Everything Is Tuberculosis: The History and Persistence of Our Deadliest Infection

by John Green

In the Global North, we still sometimes hear about the benefits of colonialism, how it brought roads and hospitals and schools to colonized regions, but this perspective is not supported by strong evidence.

In general, colonial infrastructure was not built to strengthen communities; it was built to deplete them.

Our men at their departure set the town on fire, and it was burnt (for the most part of it) in a quarter of an hour, their houses being covered with reed and straw.

this is pure evil

It’s possible that young Kaw-we-li lost the memory of whatever name his parents had given him, knowing himself only by the location of his kidnapping.

“Nothing is more punitive than to give a disease a meaning,” Susan Sontag famously wrote, and yet we go on giving disease meanings anyway. These illness narratives are often not just a strategy for conceptualizing the pain of others, but also a way of reassuring ourselves that we’ll never feel that pain.

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.

To inspire is to breathe in; to expire is to breathe all the way out.

“the disease’s wasting effect on the body is portrayed as enhancing feminine beauty”

oh misogyny ❤️

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.

Small, waifish bodies can now seem so associated with beauty (and health!) that it can feel innate or instinctual to find smaller bodies more attractive than larger ones. But that’s not inherent to humanity (and indeed was not a significant bias of humanity until relatively recently).

funny ass adjective

“consumptive chic,”

??????? the blueprint for heroin chic

some women applied belladonna to their eyelids, albeit in minimally toxic amounts, to dilate their pupils so they’d have that wide-eyed consumptive look.[*1]

most white doctors believed that phthisis—as it was inherited by those with great sensitivity and intelligence—could only affect white people,

“In the United States, the prevailing wisdom was that African Americans contracted a different disease. The disinclination even to give it a name speaks volumes with regard to the prevailing racial hierarchy and the lack of access to medical care by people of color.”

Acknowledging that consumption was common among enslaved, colonized, and marginalized people would have undermined not just a theory of disease, but also the project of colonialism itself.

“TB’s parallel journey with capital,”

But then as now, tuberculosis does not travel primarily through paths forged by race, except insofar as human power structures force it to.

Some white doctors even argued that the “susceptibility” was caused by the end of slavery in the U.S. In his famous 1896 essay “The Effects of Emancipation upon the Mental and Physical Health of the Negro of the South,” Dr. J. F. Miller argued (falsely) that tuberculosis was a “rare” disease “among the negroes of the South prior to emancipation.”

just absolute insanity

“If it is terrifying to think that life may be at the mercy of the multiplication of those infinitesimally small creatures, it is also consoling to hope that Science will not always remain powerless before such enemies.”

How absurd that we who can kill the tiger should be defied by this venomous little atom.”

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.

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.

Why must we treat what are obviously systemic problems as failures of individual morality?

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.

But will we see Henry as a human individual who wrote lovely paragraphs and poems, who encouraged not just fellow TB survivors, but also his caregivers? Will we see him as a valuable person interwoven into the one human story? Or will we see him as a noncompliant five-year-old?

But there is limited profit motive.[*2]

its always capitalism’s fault

When markets tell companies it’s more valuable to develop drugs that lengthen eyelashes than to develop drugs that treat malaria or tuberculosis, something is clearly wrong with the incentive structure.

Although most of the money that went into developing bedaquiline came from the public (much of it from the U.S. government), the drug was owned and patented by Johnson & Johnson, which had a monopoly and therefore absolute control over the price.

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.

But of course people are not just their economic productivity. We do not exist primarily to be plugged into cost-benefit analyses. We are here to love and be loved, to understand and be understood.

“Yes, I know, it’s just one patient. There are so many patients, and Henry is just one. Why should we move mountains to save one patient? Because he is one person. A person, you understand? And anyway, what if he can be the first of many?”

I would never accept a world where Hank might be told, “I’m sorry, but while your cancer has a 92 percent cure rate when treated properly, there just aren’t adequate resources in the world to make that treatment available to you.” That world would be so obviously and unacceptably unjust. So how can I live in a world where Henry and his family are told that? How can I accept a world where over a million people will die this year for want of a cure that has existed for nearly a century?

In Lesotho, for example, overall human life expectancy dropped by about ten years between 1985 and 2002.

“If we had [HIV medicines for Africa] today, we could not distribute them. We could not administer the program because we do not have the doctors, we do not have the roads…[Africans] do not know what watches and clocks are.

this is an insane level of racism for the big year 2001 my year of Birth wow

It was impossibly expensive to treat HIV in poor communities…until drug companies were pressured to lower prices by 95 percent, at which point it suddenly became affordable.

A child born in Sierra Leone is over one hundred times as likely to die of tuberculosis than a child born in the United States. This difference, as Dr. Joia Mukherjee writes, is “not caused by genetics, biology, or culture. Health inequities are caused by poverty, racism, lack of medical care, and other social forces.”

Henry embodied spes phthisica—he was sensitive and poetic. And yet he wasn’t treated as a luminous, beautiful poet condemned to die by the same wonderful forces that gave him his creative powers.

We can do and be so much for each other—but only when we see one another in our full humanity, not as statistics or problems, but as people who deserve to be alive in the world.

I think, “What if I had used my megaphone better back then?” I think, “Am I using it correctly now?” I think about the caregivers and patients who don’t have megaphones, who often feel like they’re screaming into the void.

You live if you’re rich. And if you’re not, then you hope to get lucky.