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What Is Communicable?

Caregivers in an Illegible Epidemic

The body isn’t wrong, isn’t “disabled.”

The environment itself—gravity, air, solidity or the lack of it, etc—is what is somehow wrong: ill-matched to the body’s abilities . . . verticality, stability, or mobility.

She . . . whose limbs struggle to accomplish their given tasks on earth is, in this sense, like an astronaut: far away from home, coping.

—Teju Cole, Blind Spot

By the time we met in southern Belize, Dr. W had already named it in his mind: the “Caribbean diabetic limb crisis.” He said he hoped someone does a study about the trauma caused by diabetes amputations, and not just for patients. He said someone should also do a study about trauma for surgeons who are being put in the position of repeatedly removing pieces of their patients.

It took me a moment to put together the fact that Dr. W was one of those surgeons.

“You can’t imagine how much I never want to see another person lose their foot,” Dr. W would tell me later. “But I know that each day I do this, that’s what’s coming.”

Sarah’s younger brother, an animated man named Tobias, was among those I saw greet Dr. W with a warm handshake. He and his wife had traveled to Dangriga just to say hello to him. I began to grasp why, when Tobias recounted an odd story to me: A few years ago, he was walking and a bone fell out of his foot. He barely even felt it glide out from the lesion that a diabetic ulcer had eroded in his tissue. Tobias picked his bone up off the floor—a joint below his toe—and took a picture of it. Then he placed the bone in a clean plastic bag.

Dr. W at work, Dangriga.

Later, Dr. W described the photo and message he had received from Tobias: “He called one day from Belize and said, ‘Hey Doc, this bone fell out of my foot this morning. It didn’t hurt at all.’ And I thought to myself, you know, this really isn’t okay. It’s almost . . . Frankenstein-ish. But it doesn’t raise any real alarm. That tells me a lot about where things are, when people are kind of . . . used to it.”

Archaeologists say the world’s oldest known prosthetic appendages are mostly toes, fashioned nearly three thousand years ago in ancient Egypt out of wood, leather, linen-like plant fibers, and glue.¹ By 2010, I never met anyone who bothered for “just a toe.” But if you looked at the sandals of the people gathering in line, you could see that a number were missing toes. Those waiting to see the doctors appeared to be from all walks of life: stylish fashions and threadbare clothing, many formidable in stature but others looking markedly thin, a mix of skeptical-looking teenagers and grandmothers in weathered hats. The arriving members of the Belize Diabetes Association’s New York branch and their colleagues from Dangriga and the Belize Ministry of Health unpacked supplies for the day, arranging stations around an open pavilion. The team’s mood was relaxed and convivial. Only their gear, plastic boxes packed with foot care instruments, hinted at the day’s high stakes.

Dr. W’s team brought a stack of photocopied papers, titled “Limb Salvage Form.” These sheets displayed sketched outlines of feet: a right and left foot shown from both bottom and top view, with circles outlining the twenty-two quarter-sized places on a foot where podiatrists test for sensation to detect any signs of lost feeling. (“Can the patient see the bottom of their feet?” the paper asked, just above a question about the safety of shoes.)

The Belize Diabetes Association collaborates with Dr. W’s Diabetic Foot Care team, which since 2004 has been traveling between their New York City base and a range of Caribbean countries. Their group focuses on foot maintenance checkups, only one station among an array of services being offered around the pavilion. When requested, they provide training to build expertise among local caregivers and the Belize Nursing Council. On occasion, Dr. W also performs follow-up salvage surgeries to restore a diabetic limb that may have already been scheduled for amputation. The medical word salvage has a particular echo in the history of social observers: some early anthropologists imagined forms of “salvage ethnography” to document people and practices they prematurely labeled as dying off.

The team’s practices of salvage here, in contrast, signaled the very opposite of resignation to harm. In medicine, the term salvage means that all possible measures are being taken to ensure an ailing limb stays alive and attached. Limb salvage procedures often include vascular surgery measures to restore blood flow, such as unblocking blood vessels or placing stents. They most broadly demand the careful monitoring of feet to catch tiny wounds before anything reaches a crisis point.

This labor has its own lexicon. I made lists of unfamiliar terms in my notebook.

Claudication comes from the Latin verb to limp, the name for stabbing leg pains caused by restricted blood flow. This is often linked to peripheral artery disease, which most doctors just call PAD. Debriding means removing dead tissue to try to give the living parts around it a chance to grow back. The paperwork’s “Deformities” box holds checklists of things you did not know could go wrong with parts of your feet you did not know existed: Dorsiflexed first ray means that the foot segment containing the first cuneiform and first metatarsal bones rides high; there are two other checkboxes nearby on the page to indicate a concerning equinus (flattening arch) or troubled calcaneus (heel bone). (The feet’s cuneiform bones are wedge-shaped, which is how they ended up with the same name as the ancient Mesopotamian pictographic script once etched on clay tablets with wedge-shaped writing tools.)

Hallux limitus is an arthritic condition of the big toe, with rearfoot and forefoot varus varieties. A bony prominence of the great toe joint causes severe pain and rigidity. There are varieties of toe deformities—hammer toes, claw, and mallet—and three types of corns that classically afflict them. The physicians paid close attention to each detail, trying to tune out the long lines of people waiting around them. Any concerning characteristic on a diabetic foot could morph into catastrophic injury if it went unnoticed and untended for a few weeks: maceration, tinea between the toes, ankle plantar flexion, an obstructed dorsalis pedis or posterior tibial pulse, bunion, drop foot, Charcot fracture.

And a very serious acronym: LOPS, or loss of protective sensation. Dr. W’s team had set up a station to teach people strategies like using their hands to feel inside their shoes before putting them on, since feet numbed by diabetes can be felled even by tiny injuries. The need for amputation can often be traced back to a sharp pebble in someone’s shoe or a bug bite in the wrong place. One U.S. study about the causes of diabetic limb amputation found at least twenty-three unique causal pathways at play (including 46 percent lost to ischemia, 59 percent to infection, 61 percent to neuropathy, 81 percent to faulty wound healing, 55 percent to gangrene, and 81 percent to initial minor trauma). Those numbers add up to 383 percent instead of 100 percent because most amputations are caused by several mechanisms simultaneously—which is also why remediating any one pathway will not necessarily save a limb. The biggest pattern this study found was that up to 80 percent of amputations were preceded by a “pivotal event,” usually a minor cutaneous injury.² In Dee’s case, the pivotal event that led to losing her left leg was stepping on a seashell. It was as small as a tooth, just one sharp edge.

It turned out that several of the team’s visiting doctors were originally from other parts of the Caribbean as well—part of a larger Caribbean Diabetes Initiative—and had connected in New York with the Belizean group. People from Dangriga kept telling the team that the letters on their T-shirts, BDANY (Belize Diabetes Association of New York), resembled a Garifuna word meaning “your time”—and, by way of this little joke, let the BDANY members know they were grateful for their time.

“You have salt or sugar?” old friends called out to each other across the pavilion.

(“Both” was the most common answer—diabetes along with hypertension.)

“I never thought you were sweet!”

No matter how many times we heard some version of the joke, everybody laughed.

FOOT SOLDIERS

“She’s one of our best foot soldiers,” Dr. W smiled as he and Nurse Norma hugged hello. Years ago, he had arranged for her to complete diabetes foot care training. It was tough work: of the twenty-five nurses who began the two-part training, Norma was the only one who returned for the second year to complete it. In the months or years between visits from the Belize Diabetes Association’s New York team, Norma stood as the front line of defense for those needing diabetes limb care in town.

Norma’s brother says she has nine lives, like a cat. As a steadfast nurse and head of the local branch of the Belize Diabetes Association, she had managed to maintain herself with type 1 diabetes through many decades and to help keep many others intact. In the southern district of Belize at that time there were no known endocrinologists, podiatrists, or other caregivers who had specialty training in diabetes foot care except for Norma. Her particular expertise included tending to diabetic toenails, a crucial skill: one clip at the wrong angle could lead to a jagged ingrown nail and later necrosis. Toenails also archive: some researchers measure their glycation to detect diabetes and its sequelae of organ damage.³ Trimming required complete attention, at once rough and delicate. Afterward, Norma usually said something deadpan to her patient that I could not follow in Garifuna, and they would both laugh.

The blue plastic tub labeled FOOT CARE quickly piled high with sterile medical wrappers and used gloves. Carefully emptied, it soon filled again. When a tall woman slid off her sandals and revealed four self-bandaged ulcers across both feet, Dr. W stood nearby as a collaborating physician tended to her. I knew the woman, Grace; she was part of a group that had showed up previously when I advertised on local TV and radio an upcoming presentation sharing early findings of this project on diabetes in Dangriga. I watched as the visiting doctor brushed sand off Grace’s toes, then used a Duplex Doppler device to listen to Grace’s feet for calcium blocks or other subtle acoustic clues, pressing with a wand that amplified the sound of blood flowing through the arteries.

Grace was already missing one of her big toes. Crumbled scar tissue and a protruding bone suggested that the digit had broken off with dry gangrene rather than a surgical cut. Making jokes about pedicures, the doctor took the foot firmly in hand and asked Grace to close her eyes. The physician used an array of soft-point brushes and metal hammers to detect where and how Grace’s nerves had numbed or deadened. Then she rubbed Grace’s feet vigorously with soap until enough dead skin sloughed away that the ulcers began to bleed at the edges, which might make regeneration possible. The newest ulcers were perfectly round circles, bright raw pink and eerily symmetrical. But the doctors were more concerned about how her feet sounded: they could barely hear a pulse near her missing toe, signaling diminished blood flow in the tissue that would make it much harder to heal.

Dr. W wished aloud to the team that there was some way they could give Grace two days in their New York hospital’s hyperbaric chamber, the enclosed apparatus that can help otherwise impossible wounds begin to heal. “Is there any way you can get to New York, dear?” His invitation hovered in the air for a moment. But that afternoon, nobody knew a way to access a hyperbaric chamber. After Grace’s remaining nine toes were wrapped in fresh bandages, her flip-flops would not fit over the dressed wounds. The doctors could only laugh in admiration at her raw tenacity when they saw her afterward climbing onto a bicycle. They knew the big toe is particularly crucial for balance, yet Grace moved with steady poise. Someone snapped a photo of her posing with gauze-wrapped feet pressed to the pedals, but their smiles looked privately worried. There was nothing left to do for the moment. We all watched as she rode away.

With an intensely focused look, Norma pulled another hurt foot onto her lap.

NON-TRAUMATIC MEASURES

The surgical unit where so many amputations took place had a sign near the doors reading OPERATING THEATRE. Everyone’s use of “the theater” to refer to surgery rooms gave the events of amputation a surreal quality; I always found this label for medicine or war disquieting, like some script born elsewhere being played out time and again. Surusia, the Garifuna word for any biomedical doctor, comes from an ancient French word for surgeon.⁴ The term should be a relic from the age of colonial warships when surgeons were literally at the front lines, but it has uncomfortable resonance in the age of epidemic diabetes.

Dr. W worried that even many caregivers do not understand what their patients with diabetes go through in rooms like this, which hold kinds of expertise that nobody wants to hear about: types of gangrene (wet, dry, gaseous), varieties of instruments (pneumatic bone saws, Gigli wires, Zimmer drills). “If you’re not a surgeon, you’ve probably never seen an amputation,” Dr. W noted. He recently jolted one audience of nurses and doctors at a Barbados hospital by starting his lecture with pictures of a procedure.

“And they were horrified. Horrified! Now, of course, they’re medical people, and they’ve seen many things. They’re not squeamish and upset about blood. But when you actually see an amputation, it leaves an impression on you that you will not soon forget. Then I took it from that point and said to them, ‘so every patient who you know is going down this road will have this experience.’”

Dr. W explained that he was working on a new lecture. “During the [U.S.] Civil War, everyone was getting amputations because of major gunshot wounds. That is the only other time I’ve ever seen a picture where you have stacks of legs in a setting. What’s the trauma here? It’s almost like we have a civil war going on in these countries every year, [in that] we have the same number of amputations. In many cases, maybe more amputations. . . . So can you imagine us having civil war trauma, over and over and over again. Unrelenting, unrelenting. Unabashed. Uninterrupted.”

Dr. W’s civil war imagery made me recall how his medical specialty is more formally referred to as limb “reconstruction.” In drawing analogies between diabetic injuries and war photos, Dr. W described a tension that many have grappled with: the twofold problem of looking or not looking at such visceral images, and how to weigh the choice to make them public or not when valences of shame haunt either option. “I could have looked . . . until my lamps went out and I still wouldn’t have accepted the connection between a detached leg and the rest of the body,” Michael Herr wrote of pictures like that during the Vietnam War.⁵

The problem is ugly at any point along its unsavory continuum: At one pole, there is the real danger that images of violence can be viewed and taken up in ways that verge on gratuitous spectacle or even repellent intrigue. Yet at the other end of the spectrum sits an equally chilling truth that gruesome things are already happening to some people, and many in broader publics would rather look away than face their part in the larger systems that depend on unequally patterned injuries—silence that often fosters complicity with even sharper injustices ahead.

All of us holding cameras were dealing with these dilemmas: What kinds of images were usefully sobering, which gratuitously sad? Who gets protected from the grisly side of diabetes? How do we represent this latest chapter in a familiar story of racialized bodies hurt by sugar—when we live in a global economy so deeply shaped by this legacy that even pictures of its echoes could become capital? Yet there was no denying a severe and growing problem that people were working hard to more accurately make public. How to convey that erased reality without dehumanizing anyone in the process of trying to make it visible?

Some patients began to display their injuries for cameras to try making the issue more legible—as you’ll hear later, one dialysis advocate even began improvising “press releases” each time another part of his body was about to be amputated, calling up the major media outlets in Belize and asking people to make and reckon with images. As Laurence Ralph reflects elsewhere about “living through injury,” sometimes “it becomes politically strategic to inhabit the role of a ‘defective body’ in order to make claims about a violent society.” When individuals exhibit and even publicize their injuries to call attention to the broader social injustices shaping them, this can become part of a strategy that Ralph calls “what wounds enable.”⁶

Belize Diabetes Association groups were facing related questions with immediate stakes: photos of imperiled feet help them to disrupt ideas of diabetes as a boring disease and thus to gather support for material care. For many members, this was not an abstract or theoretical debate about reproducing ideas of suffering. It surfaced instead as a dilemma that was unfolding in real time—as in the first week of 2018, when the Belize Diabetes Association Belmopan branch posted an arrangement of the new year’s photos on their Facebook page.

The image was carefully composed to both shock and counter-anchor in dignity. It was prefaced by the pointed note “Permission granted by clients to share” and the hashtags #SaveAFoot #SaveALife, with pictures of four feet in limbo with mottled and missing toes, stitched to a larger photo of a T-shirt that said:

BEHIND EVERY PERSON WITH

DIABETES

THERE IS AN EVEN

STRONGER

FAMILY WHO STANDS BY THEM

SUPPORTS THEM AND

LOVES THEM

WITH ALL THEIR

HEART

“It seems as if the exotic things get the attention. . . . Having five people with Zika brings the media. It’s very sexy, it’s exotic, it’s front-page news. People getting their limbs cut off, not really exciting,” Dr. W reflected later on diabetes and the difficulties he’s had for decades trying to bring public attention to it. In his words:

I think the problem is that in this world of sound bites, diabetes is not that impressive or sexy. But the damage it does is absolutely horrific. . . . diabetes is expanding and growing at an alarming rate. It’s chewing up your GDP. It’s smothering countries. It’s something that’s really killing how your health system will work in every way.

I think the problem is that it’s not studied. People don’t really know how many amputations are going on. First, there is an occult number: a number not well known. Number two, the long-term effects of it are not well studied in this population. Number three, the transgenerational issues that go along with that. The fear, the worry, the anxiety, the denial. . . . No one is measuring that. It’s just like, yeah, diabetes. It’s in this area.

A report from Belize’s only prosthetic leg clinic noted that of the six amputations attributed to animal bites the previous year, only three had been snake bites. “The other three were attributed to rat bites becoming infected in diabetic patients. Bites from rats speak to the need for improved standards of living.”⁷ The report added: “Most diabetics from [our] Belize clinic ambulated in flip flops, sandals or ill fitting footwear due to poverty. In addition, they reported having their blood sugar tested once every three months! This very likely contributed to their becoming amputees in the first place.”⁸

In the U.S. context, for which better data exists, about 80 percent of the country’s total amputations are due to diabetes. But even the broadest literature review on diabetic amputation numbers I could locate did not contain data from a single low- or middle-income country. Despite this limited geography, even narrow studies suggest jarring numbers: About a third of people with diabetes experience an ulcer, and more than 50 percent of diabetic foot ulcers become infected.⁹ A third of people who seek clinical care for ischemic diabetic ulcers (the most common type) will die before their injuries ever heal.¹⁰ Diabetic foot ulcers “have morbidity and mortality rates equivalent to aggressive forms of cancer.”¹¹ After having diabetes-related amputations, over 70 percent of patients die within five years—a death rate second only to lung cancer.¹² Following a major diabetic amputation, 50 percent of people will have another limb amputated within two years.¹³ Despite these troubling fragments of statistics, though, there remains a dearth of global funding for diabetic foot care, due largely to lack of evidence documenting that there is a global issue.

“Internationally, accurate numbers of limb amputations performed are very difficult to estimate as there is no recognized database or organization collecting this information,”¹⁴ one journal article about this global data gap recently summarized. The article also noted a brute-force fact that bears repeating: “Amputation of a limb is one of the most severe pains in the human experience.”

Tellingly, some of the best statistics about the global severity of diabetic injuries have been collected by accident. Diabetic amputations have often turned out to be the number one cause of limb loss captured by databases meant to gather information about landmine blasts and other war-related injuries, as reported in studies with titles like “Diabetes or War?”¹⁵ Researching the “yawning gap” between the need for diabetic foot care and sparse funding to support it, David Armstrong and colleagues recap: “There is a lack of federally and not for profit–funded research directed toward diabetic foot ulcers. This funding gap is disproportionately large in comparison with the public health impact of this sequela.” The authors call this discrepancy “a clear and present medical and fiscal calamity. We must mind this gap as a locomotive of lower-extremity complications is approaching.”¹⁶

The odd turn of phrase that ends their article underlines a strange fact: if the injuries and amputations that their team analyzed had been caused by actual locomotive trains, they would be robustly included in the global statistics that guide health policy funding. The World Health Organization’s recent Global Burden of Disease report, for example, was designed especially to attend to the daily difficulties of living with chronic injuries. Its scale of “disability weights” emphasized the painful toll of amputations on daily life.

But the twenty-six possible causes of amputations and related injuries that the 2017 study painstakingly charted did not include diabetes. It did estimate global amputation burdens, though, for six kinds of traffic accidents (motor vehicle; motorcycle; cyclist; pedestrian; mass transportation, including bus and train; and other road incidents), as well as for venomous and nonvenomous animal bites, domestic violence, gunshot injuries, self-harm, war, and torture.¹⁷ This led the report’s authors to conclude that global injuries are declining and the world today is becoming a safer place. I wonder for how many countries in the world, besides Belize, that summation sounds plainly inaccurate.

The last time I visited Belize, I went to see a few friends one weekend and found that three of them had lost a leg since my last visit. The repetition was becoming so normalized that anxieties about “getting cut”¹⁸ came up constantly in conversations. The pattern did not require an epidemiologist to notice that something was wrong. Of course, not everyone with diabetes dealt with limb injuries. But every person with diabetes did have to be constantly on guard, and those stakes felt high. I thought the struggles against shame that people described around amputations were related, at heart, to the non-counting of diabetes limb loss as a global phenomenon. Missing numbers do more than perpetuate missing material resources for care—they also change the feelings and ideas of responsibility that get associated with a given hardship. “In other words, the numbers inform how people tell their stories; the stories people tell shape the categories used to collect numerical data,” Adia Benton observes.¹⁹

The standard legal definition of trauma is “a wound or a condition of the body caused by external force, including injuries inflicted by bullets, explosives, sharp instruments, blunt objects or other physical blows, chemicals, electricity, climatic conditions, infectious diseases, radiation, and bacteria, but excluding stress and strain.”²⁰ Limbs injured or lost to sugar are thus not considered traumatic because they take shape slowly. When it comes to these non-traumatic diabetes wounds, in hospitals around the world, tough choices get made at the time of amputation. For instance, surgical teams must decide whether to use limited supplies of anesthesia to render a patient unconscious or to only numb them at the waist. In the conscious version you are awake and listening to everything. Bone has to be screwed to the table before they saw it. One woman in Dangriga told me she prayed so hard and felt her family’s love so palpably that when the drill started up she felt the grace take over completely, and her ears filled with a loud ringing so beautiful that it became the only noise in the room.

“There are so many miracles,” she told me. “Thank God.”

DISPLACED SURVEILLANCE

Long after she officially retired, Nurse Norma kept going to the hospital to help provide diabetes foot care. She also made certain home visits, even though she no longer got paid for the work. She heard that specialized diabetes foot training will be coming soon and said she will start to relax her watch if she gets an apprentice. In a district where so many were losing limbs, how else could the only person certified in foot care training truly retire?

Humans alive today, in general—and nonwhite people, in particular²¹—are subject to constant surveillance. Algorithmic tracking and facial recognition tools are on the rise, alongside what Alondra Nelson calls “data spillover,” cases when even materials like saliva submitted for ancestry testing or photos shared on social media can be harvested as data by interested parties ranging from pharmaceutical and life insurance companies to law enforcement databases.²² We have never had more information collected about us by companies and states. This made it feel even stranger to come across the rare case where members of the concerned population actually expressly wanted institutional “surveillance” collected about key data—only to find that this data remained elusive.

“A lack of surveillance in Central America has stalled the development of amputation prevention services,”²³ one prosthetics maker in Belize noted. Here’s the catch: it takes numbers to redirect global policy money, but it takes global policy money to assemble the numbers.

Belize has made more headway around these uncomfortable numbers than most Central American and Caribbean countries. A very small study incorporating data from Karl Heusner Memorial Hospital (Belize’s only tertiary care hospital) was written up and published by concerned physician Uldine Wright, who recently returned to Belize from medical training in Cuba. She recounted a tally showing that among patients who came to the Belize City public hospital to treat a diabetic ulcer (often caused by an ingrown toenail or similar tiny wound), 89 percent of patients received an amputation.²⁴ Some 29 percent lost their leg below the knee, and 24 percent lost the limb above the knee. I heard informally that medical interns do many of these cuts. Eighteen percent of amputations were trans-metatarsal (toes or fingers with a piece of the foot or hand), while 18 percent lost only digits (mostly toes). Twelve percent of patients healed with debriding, and 0 percent healed with conservative treatment.²⁵ The second hospital that Wright also studied showed a less pronounced but still alarming figure: 24 percent of patients who arrived for diabetic ulcer care received amputations.

Even a tiny snapshot like this begins to suggest some sense of how normalized injuries impact care across the board—physicians upset with patients for not coming in earlier; patients terrified to seek care when they know the significant probability of returning with an amputation. There were tensions about which cuts were possibly avoidable or totally necessary, everyone struggling to bear their piece of the intensity.

From what I could observe, the caregivers most routinely dealing head-on with diabetic injuries were mostly Black and Indigenous women. They made up the majority of the community health workers and nursing and medical attendants with whom I spoke. Their expertise was formidable, but their labor offered little way out of the intense sensorium in which rural health workers practiced their craft. It took time to learn unwritten care strategies, a Garifuna rural health worker named June explained to me as she recounted the story of the first time she had cared for a diabetic foot: “I just told the patient, I’ll be right back!” The older Garifuna nurse with whom June was apprenticing later praised how artfully she had concealed the pause when she went outside and vomited.

“If the patient sees that you are scared, they will be scared too.” Nurses taught each other techniques to steel oneself to unwrap a diabetic foot, since “you never know what is going to be under there”: for example, to be ready for larvae so that anything else is good news; or how to take the cap off the bleach bottle before you open anything else, and then just focus on the bleach smell. June described learning to swallow her dread while calming patients’ reactions if they looked down at their foot by telling them stories about similar diabetic limbs that ended in some form of recovery. She said this was not the work she imagined. “Laugh, don’t cry,” she added.

I once fell into conversation with a team of care workers in Belize wearing matching bright green “EYES ON DIABETES” T-shirts. The printed design on their backs featured watchfully gazing eyes. I found myself thinking about how the assumed optics of functioning health surveillance had been displaced. In the gaps of accurate foot care epidemiology being conducted by global institutions, it seemed to me, not only were care workers “improvising medicine” to blunt the impact of diabetic injuries, with care practices full of the ad hoc force that Julie Livingston memorably describes around another chronic condition.²⁶ Members of these makeshift networks were additionally improvising select forms of surveillance, akin to the multiplied perspectives that some have called “para-sighted” optics—teaching each other new ways to see, keeping their own counts of emerging patterns, watching out for each other.²⁷

People I met improvised daily surveillance of their own bodies: obsessively checking their skin for scrapes or soft spots, enlisting others to help check the bottoms of their feet, praying to spirits for help monitoring. At one meeting I attended in the municipal building of Dangriga, the crowd of mostly women sitting in blue theater seats taught each other strategies for making a physician see their feet. “Untie your shoes ahead of time, while you’re waiting. Then stick it right on their desk. Just tell them, ‘Well Doc, I am about to put my foot right up on your desk!’” Everyone laughed, nodding. It was a good joke to remember: make the busy Cuban doctor laugh, buy an extra minute of their overstretched attention.

Nurse Norma and the Belize Diabetes Association on watch.

The Diabetic Foot Center Group that Dr. W founded and heads recently launched a new program in their travels across the Caribbean: visiting the proprietors of nail salons to teach them signs of diabetes ulcers. This network of beauty shop technicians is now helping to refer clients to hospital care when their hands or feet are in danger.

As Dr. W described initiatives like this, his words kept returning to two observations that are hard to square with each other: on one hand, the public has no idea what is happening; and yet, this is very well known by those who know it. What was happening in the space between these two truths? After we met, I planned to reach out to Dr. W back in New York, in hopes of interviewing him one day. But you know that you are studying a badly misunderstood topic when one of the field’s top physicians takes time out of a packed schedule to email you first.

MIXED METAPHORS

“It’s like an old friend, so I can talk about it,” Dr. W said of diabetes. He considered it like getting to know certain people over time, where mystery grows along with knowledge. Indeed, when we first met in Dangriga, I never expected to find myself listening to multiple performances of Dr. W’s convincing Rod Serling impersonation as we talked in the Staten Island community hospital where he has long worked: “There is a fifth dimension. . . . It is a dimension as vast as space and as timeless as infinity. It is the middle ground between light and shadow, between science and superstition, and it lies between the pit of man’s fears and the summit of his knowledge.” We both laughed at his Twilight Zone reference, and then Dr. W switched back to his regular speaking voice. “But really, diabetes has its own dimensions. It’s not an ordinary disease. It’s quite extraordinary.”

This was a sharp contrast with how diabetes is often portrayed. Diabetes is typically imagined as boring and mild. This banality is integral to the ways its disproportionate costs for certain populations get normalized as individuals’ own fault. Simultaneously dull and virulent, the particular stereotypes surrounding diabetes are profoundly enmeshed in five-hundred-year-old racial imaginaries that nobody can call back. There will be no truce of representation.

In Illness and Its Metaphors, Susan Sontag famously described the disease metaphors that societies come to accept as common sense—despite the ways such associations often blame and shame patients for their own illnesses, and frequently do harm to people’s sense of self and their possibilities for recovery. “Patients who are instructed that they have, unwittingly, caused their disease are also made to feel that they have deserved it,” Sontag worried.²⁸ At the same time, she added, “we cannot think without metaphors.”²⁹

This is why I admired Dr. W’s skill at inventing counter-metaphors, which he mixed unabashedly. Consistency in literal images is not his objective—just consistency in bodies.

“What really bothers me is the look of loss on a patient’s face when you tell them the reason they are going blind,” he said. In the face of that, he was willing to try any metaphor on for size. “Diabetes is like fighting a bull. You need to grab it by the horns, or it can gore you.” He explained that mixing metaphors was a talent he had honed over the years by talking with patients, learning what analogies seemed to stick in their mind and help them live with it better or mentally get a handle on some certain facet of it all.

“You can’t outrun diabetes. You can only outsmart it,” Dr. W said, smiling to himself. “That’s a good one. It can be overcome, but not without a strategy.” Different kinds of personification may be strategic for different things, he said. Many of his patients struggled with depression as their diabetes progressed. What framings might help really depended on the person. Alongside photocopies of medical instructions, Dr. W’s team kept on hand a variety of prayers for grieving patients who were religious. Other times, it helped to cast diabetes as an external nemesis and the body as an epic terrain where great carefulness was required, without implying any personal shame: “When you enter the land of diabetes, Dracula is around.”

As his Rod Serling voice suggests, Dr. W grew up with a love of science fiction. Dracula was one among a cast of diabetes monsters that Dr. W and his patients might evoke for each other. Sci-fi shaped how creatively he explained diabetes and listened to those dealing with its more extreme forms. It seemed to me as we spoke that perhaps science fiction had also prepared him for his encounters with sugar’s stranger subtleties in his work traveling across the diabetes epidemic: the crucial plot clues in sci-fi tend to come from paying careful attention to the faint signs of something potentially sinister ahead.

Dr. W’s other inspiration for his approach to dealing with patients was the seventies ABC show Marcus Welby, M.D., about a humanistic doctor who went out of his way to connect with patients. While his three brothers wanted to be sports stars, Dr. W said, by age seven he dreamed of becoming a physician. His particular interest in lower limb reconstruction came a few years later, at age ten, when he was trying to dash home from his grandmother’s house during a commercial break without missing any Star Trek and was struck by a car. He spent months recovering in a body cast (and never got to reschedule his plans with the prettiest girl in school, he sighed). That period of healing was one of the formative experiences that made him want to be a lower limb surgeon. The diabetes focus came to his work later, from observing patterns of injuries and sheer need in neighborhood community podiatry clinics. He has now been taking care of diabetic feet for over twenty-one years.

“I think we need to be more poetic about diabetes,” Dr. W said. “Let me give you some images.” He proceeded to reel off so many that I could barely keep up and had to distill them down later.³⁰ They kept slipping between metaphors and the uncanny clinical realities prompting them:

When you hear diabetes, it isn’t alarming. Even in this information age. Diabetes is the disease that nobody knows, because everyone thinks they already know. It’s the known unknown. It’s abstract in a way, but so tangible. Some people’s arteries are so calcified, they show up on x-rays as bones. So we are seeing people turning to stone from the inside. It kills you slowly. Almost methodically. Almost systematically. Almost intentionally. It starts off not so bad. Some of my patients are afraid to see me because they live with the fear of losing a leg after seeing it happen to their parents.

Diabetes can accelerate your age, large glucose molecules attaching to the outside of your cells. It can affect every cell of your body in a different way. There is always more mystery, the medical paradox. A patient will tell me sometimes, “Doctor, I feel like my feet are being lit on fire. Right now we’re in this room, but my feet are in hell with the devil.” The nerve damage keeps them up at night, and all I can do is give them GABA drugs, painkillers. Neuropathy: numbness, horrific pain, shooting, stabbing, burning. Ask people. You will hear a hundred different words for a hundred different kinds of pain.

Phantom pains after an amputation: the trauma over and over of feeling a limb still there and seeing it is gone. It tricks your body. Diabetes is the great magician. It gives you illusions, hunger and thirst you can’t satisfy. Diabetes is like a thief, or a trickster. It is a thief of limbs. It is a tragedy that keeps happening. Patients getting cut into pieces. It hits like an asteroid. It changes like a chameleon. As soon as you think you know what it looks like, it will change shape and hit you in another form: it’s high blood pressure, it’s kidney disease, it’s blindness, it’s a toe. It keeps morphing. It lives with you. It lives in you. It’s almost like it’s a virus, hiding.

Driving home from Brooklyn, I kept replaying Dr. W’s eerie images in my mind. “Our bodies prime our metaphors,” James Geary observes, “and our metaphors prime how we think and act.”³¹ I wondered how policies to guide public perceptions of diabetes care might look different if they were based on Dr. W’s descriptions of learning to live with a volatile shape-shifter, offering no false claims that the work would be easy. His creative descriptions struck me as efforts toward what Charles Briggs and Clara Mantini-Briggs call “communicative justice”—working at the junctures of public storytelling about health conditions to try to change the ways they biologically manifest in bodies.³² There was one image, in particular, Dr. W had voiced that I found myself returning to again: almost like a virus, hiding. Not quite like a virus. Slow, cumulative. But in certain ways . . . almost. In contrast to the rest of Dr. W’s figures, that was an image of diabetes I had heard many times before.

PARA-COMMUNICABLE CONDITIONS

As rising diabetes became part of the social fabric in Belize, rumors began popping up that certain forms could be contagious. There were numerous stories about husbands and wives becoming afraid to sleep in the same room, with the specter of threatened limbs again appearing as the defining feature of these anxieties.

“Well, here it comes for me,” Laura recalled thinking when she was diagnosed with diabetes in her twenties. “I knew it was coming for me, because my mom had it, my sister . . . we all have it.” The personified pathogens that people kept using to allude to their diabetic injuries came from the language of infection: many said of diabetes sugar that they “caught it.” Other phrases echoed histories of attempted escapes from sugar: “It caught me.”

I was surprised that rumors of contagion seemed to multiply, rather than subside, as time wore on and as people in Belize became more familiar with the illness and observed it more closely in their own communities. Public health authorities often emphasize education about the causes of diabetes as one of the most important tools to curb its spread. But in this case, it was not that people had never received diabetes education; it was that the one-size-fits-all biomedical education from abroad often did not fully square with the realities they saw with their own eyes. Diabetes moved like an epidemic. It killed like an epidemic. In the Stann Creek District, diabetes affected at least ten times more people than HIV/AIDS,³³ and everyone knew that AIDS was an epidemic. Diabetes was spreading quickly, and a “non-transmissible” disease is not supposed to spread.

Map of global diabetes deaths, shown at community forum in Dangriga.

As historian Allan Brandt notes, “The problem of causation is critically important because it reflects directly on the fundamental moral issue of responsibility for disease.”³⁴ This point hit home more concretely for me when I gave a public presentation on an early version of this project’s findings to a small crowd in Dangriga. The audience came mostly from local branches of the Belize Diabetes Association and HelpAge, a local organization providing supportive care across generations. I began our conversation that day with a cursory slide showing the World Health Organization map of diabetes deaths. I had assumed that larger context was the part everyone would already know, but the global map seemed to be the only image I showed that surprised anybody. People raised eyebrows at each other. Wait, versions of this are happening across the world? Some people later reflected that they had gotten so used to stories attributing the Belizean rise in diabetes to their personal responsibility or local “cultural foods” that it shook up their perspectives just to take a step back and think of diabetes as an epidemic—a much bigger story, whatever that might mean.

There is a lot on the line in “explaining epidemics,” as Charles Rosenberg once put it.³⁵ Global aid resources tend to move according to the moral rationales of humanitarian “crisis.”³⁶ This kind of intervention “has come to define itself through exception,” Peter Redfield aptly observes, though that framing quickly “loses its transcendent magic” when “diseases prove chronic.”³⁷ One woman in Belize named Nel described how a team of U.S. medical students visiting her village had been fascinated by her ankle wound when they believed she had leishmaniasis (a tropical disease caused by sandfly-borne protozoa parasites), but stopped visiting when it turned out to be a diabetic ulcer. Senses of medical urgency (or nonurgency) also remain deeply contoured, as Priscilla Wald describes in Contagious, by “how both scientists and the lay public understand the nature and consequences of infection, how they imagine the threat, and why they react so fearfully to some disease outbreaks and not others at least as dangerous and pressing.”³⁸

The “entwined histories . . . of tropical medicine and racial thought” continue to shape how health issues get perceived, Warwick Anderson argues, together underpinned by colonial notions of contagion. ³⁹ A cursory glance into the archives yields more than fifty years of ignored calls for a response to diabetes in the world. “Diabetes is no longer a rare syndrome in the tropics, and in many parts is being diagnosed with increasing frequency,” Dr. Silas Dodu wrote in the British Medical Journal in 1967. Returning home to Ghana after medical school in London, Dodu linked the phenomenon he observed to the spread of “white man’s food.”⁴⁰ Several years later, the Pan American Health Organization (PAHO) sounded another alarm. “Right now the seriousness of the problem is reflected by the large number of diabetics who suffer, die, or become invalids,” reads their 1975 diabetes report, “fatalities considered largely preventable because effective treatments for these diseases were known.”⁴¹ Their astute and progressive policy recommendations are disturbing today, because they detail precise knowledge and actionable suggestions for policies to prevent diabetes injuries from spreading further—published before HIV/AIDS ever became legible as an epidemic, and before most people described in this book were born.

Although wider diabetes policy responses largely stagnated after PAHO’s 1975 call to action, other aspects of diabetes knowledge have grown more robust over the decades that followed. In addition to studying industrialized diets, more scientists now also track the ways that diabetes risks can be amplified by environmental exposures and chemicals. Some molecular pathologists call this “the new toxicology paradigm of endocrine and metabolic disruption” that reframes diabetes and related autoimmune conditions as a “hidden cost” to polluted landscapes.⁴² This phenomenon first became clear through industrial accidents: for example, diabetes rates in a small town in Italy spiked in the twenty years after its chemical plant exploded.⁴³

Altered atmospheres also get absorbed: a recent long-term study of 1.7 million U.S. veterans estimated that about 14 percent of diabetes cases may be associated with air pollution, regardless of what diets individuals ate.⁴⁴ Foods are impacted by air changes, too: crops such as wheat have less protein and more carbohydrates when grown in high-carbon atmospheres,⁴⁵ while rice can absorb heavy metals like mercury (which also contribute to diabetes risk) if the rice patties are fed by polluted water.⁴⁶ Chemicals used to protect crops also get inside humans: a study of 3,080 farmworkers in India reported that exposure to organophosphate chemicals significantly increased diabetes risk, apparently because insecticides meant to kill pests also interact with the microbes crucial to metabolic balance inside people’s digestive tracts.⁴⁷ This is only one of several mechanisms by which endocrine-disrupting chemicals contribute to diabetes, which is a disease of the endocrine system.⁴⁸

“We are porous selves within microbiomes and with microbes, sharing social lives even when we may not want to,” notes Juno Salazar Parreñas.⁴⁹ Exposure to viruses can also trigger certain forms of diabetes and cancer.⁵⁰ In addition to the microbial life within us, there has also been more scientific attention being paid to the plasticity of human biology—including metabolic absorptions that connect human bodies and larger environs,⁵¹ hunger- and stress-related epigenetic modulations,⁵² and ideas of “infective heredity.”⁵³ The notion of “situated biologies” proposed by Margaret Lock reflects these puzzles—Lock initially used the name “local biologies” to consider such contingent effects on each individual body, yet the worldwide patterns in rising chronic conditions presented her with a paradox: How are “local biologies” of individuals changing in such patterned ways across global scales?⁵⁴

In this view, human eating is only one dimension within “nested metabolisms.”⁵⁵ Bodies exchange matter through “metabolic landscapes,”⁵⁶ such as the paradoxical “choices” that Elizabeth Hoover examines in The River Is In Us when studies revealed that local fish and waters contain diabetes-causing toxics.⁵⁷ Chemicals also impact industrial farm animals and plants, as Hannah Landecker examines in “Food of our Food,” which become part of human digestion as well when people eat them.⁵⁸

Amid so many complex interactions, diseases are not binary either-or conditions. So how did our terms for addressing them come to be? It is worth taking a step back to ask how diseases came to be framed in such a dualistic paradigm to begin with.

The old paradigm of environmental miasma comes from an ancient Greek word meaning “pollution” (muíασμα), which framed disease as coming from “morbid material” in contaminated local environs. In the nineteenth century, germ theory replaced miasma paradigms with a stricter dichotomy. Dominant models today still hold that there are two basic ways to think about diseases: they are either “communicable” or “non-communicable.” In this binary schema, infectious diseases need to be addressed in terms of interrupting contagion between people, vectors, and environments via specific exposures to disease-specific germs or biological pathogens. Meanwhile, since non-communicable diseases are by definition not being transmitted between bodies, they are typically analyzed via the individual’s own inborn genetic constitution or understood as resulting from personal choices and “lifestyle” behaviors.⁵⁹

Public health classes often reference iconic histories of contagious disease surveillance, such as John Snow’s team’s identifying and disrupting patterns of water-borne cholera at the Broad Street Pump in 1854 London. Yet the shadow side of Snow’s discovery remains instructive: it prefigured germ theory, which described an important way that bodies are exposed to disease. But some industrial actors tried to cast infection as the only way that exposures mattered, by seizing this new explanatory model to shield themselves from responsibility. In 1855, Snow was called in a legal case about deregulating industrial pollution in London. He testified that chemicals could “not cause disease; those poisons do not reproduce themselves in the constitution.” When prodded further about reported symptoms of toxic exposure among workers, Snow responded: “Persons are often very much influenced by the imagination.”⁶⁰

To approach chronic disease patterns, we need ways to recognize and publicize potential exposures of processed diets and industrial toxicants, as well as biological germs—an epidemiology of what Adia Benton has called “connectors,” rather than vectors alone.⁶¹ That requires attention, Michael Fischer notes, to “the bioecologies at play” between porous boundaries and reactive membranes, commodity flows, and human and ecological health.⁶²

In light of these gray zones, the either-or labeling of “contagious” versus “non-communicable” disease appears insufficient to describe the prevalence of human-made diseases now becoming visible around the world.⁶³ Diabetes is not an exception to, but very much iconic of growing chronic epidemics—such as cancer clusters⁶⁴ or the soaring prevalence of asthma and other autoimmune conditions.⁶⁵

When I talked with public health practitioners and policy makers about such exposures, I found it helpful to have a working name for this in-between. I came to describe it as para-communicable—chronic conditions like diabetes that may be materially transmitted as bodies and ecologies intimately shape each other over time, with unequal and compounding effects for historically situated groups of people. Focusing on para causalities—the products and exposures changing alongside (para) people’s bodies—draws attention to the imperative to acknowledge and rework those systemic harms. Exploring this approach also became a way to translate across different spaces of knowledge making—such as academic conferences where keywords to describe exposures were abundant, and the arenas of practice where they were often illegible or quietly fell out of frame.

This is not a return to miasmatic thinking, though. As historians have observed, cloudy causalities are indeed frequently part of what it feels like to live amid ongoing exposures—but confusion is difficult to regulate, and industries bank on this.⁶⁶ Nor can chemicals simply be reframed as contagious—they too do not follow a neat binary pattern. They have their own intervals of low-dose “latency.”⁶⁷ Current regulatory paradigms that contribute to so many toxics on the loose are in part flawed for exactly this reason. Germ theory informed the ways in which chemicals were tested in the laboratory, but these simplified models of disease have often failed to recognize the complex ways a chemical can still cause harm.⁶⁸

Sugar and food industries have also attempted to intentionally produce confusion, akin to techniques described in books like Merchants of Doubt.⁶⁹ Marion Nestle examined how Coca-Cola, for example, has paid doctors to back suspicious studies and run ad campaigns focused on how individuals with chronic health issues need to exercise more.⁷⁰ These corporate strategies raise special challenges for scholarship dealing with uncertainty. The key theorists of syndemics—a widespread model describing how multiple epidemics interact—recently expressed concern that the term can take on a miasma-like cloudy quality if it is taken up imprecisely or without follow-up steps to trace specific pathways and signatures of responsibility.⁷¹ Anthropologists like Elizabeth Roberts⁷² are seeking ways to build a counter-science, through sustained collaborations and a grassroots-guided “science of the in-between.”⁷³

Thinking back to “diabetes multiple,” policy interventions (or their absence) may actually produce biologically different versions of diabetes, on the population level as well as for individual bodies. What an epidemic is is different—not just in scale, but potentially in its mechanisms and forms of transmission. The first two cases of drug-resistant bacteria documented in the United States both occurred in diabetic ulcers—apparently from separate instances of horizontal gene transfer, by which bacteria can nearly instantaneously swap genes with other living or dead bacteria.⁷⁴ One study of 150 diabetic ulcers in India found that “91% of the bacteria were resistant to three or more antibiotics,” including feared bacteria like MRSA.⁷⁵ In cases where people live for months or years walking in sandals with open diabetic wounds on their feet, it is also possible that horizontal gene transfer occurred directly between the bacteria infecting lower limb ulcers and the bacteria living in local soils.

This tendency for unchecked diabetes injuries to foster drug-resistant bacteria may have implications for future antibiotic efficacy and diseases of all kinds. Yet if drug-resistant bacteria sound like an urgent global issue in a way that the foot ulcers fostering them do not, that is another example of why the diabetes epidemic will continue to grow.

GEOGRAPHIES OF BLAME

Media analysts report that a “full 73 percent of articles that mention the poor, African Americans, or Latinos blame obesity on bad food choices, compared to only 29 percent of articles that do not mention these groups.”⁷⁶ As Paul Farmer has noted of the common figure of a blame-worthy patient, “All too often, the notion of patient noncompliance is used as a means of explaining away program failure.” He related this to “immodest claims of causality”—how patient noncompliance is commonly assumed and made persuasive without evidence, but any alternative explanation requires a great deal of evidence for policy makers to find it convincing.⁷⁷ Looking at tuberculosis cases, Farmer asked how people with TB could be labeled “noncompliant” with treatment when 50 percent don’t even know they have it. This is the same percentage of people with diabetes globally that the International Diabetes Federation today estimates have never been diagnosed.⁷⁸ These patterns resonate with the “geographies of blame” that anthropologists have documented around the politics of labeling “noncompliance” elsewhere: “Throughout the world, those least likely to comply are those least able to comply.”⁷⁹

“How am I going to make a diet? There is only one kind of food here,” I often heard patients tell the visiting Cuban physician, who would laugh kindly but never really had an answer. In nearby Guatemala, Emily Yates-Doerr has described the ways nutritional experts carefully avoided talking about problems of macro-infrastructure that neither they nor their patients could change, since that advice could easily have registered as cold or uncaring.⁸⁰ The caregivers I met likewise avoided initiating conversations about “social determinants of health” directly with patients, in hopes of generating a healthy sense of optimistic possibility—focusing on the scale within their grasp. This mostly meant trying to equip patients to negotiate existing foodways. But who will rework larger food systems?

Some preliminary studies have proposed that diabetic foot ulcers could be better treated if patients were also provided with supplies of nutritious food.⁸¹ Scholars such as Harvard economist Michael Porter have argued that such investment would be beneficial for health systems, which spend thousands of dollars each time they amputate a diabetic injury. That money could be better invested in nutrition programs to help prevent amputation.⁸²

Yet even the food baskets that accompany HIV/AIDS treatment programs often contain cheap grains, such as white rice, which are precisely the kinds of high-carbohydrate foods that people with diabetes are discouraged from consuming. What would be in a diabetes food basket? (And should it be in the HIV/AIDS food baskets, too, considering how many patients with HIV/AIDS are also getting diabetes as a side effect of their drug treatments?⁸³) Trying to imagine a food basket’s hypothetical contents only highlights the bigger issue: to actually curb the rise in diabetes, healthy foods need to exist for sale at affordable prices in grocery stores, not just dispensed in baskets for those with already sick bodies or imperiled limbs.

This also casts different light on the limits of existing models. For instance, some global health programs piloted ways to attach medicines to cases of Coca-Cola in order for treatments to hitch a ride to rural regions beyond health systems’ reach. But in the case of diabetes, this delivery proposal would be an unsettling image. Which is more disturbing: the idea of insulin and metformin pills traveling to remote areas they could not otherwise reach attached to cases of soda, or the present reality of the Coca-Cola arriving alone?

Every local diet that has been dismantled by industrial diets is unique—meaning that any guidelines about eating require local texture in order to be meaningful for people. One morning, I joined a group in Dangriga that gathered to share cooking ideas to modify Belizean and Garifuna dishes for those with diabetes. Inspired by Garifuna cooking projects like Isha Gutierrez-Sumner’s Weiga (Let’s Eat!)⁸⁴ and Belizean restaurants like Nutrilicious Corner,⁸⁵ some suggested that events around healthy eating with diabetes might get people talking.

It would be good, they said, to have a locally relevant alternative to the foreign pamphlets that gave the false impression that all diabetes-healthy foods were “white people food.” Grace was there, mostly just listening. Recipe ideas that the group offered included blended greens with milk and nutmeg; boiled raisins with okra, bukut, and vanilla; oven-roasted carrots; beet salad with slivered watermelon; club soda with a squeeze of papaya; soursap leaf and orange leaf tea; and fish dipped in seawater (instead of table salt) for cooking, the way past generations did. Others had questions about local and ground foods, which of course came with no labels. Was toasted cassava safe for people with diabetes? They wondered if local labs could be equipped to investigate the nutritional content of certain dishes or to monitor their fish and water to guard against toxic chemicals.

I initially thought it would be fairly easy to apply for a grant to support the kind of local foods project they suggested. But it turns out that the U.S. National Institute of Health explicitly declines to fund research that generates locally relevant dietary and care translations; they reason that such outcomes would not be globally “generalizable.” If only approaches imagined as “generalizable” receive policy funding, then most well-resourced interventions end up framing what is inside individuals as the problem to target, rather than putting resources toward remediating harms of people’s lived environments.⁸⁶

When I bumped into Grace later in line as she waited to see Dr. W, it seemed that her foot spoke not only of gaps in the surveillance around injuries due to diabetes, but of displaced watchfulness throughout larger global systems of food and medicine. Her injury seemed to evince the culmination of decades or centuries of policy and legal regulations that contributed to chemicalized water, air, and sustenance; and skewed food options, linked to unjust agricultural systems and long legacies of land dispossessions. Viewed in this way, every amputation is preceded by “a thousand tiny cuts,” as Michael Montoya wrote of diabetes.⁸⁷ In fact, each end-of-the-line injury like Grace’s (as well as its erasure in much global accounting) could be read as what Marcel Mauss called a “total social fact”—at once economic, political, legal, ecological, institutional, biological, alimental, spiritual, and familial.⁸⁸ A total social fact demands a total social response. Yet at present, only 2 percent of global health funding is spent on all chronic diseases combined.⁸⁹

Some months after we last saw each other, I heard the heavy news that Grace had chosen to die with all of her limbs attached. After careful meditation, she made the choice to refuse the amputation of a gangrenous leg. “More people are doing that now,” Norma said when she told me. Looking for a picture of Grace to send to her family, I found only a terrible archive of her feet. My mind kept returning to Dr. W’s words from that day, when he wished out loud that there could be some way to get her to a hyperbaric chamber.

THREE ATMOSPHERES

At some point I started to think of decompression chambers as almost mythical places. Originally developed in the late 1800s in England for recreational and military scuba diving, hyperbaric chambers became widely used in hospitals for chronic wounds in general (and diabetic ulcers in particular) in Europe and North America throughout the 1960s and 1970s.⁹⁰ Their physics is akin to going deep underwater: the pressure inside hyperbaric chambers is measured on the machines’ gauges in ATAs, Atmospheres Absolute of pressure. At sea level, you are at 1 ATA, experiencing one atmosphere of pressure. Inside of a hyperbaric chamber, each additional atmosphere corresponds to the pressure of being underneath an extra thirty-three feet of seawater.

This pressure helps to saturate blood plasma with healing oxygen. (Plasma is the hay-colored fluid in which the more familiar components of blood, such as platelets and red and white blood cells, travel through the body, helping vascular tissues heal.)⁹¹ Even the most stubborn diabetic wounds might have a chance with this boost of intensive oxygen under pressure.

Bodies that stop healing are hard to imagine. Even a minor cut or scrape can’t form a scab or shrink a little each day. A tiny abrasion might look like it had just happened for months, even years. Almost like the injury is frozen while time goes on around it, except that it can still become infected. Preventing infection is work that starts anew each day. But even very old diabetic wounds can often start to heal again if given a few sessions in a hyperbaric chamber. Some studies have even suggested that oxygen therapy is helpful not only for wounds, but actually for preventing the onset of diabetes in the first place.⁹²

These devices activate the body’s healing capacities through the saturation of oxygen-rich air, either directly inside the chamber or through a mask. Originally honed for safety by British naval experiments on herds of goats, today U.S. hyperbaric chambers are marketed even for pets, such as “equine athletes and pleasure horses.”⁹³ At some centers, special breathing masks can accommodate the snouts of certain animal species. Humans, meanwhile, can wear a range of different models: some masks look like the clear bubble helmets intended for astronauts, while other images remind me more of scuba gear or nebulizer masks. Multi-person hyperbaric chambers can be sizeable, like a clinical waiting room with round submarine windows; others resemble an appliance like a huge microwave, with seating for five or more. Some report that the pressure inside feels very slight or even imperceptible but makes your ears pop, like descent in an airplane.

Researching the varieties of these decompression machines, I suddenly realized with some shock that there actually had been hyperbaric chambers in Belize all along. A chamber has been available for decades in a network sustained by Ambergris diving shops, in case any scuba divers experience the bends or other pressure-related sicknesses. As an additional safety measure, a second hyperbaric machine was also added to serve diving tourists on the island.

It turns out that the phenomenon of diabetic limb injuries across the Caribbean coincides with a geography particularly well equipped with hyperbaric chambers: Barbados, Belize, Cuba, Dominica, the Dominican Republic, Dutch Antilles, Jamaica, Martinique, Mexico’s Cancun, Puerto Rico, Saba, Saint Lucia, and Trinidad and Tobago (among others), according to what I could find on websites like Caribbean Adventures and Dive Vacations. Most were located in places citizens would not think to turn to for diabetes care, such as marine parks, fisheries, nearby scuba shops, and inside army bases.⁹⁴ I watched a video of one, then asked Dr. W if he had time for a call, to make sure I wasn’t misunderstanding.

“Are these the same machines that can prevent diabetic amputations?” I asked him.

The short version of his answer was “Pretty much . . . but it’s really complicated.”

The long answer would be something anthropologists might call a “socio-technical problem,” since it’s hard to separate technological limits from the way human societies position and use their devices.

In the United States, health insurance often covers hyperbaric treatment for diabetes ulcers, billing approximately $350 per dive as long as the specialist is accredited by the Undersea Medicine and Hyperbaric Society. But in parts of the world labeled as lower income, insurance reimbursement apparatuses are more complicated and oxygen more expensive per tank. And diabetic sugar’s wounds, unlike diver’s bends, are almost never a one-time fix. Additionally, most scuba divers with decompression sickness quickly recover. But the most serious diabetic ulcers might require session after session of dialing the machine up to three Atmospheres Absolute—the pressure of being under approximately sixty-six feet of seawater.⁹⁵ This means more compression and more oxygen—and thus more cost and possibly greater risk, since decompression therapy always carries the chance of a rare (but ever possible) side effect of seizures or a serious issue caused by the intense pressure. It is best to be near a full medical facility and nearby teams of physicians in case something goes wrong.

Dr. W was very hopeful that more portable devices featuring aerosolized oxygen in transportable bags may become accessible for diabetic wound treatment around the world in the near future. He sent me a link of a YouTube video showing the new technology, and we left it at that. From what I could read between the lines of “it’s really complicated,” Dr. W’s decades of work across the Caribbean had taught him that a transportable device his team could carry with them would work well. But it had not proven easy to get citizens access to infrastructures of hyperbaric chambers that exist in their own countries.

For instance, when Sarah’s brother, Tobias, had texted Dr. W that picture of the small bone that fell out of his foot, the only thing Dr. W could think to do was invite him to travel over three thousand miles from Belize to New York City. The treatment for Tobias’s foot lasted over a year. When receiving optimal care in a hospital, diabetic ulcers still have surprisingly long median healing times, between 147 and 237 days.⁹⁶ In Tobias’s case, treatment with Dr. W and his colleagues included not only dozens of sessions in a hyperbaric chamber but also a wound vacuum-assisted closure, antibiotic beads, and grafts to treat the bone infection. Dr. W helped him find a place to live near the hospital, and his network of colleagues found a way to cover the treatment costs. Tobias’s neighbors and family all chipped in to help with his plane ticket.

Human solidarity is an elusive thing. One of the most famous early social thinkers to theorize it was sociologist Émile Durkheim. It is a lesser-known fact that Durkheim’s influential ideas about social coherence were shaped by his obsession with the era’s new sciences of bacteria behavior.⁹⁷ He suggested that community and communication shaped each other—since social groups impact how perceptions turn into concepts, “communicable to a plurality of minds.”⁹⁸ In this view, communicability—the ways that biological conditions are transmitted between bodies—is impacted not only by our communication about them, but also in turn by the communities that take shape (or not) to respond.⁹⁹

This, too, is integral to what I came to see as the para-communicability of diabetes: not just a different framing for explorations of causality but one that implies a more wide-ranging model of public response; “not to ignore difference, but to create alter-relations with one another,” in the words of Kristen Simmons.¹⁰⁰ Hyperbaric availability for scuba divers is precisely designed to offer a safety net so that pleasure seekers can indulge in risk, yet have the option of rescue if they would die without it. This logic of care was not being extended to those dying from diabetic injuries. Between these two scenarios lurk many uneasy questions: What counts as an extraordinary measure, for whom? Whose lives are valued as worth rescuing and at what cost?

When I called the largest hyperbaric clinic in Belize, I learned their machine simulates dives of up to 165 feet. Staffed by a specially trained physician, the chamber is “multi-space,” meaning it can hold more than one person and accommodate others coming or going midsession. When I asked if it could be used to treat diabetic injuries, the curator replied that scuba divers at times receive care for coral-related injuries, and indeed it could also be used on diabetes wounds. It cost three hundred U.S. dollars per session. She added that for patients with U.S. health insurance, the copay went down to one hundred U.S. dollars.

It has become customary to talk about globally unequal infrastructures in the language of “Global North” versus “Global South.” But this geography kept taking on more complicated shapes, when trying to describe either outposts of U.S. insurance–accepting technologies available to those in the know in Belizean dive shops; or the checkered maps of cities like New York and Los Angeles, where diabetic amputation rates increased exponentially in correlation with poverty and segregated spaces.¹⁰¹ These internal inequalities get smoothed over in maps based on countrywide averages. Hyperbaric chambers were another uneasy reminder that even in the same places, we live in segregated atmospheres—racialized climates that pattern out both inside the United States and within most any country, including Belize. And as James Baldwin once wrote of the psychic and bodily effects of racial segregation: “One is always in the position of having to decide between amputation and gangrene.”¹⁰²

Stock photo of a hyperbaric chamber in a dive center.

My first impulse was to visit one of Belize’s hyperbaric chambers, as if that would somehow resolve the contradiction. I had never been to San Pedro and wondered if Norma might go with me. But when I broached the subject as we chatted on the phone one morning, Norma said she had never heard of that machine and didn’t think one existed in Belize. I looked down at my notes from the dive network’s clinic, unable to put their price list together with the insights from someone who had spent so many years in diabetes wound care—all the patients Norma had worked with over time to pull back from the brink of loss, and all those like Grace she had seen die without hearing of any possible remediation measures that existed.

It didn’t feel right to press harder about the idea of a trip together. But I found enough words to repeat to Norma how it was the kind of machine Dr. W had used to treat Tobias’s foot in New York. The phone line got silent for a minute. We probably each had our own fantasies and doubts about the potentials of such an elusive apparatus. In the moment of quiet, I wondered if Norma was trying to imagine it, too: the pressure, the oxygen, the slow hours of boredom and excitement. The blood starting to move again through skin and tissue that had seemed dead. The feeling when sensation comes back.

I kept remembering how everyone laughed when Grace struck a jokester pose for someone’s camera and then waved without looking back as she rode down a dirt path on her bicycle. There is no consensus about the larger worldwide pattern her trajectory is part of: the World Health Organization attributed 1.5 million deaths to diabetes at last count, but the International Diabetes Federation estimated this number to be 5 million deaths each year.¹⁰³ Recalling that last glimpse of Grace, in my memory she is riding straight into the place where it has come to seem normal to annually lose track of millions. People moving through these strange infrastructures bring us to another scale where, as Teju Cole writes, “The death toll is always one, plus one, plus one. The death toll is always one.”¹⁰⁴

This is it. This is the plague of our lifetimes.

It is by no means simple.

It’s like a long hallway, or a maze.

In Belize, you know the Blue Hole where people deep dive?

When you go into the depths of it, you find that it’s a whole other world.

I see diabetes as being like that.

I think people in the public need to be taken by the hand

If you could convey any of this in writing

Sometimes it reminds me of the Twilight Zone

Welcome to the strange world of diabetes

It is very different than what you have been taught

Come take a look from the inside

It’s not what you think from out there.

—Dr. W, New York City¹⁰⁵