MARY LOUISE KELLY, HOST:
Nearly 1 million Americans have died from COVID-19. And according to a new estimate from the Kaiser Family Foundation, more than 230,000 of those deaths could have been prevented by vaccination.
GEOFF BRUMFIEL, BYLINE: Today we have a story of one person whose life could have been saved by the COVID vaccine. Her name was Stephanie. She died in December, and her family is still struggling to figure out why it had to happen.
LAURIE: It's something I can't understand. So, I mean, there is no perfect puzzle piece for this. I literally go through this all the time.
KELLY: That is Stephanie's daughter, Laurie. We're keeping it to first names to give her and the rest of the family privacy as they grieve. Stephanie refused to get vaccinated because she believed in conspiracy theories. There's no way to know exactly how many other people have made similar choices, but Laurie thinks there are many families like hers.
LAURIE: I know we're not alone. I know this is happening all over the place.
KELLY: NPR's Geoff Brumfiel looked into Stephanie's story and how bad information contributes to the COVID death toll.
BRUMFIEL: 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, Vikki.
VIKKI: You know, she just believed we could do anything. And I think that's really powerful as a parent, you know?
BRUMFIEL: 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.
ARNOLD: When it came to human interaction, human emotions, she was, like, wise. She just had a wisdom about her.
BRUMFIEL: 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.
ARNOLD: When people came, she just was looking to help them, to give them whatever they needed.
BRUMFIEL: 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.
ARNOLD: She made sure I took the flu shots. We took the singles shot. We took the pneumonia shot. I mean, I was like a pincushion. But...
BRUMFIEL: They were happily married for nearly 55 years - raised Laurie and Vikki, 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 stairlift 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. Vikki says it was Laurie who was really the first to notice.
VIKKI: 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's not right.
BRUMFIEL: The videos covered a wide range of farfetched conspiracy theories - JFK Jr. is still alive, reptilian aliens controlled the government. Arnold says he wouldn't even look at them.
ARNOLD: Watching them, to 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.
BRUMFIEL: 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 grandkids or redecorating. 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.
LAURIE: 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.
BRUMFIEL: Because 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: It was sort of like - I don't know if you want to say, like, tribal - staying within the same clique, reinforcing each other.
BRUMFIEL: 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 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 Stephanie's family is one of many.
DIANE BENSCOTER: My inbox, it's horrible. It's so many people in so much pain.
BRUMFIEL: And she thinks the pandemic has played a big part in what's happening.
BENSCOTER: The pandemic increases fear. And fear is a really hard emotion, and isolation is a really hard place to be.
BRUMFIEL: Benscoter herself is 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.
BENSCOTER: It feels so good. I've never felt so secure. I mean, I knew what was right and wrong. There was no question.
BRUMFIEL: Stephanie's daughters 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 whose sense of security and community hinges on conspiracies isn't likely to be helped by a fact sheet. Benscoter and other experts told me it takes a lot of careful conversations and convincing to try and turn a person like that around.
BENSCOTER: It's almost like a drug addiction.
BRUMFIEL: Unfortunately for Stephanie, she did not have time. It was November of 2021, just before Thanksgiving. Arnold and Stephanie met friends for dinner.
ARNOLD: Afterwards, she started developing symptoms.
BRUMFIEL: But she refused to get tested. Instead, she ordered drugs from a natural healer in Florida. Two of the drugs, ivermectin 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 daughter got her a device to check her blood oxygen level. It was at just 77%. Vikki called a friend who is a nurse.
VIKKI: And she said, 77? She said, you need to get your mom to the hospital. Like, she can die. And I said, really?
BRUMFIEL: 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. Laurie remembers how one doctor responded when he heard that Stephanie had refused key drugs.
LAURIE: He was like, why didn't you take any of the treatments, Stephanie? And she found every little piece of energy in her and yelled back at him, because it'll kill me.
BRUMFIEL: 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.
ARNOLD: I don't remember. They were sticking me with needles all the time.
LAURIE: He said yes to everything.
VIKKI: He said yes to every treatment they were willing to give him. My mom said no.
ARNOLD: Because I figured that if she came home, I had to be healthy for her. So...
BRUMFIEL: He was discharged after just five days.
ARNOLD: I felt hopeful because I told her I was going home. I waved to her. I said, I'll be waiting for you. And then everything started deteriorating.
PERIHAN EL SHANAWANY: Well, she was, like, fighting a fight without any defenses.
BRUMFIEL: Perihan El Shanawany is a doctor at Northwell Health who is part of the team that cared for Stephanie. Without vaccination or the best treatment, Stephanie got sicker. She started to develop blood clots on her lungs. Dr. El Shanawany knew that as things progressed, Stephanie would only suffer more.
EL SHANAWANY: Patients at the point feel like they're suffocating, they're drowning. And it's a horrible way to die.
BRUMFIEL: The only option Stephanie had left was to go on a ventilator. So the doctors sat down with her and asked her, what do you want to do?
EL SHANAWANY: 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.
BRUMFIEL: During a video call, Laurie 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. Laurie knew it was time to make peace with the mother she loved, and that meant helping Stephanie to die.
LAURIE: My whole mission after hearing that was to help her get her wishes, cause she's ready to die - help her. I wrote little notes to myself.
BRUMFIEL: 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 her advice and friendship.
ARNOLD: They all said, she changed my life.
BRUMFIEL: In the months since Stephanie died, the family has tried to move on. Arnold's gotten the COVID vaccine. Laurie says she's slowly making her peace.
LAURIE: I'm a lot less angry. I think I was very angry in the beginning.
BRUMFIEL: But she says she still thinks about the people who make the paranoia-laced videos that her mother consumed day after day.
LAURIE: Whoever is creating all this content is, on some level, waging a war here in America inside of every family.
BRUMFIEL: She wants more people to wake up to the damage these folks are doing and to help their loved ones if they can. Geoff Brumfiel, NPR News.
(SOUNDBITE OF YOUNGEE AND VETO SONG, "S.M.I.U.H.2")
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