past decade I have also known many people whose injuries were painstakingly mended.

Most everyone in Belize had somehow witnessed the long list of strange ravages caused by diabetes: blindness, renal failure, bone disease, deadened nerves and numb limbs, pain shooting through limbs or stinging like needles, hunger that did not stop when you ate, thirst that lasted no matter how much water you drank. Whenever I thought I finally knew what diabetic injuries looked like, it seemed I would encounter some new manifestation. Like a dream or a nightmare that kept revealing more images. Once, a friend called me to come over after midnight, but there was nothing either of us could do. We stood watching her mother, Sulma, running through the house as it got harder to catch her breath or even breathe, after years of diabetes complications had contributed to organ failure. Her children had saved up to buy her an oxygen tank, but it cost one hundred dollars and had already run out. Sulma thrashed through the kitchen like someone trying to claw toward the surface, only there was no water. It looked like someone drowning in the open air.

“Far from being a disease of higher income nations, diabetes is very much a disease associated with poverty,” Jean Claude Mbanya of Cameroon has argued, writing as president of the International Diabetes Federation. “The global community still has not fully appreciated the urgent need to increase funding for non-communicable diseases (NCDs), to make essential NCD medicines available for all and to include the treatment of diabetes and other NCDs into strengthened primary healthcare systems. The evidence for the need to act will soon be overwhelming.”²

The president of the Belize Diabetes Association, Anthony Castillo, once told me how strangers often tell him he doesn’t look like he has diabetes. He laughed about this: “Well, how are you supposed to look? Is there a look?” And it’s true that if you went by the pictures that tend to show up in international papers, it would be easy to mistake globally rising diabetes for a well-understood, generally mild affliction simply linked to excess. When international media coverage of diabetes appears at all, it often implies individual misbehavior—as if people with diabetes simply cause their own conditions—like the upsettingly typical Economist headline “Eating Themselves to Death.”³

These commonplace news stories and assumptions probably would not upset me so much now, if I had not once accepted some version of them myself.

A GLOBAL EPIDEMIC AS SEEN FROM BELIZE

Although it took me awhile to realize, I was one in a long line of outsiders who traveled to places like Belize assuming that infectious diseases must be the country’s key health issues. Contagious conditions could be serious matters too—the Stann Creek District, where most of this book is anchored, was experiencing one of the highest HIV/AIDS rates in Belize, and Belize had the highest rate in Central America.⁴ Yet as Garifuna anthropologist Joseph Palacio observed of HIV/AIDS in Belize: “It is a disease that is killing our people. But there are other diseases that are not receiving as much attention. They are diabetes, hypertension, and glaucoma. There is hardly one of us over 40 years of age, who does not have one or more of these public health problems.”⁵

During my initial visit to Dangriga, I asked a prominent Garifuna physician for feedback on my proposed project. He urged me to focus on diabetes and its many chronic complications instead of parasitic worms. He also offered to mentor the project if I came back to spend a year in Belize, getting to know people who were interested in being interviewed about their experiences and trying to learn something about the ways they were making sense of what was happening.

Many doctors worldwide are also confused by the ways diabetes is now changing. Type 1 (about 5 percent of the world’s cases) used to be commonly called “juvenile diabetes,” while more gradually developing type 2 was labeled “adult onset diabetes” (about 95 percent of cases). They are both rising steeply. Over one million children and teenagers worldwide are now estimated to have type 1 alone.⁶ But today, more children are also developing type 2, and more adults type 1. In untreated versions of either type, high or low blood sugar wears on the blood vessels carrying it. These vascular complications can accrue into severe injuries over time, including organ damage and limbs with circulation so limited that eve...

Table of contents

• Title Page
• Copyright
• Epigraph
• Contents
• Part One. Contexts
• Part Two. Crónicas
• Epilogue
• Dedication
• Acknowledgments
• About Translations
• Image Credits
• Notes
• Bibliography
• Index