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Crónica One: Thresholds

Traveling an Altered Landscape with Cresencia

To return once more to diabetes . . . it can strike man or woman, threaten them with coma, often hit them with impotence or sterility, for whom pregnancy, should it occur, is a catastrophe, whose tears—O irony of secretions!—are sweet.

It seems very artificial to break up disease into symptoms or to consider its complications in the abstract. What is a symptom without context or background? What is a complication separated from what it complicates?

—Georges Canguilhem, The Normal and the Pathological

People living with diabetes and hypertension in Belize often lived with “sugar and pressure” levels beyond the ranges programmed into devices like glucometers and digital home blood pressure cuffs. But the Caribbean heat and sea air along the coast also regularly interrupted delicate electronics from within, especially on very hot or humid afternoons. The caregivers doing home visits often had difficulty discerning whether a machine stopped working because of irregularities inside a patient’s body, or because of the mechanical weathering particular to a seaside atmosphere, or both. On a few days, the most common blood sugar reading was “Error.”

The clinic’s Accu-Chek glucometer had a different glitch; it couldn’t read blood sugars over 600. But Cresencia had a joke she told herself whenever she saw the machine’s message of “Hi” (short for high sugar). She received it with intimate familiarity, rather than the designation of clinical crisis its designers intended, and would respond in her mind: Hello.

One day in a southern Belize hospital, I heard my thirty-four-year-old friend ask the nurse if she could stick her own finger with the lancet so that drawing blood didn’t hurt as much. The Accu-Chek said her blood sugar was 218, fairly high; the normal range was then considered to be between 80 and 120 milligrams per deciliter. “Too low,” Cresencia said of her measurement, wondering aloud if that was the reason she had vomited after breakfast. “When it gets low, my body isn’t used to it; 300 down gives me a lot of problems. I get sick and want to throw up. I can’t stop shaking.” Her ideal range was between 300 and 400, she said. The sick feeling Cresencia experienced whenever her blood sugar was within “healthy” range was the primary reason she had stopped taking medicines. “When I do the insulin, the insulin makes my body shake, shake, shake. Cold sweat,” she said.

Cresencia’s account echoed a persistent and disturbing trend: the great majority of the people with diabetes I interviewed in Belize seemed to have a story about how their doctors were shocked by their impossibly sky-high blood sugars. Caregivers repeatedly told them it was very lucky and wholly inexplicable they were not dead, let alone still walking around. “I’ve seen people with sugar of 800 busy doing laundry, telling me they feel good,” one nurse told me. When a Cuban doctor was taking blood sugars at the diabetes clinic in Belize City one morning, we agreed I should write down the numbers as she read them out loud to sixteen otherwise anonymous patients. (The physician said that she considered it a pretty bad morning.) But even in a tiny and arbitrary sample, the set of numbers raised unsettling questions: 62, 93, 114, 180, 197, 201, 280, 396, 400, 530, 553, 665, 670, 682, 699, 718.

What does “normal” sugar even mean here? Only two of the sixteen people registered in the range defined as normal (80–120). Or maybe only one of sixteen, if applying the narrower range of normal (80–110) that was promoted for a short time—a reminder that changing how a threshold is defined also alters the biology that is perceived, treated, and materially produced in turn. (One reading, 62, was too low—actually more immediately dangerous than high sugar. Erratic swings in glucose levels over time propitiate both extremes.) The majority of the sixteen people whom the physician tested that morning registered blood sugars over 300 milligrams per deciliter—such high levels that, if chronically sustained, “severe complications are almost certain.” But that was the low end of the range in which Cresencia spoke of feeling normal. When Cresencia was given insulin to bring her glucose back to “normal” and down from what the hospital considered dangerous, she began to vomit.

THE NORMAL AND THE EXTRAORDINARY

Diabetes was one of the key examples that physician-philosopher Georges Canguilhem wrote about in The Normal and the Pathological. He was fascinated by the many microevents that preceded the first time sugar could be found “pouring over a threshold” in the kidneys, the moment when detectable glucose (always present in human blood) suddenly leaked into urine and became legible as a disorder.¹ He argued that “the pathological cannot be linearly deduced from the normal,”² the way graphs tend to depict it. Instead, health was “a margin of tolerance,” Canguilhem wrote, “for the inconsistencies of the environment.”³

Today, “inconsistencies of the environment” are so pervasive that Canguilhem’s ideas about the “ex post facto science of the normal” have become important for approaching ecological losses as well as human health, David Bond observes; in fact, he argues, disasters often produce what comes to be imagined as the lost baselines of “normal” environs.⁴

The Belizean reef underwent coral disease and bleaching events in 1995, 1998, 2005, 2010, 2015, and 2016. Surviving patches have already lived past what scientists once estimated as its “thresholds of temperature tolerance,”⁵ survivability tested in ways that reminded me of “normal” blood sugar. Yet when “changes in degree become changes in kind,” Donna Haraway observes, “all the stories are too big and too small.”⁶ There were “waxing and waning thresholds of life”⁷ being demarcated all around: “epidemic thresholds,” like the one the World Health Organization declared that diabetes had crossed; “pain thresholds,” debated around when and how diabetic nerve damage should be medicated; “thresholds of exposure,” which defined permissible levels of toxic chemicals. Adriana Petryna calls drawing such lines for tractable action “horizoning work”: “perceiving critical thresholds, determining baselines, and carving out footholds” as part of a “fine-tuned awareness of jeopardy amid incomplete knowledge, and for labors of continuous recalibration amid physical worlds on edge.”⁸

A little at a time, capacities might gradually change beyond what once seemed like hard limits. “Life tries to win against death in all senses of the verb. . . . Life gambles against growing entropy,” Canguilhem wrote.⁹ Exceeding experts’ predictions, at times the intensities of death in life could create powerful modes of alter-survival.¹⁰ When diabetic deaths and injuries were statistically “normal,” stabilizing outliers exceeded the pathological—opening instead toward the possibility of transcendence. Some people in Belize explained to me how they lived with their symptoms as miracles.

Checklist used by visiting Diabetes Foot Care Group, Dangriga.

When a woman named Tila, for example, noticed the two perfect pink circles that opened spontaneously on each foot, she recognized the symmetrical marks. She took fastidious care of the wounds in collaboration with her doctor. But Tila could discern nothing that she had done to “deserve” her diabetic injuries, as she explained, and their strong resemblance to Catholic stigmata helped her to bear the fact that they would not heal.

She said that she knew others in town with similar marks. “Many are chosen.”

“I used to take insulin, but I tell them, no more,” Cresencia had told me on the first day we met in the town hospital. It was February then, many months before she would first be called Miss Lazarus. “Now they just give insulin to me whenever I am dying.” She laughed and adjusted her pink nightgown, sitting on a clinic bed that looked too low for her. A blurry Xerox taped to the wall behind her, labeled “The Diabetic’s Prayer,” had caught my eye while I was visiting the hospital. That was when I had approached Cresencia for the first time, explaining my research and asking about the sign. She looked up at the wall with curiosity.

THE DIABETIC’S PRAYER

Our Father in heaven

Thank you for being

Our Teacher, Our Healer

Help us overcome DIABETES

By staying light through

Diet and exercise.

By living right

Through not smoking nor

Drinking

By thinking bright

Through positive thinking

And lead us not into

Temptation but deliver us

From stress

So we could live life to the

Fullest.

In Jesus name we pray,

Amen.

“That’s not mine,” Cresencia said of the prayer. It was labeled with the names of two collectives that shared materials, the Philippine Diabetes Association and a nongovernmental organization (NGO) in Tobago.

She shrugged. “But we could talk a little.”

I joined Cresencia along some of her travels as she sought care in the following year, usually wherever she invited me. In addition to kitchens, temples, and clinics, Cresencia kept collapsing on the roads and on the beach. Some events were attributed to spirit possession and others to coma caused by either low blood sugar or by diabetic ketoacidosis (a state linked to high blood sugar and missing doses of insulin). The similarity of these semiconscious states confused the local Kriol nurse, who had to send for someone who spoke Garifuna to distinguish between trance and diabetes crisis each time Cresencia was carried again to her clinic.

How does expertise get constructed in different ways around death and survival? The crucial thresholds in this story all relate to that question. Caregivers presented these threshold definitions as “natural” facts, using them as tools to navigate uncertain biology. The specific ways they were defined often took on a meaningful life of their own, “healing despite sickness”¹¹ along the borders between religion and medicine.¹²

One of anthropologist Victor Turner’s famous theories described the betwixt-and-between threshold states that he called “liminality,” building on the work of Arnold van Gennep. He wrote: “The attributes of liminality or of liminal personae (‘threshold people’) are necessarily ambiguous, since this condition and these persons elude or slip through the network of classifications that normally locate states and positions in cultural space.”¹³

Many anthropologists have since reflected on these ideas of liminality and thresholds—spaces of transformation, open on both ends. For Turner the way out of the liminal state was through ritual. But in situations of chronic conditions, it was not always possible to find a ritual that worked. Getting caught in its betwixt-and-between, neither-nor state can recall what it’s like for patients to live with chronic diagnoses, Jean Jackson argues, classified by biomedicine as “ambiguous beings.”¹⁴ Yet a “liminal figure—one that haunts the very field of power that excludes her”—at times also sheds light on those fields’ definitions in turn, Angela Garcia offers.¹⁵ “Such a liminal position can animate a critically different reflection on medicine and society, a reflection that need not accept things as they are,” Arthur Kleinman once reflected.¹⁶ Ieva Jusionyte adds that certain thresholds of states may look like peripheries but in fact act as the core, consolidating political power along their borders.¹⁷