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It is impossible to make sense of the more than 300,000 Americans who have died of COVID-19. We still have to make the attempt.

By

Scott Lucas

Posted on December 22, 2020, at 1:23 p.m. ET

When the United States’s first known COVID-19 victim died on Feb. 6, the Santa Clara County Health Department said only this: The person had traveled, sought medical care, and died at home. The disease was so new that it did not yet even have a name.

The 57-year old Latinx woman, who died of a massive heart attack brought on by the virus, lived in San Jose with her husband and daughter. Born on Oct. 8, 1962, she grew up in Mountain View, the affluent Silicon Valley city in which today Google has its headquarters.

When Dowd was just a kid, a friend’s mother would call her “chile de bolita” — little ball of spice — energy she carried into adulthood, volunteering to paint houses for Habitat for Humanity, to sort food for the Second Harvest Food Bank, and to clean up a wildlife refuge in Fremont. Dowd graduated from San Jose State University in 1986, and at the time of her death worked as an auditor for the semiconductor company Lam Research, a job that took her around the world — and into the path of the virus.

“There were no symptoms, nothing,” her grieving father told the San Francisco Chronicle, days after her standing-room-only funeral at St. Joseph Catholic Church in Mountain View. “She was a good daughter. I was lucky.”

Throughout the spring and summer, the details of Dowd’s life joined those of first dozens, then hundreds, then, unimaginably, hundreds of thousands of others lost to COVID-19, filling newspapers and websites and local TV news as journalists worked the raw material of death into finished product. BuzzFeed News wrote about Yevgeniya Belaya, the matriarch of a family who had emigrated from Uzbekistan to New York, Jameela Dirrean-Emoni Barber, an honors student in Texas, Nashom Wooden, a drag queen superstar, and so many more people. Each story was specific, important, and true.

At first, the whole country tracked the pandemic through individual losses — the graduation that wouldn’t be attended, the wedding that had to be postponed, the restaurant that closed around the corner, or the death of someone we knew. Did you hear about the mystery case in California? The man who died in Washington state? The outbreak on the Grand Princess cruise ship? Can you believe Tom Hanks got sick?

And then, imperceptibly at first, the nation’s focus shifted. We stopped paying so much attention to individuals, and started paying attention to trends. Above a certain rate of frames per second, the human eye sets still photos into motion — individuals blur into aggregates. Something similar happens as thousands of deaths become hundreds of thousands. Particular people blend into indistinguishable masses. The stories of Patricia Dowd, Yevgeniya Belaya, Jameela Dirrean-Emoni Barber, and Nashom Wooden lost their singularity.

Today, I can track the data in these charts. I can find out what it would look like if all the deaths were in one neighborhood. I can zoom in on transmission clusters in Singapore, or travel restrictions around the world. Nextstrain lets me see the genomic epidemiology, watching the thing mutate in real time. Vox can explain it to me in these essential 18 maps and charts. The Heritage Foundation even offers an interactive map showing “the continuing hypocrisy of local, state, and federal officials who violate their own coronavirus mandates, policies, or other restrictions.” I understand each of these constructs (well, not the genomic epidemiology one) pretty well, but in the aggregate, they communicate nothing to me. They tell only one thing: An unimaginably large number of people are sick or dead. As the cognitive scientist Douglas Hofstadter once wrote, there are numbers so large after which “is virtually impossible to keep on being more amazed.”

The pandemic is a crisis along every dimension: medical, economic, political, and technical. It’s been a challenge for everyone to find the right language to talk about. Whether it’s medical authorities using science, religious leaders reaching for spiritual resonance, or conspiracy theorists spinning webs of delusion, we have all groped to make sense of the disruption and the loss. But it eludes us, because it’s also a crisis of imagination, something too vast and confounding to keep in our heads all at once. That’s why the scholars Francis Beer and Robert Hariman called the virus “not just an epidemiological disruption but also an epistemological crisis” — a break in our ability to know how we know what we know.

That’s why BuzzFeed News is documenting these lives. You can see all our coverage here, and there’s a lot more coming. We tell these individual stories to remember the dead. But also to hold the living accountable.

One of photography’s first uses was to memorialize our dead. As Nancy West wrote in the Atlantic, “Historians estimate that during the 1840s, the medium’s first decade, as cholera swept through Britain and America, photographers recorded deaths and marriages by a ratio of three to one.” In 1894, a plague broke out, just as newspapers gained the technology to print photographs. Photojournalists rushed around the world to document what the disease did to the sick, in the process playing “a major part in transforming the idea of the ‘pandemic’ from an arcane word in medical dictionaries to a word used and a condition experienced in everyday life.” In the middle of the century, photography was part of the official machinery of the American “crusade” against polio.

During the height of the AIDS crisis, when disease was associated by many with shame and scorn, images that captured the humanity of patients took on a new function: protest. From 1987 to 1989, the photographer Nicholas Nixon took five portraits of George Gannett as he died of AIDS. In this photo from the series, Gannett lies in a hospital bed at home, his face in the sunlight from the window. It is obvious that his life is drawing to a close — and a country that was determined to look away from AIDS was being forced to look at it, and to think about the very real, and very human, people whom it was killing. In 1990, Life magazine published a photograph by Therese Frare of a grieving family huddled around the deathbed of David Kirby, a 32-year old man with AIDS. Kirby was surrounded by family, his father’s face locked in grief. To violate that intimacy might seem monstrous, but his family invited it. “We just felt it was time that people saw the truth about AIDS,” his mother said — that anyone could die from it, the terrible price that their survivors would pay, and the void that their deaths would leave behind.

To see these photos is to see that they weren’t abstractions. It is to see raw human pain, inflicted not on a category that some people falsely thought deserved it — gay men, drug addicts, sinners, the unlucky, or the unwell — but on fragile mortals.

Almost a year since the beginning of the outbreak in China, it’s startling to realize how few images of the disease we have in our collective imagination. We don’t have a common visual of the blue lips and face, the inability to stay awake, the racing heart, the gasping for breath, the often-lethal cytokine storm, as the body mounts a final suicide stand against invading microorganisms.

One powerful but not obvious reason is the Health Insurance Portability and Accountability Act, or HIPAA, the law passed in 1996 that protects patients’ medical information. It presents formidable obstacles to photographers looking to take pictures inside hospitals. But if photographers can’t get in, then images of the sickest COVID-19 patients can’t get out. “It’s been really, really difficult to break through the red tape to tell these stories visually,” says photographer Ryan Christopher Jones, who took a series of photos for the New York Times of patients receiving last rites in Boston hospitals. To get those photos, Jones had to clear three layers of approval — from the Archdiocese of Boston, the hospitals themselves, and the families of the dying.

“We are averse to visualizing death. It is easier to look at the numbers,” says Jones. “We are left as viewers, as a society, to the imagination of death, rather than its reality.”

Take a look at the articles that news outlets publish about the coronavirus. See how many of them include photographs of real human beings receiving medical care. Many of them don’t. They can’t. As a consequence, says Jones, “we are left as viewers, as a society, to the imagination of death, rather than its reality.”

I have been editing stories on the coronavirus since its emergence in China, and not before talking to Jones a few days ago did I find out that in some patients it causes skin lesions. Whatever experts and patients may have learned, Jones pointed out, most of us “don’t know what COVID does to the body.”

In place of those images, those individual human beings, what we have instead is numbers. And they are not equivalent.

Seventy-seven million cases across the world and 1.5 million deaths. In the United States, 14.7 million cases and 282,000 deaths. In California, where I live, 1.9 million cases and 22,000 deaths. Data is an anesthetic. As the lawyer Verena Ehrnberger wrote in 2015, “we suffer from data numbness. Vast amounts of data just have no meaning to us.”

In April, fewer than 100 people in the United States were sick. By May, there were over 1 million. In August, we crossed 5 million confirmed cases. It’s impossible to hold 5 million individual people in your head simultaneously. So instead, we hold a single number. And as the Princeton University cognitive psychologist Elke Weber told National Geographic in September, “The whole country is depressed. If you’re already stressed out, the 200,000 statistic becomes just another thing.”

Alicia Mikolaycik Kurtz, an emergency room doctor in Santa Maria, California, and the host of a podcast about the frontlines of medicine, shares that fatigue, even as she keeps working. “No one wants to tell the stories about COVID,” she says, because no one wants to hear them. “There’s no appetite for that anymore.”

She compares the pandemic to school shootings. After the Sandy Hook massacre, President Barack Obama broke down in tears at a White House press conference. We learned the names of the children, we knew the faces of their grieving parents. The shootings have continued, but the national outrage has not. “We just got sick of it,” says Kurtz. “I think that’s what happened with COVID. It’s not new. It’s not scary. You may not even believe it’s real or as significant as people say it is.”

And so we have turned to metaphors. The coronavirus deaths have been like if the Japanese assault on the US Navy base at Pearl Harbor (2,403 deaths) were to take place every day. Or a 9/11 attack every day (2,977 deaths). It’s roughly half the yearly amount of people in the US who die from heart disease (655,381) or cancer (599,274). It’s like you took X fully loaded planes and crashed them into Y building every Z hours. Train A leaves the station at time T loaded with bodies. Graveyard G holds B bodies.

A historian recently estimated that 750,000 people died in the American Civil War. Does that mean that, at present, the coronavirus is about one-third as tragic as the Civil War? Or, that every week of the pandemic is seven times as tragic as 9/11 or Pearl Harbor? Of course not. But what do they mean, then? As I try to comprehend the numbers, I finally reach the mathematical sublime — the horror that lurks beyond calculation, beyond understanding. There is no limit to the power of our mathematical reason. One more number can always be added. But there’s a limit to what we can meaningfully comprehend. There’s a moment past which any more deaths is quite literally an “outrage on the imagination.”

Well. Tough, as they say, shit. The deaths are going to keep coming, whether I can imagine them or not.

Rita Charon is a professor of medicine at Columbia University. She has an MD and a PhD in English, which led her to synthesize the two into a method she calls narrative medicine. It’s a way of training clinicians to listen to their patients as a better means to treat them. “As practice speeds up, physicians need all the more powerful methods for achieving empathic and effective therapeutic relationships,” she wrote in one of the field’s most important papers. “Narrative skills can provide such methods to help physicians join with their patients, honoring all they tell them.”

In other words, there may be few people who have more expertise at thinking about the intersection of sick people’s lives, the stories that are told about them, and the numbers that represent them. And so, bewildered, I call her.

“It is an undying tension,” she says, between numbers and stories. In contemporary society, medicine certainly, we tend to think of statistics as more verifiably, objectively true than, say, biography. They “take on an aura of sanctity because they are neutral or verifiable, falsifiable or testable.”

But she doesn’t see statistics and human-centered stories as necessarily in opposition, Numbers, she says, are a form of narrative too. Numbers can tell a story about COVID, just as photographs can make an argument about AIDS.

What she’s telling me, as we talk, is that it doesn’t have to be all one thing or the other. I had thought that if we were telling stories with numbers, it meant that we weren’t telling stories that had people at the center. But why? We can do both — and we should. “In narrative medicine,” Charon says, “we train clinicians to not lose the singular focus on the individual. There is a vertiginousness when you shift back and forth. Your task is both to take advantage of the reductive, positivist, quantifiable things we think we know and to rack the focus down to this 72-year-old woman whose only daughter just died.”

There aren’t two worlds, after all, a world of people and a world of numbers. There’s a single world that we talk about in different ways: “There are some purposes for which some stories are better suited than others. We have to learn to shift between them.”

Charon recently spoke to a colleague trained in narrative medicine who teaches a first-year course to medical students. In that class, the students dissect cadavers. These are not representations of human beings. They are the actual bodies of humans, donated to science. So while the doctors in training must learn to view them objectively, they must not disassociate their use from their origin.

So Charon and her colleague found a former journalist who used to write the obituaries for the Boston Globe to lead them in a different kind of project. The students are asked to write the obituaries of the people whose bodies they will dissect. “They call the surviving spouse, several sources, and write a story of the life,” says Charon. They send those stories to the families and read them at a memorial service together. The students, says Charon, say that this project “teaches them more about being a doctor than anything else.”

Scott Lucas is a technology and business editor for BuzzFeed News and is based in San Francisco.

Source: https://www.buzzfeed.com/scottlucas/americas-covid-19-death-toll

News – America’s COVID-19 Death Toll Is Devastating. But Numbers Alone Don’t Capture The Loss.