Their mom died of COVID. They say conspiracy theories are what really killed her
Stephanie was usually careful about her health and regular vaccinations. But then she got into sharing far-out videos and fringe ideas. When COVID hit, misinformation put her and her husband at risk.
One thing everyone agrees on is that Stephanie didn't have to die. Even months after it happened, her family is struggling to figure out why.
"There is no perfect puzzle piece," says Stephanie's daughter Laurie. "I literally go through this all the time."
Stephanie was 75 when she succumbed to COVID-19 this past December. But Laurie says it wasn't just COVID that killed her mother. In the years leading up to her death, Stephanie had become embroiled in conspiracy theories. Her belief in those far-out ideas caused her to avoid vaccination and led her to delay and even refuse some of the most effective treatments after she got sick.
"I don't believe she was supposed to die," Laurie says. "I blame the misinformation."
As America approaches a million deaths from COVID-19, many thousands of families have been left wondering whether available treatments and vaccines could have saved their loved ones. According to the Kaiser Family Foundation, more than 230,000 deaths could have been avoided if individuals had gotten vaccinated.
Not everyone who refuses a vaccine believes in elaborate conspiracy theories, but many likely do. Anti-vaccine advocates have leveraged the pandemic to sow mistrust and fear about the vaccines. Local papers across the country are dotted with stories of those who refused vaccination, only to find themselves fighting for their very lives against the disease.
Stephanie's family wanted to share what happened to her in the hope their story can help others. NPR agreed to use only family members' first names to allow them their privacy as they continue to grieve.
"I know we're not alone," says Laurie. "I know this is happening all over the place."
From vaccine supporter to skeptic
Stephanie was a native of the Bronx, and for almost 55 years she was married to a man named Arnold. They met shortly after he returned from the war in Vietnam. Her family's dry cleaning shop was just a few blocks from his parents' house.
Parking in the Bronx was always tricky, Arnold quips. "So I said, 'You know, this isn't bad — she's very attractive, she's pleasant to be with — maybe I'll start dating her and I won't lose my parking spot."
They got engaged after just one month. After a few years of marriage, they moved to Long Island and bought a fixer-upper home. They had two daughters, Laurie and Vikki, who Stephanie stayed home to raise. Vikki remembers Stephanie had an unwavering belief in her children's ability to achieve whatever they wanted.
"She just believed we could do anything, and I think that's really powerful as a parent," she recalls.
When the daughters reached high school, Stephanie began to get into astrology and tarot. She did readings to advise people about things like houses, kids and jobs. It was quirky, but Laurie says that Stephanie brought a lot of positivity and optimism to her sessions.
"Everybody loved it, because everybody is always trying to figure out their lives. There's always the struggles," she says. "She spread hope with people."
For all her star charts and spiritual ideas, Stephanie was practical when it came to her health. She went for regular checkups, and she was a big believer in vaccines. "She made sure I took the flu shots, we took the shingles shot, we took the pneumonia shot," Arnold recalls. "I mean, I was like a pincushion."
The family lived for many happy years this way. The daughters grew and started families of their own. Arnold retired from a job working for the gas company.
Then, just before the pandemic began, there was a change in Stephanie. Nobody can exactly pinpoint when it happened. Part of it was physical. Throughout her life, she had played tennis. But it had taken a toll on her knees. She was finding it hard to walk and had to have a stair lift installed in her house.
The loss of tennis from her life also had a psychological impact, says Vikki. "It was her everything. It's where she felt really valued and strong and important."
Perhaps partially because she was isolated and feeling down, Stephanie got into watching strange videos and sending them to the rest of the family. Vikki says it was Laurie who was really the first to notice.
"She called me up one day and was like, 'All right, have you been watching these videos that Mom is sending us?'"
The videos covered a wide range of far-fetched conspiracy theories: JFK Jr. is still alive; reptilian aliens control the government. Arnold says he wouldn't even look at them: "Watching them, to my way of thinking, would have reinforced that they were valid. Even if I'd argued against them, she wouldn't have accepted my argument."
Stephanie's fringe ideas were troubling, but the family still hung out. Laurie says sometimes they fought over her beliefs, but often they kept the conversation on things like the grandkids.
Then came the pandemic, and everything changed. Stephanie's videos told her COVID was a hoax. But Laurie and Vikki took it seriously. They were worried about giving their parents the virus. So they stayed away, trying to keep them safe.
"We just stopped seeing each other as a family," Laurie says. "We didn't do Thanksgiving that first year."
While the family stayed away, others did not. Through her astrology, Stephanie had formed a spiritual group that met weekly at her house. And like Stephanie, other members of that group didn't believe the virus was real.
The more time they spent together, the more Stephanie became invested in her beliefs. Arnold says it was "tribal": "Staying in the same clique, reinforcing each other, and not getting outside opinions."
When the COVID vaccines came along, Stephanie absolutely refused to get one because she falsely thought the shots contained tiny microchips. Moreover, she began avoiding her daughters, who had gotten vaccinated, because she believed false information that vaccinated people could somehow spread COVID.
Arnold didn't get vaccinated, to try and keep the peace.
Good vs. evil
The family felt stuck. They didn't know how to shake Stephanie out of her beliefs. And they are hardly alone. Diane Benscoter runs a nonprofit called Antidote, which seeks to help families whose loved ones have been taken over by cults and conspiratorial thinking. She says she's inundated with emails from families facing the same struggles.
"My inbox," she says. "It's horrible."
Much of the public conversation around misinformation focuses on fact-checking and flagging false posts online. But these methods don't provide much help for people like Stephanie, says Sander van der Linden, a professor of social psychology at the University of Cambridge in the U.K.
"Most people who are really into disinformation and conspiracy theories don't believe in a single conspiracy theory," he says. Rather, they're drawn into a self-reinforcing conspiratorial worldview in which conspiracies build on one another. While the theories can seem disparate, they often have unifying themes: They feed distrust in sources of authority; they claim insider knowledge that makes the believer feel valuable; and frequently, that knowledge includes a secret plan to defeat the forces of evil.
Van der Linden says there are three major reasons why people are drawn into this world in the first place: fear and anxiety about the future, a desire to have a simple explanation for complex or seemingly random events, and the social support that communities around conspiracy theories can provide.
While it's impossible to say exactly what drove Stephanie, her daughters identify several things that seem to roughly correspond to those broad categories of motivations. First, they say Stephanie suffered from a lot of anxiety throughout her life. With her tennis days behind her, much of her self-esteem now lay with her astrology work and her spiritual group. And that group was clearly playing the role of echo chamber, reinforcing her ideas and beliefs.
Benscoter thinks the pandemic has also pushed many people further into the shadows of conspiracies. "The pandemic increases fear, and fear is a really hard emotion. And isolation is a really hard place to be," she says.
Benscoter herself is a former cult member. She says the conspiracy narratives provide reassurance. Even if the facts seem crazy, they can provide emotional stability. Speaking of her own past, she says these tales gave clarity because they turned complex problems into simple questions of good versus evil.
"It feels so good; I never felt so secure. I mean I knew what was right and wrong. There was no question," she says.
Because those motivations are all about psychological needs, arguing the facts around individual conspiracies will do little to shake people out of their beliefs. Moreover, "when you try to pull on one, the whole thing collapses for people," van der Linden says. "So the resistance becomes much stronger."
Efforts to dissuade Stephanie from her beliefs were frequently met with outbursts of rage, her family says. "She was angry that we weren't listening to her and believing what she believed," Vikki says. "A couple of times I tried to speak to her on an analytical basis," Arnold says. "But I could see she was getting defensive, and I didn't want to alienate myself from her."
Both Benscoter and van der Linden say there is no surefire way to get someone from abandoning conspiratorial thinking. They also say one of the best strategies is to try and get a person to question the messenger, not the message. "People, especially these kinds of people, don't want to feel like they're being manipulated," van der Linden says. He says it's good to ask questions like: "Do you think it's possible that other people are profiting off you?"
It was a strategy Stephanie's family said they tried a few times. But even then, van der Linden says, these interventions take time. People can't change their thinking instantly, and often will backslide as they talk again to their fellow conspiracy theorists.
"It's an extensive process," he says.
Out of time
Unfortunately for Stephanie, she did not have time. In November of 2021, just before Thanksgiving, Arnold and Stephanie met two other couples for dinner at a popular local restaurant.
"Afterwards, she started developing symptoms," Arnold says.
But she refused to get tested. Instead, she ordered drugs online from a natural healer in Florida. Two of the drugs, ivermectin and hydroxychloroquine, are ineffective against COVID, but many conspiracy theorists believe they work. Stephanie waited for the pills to come.
"She was waiting for the pills and I said, 'Why wait? You could go to the doctor right now. You have amazing health insurance. You don't have to wait,'" Laurie says.
All the while, she was getting sicker and sicker. The daughters got her a device to check her blood-oxygen level: It was at just 77%.
Vikki called a friend who was a nurse: "She said, '77?! You need to get your mom to the hospital. She could die!' And I said, 'Really?'"
Stephanie still didn't want to go, but after hearing she could die, she eventually gave in. Arnold drove her to the hospital.
Even after she was admitted, she turned down some effective treatments for COVID. One drug, called remdesivir, has been proven to reduce the severity of COVID, but Stephanie believed conspiracy theories claiming the drug was actually being used to kill COVID patients. Stephanie also refused another treatment shown to be very effective for patients with COVID-19: monoclonal antibodies. Laurie remembers how one doctor responded when he learned that Stephanie had refused the drugs:
"He was like, 'Why didn't you take any of the treatments Stephanie?' She found every little piece of energy in her and yelled back at him, 'BECAUSE IT'LL KILL ME!'"
Meanwhile, Arnold had developed symptoms and was getting sicker and weaker. He eventually asked his daughters for help.
Vikki drove him to get monoclonal antibodies. He worsened overnight, and the next day, he was admitted to the same hospital that Stephanie was staying in. Unlike his wife, Arnold accepted every treatment he was offered.
"He said yes to everything. He said yes to every treatment they were willing to give him," says Vikki. "My Mom said no."
He was discharged after just five days.
"I felt hopeful, because I told her I was going home. I told her, 'I'll be waiting for you.' And then, everything started deteriorating," Arnold recalls.
"She was fighting a fight without any defenses," says Perihan El Shanawany, a doctor with Northwell Health, who was part of the team that cared for Stephanie. As Stephanie grew sicker, she started developing blood clots on her lungs. El Shanawany knew that as things progressed, Stephanie would only suffer more.
"Patients at that point feel like they're suffocating, they're drowning," El Shanawany says. "It's a horrible way to die."
The only option Stephanie had left was to go on a ventilator. So Dr. El Shanawany sat down with her and asked her what she wanted.
"She did say that she's had enough. That's her words, 'I've had enough. This is not a life. I can't live like this anymore'," El Shanawany says.
During a video call, Laurie heard her mother's wishes. She had been urging Stephanie to fight because she felt it wasn't her time. But hearing those words, "I can't live like this anymore," something changed. For years they had been battling over the lies and conspiracies. Laurie knew it was time to make peace with the mother she loved.
And that meant helping Stephanie to die comfortably. "My whole mission after hearing that was to help her get her wishes," she says.
Laurie stayed by her mother's side, reading text messages from friends and relatives who wanted to say goodbye. At one point, seeing she was suffering, Laurie played her some music written by a family member: "She gave me a thumbs up," Laurie recalls. "She was there."
"We all said goodbye and told her she was the best," Laurie says.
Stephanie died the next day. It was Dec. 28, a few days after Christmas.
At the funeral, Arnold heard from scores of people whom Stephanie had helped over the years, through her astrology, and just her advice and friendship.
"They all said, 'She changed my life,' " he says tearfully.
In the months since Stephanie died, the family has begun the long road to healing. Arnold has received the COVID vaccine. And Laurie recently bought a home closer to her father and sister. "We'll be able to be in each other's lives more," she says.
She also says she's slowly making her peace with Stephanie's death.
"I'm a lot less angry," she says.
But she still thinks about the people who make the paranoia-laced videos that her mother consumed day after day. She understands that something inside her mother drew her to those voices, but Laurie still sees Stephanie mainly as a victim of the grifters and attention-seekers who generate many hours of falsehoods every day to grab money, likes and shares.
"Whoever is creating all this content, is on some level waging a war — here in America — inside of every family," she says. "I think people need to wake up to that."
Copyright 2022 NPR. To see more, visit https://www.npr.org.