Short Wave - Stephanie's Story: How COVID Misinformation Affected One Family

Episode Date: May 10, 2022

Stephanie was usually careful about her health and regular vaccinations. But then she got into sharing conspiracy-filled videos and fringe ideas. When COVID hit, misinformation put her and her husband at risk. Science correspondent and editor Geoff Brumfiel shares with Emily Kwong what he learned in reporting Stephanie's story. You can follow Emily on Twitter @EmilyKwong1234 and Geoff at @GBrumfiel. Email Short Wave at [e-mail] pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences.NPR Privacy Policy

You're listening to Shortwave from NPR. Hey, shortwavers. Emily Kwong here with our science desk colleague, Jeff Brumfield. Hi, Emily. So we are approaching a pretty brutal milestone in this pandemic. Almost a million people in the U.S. have died from COVID-19. And the Kaiser Family Foundation estimates that more than 230,000 of those deaths could have been prevented by vaccination. Yeah. I mean, it's just an enormous number.

It's really kind of hard to think about. But today I just wanted to focus on one of those deaths. A woman named Stephanie, she died in December. This is her daughter, Lori. It's something I can't understand still. I mean, there is no perfect puzzle piece for this. I literally go through this all the time. So we're only using first names of Lori and the other family members to give them privacy as they grieve.

But the story is that Stephanie refused to get vaccinated because she, believed in conspiracy theories. And there's no way to know exactly how many other people have made similar choices. But Lori thinks there are many families like hers. I know we're not alone. I know this is happening all over the place. Today on the show, we bring you a story of how conspiracy theories cost the life of a loved one and why people are so drawn to misinformation in the first place. You're listening to Shortwave, the Daily Science podcast from and Before we talk about the conspiracy theories, the family fights, the illness, and ultimately Stephanie's death, her kids want you to know that she was a really great mom.

Here's her other daughter, Vicky. You know, she just believed we could do anything. And I think that's really powerful as a parent, you know. She was married to a Vietnam War veteran named Arnold. He worked for the gas company, designing the lines. She was more of a people person. When it came to human interaction, human emotions, she was like, wise. She just had a wisdom about her.

She loved astrology. She did tarot readings to advise people about houses, kids, jobs. It was quirky, outside the mainstream, to be sure. But Arnold says that Stephanie brought a lot of positivity to her sessions. When people came, she just was looking to help them, to give them whatever they needed. At the same time, Stephanie was pretty practical about health care. She went to the doctor regularly, and she was a big believer in vaccines. She made sure I took the flu shots.

We took the shingle shot. We took the pneumonia shot. I mean, I was like a pincushion. They were happily married for nearly 55 years. Raised Lori and Vicky, retired, traveled. It was a good life. Then, a few years back, the family noticed a change in Stephanie. Part of it was physical.

Throughout her life, she 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. Forced to spend more time sitting and in pain, she started watching strange videos and sending them to the rest of the family. Vicky says it was Lori, who was really the first to notice. And she called me up one day and she's like, all right, have you been watching these videos that mom is sending us? And I said, no, I haven't.

I just never watched them. I had no time. She's like, well, I started watching some of them. She's like, and I think that something is not right. The video's covered a wide range of far-fetched conspiracy theories. JFK Jr. is still alive. Reptillion aliens controlled the government. Arnold says he wouldn't even look at them.

Watching them, from my way of thinking, would have only reinforced that they were valid. Even if I tried to argue against them, she wouldn't have accepted my argument. Stephanie's fringe ideas were troubling, but the family still hung out. Lori says sometimes they fought over her beliefs, but often they kept the conversation on things like grandkids or redecorating. Then came to the pandemic, and everything changed. Stephanie's videos told her COVID was a hoax, but Lori and Vicky 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. We didn't do Thanksgiving that first year. And, you know, I do feel that that was a big problem, actually, that we weren't all getting together. Because while the family stayed away, others did not. Through her astrology, Stephanie informed 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. It was sort of like, I don't know what you want to say. like tribal, staying within the same click, reinforcing each other. When the COVID vaccines came along, Stephanie absolutely refused to get one. And she started avoiding her daughters who had gotten the shot. Arnold didn't get vaccinated to try and keep the peace. The family felt stuck. They didn't know how to shake Stephanie out of her beliefs.

Diane Ben Skoda runs a nonprofit called Antidote, which seeks to help families whose loved ones have been taken over by cults and conspiratorial thinking. she says Stephanie's family is one of many. My inbox, it's horrible. It's so many people and so much pain. And she thinks the pandemic has played a big part in what's happening. The pandemic increases fear, and fear is a really hard emotion. And isolation is a really hard place to be.

Ben Skoda herself as a former cult member, she understands why wild stories can take hold. The narratives, however strange, provide reassurance The world is less chaotic and unpredictable than it appears. Even if the facts in these theories seem crazy, emotionally they can provide stability. Speaking of her own past, she says these kinds of false tales gave a sense of clarity. It feels so good. I've never felt so secure. I mean, I knew what was right and wrong.

There was no question. Stephanie's daughter said she suffered from a lot of anxiety throughout her life. The pandemic had been hard and left her surrounded mainly by people who, thought as she did. Someone who's sense of security and community hinges on conspiracies isn't likely to be helped by a fact sheet. Ben Skoda and other experts told me it takes a lot of careful conversations and convincing to try and turn a person like that around. It's almost like a drug addiction. Unfortunately for Stephanie, she did not have time. It was November of 2021, just before Thanksgiving. Arnold and Stephanie met friends for dinner.

Afterwards, she started developing symptoms. But she refused to get tested. Instead, she ordered drugs from a natural healer in Florida. Two of the drugs, hypermectin and hydroxychloroquine, are ineffective against COVID, but many people believe they work. Stephanie waited for the pills to come. All the while, she was getting sicker and sicker. The daughters got her device to check her blood oxygen level.

It was at just 77%. Vicky called a friend who was a nurse. And she said, 77. She said, you need to get your mom to the hospital. Like, she can 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 got there, she turned down some of the most effective treatments. 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. Lori remembers how one doctor responded when he heard that Stephanie had refused key drugs. He's like, why didn't you take any of the treatment, Stephanie? And 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. Within days, he was admitted to the same hospital. Stephanie was staying in. Unlike his wife, Arnold accepted every treatment. I don't remember. They were sticking me in these all the time. He said yes to everything. He said yes to every treatment they were willing to give him. My mom said no. Because I figured that if she came home, I had to be healthy for her. Yeah.

He was discharged after just five days. I felt hopeful because I told her, was going home. I waved to her. I said, I'll be waiting for you. And then everything started deteriorating. She was like fighting a fight without any defenses. Perihann El Shanoani is a doctor at Northwell Health, who is part of the team that cared for Stephanie. Without vaccination or the best treatments, Stephanie got sicker. She started to develop blood clots on her lungs. Dr. El Shanoani knew that as things progressed, Stephanie would only suffer more. Patients at that point feel like they're suffocating, they're drowning, and it's a horrible way to die.

The only option Stephanie had left was to go on a ventilator. So the doctor sat down with her and asked her, what do you want to do? She did say that she has had enough. That's her words, I've had enough. This is not a life. I can't live like this anymore. I'm done. I just want to go.

Let me go. I just want to die. During a video call, Lori heard her mother's wishes. She'd been urging Stephanie to fight. She knew it wasn't her time. But hearing those words, I can't live like this anymore, something changed.

For years, they'd been battling over the lies and the conspiracies. Lori knew it was time to make peace with the mother she loved. And that meant helping Stephanie to die. My whole mission after hearing that was help her get her wishes. Because she's ready to die.

Help her. I wrote little notes to myself. Stephanie passed away a few days after Christmas. At the funeral, Arnold heard from dozens of people who Stephanie had helped over the years through her astrology and just heard advice and friendship. They all said she changed my life. In the month since Stephanie died, the family has tried to move on.

Arnold's gotten the COVID vaccine. Lori says she's slowly making her peace. I'm a lot less angry. I think I was very angry in the beginning. But she says she still thinks about the people who make the paranoia-laced videos that her mother consumed day after day. Whoever is creating all this content is on some level waging a war here in America inside of every family. That's a really powerful statement from Lori. And this piece is just so revealing, Jeff.

I'm just so grateful to the family for talking about what they went through. Yeah. And in going there with them, what was most surprising for you? You know, I think something that I've struggled with since I started reporting on disinformation is sort of how people can buy into these really wild conspiracy theories of the sort that Stephanie thought, you know, like microchips in the vaccines or reptilian aliens controlling the government. And what I came to understand through reporting the story is that for some people, these are really fulfilling a psychological need. These stories are really about providing a sense of safety, a sense of control. And in Stephanie's case, because she was sharing these stories with like-minded people, a sense of community during a very stressful and lonely time as the pandemic has been for many people. And I think that helps explain why sort of showing someone a fact sheet or, you know,

a fact check article won't lead them to abandon these ideas. It may even cause them to dig in because what's going on is really emotional and psychological. So, I mean, in light of that, what is possible for a family caught in the same situation when they have a loved one who believes these conspiracy theories and they just don't know how to reach them? Unfortunately, I don't think there's a real clear answer. Even the experts don't always know what to do. I mean, people aren't going to abandon their sort of security blanket in the middle of a crisis. They're not going to change their mind about things they feel are pretty foundational right in the middle of a grave illness.

So you can't really count on that. So what can you count on? You appeal to the emotional side again. You try to sort of appeal to the believer that there might be an ulterior motive of the people sharing this stuff, which often there is. Often people are out for prestige or money. However, you know, Stephanie's family did try those conversations and they didn't work. You know, I think what they were lacking was time. It takes time to convince people. It takes time to change their mind. And unfortunately, because Stephanie became ill, she just didn't have time, you know. So I don't think families should

feel like they have the responsibility to fix everything either. It's a very tough situation. Jeff Frontfield and PR Science Desk correspondent and editor. Thank you so much for coming on the show. Thank you. This story was edited for radio by Brett Neely and for Shortwave by Giselle Grayson. Thomas Liu produced and Margaret Serino checked the facts. I'm Emily Kwong. You're listening to Shortwave, the Daily Science podcast from NPR.