The Final Pandemic Betrayal
https://www.theatlantic.com/health/archive/2022/04/us-1-million-covid-death-rate-grief/629537/
Millions of people are still mourning loved ones lost to COVID, their grief intensified, prolonged, and even denied by the politics of the pandemic.
By Ed Yong
Photo Illustrations by Aaron Turner
a woman's portrait peeling off a white wall
Viola Faria loved “Elvis, violets, any kind of colorful birds,” her daughter Christina said. “Motown music was a constant in her life and always turned her moods around.”
April 13, 2022
Lucy Esparza-Casarez thinks she caught the coronavirus while working the polls during California’s 2020 primary election, before bringing it home to her husband, David, her sister-in-law Yolanda, and her mother-in-law, Balvina. Though Lucy herself developed what she calls “the worst flu times 100,” David fared worse. Lucy took him to the hospital on March 20, the last time she saw him in the flesh. He died on April 3, nine days before their wedding anniversary, at the age of 69. Lucy said goodbye over Skype. During that time, Yolanda fell ill too; after two months in the hospital, she died on June 1. Balvina, meanwhile, recovered from her bout with COVID-19, but, distraught after losing two children in as many months, she died on June 16. Lucy found herself alone in her home for the first time in 23 years. Because the hospital never returned David’s belongings, she didn’t even have his wedding ring.
Lucy had coped with the losses of her father, sister, and mother in the two decades before the pandemic. But she told me that what she feels now is fundamentally different. She never got to comfort David before he died, never got to mourn him in the company of friends, and never escaped the constant reminders of the disease that killed him. Every news story twisted the knife. Every surge salted the wound. Two years later, she is still inundated by her grief. “And now people are saying we can get back to normal,” she told me. “What’s normal?”
The number of people who have died of COVID-19 in the United States has always been undercounted because such counts rely on often-inaccurate death certificates. But the total, as the CDC and other official sources suggest, will soon surpass 1 million. That number—the sum of a million individual tragedies—is almost too large to grasp, and only a few professions have borne visceral witness to the pandemic’s immense scale. Alanna Badgley has been an EMT since 2010, “and the number of people I’ve pronounced dead in the last two years has eclipsed that of the first 10,” she told me. Hari Close, a funeral director in Baltimore, told me that he cared for families who “were burying three or four people weeks apart.” Maureen O’Donnell, an obituary writer at the Chicago Sun-Times, told me that she usually writes “about people who had a beautiful arc to their life,” but during the pandemic, she has found herself writing about lives that were “cut short, like trees being cut down.” On average, each person who has died of COVID has done so roughly a decade before their time.
In just two years, COVID has become the third most common cause of death in the U.S., which means that it is also the third leading cause of grief in the U.S. Each American who has died of COVID has left an average of nine close relatives bereaved, creating a community of grievers larger than the population of all but 11 states. Under normal circumstances, 10 percent of bereaved people would be expected to develop prolonged grief, which is unusually intense, incapacitating, and persistent. But for COVID grievers, that proportion may be even higher, because the pandemic has ticked off many risk factors.
Deaths from COVID have been unexpected, untimely, particularly painful, and, in many cases, preventable. The pandemic has replaced community with isolation, empathy with judgment, and opportunities for healing with relentless triggers. Some of these features accompany other causes of death, but COVID has woven them together and inflicted them at scale. In 1 million instants, the disease has torn wounds in 9 million worlds, while creating the perfect conditions for those wounds to fester. It has opened up private grief to public scrutiny, all while depriving grievers of the collective support they need to recover. The U.S. seems intent on brushing aside its losses in its desire to move past the crisis. But the grief of millions of people is not going away. “There’s no end to the grief,” Lucy Esparza-Casarez told me. “It changes. It morphs into something different. But it’s ongoing.”
By upending the entire world, COVID could have created a shared experience that countered the loneliness of grief. But most of the people I’ve been speaking with feel profoundly lonely—detached from society, from their support network, and especially from their loved ones at the moment of their death.
Sabila Khan’s dad, Shafqat, had an aggressive form of Parkinson’s disease, and she knew their time together was limited. “But every time I imagined him dying, I imagined us being with him,” she told me. In her mind, the family would encircle his bed, filling his final moments with tributes of love and gratitude. Instead, none of them saw him for a full month before his death. The rehab facility where he was temporarily staying closed its doors to visitors in March 2020. The family kept in touch with him through daily calls, but after COVID hit the facility and took Shafqat’s voice, he stopped answering. On April 6, he was rushed to a hospital just three blocks away from the family’s house, but when he died 8 days later, “he might as well have been on a different planet,” Sabila told me.
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Donovan James Jones loved WWE and church. “He made his own decision to be baptized,” his mother, Teresita Horne, said. “He was so proud.”
Most of the grievers I interviewed had similar experiences, especially during the early pandemic. From the last time they saw their loved one in person to the moment they said goodbye on a grainy screen, their separation was absolute. They weren’t allowed to visit. Communication was impossible once ventilators became necessary. Updates were scarce because hospitals were overwhelmed. There was just the waiting. Some waited while fighting for their own life. Teresita Horne had spent more than a week on a breathing machine when her 13-year-old son, Donovan, died in a different hospital; she watched him die on her phone. “I remember screaming,” she told me. “When your kids are sick, they need you, but I couldn’t be there to comfort him. I couldn’t hold his hand one last time.”
These experiences share qualities with other devastating crises. Sarah Wagner, an anthropologist at George Washington University who researches death and mourning, sees similarities between the experiences of COVID grievers and people whose loved ones went missing during wars. “Families didn’t know what happened and are left to imagine those horrible last moments” in a way that “still troubles their grief years later,” she told me. Sabila Khan, for example, knows little about her father’s final days, except that he likely spent them “in a warzone of an ER,” she told me. “What was he thinking? How do I even come to terms with that?” Many grievers know that dying from COVID is long and grueling. Sherry Congrave Wilson was tearful but unflinching when she told me that Felicia Ledon Crow, her best friend of 30 years, died suffering and alone. “I just hope and pray that she had a loving nurse, someone around who was kind to her,” Congrave Wilson said.
The aftermath of a COVID death is lonely too. Social rituals can help people cope with guilt and uncertainty, but during much of the pandemic, funerals, wakes, and shivas haven’t happened. Kristin Urquiza, a co-founder of the nonprofit Marked by COVID, lost her father in June 2020; aside from a bizarre virtual funeral where the connection kept glitching, she still hasn’t been able to mourn and celebrate him with the hundreds of people who loved him. And without outlets for collective expression, grief can stew. Hari Close, the funeral director, told me that some people felt they had failed their loved ones twice over, first by not being with them at the end and again by not being able to celebrate their life.
After death, routine and social connection can help mourners cope. But grievers have been deprived of both because of America’s continued failure to control the pandemic. “In addition to mourning my dad, there was that extra layer of mourning my life,” Sabila said. Several people told me that friends or family members who once would have been supportive pillars became distant or unhelpful, either because they began to swallow pandemic misinformation or because they were simply exhausted. When Rekha, a family friend of mine who lives in Seattle, lost her dad in 2013, “everyone I knew showed up and took care of me,” she told me. That didn’t happen when her mother died of COVID this January because “everyone’s depleted,” she said. (The Atlantic is identifying Rekha by only her first name to protect her extended family’s desire for privacy.)
Khan picture on dark background
Shafqat Khan loved activism, sports, and books—American, British, South Asian classics and serials, and, “when he was especially desperate,” his daughter Sabila’s young-adult novels, she said.
While support has vanished, reminders of loss have proliferated. Many people have found themselves isolating in now-emptier homes. The phones on which they watched their loved ones die sit in their hands every day. The disease that has caused them so much pain has been perpetually on the news and on people’s lips—a miasma of triggers that has kept their grief raw. “To have to confront on an almost hourly basis everyone’s feelings about this situation that we’re in made it so much worse,” Kristin Urquiza told me.
Many of the people I interviewed felt that their loved ones immediately became statistics—that their individual tragedy was subsumed by the pandemic’s enormity, and that people were constantly discussing every aspect of the crisis except for grief. “In American culture, grief is already a very isolating experience, but it has been even more isolating this time around—which is weird because we’re all supposed to be in this collective experience together,” Rekha said. The pandemic’s circumstances have left her and millions of others in an almost paradoxical state of mass isolation. They’ve all shared in the same tragedy but feel so very alone.
When COVID grievers tell others about their loss, they tend to get the same responses. Do you know how they were exposed? Did they have a preexisting condition? Were they vaccinated? Every griever I interviewed has faced these questions, from online trolls and close friends alike, and with shocking immediacy. People regularly ask Rekha if her dead mother was vaccinated before they offer condolences or sympathies. “It’s not just one time; it’s all the time,” she said. “It’s all the time,” Kristin Urquiza echoed. “Pretty much from every person,” says Christina Faria, who lost her mother, Viola, late last year.
In 1989, the grief expert Kenneth Doka coined the term disenfranchised grief to describe situations where people struggle to cope with losses that aren’t “socially sanctioned, openly acknowledged, or publicly mourned.” That’s exactly what many Americans who have lost someone to COVID are experiencing. The words we normally use to console grievers honor the relationships that death disrupts: I’m sorry for your loss. But the questions that COVID grievers get “reduce the person to the disease,” Rebecca Morse, who studies death and loss at Divine Mercy University and is a former president of the Association for Death Education and Counseling, told me. And they cast judgment upon the circumstances around their infection, “which makes these deaths stigmatized and shameful,” Morse said. If the deceased was unvaccinated, went to a bar, or had preexisting health problems, their life becomes devalued, and their death becomes less tragic. When hearing about Viola’s death, “everyone is like, ‘Oh, she was 76’ or ‘She had heart surgery’ or ‘She was overweight. What did you expect? Of course she was going to be the one to die,’” Christina told me. Especially after vaccines became available, COVID became lumped with causes of death such as lung cancer, liver disease, and AIDS, which society classifies as self-inflicted and therefore worthy of blame rather than sympathy. Instead of getting support, many COVID grievers have been forced to defend their loved ones and justify their grief.
“Everyone is having a fear response,” Rekha told me. They’re grasping for signs that their choices, or their lack of preexisting conditions, make them safe. But that instinct easily turns data into stigma. If someone’s death fits with population-wide trends—if they were older, chronically ill, or unvaccinated—their loss is explicable, and therefore dismissible. The compulsion to explain away a death is so strong that although Rekha’s mother was thriving, beyond having high blood pressure, even people who knew her were quick to retrofit poor health onto their memories. They’ll claim she was frail, as if “COVID was the last little bit of her dying anyway,” Rekha told me. “And, like, You were around her, and she was fine!”
At the other extreme, people whose deaths don’t fit with population-wide trends are also dismissed as statistical outliers who inconveniently complicate accepted notions of safety. Teresita Horne keeps hearing that kids aren’t at risk from COVID, even though she knows many parents who have lost children of Donovan’s age. “You don’t hear about them,” she told me. The odds that a child will die of COVID are incredibly low, but if your child is part of the numerator, it doesn’t matter how large the denominator is. Similarly, vaccines are extremely effective at preventing COVID deaths—but some vaccinated people still die, Christina’s mother among them. “Everyone assumes she wasn’t vaccinated,” she told me. “They want to believe that people didn’t do all the things they needed to do to be safe—and that’s not true for a lot of people.” When Cleavon Gilman, an ER doctor, honors such folks on Twitter, he gets accused of undermining confidence in vaccines, or even being an anti-vaxxer. “It’s gotten to the point where if someone was vaccinated and died from COVID, people think you shouldn’t talk about it,” he told me.
Grievers must also deal with lies and mocking. On the day that Esparza-Casarez’s husband died in April 2020, she watched a press conference in which Donald Trump stated that the virus “is going away.” Zach, an artist who lives in St. Louis, saw a clip of Ted Cruz mocking masks at the Conservative Political Action Conference while his father lay dying in a hospital. (The Atlantic has agreed to identify him by only his first name to avoid heightening tensions in his family that have already been exacerbated by the pandemic.) “It was just a punch in the gut … the mania, the cheering, the applause,” he told me. “Imagine if you lost someone to cancer and half the country was making fun of cancer all the time,” he said. “Imagine that it’s just everywhere, every day, and it doesn’t go away.”
mirror reflection of man's picture on white
Mark Urquiza loved karaoke, the Dallas Cowboys, hunting, NASCAR, and people; he was the life of the party and “never met a stranger,” his daughter, Kristin, said.
These dynamics have silenced many grievers, deepening their already intense isolation. Martha Greenwald, a writer in Kentucky, runs a site called Who We Lost where people can post stories of their loved ones; many do so because the site doesn’t allow comments, making it a rare space where they can share their grief without risking judgment.
Sympathy is even scarcer for people whose loved ones bought into COVID disinformation. Kristin Urquiza’s father, Mark, took COVID seriously at first but let his guard down in May 2020. Trump had said it was time to reopen society, Arizona Governor Doug Ducey lifted restrictions, and Mark, a lifelong Republican, said, “Why would they say it’s safe if it’s not safe?” Kristin recalled. “That’s when I lost the battle with my dad.” Later, after he caught COVID, most likely at a bar, and before he went into the hospital for the last time, she asked him if he felt betrayed. “My dad never, ever hesitated with his words, but there was just this long pause, and he quietly said yes,” she told me. People have told her that Mark deserved what he got. But Kristin sees him as yet another victim of the disinformation that ran rampant among his social circles, his media universe, and the elected leaders he trusted. “That shouldn’t result in a death sentence,” she said.
For more than two years, COVID has tested America’s institutions—its political apparatus, its information networks, its public-health system, its hospitals—and found them all wanting. Several grievers told me stories in which many failing systems crashed down upon their loved ones. A refugee with a family to feed isn’t eligible for financial assistance and so carries on working at an oil change station throughout a COVID surge, and gets infected. Local hospitals are overwhelmed, so a mother moves in with her daughter elsewhere in the country and catches COVID from her grandkids. An immunosuppressed organ-transplant recipient dies of COVID after their child brings it home from school. The employees at a doctor’s office don’t learn that they’re COVID-positive for days, because the holidays have created a backlog of tests, so a mother who turns up for an appointment in the intervening time gets COVID from them.
These complicated chains of events mean that “if you lost someone to COVID, you don’t even know where to begin to find accountability,” Alex Goldstein, who runs a memorial Twitter account called @FacesofCovid, told me. Do you blame Trump or Joe Biden? Your governor or your mayor? The person who infected your loved one or the person who infected that person? Those who sow misinformation or those who buy into it? The entire world? “Blame has been placed all over, and responsibility is so diffuse,” Wagner, the anthropologist at George Washington University, told me. “It’s harder to create clear narratives,” which makes the tragedy feel that much more senseless.
Many grievers end up blaming themselves. Should I have pulled them out of that nursing home? Should I have pushed them harder to get vaccinated? And worst of all: Did I give them COVID? “There are so many little pivot points where things could have gone a different way,” Rebecca Morse, the death-and-loss expert, told me. “Imagining what could or should have been done can increase both your anger and your guilt.” Rekha told me that her anger comes in waves, “and I don’t even know what to be angry at,” she said. “I feel like we’re all culpable to different degrees.”
Many grievers are finding the current phase of the pandemic especially hard. For the families of the first 100,000 Americans to die of COVID, “there was at least a sense that the world had stopped,” Sabila Khan told me. Now, grieving families are told that we must learn to live with the virus that only just tore a hole in their lives. Jeannina Smith, a doctor at the University of Wisconsin at Madison, cares for organ-transplant recipients, who are on immunosuppressive drugs and are therefore particularly vulnerable to disease; she told me that she lost more patients in the Omicron surge than at any previous point in the pandemic. “They did everything right—they got vaccinated and boosted and were so careful,” Smith said, and their loved ones must now mourn them “while society is saying that COVID is over.”
Woman in a hat picture on black
Felicia Ledon Crow loved orchids, tulips, DIY, reggae, and walks. She and her friend Sherry Congrave Wilson talked about “getting old together” and being “these crazy hip old ladies,” Congrave Wilson told me.
After Christina Faria’s mother died on December 29, 2021, her friends said it was a harsh reminder that the pandemic wasn’t over. “But here we are, not even three months later, and no one talks about her anymore,” Christina told me in March. She has several disabilities that make her vulnerable to respiratory infections, and Viola was her primary caregiver; she’s now struggling to pay her bills, keep her home, and protect her health. And yet, she told me, her friends are getting annoyed that she still wants to wear a mask when she isn’t required to.
Many grievers are starved for sympathy and patience because our popular understanding of grief is wrong. An influential but misleading model suggests that it progresses through five stages—denial, anger, bargaining, depression, and acceptance. But in fact, it doesn’t involve discrete stages, doesn’t proceed along a predictable linear path, and might not end in acceptance. “Closure” is a simplistic myth. Grief, as it actually unfolds, is erratic, and in many cases slow. Rekha remembers feeling pressured to move past her dad’s death in 2013; she now feels an extreme version of the same compulsion, as if society is insisting that this is the moment for everyone to move past their pandemic grief together. In mid-March, after an especially tough week, she told her husband that she didn’t know why she was having a bad flare-up of grief. He reminded her that her mother died a month ago. “I had internalized this feeling that it’s time to be done with it,” she said, “and I have to remind myself that it just happened.”
Even people who lost their loved ones at the start of the pandemic are still hurting. “Time itself heals nothing,” Morse told me. Time simply gives people chances to learn ways of coping. But those chances have been stripped away by two years of social isolation and upended daily routines. And “without grappling with the daily reality of the loss, the mind doesn’t fully process what happened,” Natalia Skritskaya, an expert in prolonged grief at Columbia University, told me.
Instead, many people “created a time capsule,” Morse said, locking their grief away without ever learning how to live with it. When society reopens, the capsule does too, and the grievers reemerge, still raging and sorrowful while everyone else has moved on. “You’re repeating the same parts of grief all over again and not able to get past it,” Keyerra Snype, a health-care worker, told me. She lost her grandmother Shirley during the first COVID surge, and more than two years later, “it’s difficult all over again,” she said.
a man's picture scene in many mirrors
David Casarez loved sci-fi, golf, California’s Moonstone Beach, and gardening. “I called him the ‘orchid whisperer,’” his wife, Lucy, said.
Others are trapped in a pandemic time capsule, too, including those whom we rely on to witness death, prevent it, or deal with its aftermath. Hari Close, the funeral director, told me that “even though people think we are used to death, it’s been overwhelming trying to comfort families in their loss,” especially while losing family members and colleagues himself. Cleavon Gilman, the ER doctor, told me that many health-care workers are traumatized after two years of repeatedly telling families that their loved one has died, “hearing that shrill cry on the phone over and over, and then going outside to see a world that’s acting like we’re lying about the numbers.” (Gilman also lost three colleagues to the pandemic: two nurses who died of COVID and a mentor who died of suicide after witnessing the first surge.) Alanna Badgley, the EMT, felt like something broke after Omicron arrived. In February, “at one point, I just started crying and couldn’t stop,” she told me. “I’m just so sad, and I don’t know how to feel better. It’s not like depression. It feels like grief.”
Some of the grievers I talked with feel kinship with COVID long-haulers, whose lives have been flattened by months or years of relentless symptoms and who similarly feel dismissed, ignored, and isolated. They didn’t die of COVID, but many nonetheless lost much of their former life. After getting infected in October 2020, Alexis Misko can no longer muster enough energy to stand for more than 10 minutes or sit upright for more than an hour. She was once an occupational therapist and an avid hiker, and “I grieve constantly for that person,” she wrote in 2021. Nick Güthe told me that after getting long COVID, his wife, Heidi Ferrer, went from being “one of the healthiest people I knew” to living with extreme fatigue and excruciating pain. “In the last weeks of her life, she couldn’t walk, eat most foods she enjoyed, or read a book,” Nick said. “It felt like bees were stinging her ankles all day long.” Heidi died of suicide last May. The doctor who treated her at the hospital and confirmed her death to Nick had never heard of long COVID.
In her book The Myth of Closure, Pauline Boss, a therapist and pioneer in the study of ambiguous loss, offers some advice for pandemic grievers: “It is not closure you need but certainty that your loved one is gone, that they understood why you could not be there to comfort them, that they loved you and forgave you in their last moments of life,” she wrote. Instead of waiting for a clean but mythical endpoint to one’s loss, it is better to search for “meaning and purpose in our lives after this horrific time in history,” she said.
Nick Güthe now pours his energy into raising awareness of long COVID, in part to honor one of Heidi’s last requests to him. “I’ve had to talk a lot of people with long COVID off the same ledge that my wife was on, and it’s been hard to turn away from that,” he said. “I’ve saved quite a few people at this point.” Alex Goldstein also feels compelled to continue posting tributes to the deceased on his @FacesofCOVID account, because it’s all the recognition that some grievers get. “A lot of folks tell me that when it’s late at night and they’re thinking about their loved one, they’ll go to the tweet and look at replies from strangers around the world,” he told me. Four days after her dad died, Sabila Khan started a Facebook group for COVID grievers, which now has 14,000 members. Shafqat was an activist who spent years advocating for Pakistani immigrants, and “this has become a way for me to keep his memory and good work alive,” Sabila told me. “It gives me purpose in my grief.”
In contrast to these grassroots efforts, national moments of mourning and remembrance have been rare and fleeting. A few art projects have powerfully commemorated the losses, but briefly. After collective tragedies, “the rites and rituals of mourning are meant to bring groups back together,” Wagner, the anthropologist, told me. “We’re seeing a process that’s almost antithetical to that, because mourning has been so fragmented and suspended.” Sabila told me that even as a Muslim, she felt more solidarity among fellow Americans after 9/11 than over the past two years. “We didn’t have that rallying moment with COVID,” she told me.
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Shirley Snype loved butterflies, the Investigation Discovery channel, the color purple, and “her kitten, Cici,” her granddaughter Keyerra said.
Some of the people I interviewed felt relieved when Biden presided over a lighting ceremony in February 2021, when the COVID death toll was just half what it currently is. But Kristin Urquiza told me that such gestures are “insignificant in comparison to the massive amount of death and suffering that we’ve had.” The nonprofit that she co-founded, Marked by COVID, is pushing the U.S. toward actions more fitting in scale. It wants the first Monday of March to be marked as a national COVID Memorial Day, and for permanent memorials to be erected around the country. “Putting my grief into a physical thing would take off some of the emotional heaviness,” Keyerra Snype told me. And having a solid, lasting memorial would go some way to assuring grievers that their loss is real, and that their loved ones mattered. Urquiza said that she’s striving for the country not just to remember her dad but to remember everything that cost him his life. “We can’t just put this in a memory hole, or we’ll forget,” she said. “I don’t want anyone to ever feel what I’ve had to feel.”
Wagner has seen similar dynamics after past atrocities, in which bereaved family members found themselves having to fight for recognition and reconciliation. “Why on earth should someone who lost multiple members of their family not be allowed to be with their grief, instead of bearing the responsibility for repairing society?” she said. “When it isn’t politically expedient for those in positions of power to commemorate the deaths and extend forms of reparation, it falls on the families.”
If there’s one thing Teresita Horne wants the world to know about Donovan, it’s that “he was one of the kindest souls anyone would have met,” she told me. Kindness is also the thing she most wants from everyone else, no matter their politics or their positions on the pandemic’s numerous controversies. One million people died in just over two years. It should be incontestable that they are gone, that they mattered, and that the millions more who loved them should get the grace and space to grieve and mourn.
All portraits featured here are courtesy of family and friends of the people pictured.
The Atlantic’s COVID-19 coverage is supported by grants from the Chan Zuckerberg Initiative and the Robert Wood Johnson Foundation.
