Everything Is Tuberculosis

We are powerful enough to light the world at night, to artificially refrigerate food, to leave Earth’s atmosphere and orbit it from outer space. But we cannot save those we love from suffering. This is the story of human history as I understand it—the story of an organism that can do so much, but cannot do what it most wants.

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1904 is that tuberculosis is curable, and has been since the mid-1950s. We know how to live in a world without tuberculosis. But we choose not to live in that world. In 2000, the Ugandan physician Dr. Peter Mugyenyi gave a speech about the rich world’s refusal to expand access to drugs treating HIV/AIDS. Millions of people were dying each year of AIDS, even though safe and effective antiretroviral therapy could have saved most of their lives. “Where are the drugs? The drugs are where the disease is not,” Dr. Mugyenyi said. “And where is the disease? The disease is where the drugs are not.” And so it is with TB. This year, thousands of doctors will attend to millions of TB patients, and just as my great-grandfather could not save his son, these physicians will be unable to save their patients, because the cure is where the disease is not, and the disease is where the cure is not.

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This is a book about that cure—why we didn’t find it until the 1950s, and why in the decades since discovering the cure, we’ve allowed over 150,000,000 humans to die of tuberculosis. I started writing about TB because I wanted to understand how an illness could quietly shape so much of human history. But along the way, I learned that TB is both a form and expression of injustice. And I learned that how we imagine illness shapes our societies and our priorities. James Watt understood consumption as a mechanical failure by the lungs to ingest the proper ratio of gases. My great-grandfather understood his son’s sickliness to have been driven by ingesting coffee and sweets in childhood. Others would understand TB as an inherited disease that affected certain types of personalities. Still others would argue that the illness was caused by demon possession, or poisoned air, or God’s judgment, or whiskey. And each of these ways of understanding tuberculosis shaped not just how people lived and died of TB, but also who lived and died of it.

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At the time, I knew almost nothing about TB. To me, it was a disease of history—something that killed depressive nineteenth-century poets, not present-tense humans. But as a friend once told me, “Nothing is so privileged as thinking history belongs to the past.” When we arrived at Lakka, we were immediately greeted by a child who introduced himself as Henry. “That’s my son’s name,” I told him, and he smiled. Most Sierra Leoneans are multilingual, but Henry spoke particularly good English, especially for a kid his age, which made it possible for us to have a conversation that could go beyond my few halting phrases of Krio. I asked him how he was doing, and he said, “I am happy, sir. I am encouraged.” He loved that word. Who wouldn’t? Encouraged, like courage is something we rouse ourselves and others into.

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We scrolled through the pictures together. I tried to communicate that I was smiling from behind my mask. Henry wore no mask—his bacterial load was low enough that he posed no infection risk to others. As we chatted, I realized I was looking at him differently than I had when I believed him to be the son of a staff member. He no longer reminded me of my nine-year-old son; now he was an emaciated young man. When he looked up at me, I saw yellow clouds in the whites of his eyes—a byproduct of the liver toxicity that frequently accompanies the treatment he was on. I noticed swelling on one side of his neck—which I would later learn is a telltale sign that TB has infected the lymph nodes. I asked him if he took medicine every day. “Yes,” he said. “I swallow them. Also they inject shot.” “Is that scary?” His big eyes got bigger as he nodded. Henry told me that the injections burned like a fire under his skin, and that the medications had many side effects, but the worst one was hunger. Active tuberculosis severely suppresses appetite, causing stomachaches and generally inhibiting the ability to eat, and once treatment commences and the infection begins to lessen, hunger roars back, which is a good sign—but only if one has enough to eat.

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want to be careful here not to imagine Isatu’s life as merely poor, or merely oppressed, or merely anything. Yes, she grew up in a village where malnutrition was common, and she was often hungry, especially after her father’s death when she was ten. But she remembers happy early years in Bonthe, “joy joy joy” when she went to school and attended church each Sunday.[*3] She also loved school (and excelled in it). She enjoyed being with her many friends, how there were always kids around who knew and cared for her. They invented games to play together, then fought over the rules of those games. When Isatu has described her childhood to me, I’ve found myself thinking about Nikki Giovanni’s 1968 poem “Nikki-Rosa,” which begins: childhood remembrances are always a drag if you’re Black you always remember things like living in Woodlawn with no inside toilet and if you become famous or something they never talk about how happy you were to have your mother all to yourself and how good the water felt when you got your bath from one of those big tubs that folk in chicago barbecue in

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It is a strange fact of human history that we tend to focus so little on disease. In my college survey course about the history of humans, I learned of wars and empires and trade routes, but I heard precious little of microbes, even though illness is a defining feature of human life. As Virginia Woolf wrote in On Being Ill, considering “what wastes and deserts of the soul a slight attack of influenza brings to light…it becomes strange indeed that illness has not taken its place with love, battle, and jealousy among the prime themes of literature.”

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Some of this may be due to the nature of pain itself. As Barbara Duden has written, “Pain is in the body. It leaves no trace for the historian, unless complaints about it are recorded.” But I wonder if we also ignore illness because of our bias toward agency and control. We would like to imagine that we captain the ships of our lives, that human history is largely the story of human choice. Perhaps this is why rumors have swirled for millennia that Alexander the Great died of poisoning even though he almost certainly died of typhoid or malaria. We simply don’t want a world where even the most powerful emperor can be felled by mere infection. But history, alas, is not merely a record of what we do, but also a record of what is done to us.

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from infected cows. M. tuberculosis is a near-perfect human predator in part because it moves very slowly. The bacteria has an uncommonly slow growth rate. While E. coli can double in number about every twenty minutes in a laboratory environment, M. tuberculosis doubles only about once per day. And so infections simply take much, much longer to make an infected person sick, as the number of bacteria remains lower, allowing the immune system lots of time to mount a defense against the pathogen. But there’s a problem: M. tuberculosis grows so slowly because it takes a long time to build its unusually fatty, thick cell wall, which is a formidable enemy to the immune system. White blood cells struggle to penetrate the cell wall and kill the bacteria from within. In fact, it’s so hard for infection-fighting cells to penetrate the bacteria’s cell wall that, instead, white blood cells usually surround it, creating a ball of calcifying tissue known as a tubercle.[*3] The TB bacteria can survive within these tubercles, replicating very slowly, consuming dead tissue as food. This type of infection, sometimes known as latent tuberculosis, will often last a lifetime without ever making a person sick. Most people infected with TB will never become ill because the tubercles will continue to hold the bacteria within them, preventing active disease from developing. But in 5 to 10 percent of infections, the immune system can’t produce enough white blood cells to surround all the bacteria with tubercles, and M. tuberculosis is able to grow and grow within the lungs or elsewhere. The body is slowly overwhelmed by infection (and the immune system’s resulting inflammation), eventually leading to death.

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the money whipped away on sickness.” Favor had developed a cyst in her throat that interfered with her vocal cords and made her voice hoarse and whispery. Isatu believed in the medical system even if her husband didn’t, and so she took Favor to the hospital, where they told her that Favor would need surgery on her larynx to remove a tumor. The tumor was likely benign in the sense that it wouldn’t spread to other parts of the body, but it was potentially fatal because if not removed, it could grow to close off Favor’s windpipe. Now, Isatu struggled even more to try to raise the money for Favor’s surgery. Her days were long, and they did not feel like her own—after getting the kids to school, she would try to sell in the market all day until it was time to come home and feed them whatever she could, whatever had not whipped away on sickness. “When they would come home,” she remembered, “sometimes there was nothing to eat. I would make them sugar and milk and curry, but with no rice because we didn’t have money for any rice, just milk and spices. I would pray for more food. I could see how hungry they were.” In stark contrast to Henry’s slow, decade-long decline with TB, Favor got sick quickly. Soon, she was eating little and struggling to speak. But they simply couldn’t afford the surgery. Isatu saved every leone she could, and accepted help from friends and family, but just as the family was closing in on the funds necessary to pay for the surgery, Favor died at home. She was seven. Henry was nine then, and he was utterly devastated. “I really miss her,” he later wrote. “We always made jokes together at home. I was not able to eat fast or eat much because of my sickness, and Favor would always try to feed me and get me to eat a lot. She used to tell on me to mom, but I could never get angry with her. We studied together. She was very good at mathematics. I really, really miss her.” —

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Ophelia Dahl, co-founder of Partners In Health, has described such crises as “acute-on-chronic.” Chronic impoverishment and failures of resource distribution fuel acute crises like the Ebola epidemic. Ebola is difficult to treat even in rich countries but was almost impossible in Sierra Leone in 2014.[*3] In response to the crisis, funding flooded

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diagnosed with tuberculosis. By this time, those extremely accurate and quick molecular tests were available in rich countries. Within a couple hours of providing a sputum sample, Henry could have known not only that he had tuberculosis, but which drugs would treat his particular infection. He could have known that his TB was resistant to two of the first-line RIPE drugs. He could have known that his TB was also resistant to a second-line drug. He could have immediately begun taking appropriate, widely available medication that would’ve cured him within eighteen months. But although these molecular tests had been around for a few years, they were expensive and unavailable to Henry, or indeed to most other patients who desperately needed them. Instead, Henry was diagnosed via chest X-ray, which showed advanced disease but gave no indication as to whether Henry’s particular infection was resistant to first-line antibiotics.

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After two years receiving treatment at Connaught Hospital, and after a time-consuming and laborious process of growing bacterial cultures from Henry’s sputum and testing different antibiotics against those cultures, Henry was finally determined to have multidrug-resistant tuberculosis. His doctors told him that he needed to be transferred to Lakka Hospital immediately, as it was the only MDR-TB treatment facility in Sierra Leone. He would need an entirely new medication regimen, including highly toxic injected antibiotics. On his last night at Connaught Hospital, Isatu lay with Henry in his hospital bed, and together they cried through the night. “Everyone knows,” one TB patient told me, “what Lakka means. Lakka is the place you go to die. You go in, and you do not come out.”

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Something like 90 percent of people die of disease, a phenomenon so entrenched in human life that we attribute most such deaths to “natural causes.” Many of us feel a certain relief when we learn that someone has died “naturally,” especially when the death occurs at what we think of as an appropriate age.

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When I was twenty-one, I worked for several months as a student chaplain at a children’s hospital. My supervisor was a Presbyterian pastor with the soulful eyes and calm voice her job demanded. On my first day of training, she said to me, “Death is natural. Children dying is natural. None of us actually wants to live in a natural world.” Treating disease—whether through herbs or magic or drugs—is unnatural. No other animals do it, at least not with anything approaching our sophistication. Hospitals are unnatural, as are novels and saxophones. None of us actually wants to live in a natural world. And yet we tell ourselves that some—and only some—lives end naturally (which really means “acceptably” or “well”). We construct ideas about what constitutes a good time and manner of death. I recently asked my ten-year-old daughter what constituted a natural death. “Well, you have to be old,” she said. “At least seventy-five. And you should probably be asleep.” But that’s not the only definition of a good or natural death. In Elizabethan England, any death that occurred immediately after a confessional prayer was good, because it sped the path to heaven. (You’ll recall, for instance, Hamlet’s hesitation to kill his praying uncle, lest old Claudius receive a free ticket to immortal glory.) To the Romans, a death in battle was a good death, at least for men. As Horace put it, “Dulce et decorum est pro patria mori.” (“It is sweet and noble to die for one’s homeland.”) By World War I, the poet Wilfred Owen turned that idea on its head, arguing that deaths from war were “obscene as cancer” and calling Horace’s line “that old lie.” Owen’s idea that cancer is obscene is also a construction, as is our current idea that for a life to be truly good, it must end in old age, and probably asleep. Our understandings of good illnesses, and good deaths, are perpetually shifting.

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But tuberculosis has long been known for sickening and killing those between twenty and forty-five, during the one period of life when you were supposed to be relatively insulated from illness and death. While TB is also common among children and elderly people, consumption was known as “the robber of youth” in the eighteenth and nineteenth centuries because of its ubiquity among young adults. How could we explain this disease that should not be, that was at once omnipresent and terrifyingly unnatural? I want to pause here to note a defining feature of humans, which is that we like to know why things happen, especially why really bad things happen. And if a reason is not immediately apparent, we will find one. I am reminded of a poem in Kurt Vonnegut’s novel Cat’s Cradle: Tiger got to hunt, Bird got to fly; Man got to sit and wonder, “Why, why, why?” Tiger got to sleep, Bird got to land; Man got to tell himself he understand. Vonnegut reminds us that we are both inclined toward curiosity and inclined toward arriving at some kind of comprehensible conclusion. “Nothing is more punitive…

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One eighteenth-century consumptive, a Mr. Rookes, died—according to his doctor—due to engaging in “six unnatural things.” These were overeating, drinking alcohol, constipation, overexercise,…

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And so, in the eighteenth and nineteenth centuries, Europeans came to romanticize consumption, to see the illness as beautiful and ennobling. It’s tempting to imagine this romanticization as the opposite of stigmatization—rather than discounting people as stigma does, romanticization lifts them up as paragons of beauty or intellect or some other virtue. But really, I see these as complementary strategies used to make the sick into an “other,” a group of people fundamentally distant and different from the rest of the social order. Mental illness, for example, is often romanticized as bringing on creative genius or other superpowers. Brilliant detectives like Sherlock Holmes and Adrian Monk are portrayed as having their powers of detection enhanced by their obsessive thought spirals even as they are also stigmatized for their eccentric and off-putting behavior. But as someone with OCD, I can report with some authority that both the stigma and the romance are unfair. People living with OCD are not generally good detectives—in my case at least, OCD does not make me good at noticing anything other than my own obsessive fears. But I find it similarly problematic to stigmatize my compulsive behaviors as revolting or odd. Imagining someone as more than human does much the same work as imagining them as less than human: Either way, the ill are treated as fundamentally other because the social order is frightened by what their frailty reveals about everyone else’s.

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would argue that the proper way to understand the utterly surreal romanticization of TB is that as the disease exploded in cities, stigma alone simply could not answer the “why, why, why” of consumption. Instead, people began to conclude that consumption was caused by a personality especially attuned to the fragile and fleeting loveliness of life. This made a kind of sense—in northern Europe, consumption was widely understood to be an inherited disease, passed on, like personality traits, from parents to children. And so it reasonably followed that consumption might be accompanied by other traits, like beauty and brilliance and sensitivity. This romanticization continued for a very long time: In the 1909 book Tuberculosis and the Creative Mind, Dr. Arthur Jacobson maintained that TB offered a “divine compensation” in exchange for illness: TB patients’ lives “are shortened, physically, but quickened psychically in a ratio inversely as the shortening.” Maybe the nineteenth-century Romantics would die early, but oh, the poems they would write. —

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As evidence for consumptive brilliance, scholars pointed to the fact that everyone from Stephen Crane to Frédéric Chopin died of consumption. (Less attention was paid to the fact that, in a world where over a quarter of all people were dying of the disease, it should not be particularly surprising that many artists and writers were dying of it.) One London magazine in 1825 wrote, “It is a striking fact that genius is often attended by quick decay and premature death.” Another linked phthisis to authors in particular, writing that an author’s “waywardness, peevishness, irascibility, misanthropy, [and] murky passions…are referable to their constitutional peculiarities and condition: In simple words, their mental eccentricities result from the derangement of bodily health.” This is precisely what I mean when I say that romanticization is not a kind or generous way of treating the ill. I am an author, and I for one am deeply offended by the notion that my waywardness, peevishness, irascibility, misanthropy, and murky passions are caused by a derangement of bodily health, even as I am impressed by a nineteenth-century magazine’s ability to absolutely nail my personality.

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have done.” As he grew more gravely ill, Keats wrote of the pain and inability to get adequate oxygen to his body: “We cannot be created for this sort of suffering.” He would wish for death, but then wish for life, because “death would destroy even those pains which are better than nothing.” He was twenty-four when he wrote those words, and had only five months to live.

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few months before his death, Keats wrote what amounted to a will. He had no money. “My estate real and personal consists in the hopes of the sale of books publish’d or unpublish’d,” he wrote, and then atop the note, he scrawled and underlined a single line of iambic pentameter: “My chest of books divide among my friends.”

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In Ode to a Nightingale, Keats wrote, “Youth grows pale, and spectre-thin, and dies.” It proved a prophecy. When Keats’s body was autopsied a couple of days after his death, the doctor wrote, “The lungs were completely gone.” This was—and is—the truth of death by tuberculosis. The afflicted often drown as blood and pus fills their lungs. They die starved of oxygen, desperate for air. One physician and anthropologist described a typical tuberculosis death: “He is seized with a sharp agonizing pain in the chest…. The facial expression is that of profound agony, the eyes prominent, the lips livid, and the forehead clammy.”

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contemporaries, but like Lanier he felt the creative urge right up until his death. In fact, he wrote a few haiku just hours before he passed away in 1902, beginning with one that translates to: the gourd flowers bloom, but look—here lies a phlegm-stuffed Buddha! This phlegm-stuffed Buddha wrote extensively about the experience of spending one’s life in bed, slowly drowning. Pain from coughing the long night’s lamp flame small as a pea Across many of his eighteen thousand poems, Shiki elliptically and brilliantly captures the pain and the isolation of illness. One series of haiku begins: It is snowing! I see it through a hole In the paper door The poet can celebrate snow, even if he can only see it through a hole in the door. But he feels himself more observer than participant: All I can think of Is that I am lying In a house in the snow.

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The consumptive poet cannot be in the snow, only lying in a house in the snow. For me, anyway, this way of understanding chronic illness—as being of the world but also not permitted by circumstances or the social order to be entirely with the world—is a sentiment applied from within rather than from without, a way of thinking about the limits and opportunities of disability that acknowledges difference and loss without othering or romanticizing. It’s not trustful or loving or soothing or mild. It’s true.

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came across a comment on a video about tuberculosis recently in which a woman named Jil wrote, “As a fat person, I used to wish for a wasting disease like tuberculosis. It’s…it’s messed up.” Dozens of people replied to that comment with their own experiences of being complimented for weight loss associated with life-threatening illness, or their fantasies of tapeworms and other illnesses that would shrink their bodies. The idea of becoming sick in order to look healthy or beautiful speaks to how profoundly consumptive beauty ideals still shape the world we share. But as pervasive as these beauty standards are, we must remember that they aren’t universal. In Sierra Leone, being small and thin like Henry brought to mind not beauty but stunting and unwellness.[*2] In fact, Henry fit all the ideals of the consumptive—the wide eyes, the visible cheekbones, and the creative temperament. He wrote beautiful poems, and his interest in writing blossomed during his illness. He was preternaturally brilliant and deeply sensitive, expressing deep emotions of yearning and love in his memoir and poetry. But of course he did not live in the nineteenth century, and he also wasn’t white.

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As the writer George Sand tried to find a place for consumptive Frédéric Chopin to stay in Spain, Sand wrote a friend, “Phthisis is scarce in these climates and is regarded as contagious.” But of course phthisis was scarce in those climates precisely because it was regarded as contagious. “We went to take residence in the disaffected monastery of Valdemosa,” Sand goes on, “…but could not secure any servants, as no one wants to work for a phthisie…. We begged of our acquaintances that they give us some help…a carriage to take us to Palma from where we wanted to take a ship back home. But even this was refused us, although our friends all had carriages and wealth.”

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Toward the end of the nineteenth century, consumption began to decline in northern Europe and the U.S. as well. In the process, romanticization of the disease was abandoned. The decline happened in part because, as quality of life rose for the wealthy and the emerging middle class, they were less likely to live or work in crowded spaces where consumption can flourish. Increasingly, it was the poor who seemed to get sick, and so people began to turn their eyes away from “the languorous, fainting young women and their romantic lovers,” wrote René and Jean Dubos. “They noticed instead the miserable humanity living in the dreary tenements born of the Industrial Revolution. In the ‘tentacular cities’ they saw hosts of men, women and children, pale too, often cold and starving, working long hours in dark and crowded shops, breathing smoke and coal dust. Tuberculosis was there, breeding suffering and misery without romance.”

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the other like a sequence of falling dominoes. But most human experiences are processes, not events. Divorce may be an event, but it almost always results from a lengthy process—and the same could be said for birth, or battle, or infection. Similarly, much of what some imagine as dichotomous turns out to be spectral, from neurodivergence to sexuality, and much of what appears to be the work of individuals turns out to be the work of broad collaborations. We love a narrative of the great individual whose life is shot through with major events and who turns out to be either a villain or a hero, but the world is inherently more complex than the narratives we impose upon it, just as the reality of experience is inherently more complex than the language we use to describe that reality. I think that’s all worth remembering when it comes to Robert Koch. Koch made important discoveries, but they happened amid a host of other insights related to microorganisms, because breakthroughs in understanding were being made by a wide variety of people who could share findings efficiently through medical journals. (In fact, fifteen years before Koch’s discovery, Edwin Klebs proved a TB chain of transmission, but his research was minimized because it wasn’t shared widely enough and because he wasn’t able to isolate and identify the infectious agent itself.)

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When I visit with TB survivors, almost all of them cite stigma as the greatest challenge. In much of the world, it’s common for children diagnosed with TB to be dropped off at a hospital or treatment center and then abandoned by their families. A Sierra Leonean man who’d survived a yearslong bout with drug-resistant tuberculosis told me he was afraid to visit Freetown because he did not want to run into anyone from his vast extended family, all of whom had shunned him after he got sick. He would message friends and family on WhatsApp only to be told by them that he was cursed and they wanted nothing to do with him. A young woman who was abandoned by her family told me, “To them I am not a person.” There were times that she wished she had died of TB rather than being cured of it, because the ongoing stigma was so profound. When people found out she’d survived TB, they would stop showing up for visits. The neighborhood knew, and everyone treated her like she was different. Some in her community said she got TB because her family had been punished by God. Others said it happened because they were poor, because their roof leaked, or because her mother was involved in dark magic. It may be easy to dismiss this kind of superstition, but we all unjustly stigmatize others. We all engage in the punitive act of giving a disease a meaning. —

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imagined that having minimized deaths from lions, bears, and other predators that we had become “civilized,” a species dramatically above all others, the great power in a world of lesser life. As Conan Doyle would later write of M. tuberculosis, “What an infernal microbe it is!…How absurd that we who can kill the tiger should be defied by this venomous little atom.”

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should acknowledge, I guess, that one reason I’m interested in TB is that I have obsessive-compulsive disorder, and my particular obsessive worries tend to circle around microbes and illness. Before the germ theory of disease, we did not know that around half the cells in my body do not, in fact, belong to my body—they are bacteria and other microscopic organisms colonizing me. And to one degree or another, these microorganisms can also control the body—shaping the body’s contours by making it gain or lose weight, sickening the body, killing the body. There’s even emerging evidence that one’s microbiome may have a relationship with thought itself through the gut-brain information axis, meaning that at least some of my thoughts may belong not to me, but to the microorganisms in my digestive tract. Research indicates that certain gut microbiomes are associated with major depression and anxiety disorders; in fact, it’s possible that my particular microbiome is at least partly responsible for my OCD, meaning that the microbes are the reason I’m so deeply afraid of microbes.[*]

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At many institutions, crying in public was strictly forbidden, because it would harm morale and thus one’s overall chance for a cure. Everything about life in Gale’s sanatorium was oriented around control of the patient—patients were told when (or whether) they could read and write, how often (or whether) they could stand up, how often (or whether) they could receive visitors, and on and on. Patients spent many hours every day curing, which meant sitting or lying absolutely still, not straining even to speak or laugh. For young Gale, visitors were very rare, and she was frequently chastised for her bad attitude and behavior. Whenever she wet the bed or cried audibly, Gale was punished. “Punishment consisted of being isolated,” she wrote. “No one could talk to me; I could not play with any of my toys; a screen would be placed around my bed so I could not see the rest of the children.” This happened when she was just four years old. She found salvation in her best friend Angie, a child of Greek immigrants. They loved being friends because it afforded them two Easter celebrations—Gale’s Roman Catholic Easter and Angie’s Greek Orthodox one. While Gale often got in trouble for talking or squirming in her bed when she was supposed to be quietly and calmly “curing,” Angie was the perfect patient. “She would read her book of prayers every day in the early morning and evening. She would also tell me that she said prayers for me, to help me stop getting in trouble,” Gale would remember. Angie was intent upon recovering and leaving the hospital partly so that she could be reunited with her sister Pauline, who wrote her frequent letters, and her father, who faithfully delivered those letters during visits each week.

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One day, young Gale overheard a terrible secret about her best friend Angie: Angie’s sister Pauline, who wrote her weekly, had in fact already died of TB. “But her father didn’t want her to know,” Gale recalled, because it might cause the kind of emotional shock that was deemed dangerous to the TB patient. So to encourage the daughter he still had, this father wrote letters that mimicked the handwriting and style of the daughter he’d lost. Having been told that patients could not be exposed to bad news without risking their health, Gale never told Angie that her sister had died. But it didn’t matter. “I saw them wheeling a stretcher with a body on it down to the morgue. I knew right away it was my best friend Angie.” Gale was eight years old. — In all the heartbreaks of reading about tuberculosis, perhaps none has stayed with me quite like the image of a father trying to write in his dead daughter’s handwriting to his living daughter, in the hopes that she wouldn’t be crushed by the truth. In Angie’s father we see the humanity of people whose lives are torn asunder by TB—a humanity that is too often denied or minimized through stigma or romanticization. He was just a father trying to do right by his kids—and then, when he couldn’t, trying to do right by his kid.

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Angie and Gale’s experience also reminds us of another facet of sanatorium life: Control. The patient—a word that takes on new layers of meaning when one considers that many TB survivors lived in sanatoria for years or decades—had to be coddled, but most of all the patient had to be controlled, with their movements and choices and access to information severely limited. In the U.S., we still often use the phrase “TB control” in public health departments, whereas for illnesses like cancer we’re more likely to use the phrase “cancer care.” This “control over care” dynamic, as the physician and anthropologist Paul Farmer termed it, is seen with many infectious diseases.[*3]

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better and didn’t want to put up with the side effects anymore. I once visited with a young man at Lakka who struggled to take his medication. He was in his early twenties and wore a dirty T-shirt, jean shorts, and sandals. He suffered from severe depression—his voice barely rose to a whisper and he’d lost both many friends and his romantic partner when he was diagnosed with TB. He told me he felt like he could never return to the world where he had lived; now, he was, as the interpreter put it, “disgraced.” A dirty mask hung limply below his nose. His huge eyes were sunken into his face. He answered my questions with a single word whenever possible: Do you still see your friends? No. I would imagine that’s really painful. Yes. And to be cured of TB, this man had to take medicine every day for months—medicine that made him feel sick, that can make you vomit and render your vision blurry and give you jaundice. You have to take these medications for months even after you feel better, and you have to be watched while taking them, like you are a prisoner. Of course, patient noncompliance is not only an issue in the world of TB. I have often struggled to take the medication that keeps me alive. Every day, I swallow two pills to treat my OCD and depression, and over the last decade, I’ve stopped taking them several times, even though I understand intellectually that by doing so, I am putting my life at risk. And so as I spoke to this young man, I pulled my own bottle of pills out of my backpack and explained to him that I simply don’t understand why it is so hard for me to take this medicine. My doctor makes it easy. There is no DOTS for me. I do not have to stay at a hospital or walk to a clinic to receive treatment; I can pick up my medicine at the neighborhood pharmacy once a month. And yet as I told this young man, it is still very difficult for me to take my medicine. Why? The question brought him out a little. He wondered if maybe I did not like the side effects. It is true that I don’t like them. I offered that maybe stigma has something to do with it—I feel like I am dependent upon the drugs, like I am not self-sufficient in the way that I am supposed to be. He encouraged me to think of my family, and my future, when taking the medicine. I encouraged him to do the same. It’s hard for some people, myself included, to take medicine. I don’t fully know why. But I can’t very well blame others for not finishing their antibiotics when I know how often I’ve failed to finish my own. —

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And so, as historian Christian McMillen has written, “The terms ‘compliance’ and ‘adherence’ or whatever other term might be deployed are all too confining. What does a national TB program’s inability to keep track of patients on treatment have, necessarily, to do with patient compliance or adherence? When a program loses a large percentage of its patients, is this a compliance problem or a surveillance problem? Is it a patient’s fault when he or she cannot afford the food necessary to ward off the hunger brought on by the drugs?” More broadly, is it a patient’s fault if they are too disabled by depression and isolation to follow through on treatment? Is it a patient’s fault if they or their children become so hungry that they feel obliged to sell their medication for food? Is it a patient’s fault if their living conditions, or concomitant diagnoses, or drug use disorder, or unmanaged side effects, or societal stigma result in them abandoning treatment? Why must we treat what are obviously systemic problems as failures of individual morality? Many patients have described the experience of receiving their drugs as humiliating—they may be handed their medicine while being told that this only happened because they were unclean or poor or otherwise lesser.[*] This is often not an environment patients are excited to return to—and yet somehow we always seem to blame the patient for noncompliance, rather than blaming the structures of the social order that make compliance more difficult. The term “compliance” itself reveals what all of this is really about, deep down, which is systems of medical resource distribution exerting the same kind of control over TB patients in the twenty-first century that sanatoria exerted over TB patients in the twentieth.

Ref. B410-K

Antibiotic resistance is a complex and many-tentacled beast—countless factors from overprescription to antibiotic use in livestock have contributed to it. But in considering the rise of multidrug-resistant tuberculosis in particular, it’s important to note that we are in this mess first and foremost because we stopped trying to develop new treatments for tuberculosis. The real issue is not that TB is uncommonly good at selecting for resistance. The real problem is that in the forty-six years between 1966 and 2012, we developed no new drugs to treat tuberculosis. This strikes me as one of the stranger choices in human history. Humans, a species that simply can never have enough, somehow decided that five or six anti-TB drugs would be plenty. Why? New classes of drugs to treat bacterial infections are not easy to find, but we know they are possible to find. In the last couple decades as economic incentives have shifted, we’ve been able to develop powerful new medications to treat TB, including bedaquiline and delamanid. But there is

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Shreya died in 2018, six years after being diagnosed with tuberculosis. Dr. Furin would later tell me that Shreya was rereading The Fault in Our Stars in the last days of her life, relating to the breathlessness of the novel’s narrator, who lives with cancer that has metastasized to her lungs. When you write a novel, you are alone in it. I wrote that book alone, sitting in airports and coffee shops and lying in bed. But when writing, there is always for me a hope that one day I will not be alone—not in this work and not in this world. It is a bit like that old children’s pool game Marco Polo, where one person closes their eyes and swims around the pool trying to tag someone else. “Marco,” the person with eyes closed says, and the other pool-goers have to answer, “Polo.” “Marco, Marco, Marco,” cries one kid, and the others reply: “Polo. Polo. Polo.” Writing is like that for me, like I’m typing “Marco, Marco, Marco” for years, and then finally the work is finished and someone reads it and says, “Polo.” And so here is Shreya, saying “Polo” to me from across the great divide. But she is also saying “Marco.” She is also telling me to hear her voice, and answer her call. People often ask me why I’m obsessed with tuberculosis. I’m a novelist, not a historian of medicine. TB is rare where I live. It doesn’t affect me. And that’s all true. But I hear Shreya, and Henry, and so many others calling to me: Marco. Marco. Marco.

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It’s worth lingering for a moment on the value of early and accurate diagnosis because Henry’s life might have been so different. The rapid molecular test that was not available to Henry, known as GeneXpert, is a wonder of technology manufactured by the Danaher subsidiary Cepheid. Using similar tech to PCR tests for Covid or HIV, one GeneXpert cartridge can identify not only whether someone has TB, but whether their particular infection will be resistant to certain antibiotics. A second cartridge can test for sensitivity to a broader range of antibiotics, so with these two tests, physicians can know within a few hours of encountering a patient whether the RIPE regimen will cure their tuberculosis. This would not have been some panacea for Henry, of course, because he still would have had a very difficult time accessing the second- and third-line antibiotics he needed. But his family would have at least known what he needed.

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