Traveling with Sugar. Amy Moran-Thomas
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