EPISODE ONE: DIANA BERRENT

Diana Berrent is a photographer, lawyer, and as of recently, a Coronavirus survivor advocate. Diana was diagnosed with Covid19 in early March after attending a business meeting in New York City. She suffered through weeks of the disease in total isolation and 6 months later, still experiences side effects from her battle. While isolated, Diana dreamed up a coalition of Coronavirus survivors who would share their life saving plasma, participate in medical studies and connect on their experiences. That idea turned into, "Survivor Corps", a Facebook group that now has over 107,000 members. Diana tells Between Headlines what it's really like to battle Covid19, what she's hearing from survivors and Covid "long-haulers", and what we can all do to support each other through the pandemic.

Transcript:

SUMMARY KEYWORDS

people, survivor, day, diana, plasma, post, life, happen, group, study, world, symptoms, donating, march, isolation, largest, talking, story, long, literally

SPEAKERS

Alison Hall, Diana Berrent

Alison Hall 00:10

You're listening to between headlines. I'm Alison Hall. Between headlines is a podcast about the people behind the headlines. This is something I've been working on. Okay, thinking about for years. I'm a journalist, and I meet incredible people every day. But our news cycle is fast and our attention spans are really short. I started to realize that with each person I meet who has an impact on me, I barely have time to stop and listen and learn from them. Before moving on to my next story. My favorite part of my job is getting to meet regular people who turned out to be far from it. People who have overcome something people whose lives have been changed, who may have found themselves connected to a headline. This is a place for their full stories, unfiltered, we have a lot to learn from one another. And of course, we are all going through a lot. But life and these strange times in particular are very different for everyone. I hope in listening what you think you know is challenged. I hope each episode provokes a sense of empathy and understanding. Every two weeks, I'll be releasing an episode centered on a headline based story, but with a real person who that story affects. This won't be about the Daily News or the latest stats. This is the raw emotion and lessons from real life. And this is my effort to slow down and listen, and I hope you do too.

Diana Berrent 01:45

For today's episode, I speak with Diana Berrent. Diana was one of the very first few people to be diagnosed with coronavirus in New York City in early March, when most of us were only just beginning to understand the severity of something called Coronavirus, or COVID-19. Diana was already sick with the headline making disease and she was completely isolated. Diana is a wife and a mother of two and she holed up in her bedroom to recover for 18 days to protect her family. During her extreme isolation Diana started a Facebook group survivor core to connect with and band together with other people recovering from COVID. There are now more than 105,000 COVID survivors in that Facebook group. We have heard so much about the high mortality rate of COVID-19. And sadly, over 200,000 people have died in the United States alone. But what about all of the people who have a less severe but still very serious brush with the disease and are told to recover at home all alone. After all, there are millions of them around the world with survivor core Diana's mission is tenfold, to share resources for plasma donation sites, medical research and to connect with the largest community of human beings who have actually had the disease that has ripped through 2020 and all of our lives. Through Diana's efforts to encourage COVID survivors to donate their plasma. She has subsequently created a cohort of people who use this space to connect to share and to feel less alone in their battle and their recovery. Danna talks about the very real long term side effects of COVID and how so much is still unknown. She talks about the stigma that comes along with having the virus and the reaction she gets to being a whistleblower of sorts in her community. Diana's story is a reminder that we all need to continue to take COVID-19 seriously. And at the same time, I am filled with a sense of hope, knowing that someone like Diana is leading the charge for life saving treatments, medical research, and simply human connection. I hope you enjoy my conversation with Diana.

Alison Hall 03:59

Diana, I have read so much about you. Now in this COVID space. Who were you before COVID came into your life so drastically.

Diana Berrent 04:09

I have to say that I've had more lives than most cats probably, um, I read Michelle Obama's book last year, or whenever it came out. And I loved the way she spoke about, you know, the worst thing to ask a little girl is what they want to be when they grow up, because we're all constantly becoming. And we're all in the process of, you know, constant change. So I started off working in politics and government. I worked it at the State Department for a couple of years. And my first job out of college is an aide to the Secretary of State, and I traveled with her and then I spent a year at the White House. And then I went to law school, and I worked at a big wall street law firm. And then I traveled with President Clinton and his post presidency. For About 10 years, and I then became a photographer, and I had a photography business for 12 years and ended up signed with a big New York agency. And now I apparently am in the public health sphere. So yeah, things have different versions. And that and that's probably skipping some.

Alison Hall 05:25

Wow, no kidding. That's incredible. So just tell me with COVID I mean, how did it enter your life? I mean, we all can remember back to early March or even before that when we started to hear about it, but for you, it was a little different. What happened?

Diana Berrent 05:42

Yeah, so actually, I had been in incredibly nervous about it. Um, not not for myself. But you know, my husband has MS. My, my mom is elderly and, you know, has health issues. And you know, all I found hearing was that it affects the elderly and the immunocompromised. And I am not a germaphobe by any stretch of the imagination. A year and a half ago, I was just high in the Ganges River photographing the world's largest congregation of humanity in the in history at the KU mela. I didn't even need a Pepto bismol. Um, you know, like, I spend my summers when my kids are away a camp camping in trekking through Mongolia and Africa, like in a pup tent, not glamping or anything, are you with my camera. And, you know, I would prided myself on having, you know, immunity of steel. But I am a complete news junkie. So I had been watching everything come out of China, and then through Italy, and I live outside of New York City and it you know, you I don't think you need to think that broadly to realize that, you know, New York City is the gateway to the world. It wasn't going to be long before it hit our shores. And so I was quite nervous, actually, in the weeks leading up in February, then I was having my kids, when they came home from school, wash all their clothes to hot water, you know, shower immediately, I was canceling routine doctor's appointments, everyone thought that I was being a little crazy. But then I went to a meeting on the evening of March 9. And there were eight people sitting in around the living room as a business type kind of feeling of a meeting, not social. And at that point, it was just, you know, don't touch your face, and wash your hands often. We did not know that it was the airborne virus. And so there were eight people at the meeting. Two of them, at least two had been at a conference that ended up was a super spreader conference in the days Previous to that meeting. Everyone got COVID, who was at that meeting, and one person died two weeks later. So I was among the first people. You know, the first person to be diagnosed with COVID in New York City was on March 1. I contracted it on March 9, and I came down with symptoms on Friday 13th. I know, it's of course, of course, the Friday the 13th to 2020. What else could happen but waking up with COVID. Um, there was nothing subtle about it. I had 103 fever, I felt like I had an elephant sitting on my chest. I had a respiratory infection. And I had been following it closely enough that even though I could not possibly imagine how I could have been exposed to it, or how I of all people could have been subject to it or you know, or victim to it. I should say. I knew the telltale signs. And so I immediately grabbed my laptop and I went into my bedroom and I stayed in isolation for 18 days.

Alison Hall 08:48

Wow. And how did you get a test?

Diana Berrent 08:51

I had to fight for a test. So I was a photographer up until March 12. And I had just photographed an event at one of our local elementary schools in a packed gymnasium packed with children, parents and teachers for a dance performance as doing a volunteer project for the school. And I was I didn't know at that point where I had been exposed and we didn't know what the incubation period was. And so I was convinced that I it was patient zero for my entire town that I had infected everybody. So I really fought to get tested. Not because it would have changed my outcome. You know, either way at that point whether or not I was positive, but because I got sick prior to things shutting down. I was terrified that I had exposed to others. And I went to get tested and I was told that the only way to get tested was if you had been in China or Iran or Italy in the previous three months or you could prove that you had had 10 minutes of sustained exposure to somebody who tested positive. At that point there were only a handful of people in the Entire New York Region who had tested positive and nobody had come forward with our identity. So it was this completely Kafka esque situation, because it was impossible to prove. I was so livid that I went home, I posted my own timeline, I did my own contact tracing on Facebook, in our town, parent page, and I wrote out a full calendar of everywhere I had been in the previous 10 days, which made me about the least popular person in my town, ever. But I felt like it's the right thing to do. And I fired off an email to, you know, some really local representatives. And at the last minute, I posted on Facebook, and by the next morning, it got shared thousands of times, which was kind of crazy for me, you know, I had just recently had a photograph in National Geographic, and I think it was shared four times. You know, I don't live the kind of life where things are shared thousands of times, it was the first thing that ever happened to me. Um, but it, you know, through a friends of friends of friends or acquaintances, acquaintances, it ended up, I'm at my car on my Congress minutes lap The next morning, who got his attention. And he called in a test for me, which was, you know, great for me, not exactly a scalable solution for the rest of the community. Um, I ended up getting a positive result Three days later, I then went and I told my school district wouldn't, and they chose to not actually notify anybody, which was shocking. But, you know.

Alison Hall 11:31

And so you've said that you were the least popular member of your community when you posted that timeline, saying all of the places that you had been unknowingly at the time, possibly having Coronavirus? I mean, what was that? Like? Did you get negative feedback from people? Did you have people reaching out to you angry that you might have been in contact with them?

Diana Berrent 11:50

I did get some pushback. Yeah, I did. I got notes from people saying, you know, just so you know, you went to that hair salon, and now nobody is making appointments there. You know, meanwhile, everything was shut down by the government the next day. So it was sort of ridiculous. But in more recently, I, you know, in in the beginning of August, I actually raised up on that same, you know, town Facebook page, you're like, Hey, guys, now that, you know, I hadn't really talked about it since then, because it was spilled milk. There was nothing, you know, nothing to be done. But I raised the issue of like, you know, hey, you know, that we're talking about school reopening? How are we going to deal with notifications, because mine wasn't, it wasn't dealt with in the spring, this is what happened. So we need to be prepared in the fall. Um, and a member of the Board of Ed called me and threatened me with silence, I got blocked from the town parent page, as did my husband, who doesn't even use Facebook, which is hilarious. The superintendent called me a liar. I basically been canceled by my town, which is sort of ironic, given that the trajectory of my life over the last six months went from being like, you know, somebody with no public profile to someone with a national profile with 103,000 people, you know, following me in this group, but my own town, it's a very different story.

Alison Hall 13:23

Yeah. Wow. And I mean, people talk about the stigma of having COVID. And in survivor core, I know you posed a question once. I mean, what is the stigma that people have faced? And so many people wrote various versions of that same story? I mean, what about friends? Even family members? Like, is there anyone in your life or people that you might have considered acquaintances, who you noticed, were maybe acting differently, both after

Diana Berrent 13:54

your diagnosis? And since then, once you've been touched by COVID? I mean, I think it does leave you with a bit of PTSD. You know what I mean? Like, you know, you wouldn't wish this on your worst enemy. And when I see people being careless, when I see people making decisions that are not based in science, and I speak out, people see that as fear mongering, you know, just let let the, you know, let the people in charge, make their decisions and don't question things. So that's more the feedback that I get that I think people find me you know, think that I'm being hysterical about the situation, except for you know, it's maddening to have a school opening based on temperature checks. We just did a survey of for over 4000 people which will be the is the largest study of non hospitalized COPD patients that will have been done to date. And I'll give you a little preview of one of the findings, which we haven't released. And one of them is that one third, only one third of people present with a fever. And those are adults, children generally present with gastro issues, not with fever at all. So by basing school openings on temperature checks, you know, that's solving yesterday, it's solving today's problem with yesterday's solution. Yeah, it's a terrific way to screen for the flu. But it's not going to help keep COVID out of schools. And so if I raise a, if I raise something like that, I definitely feel like I'm being attacked. Because, you know, just let just let things go, things need to reopen? Like, why are you always, you know, focusing on the, you know, the doom and gloom side of it. But the truth of it is that the doom and gloom side of it is very real. And, you know, I just, I, it angers me, when people don't take it seriously enough.

Alison Hall 15:54

Yeah, I bet. Because you know, what it's like, and as you said, you wouldn't wish it on your worst enemy, let alone, you know, people at school or teachers or anyone, anybody,

Diana Berrent 16:05

anyone, anyone. And the end of the thing is, is that the more we know, the more insidious it is. So when I had it was, you know, I went through it thinking, Okay, either, I, there's this seven day 10 day period, where there, there can be a crash. And so once I was on the other side of that, I was like, Okay, I'm gonna recover, like, I'm going to be okay, I'm going to be one of the first survivors. This is kind of amazing. And that's what spurred on the idea for survivor court, and we can talk about that. But, you know, at the same time, I didn't realize that surviving COVID does not always mean recovery. For one third of people, they are not recovering and one out of five young, healthy people who have no pre existing conditions. And when I say young, that tops off at 34, I'm not counted in that category. I'm 46. So, you know, from my perspective, if, if you look at it, we are as a country, we're tracking infections, we are tracking mortality, we're tracking, you know, I'm sorry, we're tracking infections, hospitalization and mortality. But there's this huge bucket of people in the middle like the vast, vast majority, I mean, only a small percentage of people are actually hospitalized for COVID. Most people like me recover at home with Tylenol and Gatorade, and they are not getting better. Not only are they not getting better, you know, a 28 year old woman in my group who's a fitness instructor, she just posted a photo a couple of hours ago back in the hospital with like, heart attack like symptoms. Um, you know, she had COVID, five months ago. And, and so I think that people think of it as Okay, either I'm going to get the flu or I'll end up if I'm really unlucky, or if I'm in really bad health, all end up on event, you know, made those people are worried. But the truth is, is that anybody can this can ruin anybody's life. Life. I mean, we are finding it affects every single organ system. And the the ravages that we're seeing on people's bodies. It's just, it is so frightening. I mean, we're seeing post covid, onset diabetes, post covid, onset lupus, tachycardia and severe neurological issues. It seems to age people decades, in the time of months,

Alison Hall 18:36

it's terrifying. You can you walk me through when you were talking about your diagnosis, and then your isolation for 18 days. I mean, what was that like? especially being one of the first people as somebody who hasn't thankfully had COVID yet, you know, that time in all of our lives was really scary. People were scared of each other. They were scared of the world, they were scared of contracting it, every single headline was about COVID and how to avoid it. And here you are. One of the first people in New York to have it and reading all of these headlines and you're holed up in your bedroom with the door shot, you must have been so scared that your husband, as you said, who has MS. Your children, like what was that fear? Like?

Diana Berrent 19:23

Um, it there were there were points that were absolutely terrifying. Um, there were points that I really got. I mean, there was one night that I one of the one of the great symptoms of COVID is insomnia. And so added to that I'd be up in the middle of the night and there was no survivor corner or anything like that. I immediately made friends with one ER doctor in the city who was also in isolation, and he would spend time on the phone together, because we're the only people who could relate to one another. But There was one night in particular that I remember reading about David lat who's very prominent in the New York legal circles and is now a member of survivor Corps. And he was on event at the time, and I've been a lawyer in New York and I knew who he was. And I knew that we were about the same age. And when I read his story, and at that point, it did not seem like he was going to make it, he By the way, he is doing extremely well and just ran a his first mile, which is more than I can say that I've done since I've had COVID. Um, but I read that and I just sort of crumbled on the floor of my closet a was, you know, to be the guinea pig of any sort of novel disease is frightening to say the least. Um, you know, on the other hand, and it was also strange, just being I missed the whole, you know, going shopping for toilet paper phase. Like, I missed the whole mask situation and the introduction of social distancing. When I came out, I, you know, I felt like, you know, that, you know, and Jared Leto, like walked out in the desert, he had been out camping and like, walked back into LA and found out, you know, they're in the middle of lockdown pandemic, I sort of felt as removed as that, um, but at the same time, it was a gift in many ways. Um, it was, I would, if had I been, you know, out with my family, I would have been supervising my kids, you know, transition to online schooling, I would have been stocking up on toilet paper like everybody else, and, you know, dealing with meals, and so on and so forth. And it allowed me time to think in a way that, you know, and think creatively, in a way that I don't think I had been allowed in many, many years, where I'd been really consumed by motherhood, and you know, all of that of, you know, managing a household and everything that comes along with it my business. And it was during that time that I started survivor Core i started at while I was in isolation. And so and I attribute it to the isolation. So it was scary being among the first but I don't want to make isolation into a negative frightening thing. Because it is the responsible, right thing to do. If you even suspect that you have COVID. Do not share a bathroom with anybody in your family, if you can help it. If you don't have that choice, scrub it down with disinfectant after every single use. You know, I ended up with an eight day column in the New York Post while I was in isolation, which gave me it was sort of a good project every day, I wrote an article and recorded a video blog. And it sort of became the face of the average COVID patient, because nobody had seen that yet. The end, it was sort of surreal that I was being sort of billed as like the good news story in a way because the city around me was burning, you know. And they were it was just heartbreaking as I would watch pictures of the tents, hospitals going up in Central Park and the morgues building in Queens. It was it was surreal, but it was it was a gift in many ways.

Alison Hall 23:28

Why did you start survivor corps

Diana Berrent 23:30

so the reason I started it was I got several emails all in one day from the afforded to me from Mount Sinai, Mount Sinai Hospital had the first COVID post COVID convalescent plasma program in the country. And they were recruiting people with the idea, you know, convalescent plasma is an idea that goes back well over a century, it's it goes back to the mid 1890s, when it was used against diphtheria, the antibodies in one person's blood or in the plasma, the sort of amber watery substance in your blood, that's where the antibodies live. If you can transfer it from one person to another, no matter how crudely it can pass on that sort of, you know, what I call your inner hazmat suit that you have built by having COVID you get to share it with somebody else by donating your plasma. And so, you know, it has a very long history, the Nobel Prize was won for it in 1901. It was used against the measles. It was used against, you know, more recently Ebola h1 and one you know it, it has a long and fairly safe history. And so it was being explored for use against COVID. And they were looking for people who were who could test negative for the virus. And people who were 14 days symptom out there were very, very few people. In fact, they couldn't get Anybody, and I had gone public my story. And so for most people, I was the only person who anybody knew who had COVID. Um, you know, and so everybody was for forwarding me the same email. And I quickly realized that I, you know, I just remembered just enough back to 10th grade biology to realize that if I was going to come out of this on the other side, and by that point, it looked good, you know, like the respiratory infection was clearing rather than getting worse, I was getting other symptoms, which were totally unexplained like gi issues, which we had, I had no idea I thought I had a stomach virus, because we didn't even know that, you know, gi issues could even be related to COVID let alone make up for 40% of the cases. Um, but I saw that email come through from Mount Sinai or that that you know, those emails multiple and realized that Montana was not going to be the only game in town for very long, and there was going to be a free market established for convalescent plasma and survivors, were going to be a commodity. And so where I might be one of the first survivors, there, were going to be thousands for sure to follow. And unfortunately, there has been, you know, hundreds of thousands to follow millions to follow on and so why really set a free market for convalescent plasma, it just makes no sense. You know, we're in the middle of the pandemic, if you are when you are in the midst of a collective crisis, you need efficiency and you need collaboration, you do not need competition. And so rather than you know, and and I was right, you know, they weren't the only game in town for very long and within weeks, Columbia had started a program and Montefiore in the Rockefeller Center and then Stony Brook and and this is just in the New York area. Um, I ended up actually being the first volunteer at Columbia University's convalescent plasma program. But what what it did so I realized that if I was going to be one of the first survivors, if I could gather or put together a coalition, if we can gather all as a movement, that we could offer a tremendous amount to science, that we could offer a tremendous amount to the world. I actually, so Dr. Fauci was doing a Facebook Live with Mark Zuckerberg that week. And I managed to get a question in on immunity. And he it was the last question that he took. And he answered, and he said that there was reason to believe that immunity would follow if it were like any other Coronavirus, or any other virus of its type. We didn't know how long it would last or so on and so forth. And so at that point, I had higher hopes for an assurance of immunity. And so I envisioned it in part as a service organization. And so I named it after the Peace Corps. Because I saw it, I imagined people with antibodies, helping out on the front lines and not being a drain on PPP, and holding the hands of the dying and cheering on women in childbirth or just going grocery shopping for their neighbors. And the other part of that, so that didn't actually quite happen. Because the science isn't there on immunity yet. I still love the idea. But yeah, we need science first. But the second part of it did come to fruition and remains our mission to this day and that is to mobilize an army of survivors to donate plasma and support science by participating in every academic, scientific and medical study in trial for which they qualify. So not only does survivor core exist now is a an open Facebook group, which is the group that I started on March 24. We're now over 103,000 members I believe, but we also have a website survivor core.com which is a one stop shop on how to give back how where to donate plasma just put in your zip code we list all of the studies that you can be a part of so not only have I donated my plasma eight times the first time to scientific research through Columbia, the subsequent seven to the New York Blood Center for direct patient transfusion because I happen to be in Universal donor eight I'm AB positive blood donors and plasma donors are not the same matches before you get a whole lot of phone calls correcting me on that. Um, and so but I've also donated blood for vaccine research. I have donated blood for T cell research because it really looks like our antibody response will really lie in our T cells not in the presence of antibodies on and you know, I participated in you know just about every study you can possibly imagine down to one that tracks my Fitbit and my heart rate. That's happened to be one of my favorites. But um, and now we're at a point where we are doing our own research. So we have launched a program with Columbia University called recovery core, which is a really cool program. It is a longitudinal study of COVID patients, it will track them over years, and will track them both serologically. So tracking their antibodies, and tracking them symptomatically. And it's being led by Wendy Chung, who's a, you know, rock star geneticist, you know, even I have a non scientist as I couldn't believe that it was Wendy, who's running it. And, you know, that should be you know, that's, that's an amazing project. And we do, and we are doing our own research with Indiana University Medical School, because what's happening now is that the world is realizing that people are not necessarily recovering from COVID. But yet, we have no data on anybody who is not hospitalized. Nobody goes to their doctor with COVID. Right? I mean, you're told, only go to seek medical help, if you think you're dying. Literally, if you can't breathe, go to the ER, but anything short of that, best of luck, stay home, you know, nobody is going to their GP or urgent care, you know, for treatment for covid. And so as a result, we have no data, we have no metrics, we have nothing on the huge group of people who are not hospitalized, and we need to fill in that gap. And so we started working with a doctor at Natalie Lambert at IU med school, she also serves on the state of Indiana's pandemic task forces just like unbelievable. And it happens that her background is in how to call medical data from social media, which was you know, just like a match made in heaven. And so we you know, when the CDC put out a report in July, saying that they were increasing their symptom list from four to 12, we put out a list with 98 symptoms. And we just closed a study with over 4000 participants. By contrast, the paper was just study was just published based on 60 tweets, the CDC, his report was based on 263 people about long term COVID jammas report was based on 183, we had over 5000 participants, we had over 4000 completed studies, we actually had to postpone the due date for it because it was taking people days to complete because it's so comprehensive. And so we're really hoping to fill in a lot of those gaps.

Alison Hall 32:54

And beyond to the scientific angle, which is so important and what an incredible thing you've created. The people are also on there just pouring their hearts out. They're updating in real time. They're posting pictures of themselves in their hospital beds, or sharing that they've unfortunately lost

Diana Berrent 33:14

a family member. I mean, what do you think it is that's making people share all of that in this group of strangers? It's funny that you've touched on probably my favorite. I mean, there's not a lot to love about COVID. Um, but there is something beautiful that came out of that is a part of this community. I mean, if you think about it, it is a community that grew out of extreme isolation. It is a group of 103,000 strangers in America, who are having the most civil, most supportive, most caring, uplift, not uplifting but uplifting each other conversation. In America, we are living in the most fractured political time of our lives. I think that's safe to say everyone will agree no matter what side of it, they're on. But in survivor core, nobody's arguing about masks. There's nobody who's calling it a hoax. There is nothing but support for others. It is I call survival core, the epicenter of hope. Because, to me, that is something extraordinary that we have built. I don't I can't think of another group of that size that has that much empathy that that is so positive towards one another. Um, there's civility. I mean, and that is something that we are sorely lacking right now. And there is you know, just, it's an incredible thing to see. Um, you know, it almost feels like a family of sorts, like I wake up in the morning like I I check in on people through the day, you know, I talked to them in the middle of the night. And But what's more amazing is that they're talking to each other in the middle of the night. And that's what's extraordinary. And I'll see a message of like, thank you so much for being there for me last night, I couldn't have gotten through it without you. And knowing that these are mean strangers it coming from. I mean, this is literally the most diverse group of people you can possibly imagine, literally, the only thing they have in common is that they all caught the most contagious virus we've ever known. I mean, that's it, that's the only thing they have in common. And so it shows you some goodness about humanity, it shows you, you know, there's, you know, in the same way that you know, donating plasma, is, is therapeutic, it is also therapeutic to be able to help somebody who's in need, and to who needs and, you know, or who can learn from you. And so, interestingly, we see northeasterners reaching out and helping people now in rural areas, you know, first, you know, in Texas and Arizona and Florida when they were first getting hit, and we see each wave helping the next because they've been through it. And so they have advice, they have things to say I didn't have anyone giving me advice when I had COVID. But there's a lot of advice to be given. Now what I normally say go to the internet for medical advice. No, that's like literally the worst idea in the world. But these are not normal times. Nor is anybody allowed to actually give out medical advice. You can give your own anecdotal story, but we have a lot of rules, and we stick to them and our admins are amazing, and that they are able to maintain this. So we are far and away, you know, the largest grassroots COVID movement in the world at this point.

Alison Hall 36:53

And probably one of the largest positive spaces, I mean, people, everyone knows social media, from their own experience, or from seeing just how negative it can be, especially when somebody has a large following whether they're a celebrity or an influencer, or really any large community, people have so many strong opinions, and it's usually associated with, even if there's some sort of negativity, or some sort of positivity, there's always some negativity and it just really doesn't seem like that's

Diana Berrent 37:23

present. yet. You're You're absolutely right. I mean, I had my first I had my first brush with that last week. Um, I had my first tweet go viral, um, I had something like 111,000 likes and shared 30,000 some odd times. Um, and the things that people had to say about me, Oh, my God, it was shocked. I was like, Oh, that's what people are talking about when they say Twitter is so mean. Because I'm like, I'm one of those people who, you know, Twitter for me is like therapy. It's like, you know, shouting into the ether, because nobody's responding to people will like it three, maybe. It's just my way of venting. But, um, so I had never received any of it because nothing I had tweeted it ever gotten that much traction, but man, people are vicious. But yeah, you don't see any of that in survivor Corps. Not at all. I mean, it's actually funny. Um, once I got kicked out of my own towns, parent page, I had to start my own.

Alison Hall 38:28

But I will,

Diana Berrent 38:29

um, I mean, you do what you got to do. But I also often post the same article to both groups. And, um, you know, I know exactly what I'm gonna get from the survivor, core group of 103,000 people. But, you know, I met with vitriol in my thousand person, town group, there is something really special about it. There's something really unusual. Folks at Facebook warned me early on to switch it to a page once we hit a pretty low number there like because groups just they they fall apart, they implode. And we kept at it. I had faith. I had faith in this group. And they have not proved me wrong. They've amazed me every day.

Alison Hall 39:16

What has the group done for your mental health and your recovery?

Diana Berrent 39:21

Oh, my God, I mean, it's incredible. I mean, like, it gives you purpose in the most in the deepest, most profound way. I mean, look, I can talk about you know, donating plasma and what it feels like to save lives. But that's, you know, it's an it is it is it is truly an extraordinary experience. But it's it's more abstract. These are real people who I speak with on the phone, who I text with, who you know, I know the names of their kids. Sometimes they not everybody you know, but having an impact on that many people's lives and bringing them together, and giving them something to root for and to advocate for themselves. On we call people, you know, I call the members superheroes, because in many ways they are and they are doing the hard work, you know, so when I put out a call for all those people to fill out that survey, it took some of them days to fill it out. Remember that one of the major issues that people are having post COVID are cognitive issues, and brain fog and memory. And so extreme fatigue. So in order to end it was extraordinarily comprehensive, and it took them days, but they kept at it, they will go to bat for each other and for themselves. And they realized that we The world is listening to them. And that's extraordinary, we get a ton of media requests. For members, I often joke that I could put COVID Booker on my resume, not sure where that will get me but, um, if I wanted to, I guess. Um, but you know, it's incredible when when these, you know, when folks get the opportunity to tell their story on TV, they got to go on CNN and tell their story, they got to tell their story to the New York Times, they get to tell their local news and national news and international news. And that is empowering. You know, they are off, they're being gaslighted by their doctors who are being are diagnosing them with anxiety when they're actually having tachycardia is happening mostly to women. Women make up a majority of people who are suffering from long COVID. And so, you know, add that gender, you know, piece into it, and you're looking at what's really being treated as like the modern day female hysteria. Yeah.

Alison Hall 42:02

I know, employers, too, are saying, well, you couldn't possibly be sick for that long. You got COVID. Everyone says, Oh, it's 14 days, you should be back at work by now. Why are you still so tired? Why are you still so sick? They don't believe you.

Diana Berrent 42:17

Right. And people's family members are having the same reaction or thinking that they're, you know, just, I mean, look at it, just look at the responses to me on Twitter. Last week, and you can see, I got a little glimpse of what people are dealing with, um, and what happens, you know, what happens with your employer, if you were never able to even get a diagnostic test in March or April, because they weren't available, or the ones that were available were large, or many of them were faulty. You know, that has to be kept in mind, too. We're looking at having to rewrite policies, that this is going to be a long term effort in getting these people to care that they deserve, you know, we're going to need a disability fund. This will be the largest group of disabled young Americans. that exists. I mean, that is sobering.

Alison Hall 43:12

Yeah, incredibly. And I know people are saying now, you know, yes, cases, maybe up, but it's young people. And it really only affects older people. I mean, when you hear that, and you have what do you think when people try to discount the severity of it just because it's maybe now affecting more young people, but less severe cases? Less hospitalizations are less deaths?

Diana Berrent 43:38

Right? Right, exactly. So we're seeing fewer deaths for the mortality rate is going down, but the infection rate is skyrocketing. And, you know, when you look at these college campuses, I mean, it's just breeding grounds. I mean, what we really need in the same way that we bailed out the car industry, the auto industry, we should bail out the universities, so that they can, I mean, they need to keep kids on campus so that they can stay afloat financially, you know, and then they're having these huge outbreaks and then they risks and you know, that they're damned if they do damned if they don't, in terms of sending them all back to wherever they came from. And in, you know, starting waves about breaks throughout the country, but people are not paying attention to the fact that in those CDC numbers, one in three aren't recovering, but one in five are young, healthy people with no pre existing conditions. And remember that that tops out at 34. So we're talking about people in their 20s and early 30s. Even teenagers, late teenagers are having these issues. Some children are having these issues to a lesser number, but But certainly, you know, once you You're late teenager, your body is pretty much that of an adult and so, you know, sure, okay, you might only get You might not get that sec, from COVID. But two months later, you could have a stroke or a heart attack. You know, you could walk away with, you know, inflamed heart or scar tissue on your heart after having been asymptomatic. I mean, it is it blows my mind that we're being so cavalier about our population. I mean, this is, you know, you're jeopardizing an entire generation, for health consequences that we can't even yet imagine. Nobody has looked nobody has studied it yet. There have been no report. There have been no peer reviewed studies on any of this yet. There hasn't been time. There hasn't been enough time. And so it infuriates me that policies are being made like that, that are not based on science. We've learned things since March. But our policies haven't changed in the

Alison Hall 45:58

slightest. You are such an advocate. You talk about speaking with people on the phone all day long in the middle of the night, knowing their families. I mean, that must be incredibly busy for you. It sounds like that's the very light word to describe you. I mean, how are you doing yourself? You're still facing the effects of long COVID?

Diana Berrent 46:22

Yeah, I have to say I am very lucky I, I am I still having gi issues deep inner ear pain headaches, I actually was just diagnosed with glaucoma last week, which the ophthalmologist thinks was brought on by the COVID, which, as a photographer's I hadn't quite wrap my head around that. But minor, minor, mild, very much compared with others when I mean, the folks that I'm talking about are 25 year old marathon runners who literally are on month five and cannot climb a flight of stairs. But yeah, it's exhausting. But it is empowering. And I feel like a mana campaign. I've worked on many campaigns. And this is a campaign, this is the most important campaign I've ever worked on. Because people's lives are in the balance. And so I am so motivated. It's hard to balance everything, you know, I have, you know, I don't go to the zoom, I have not I think I've been to one zoom happy hour during this entire six months. I've missed out on some of the you know, all the sort of social means that I'm like, Oh, right, that was out there. The last six months, I've sort of missed it all, you know, my kids would like me to be working a little bit less, that's for sure. That is for sure. But I think that they also understand they're old enough to understand the importance of what what I'm doing. And I hope that it's a model to them. You know, it's my daughter's Bat Mitzvah was a year ago yesterday, I was looking at the photos. And it was like looking at photos from the moon, you know, to see all those people congregated in one place. And it just seemed like it was from another lifetime. But it's the tradition in our synagogue that on the day of a child's bar Bat Mitzvah, the parents write a prayer for the child. And the prayer that I wrote for our daughter was that I hoped that she lived a life like Rabbi Heschel. And when he said when he marched with Martin Luther King, he was praying with his feet moving. And that I prayed that she lived life with praying with her feet moving. And I'm not a particularly religious person. But I feel like I am praying with my feet moving every day. And I'm working with an amazing team, I have to tell you, they're like six of us. And it's really small. And we are almost all women. Were all mom, Gen X moms. And so the one meme that I can relate to, from the beginning of the pandemic, when, you know, this is before everything shut down. And I remember seeing some means that said, it's going to be Gen X moms to the rescue because they're busy keeping both their parents home and their kids home. But at the end of the day, you know, mom's we get it done. And so we're we're all doing you know, we're all you know, monitoring our kids doing remote schooling on the side. But everyone is just super, super committed. And it is incredibly gratifying to see what a mark we've already made. And the more I learn, the more I am focused on what needs to happen. And so we see more and more of a roadmap, and that's helpful.

Alison Hall 49:50

One of the slogans throughout all of this has been alone, but together and from our discussion, I mean, we all know that COVID especially having it is incredibly isolating because you have to be literally so isolated. But you have created something and a place for people who are going through something completely alone and by themselves and isolated, probably one of the most isolating experiences anyone who has COVID has ever had. You've created something where they can feel less alone. That really powerful.

Diana Berrent 50:26

Yeah, they're connected. I mean, we need connection. We, I mean, this is not been normal. You know, we've been stuck with the same few people in a house if you're lucky. I mean, a lot of people are home alone. But even if you're with a few other people, look, there's a reason why the biosphere didn't work. No one's supposed to spend that. I mean, I love my family. But no one's supposed to spend that much time together. Um, yeah, no, it is. It is truly Look there, I try to look for for the silver linings of what positive can come out of all of this, there's been so much loss, so much devastation, so much that will take decades to rebuild. And some that can't be rebuilt. I mean, you can't rebuild the lives lost the 200,000 lives lost the people whose health is, you know, irreparably damaged. But it's heartening to see things like, you know, science move forward at a faster clip, not not careless science, but real science. And, you know, we're seeing biotech companies, you know, we're partnered with the blood bank for partner with the biotech companies, we're partnered with the universities, we're sort of the hub in the middle of the bicycle wheel of COVID. We are owned by nobody, but partnered with everybody. And what's beautiful to see is that they're all working together. They're working in coordination, there's collaboration happening, yes, you know, we do need more peer reviewed studies, and we need that peer review process to go a little bit faster. So there can be, you know, a few, maybe a few or clickbait headlines that that make the news. But having this huge, you know, flow of, of information being released, is liberating to the scientific world. And I have so much respect for these scientists who everyone I've met, literally, I mean, nobody was a COVID. Expert before March, but they all turned their practices, their studies their labs around on a dime, to come together to do this. And, you know, so meet, maybe, you know, maybe there are a few good things that will come out of this. It's hard. It's hard sometimes to say it.

Alison Hall 52:54

Yeah, definitely. But it's easy to see it when you scroll through your group and see the changes that are being made the studies that are being done, and the people just connecting, it's it's really honestly beautiful. Any last words? for maybe anybody who is feeling alone feeling like they have COVID? Or they they did and they're still just not getting over it? I think that there are so many people out there, don't even realize that, you know, this community of people that are out there?

Diana Berrent 53:27

Absolutely. Um, you look, if you first of all, if you haven't had COVID, please fear it, like the devil. Assume that everyone around you is already infected, as are you. And every single person you infect is either your best friend or your grandmother. You know, okay, now for the people who did have it. And if you're not feeling better after a few weeks, it's not in your head. This disease is much more insidious than we realized. We thought it was a respiratory disease. It's a vascular disease. It is affecting every organ. Please go seek medical help. You deserve it. If your doctor doesn't take you seriously, find another doctor. Come join us. It's survivor Corps. We're an open group on Facebook. We're open to everybody whether or not you had COVID and please visit our website, www dot survivor core.com that's crps like the Peace Corps, Army Corps, and download our study and bring it to your doctor so that you can better advocate for yourself if they don't believe you. And so that you can highlight go through our list of 98 symptoms. I bet you'll see a lot of very similar things that you thought you were the only one experiencing and you are not alone. You have a huge group of people there at your back who are there for you fighting along with you Join us and we will get this done together, we have no other choice

Alison Hall 55:03

day. And thank you knowing that there are people like you in the world working on this and fighting for this makes me feel a lot better. And I'm sure you're having that impact on so many people. So thank you. And thank you for sharing the story with me.

Diana Berrent 55:19

Thank you so much this was such an honor.

Alison Hall 55:29

What do you hope, besides the scientific angle, or maybe including the scientific angle really comes from this group and more broadly, from this time, I think

Diana Berrent 55:39

that if there is a way that you can give back, it is, you know, it is healing to everybody. It is healing to you. It is healing to the world. Right now, as a country, as a globe, we are being told that the best thing that you can do is to literally do nothing. And yeah, part of that is true, definitely don't go to the bars. Don't go to any inside restaurants. You know, don't go don't go to any parties. That is true. But we are hardwired as human beings to want to help telling us to do nothing goes against the very grain of who we are as people. And so whether it is donating plasma or signing up for a study, or just a kind word to another survivor corps member or to a neighbor. It is anything that we can do to improve the situation that we are in is therapeutic for us for the world. It is it's the only way that we can move forward. It's the only way we can start to heal.

Alison Hall 56:55

Thanks for listening