ayers_mar_2TSCP

[0:00:00]

Amanda:             Hello, today is Tuesday, November 16th, 2021. My name is Amanda Riggenbach, and I am the manager for the Tumultuous 2020 Oral History Project at the Abraham Lincoln Presidential Library and Museum. I'm currently at the library in Springfield, Illinois with Mark Ayers, the Illinois State Director of the Humane Society. We're going to be talking about his experiences throughout the COVID-19 pandemic for the Tumultuous 2020 Project. Good morning, Mark.

[0:00:30]             It's good to have you here.

Mark:                    Good morning. Thanks for having me.

Amanda:             So we start with the basics. When and where were you born?

Mark:                    1985, July 3rd, right here in Springfield, Illinois. Lifelong Springfield resident.

Amanda:             And a lot of people who've that I've interviewed who've lived here, grew up here, it sounds like there's a pretty tight knit community that keeps them here.

Mark:                    That's very true. I mean, I've been living here my whole life with my family, my sister, my dad, my mom.

[0:01:01]             I have all my friends are located here. We have some families still located here. It's a very tight knit community here in Springfield. A lot of colleagues are still around here in Springfield. It has a small town feel with a medium city vibe to it. So I love it. I love Springfield and I can't imagine living anywhere else but here.

Amanda:             And so what were your parents occupations?

[0:01:26]

Mark:                    My father actually worked for the Illinois Environmental Protection Agency, the IEPA. He worked there for several decades. He just retired not that long ago as an engineer. My mom was mainly a stay at home mom for most of her life taking care of my sister and I. However, she had some part time roles in her early career as an orthodontist assistant and then she also worked part time eventually at the cardiac cath lab at Saint John's Hospital as the receptionist over there.

[0:02:00]

Amanda:             And how would you describe their personalities?

Mark:                    My dad is probably the typical engineer, soft spoken, very nice man, not a mean bone in his body, very intelligent, very smart, kind of quiet, but goofy in his own way. My mom was kind of the opposite, very loud, boisterous, outgoing, just very personable, very opinionated.

[0:02:31]             But both were family loving, family oriented people, loved children, loved us especially. They were just great parents I grew up with throughout our childhood.

Amanda:             So it's true when they say opposites attract?

Mark:                    That's fair to say that. Yeah, opposites did attract, especially in this case.

Amanda:             And what was your childhood like?

Mark:                    My sister and I had, I think, an ordinary good childhood.

[0:02:58]            We grew up on the far west end of Springfield. We grew up primarily living in the woods. We had tree houses out there, a swing set in the woods, trampoline that we were always playing with. We had forts in the woods. We would go hiking back there, play in the stream. My sister and I are very close. We still are close as of this day. We had a lot of childhood friends in the neighborhood that would come over and play, ride bikes.

[0:03:25]             It was your standard American typical childhood. I think there was no complaints from us. I miss it in a lot of ways. It was a fun childhood. I do miss those days quite a bit.

Amanda:             I imagine having a whole forest to play in, there's a lot of room for imagination and that type of fun.

Mark:                    Oh yeah. I mean all kinds of role playing, things like that. I mean it was such a good time, back in those days to just go back in the woods after school and play and play in the water. It'd get pretty dirty.

[0:03:57]            My mom would always kind of get on us. We'd track mud in the house, doing the things that kids would always do, going inside for snacks and tracking in dirt and mud and everything else. But it was a blast growing up back there at those times.

Amanda:             And what would you say some of the key values that your parents raised you with?

Mark:                    They raised us to just do what we wanted to do, especially as professionals. They never steered us, one way or another, to get a certain occupation.

[0:04:27]             They wanted us to go to school for sure, wanted us to go to college, get an education, which we did. They raised us with traditional, I think, American values, honesty, integrity, just respect for other people, respect for neighbors, respect for the elderly. I mean, just some common core values that I think we still see today being passed on to people. But the values were just hardworking.

[0:04:55]            They were hardworking parents and they wanted to instill those values in their children as well.

Amanda:             And did you go to – I'm actually trying to think about what are the high schools in Springfield. Was it Springfield High School maybe?

Mark:                    We actually grew up on the far west end of Springfield so we went to the Pleasant Plains High School District, also Farmingdale Elementary, Farmingdale Middle School, and the Pleasant Plains was the high school associated with that.

[0:05:24]            So we went to the Pleasant Plains School District and I graduated high school in 2004 and had a graduating class of just 98 students. So it was a very, very small tight knit community in high school.

Amanda:             And so where did you go to college?

Mark:                    After high school I fell in love with biology, always was kind of into reptiles and amphibians.

[0:05:52]             And so I went to Lincolnland Community College to study biology and I think I was minoring in chemistry and physics and so I think I got 30 credits at Lincolnland Community College and I transferred to UIS, University of Illinois Springfield and picked up my bachelor's in political science actually. I switched from biology to political science while at UIS but graduated there from UIS.

[0:06:23]

Amanda:             And I think in our pre-interview we talked about how it was a trip to Belize that sort of shifted your direction from biology to political science.

Mark:                    Yeah, Belize, geez. Belize is one of those countries, it's in Central America for those that don't know, just south of the Yucatan. And Belize is, it's a country that I think changed the trajectory of my life in a lot of ways. It was the first time that I even left the country by myself, which you know that was huge in itself.

[0:06:55]             It was the first time I ever went to a new country at all outside the United States. It was the first time I ever traveled alone, even though I was with a group of students at Lincolnland. But I had went down there as part of a course to study ecology with Professor Dave Cox who still teaches to this day. And Dave Cox still takes students down to Belize doing different tracks on the sea or in the rainforest.

[0:07:23]             But it was there in Belize, that first trip that just changed my whole outlook on life and that's kind of what prompted me to fall in love with culture and people. And so when I came back from that trip, that's actually why I changed my major soon after that to political science.

[0:07:44]             And Professor Cox and I still joke to this day about that trip was supposed to have gotten me to deepen my studies in biology, but it actually made me change it to political science. But I went down two more times with him to Belize auditing the course, doing the work of the students, but also eventually branching off on my own, finding non-profits to work with, volunteer work to do. And I think as of this day, I've been to Belize 18 or 19 times, but it all stemmed from that very first trip through Lincoln Land.

[0:08:20]

Amanda:             So you've gone by yourself then to do non-profit work?

Mark:                    Yeah, yeah, eventually it was all non-profit work, working with local non-profits that were already there. Or eventually, I found a guy that lives here in Springfield by the name of Bruce Stratton, who's a local attorney, but he did have an active NGO in Belize called the Belize Non-Profit Belize Community Service Alliance.

[0:08:49]            And so we began working with that group, working on houses, installing ceiling fans in classrooms, upgrading classrooms with different infrastructure, working on homes that were hurricane-resistant, green infrastructure for classrooms and houses down there. So a lot of different work that we were doing in Belize, but always geared towards education and addressing poverty.

[0:09:17]            And so I spent the bulk of my time going down doing that, but also doing the traditional touristy things with spelunking and cave tours and exploring the river systems and still nerding out with my previous biology day stuff.

Amanda:             Sounds like a great trip to take with that community aspect, but also the fun aspect and then the science aspect. It sounds very wholesome.

[0:09:46]

Mark:                    It's very wholesome, yeah. And it's kind of gone full circle, because utilizing those, my former days in biology and what I learned in bio and through Professor Cox and using that knowledge to what I have now in my current occupation, which is advocating for animals across the country and especially here in the state. So I'm using that science-y background and looking at case studies and in some cases, population densities of animals.

[0:10:16]             And there's a lot of correlation between what I did then and what I'm doing now and kind of putting the science back in political science and using political science to advocate for animals. It's really cool how it's gone full circle in a lot of ways.

Amanda:             That sounds very interesting. And so what was it like then, that transition from biology to political science?

Mark:                    It was one hell of a transition, because in biology – I had switched so many times, trying to figure out what I wanted to do with my life.

[0:10:49]             And so I went from biology, I think I then switched to a major in chemistry. I then wanted to minor in physics. I couldn't really figure out what I wanted to do with that major until Belize hit. And so when I came back and I eventually switched to political science, it was nothing transferred over. It was like starting from scratch with this brand new major. I mean, some of the core classes carried over in terms of credits, but I was really starting from scratch in a lot of ways.

[0:11:21]             And was learning about the political process and politics and everything that goes into that. It kind of turned everything upside down, but in a good way. And so learning the political systems, not only here in the country, but political systems internationally as well, I found deep interest in. So it was quite a switch, but it was a switch that I was happy to make.

Amanda:             And was that on top of transferring to UIS?

[0:11:48]

Mark:                    All that happened around the same time. Yeah. I think when I switched to UIS, I was still majoring in biology. And so I took a few classes still at UIS, but it wasn't long after I went to UIS that I finally did make the official switch. And it was the right timing and the right place to do it, given UIS has such a stellar program for political science and our proximity to state capital and local government. It was a very easy transition to make.

[0:12:18]

Amanda:             Absolutely. And what was your first position outside of college?

Mark:                    When I was in college, I was eventually looking for work, and I found work right there inside the university system. I began, I think my title was support staff or maybe even a legal analyst, although I'm not an attorney. That was just what my job was titled as. I worked for the Illinois Institute for Legal Legislative and Policy Studies that's housed there at the University of Illinois System in Springfield.

[0:12:52]             And just really helping out staff with project support, clerical stuff, organizing data, tabulating projects and data sets. I worked there for a number of years before –  once I graduated I was – at the same time I graduated I was doing an externship working on a local campaign here for a candidate running for Congress in the 18th Congressional District.

[0:13:20]             And so that's kind of the first time I began using what I learned in college and applying that to an externship. And the candidate at the time was DK Herner who was running at the time against Congressman Aaron Schock. And it was a very eye-opening experience working on that campaign. It was the first time I ever worked on any campaign like that. And then, after that race wasn't successful for my candidate – we lost that race pretty clearly.

[0:13:51]             But then I also went –  after that I began working as an intern for the Lieutenant Governor's Office. Lieutenant Governor Sheila Simon who worked directly under Governor Pat Quinn. And I worked my way up there as an intern. I then became an actual paid employee as a policy analyst in that office and then after two or three years of working there I worked my way up to eventually become the policy director in that office for the Environment and Rural Affairs.

[0:14:27]             It was a very big transition in four years working in that office from intern to policy director.

Amanda:             And I'm sure that, given your dad's experience in the IEPA, he was probably proud of you for going into something not the same thing of course since policy director and engineer are very different.

Mark:                    Yeah, he was very proud. My mom was very proud. It was a line of work that was very public.

[0:14:55]             You know, working in public office. And the work that we were doing in that particular office was chairing – the Lieutenant Governor chaired a lot of coordinating councils under the governor that had stakeholders from every state agency you could name. A lot of alphabet soup, IDNR, IEPA, Department of Ag, and the Illinois EPA contacts that were representative of these particular boards.

[0:15:23]             My father already knew them so he knew a lot of people that were serving, in particular fashions on these coordinating councils. So he was part of the work that I was doing. My mom was especially proud, working in public office and kind of dipping my toes into the public policy arena.

Amanda:             I imagine that once Quinn's term was up and he'd lost that, maybe it was his second election, did that mean you were out of a job?

[0:15:53]             Yeah, we had worked – all of us that were working in that office were trying to help him, his re-election campaign, and working very hard to get him re-elected. And it wasn't successful. He lost that race, pretty clearly to Governor Rauner, who took over in January of that next year. And so yeah, what that meant was everyone that worked in Governor Quinn's office and Lieutenant Governor Simon's office was immediately out of a job.

[0:16:22]             And that's the case, we knew that would happen. That's nothing different than what happens in every other race, but we were all kind of cleaned out of that office once the new governor took over. And so I was out of work for the better part of six months, looking for work. And to me it was a huge blessing in disguise. I mean, it sucked, getting kicked out of office, but it wasn't unexpected.

[0:16:51]             But I was looking for a work and didn't know where I wanted to go. But it was at that time that I saw the opening for the Humane Society of the United States where I'm at now. And so kind of getting booted out of office was really a big blessing in disguise because without that I wouldn't be here now and this is the best job I've ever had. I've been working here for six and a half years. So huge, huge blessing in disguise getting cleaned out of office.

[0:17:20]

Amanda:             Who would have thought?

Mark:                    Exactly. Yeah.

Amanda:             And so what exactly is the work that you do as the director?

Mark:                    So as director in Illinois for the Humane Society of the United States, my job duties vary kind of day to day. I'd say 70 to 80% of my work is legislative and lobbying, which is great, again, being here in Springfield, being so close to the state capitol. I spend really January through May at the state capitol during the regular spring session representing HSUS and really representing animal welfare in general at the state capitol.

[0:17:59]             Initiating legislation that benefits animals, whether it's companion animals, or dogs and cats or equines. Working on wildlife issues, so like issues like bobcats. We want to stop the bobcat hunting. Working on exotics and elephants and giraffes, threatened endangered species.

[0:18:19]            We're really doing all of it at the state capitol. So lobbying for that six months out of the year, but also blocking harmful things from passing. Bad legislation comes up every year at the capitol that needs to be stopped. But also when we're not in session, it's traveling the state, having meetings, meeting donors, passing a lot of local ordinances in different communities for dogs and cats or wildlife, and just kind of making the case for statewide legislation the following year.

[0:18:51]             And then it's also ramping up for the next year's major legislative session, which it's always nonstop work, either leaving a legislative session in May and then ramping up the next session that starts again in January. It's nonstop legislative work, but I love it, kind of combining public policy, political science, life sciences into this job.

[0:19:17]            It's a perfect job for me.

Amanda:             That's exciting to hear. It's always good to hear when people have a good job. Do you think that your background with this very compassionate field has impacted the way that you've responded to the pandemic?

Mark:                    Maybe in some ways, yeah. I mean, I think a lot of my colleagues, my coworkers who were based in D.C. primarily, and I think in the animal welfare movement, you do find a lot of compassionate people in general.

[0:19:50]            That's the nature of the movement. And so I'm surrounded by people that care a lot for each other, care a lot for their families, care a lot for people that they don't even know. And so I do find myself kind of insulated in this work by people who just generally care about people. And so my workplace and my staff took the pandemic very seriously from the start.

[0:20:16]             And so, yeah, I think that working here, it did kind of shape my view in some ways on the pandemic, but it was also just the general nature of the animal welfare movement, just donors and advocates. These people tend to care about things like that, even though it's not animal welfare related. It involves having a heart and caring for others. And so, yeah, I think this work and the movement itself had a lot to do with my general attitudes and feelings towards a pandemic.

[0:20:49]

Amanda:             And before we start going into the pandemic, which is the focus of the interview, I thought it would be helpful if you give us a better sense of who your mom is – was. You mentioned that she had rheumatoid arthritis.

Mark:                    Yeah, my mom, she passed away at 66 years old. But in the last couple of decades of her life, she was combating very severe rheumatoid arthritis and had numerous joint replacements entirely.

[0:21:23]             We called her kind of jokingly the bionic woman because she had so many artificial joints in her from her shoulders and on down. Very severe case of rheumatoid arthritis. And at the time of her contracting this she was working as the receptionist at the cardiac cath lab at St. John's and that's what ultimately led to her having to to quit because her pain became so bad.

[0:21:51]             And the disease became so widespread throughout her body that she just couldn't really walk and perform the same way that she did. And it was also at a time where you know being diagnosed with rheumatoid arthritis, there wasn't a whole lot on the market to stop that disease from spreading like there is now. You know now when you get RA there's all kinds of cutting-edge technology and drugs that can basically stop this progression from eating its own tissue and eating the joints.

[0:22:26]             And none of those were really available when my mom caught this and so it really ravaged her body. And the drugs that she was taking at the time the steroids you know made things worse too. The steroids made her feel better but also it ate her joints at the same time and kind of ate away at the density of her bones which it's just you know it was kind of a snowball effect you know as her life continued.

[0:22:51]             But ultimately she was taking some drugs that she could live with and it was managing the pain more or less but she still had a lot of bad days. But aside from rheumatoid you know she had a very positive outlook on life and she just loved raising my sister and I. She became a stay-at-home mom for the most part taking care of my sister and I. And so we were very close to my mom having raised us you know every day while my dad was at work.

[0:23:23]            And she just enjoyed that. She was very outgoing and happy. Despite this diagnosis you know in her later years she was just a great woman to be around and just cheerful in a lot of ways. Towards her later years you know very opinionated in a lot of ways on politics and the pandemic especially. Was really liked by a lot of people. Not anyone would have a bad thing to say about her.

[0:23:57]             And I think her outlook on life changed even more with the birth of my sister's triplets. And so the triplets are now five over five years old and the two girls and a boy, fraternal triplets. And my mom and my dad just lived for them. They were always over at my sister's house babysitting them taking care of them, or they'd be at their house spoiling them. So you could just tell a visible difference in their life when those kids were born. They loved being a grandma and grandpa.

[0:24:33]

Amanda:             It's all spoiling and none of that responsibility right?

Mark:                    Exactly. Yeah they loved coming over to their house and getting you know snacks and candy like maybe they wouldn't get at you know their mom's house. But yeah doing the things that grandma grandpa should be doing which is spoiling the heck out of their their grandkids.

Amanda:             And in a normal year how often you know would you see your parents?

[0:24:58]

Mark:                    You know in a normal year it was it was quite often. Either they would you know come over to my apartment when I lived in an apartment or I'd be at their house all the time just hanging out. They'd be at my sister's home. We all lived within five ten minutes of each other and even even as of today I mean we're all we all live within five ten minutes of each other.

[0:25:20]             So very close proximity just a short drive away to go home and see our parents and have lunch or dinner over there or just hang out on the deck and swim. So during normal years yeah very frequent visits from them whether at my house or their house.

Amanda:             And it's the same with your sister then?

Mark:                    Same thing yeah. She was always over there or vice versa. Especially when she had the kids it was my parents were always over at her house babysitting more often than not. Whenever I would call home and I couldn't reach them it was pretty much a given that they'd be at my sister's house babysitting the kids.

[0:25:59]             And so I'd go over there and hang out with them and or at least call and get a hold of them. And big surprise, they're at my sister's house babysitting the kids.

Amanda:             Very nice. And now getting into the beginning of 2020 did you have any new year's resolutions or big goals?

Mark:                    You know in 2020 no I didn't. I was never the type to have resolutions.

[0:26:27]            I always found resolutions a little silly. I if I had a goal I would you know try to meet it you know throughout the year or whenever. Just plan for a goal, I would just try to achieve something as best I could at any point in the year. So I never had any resolutions. I don't think my family was that big on on resolutions. But even if we did have resolutions in 2020 everything was kind of turned upside down, kind of in the you know January through March when the pandemic was kind of becoming a thing in the United States and then really becoming a thing in the state of Illinois, I think around March of 2020.

[0:27:09]

Amanda:             Yes definitely. And we'll get into that, those specific dates. But did you have any plans for like traveling? Were you hoping to go to Belize?

Mark:                    Well, I was always wanting to go back to Belize. Yeah I think in 2020 I probably did have some light plans to to go back to Belize because at that point I hadn't been back down there for a couple of years which two years away from Belize is a long time for me to not be there.

[0:27:40]             And so I probably did have some rough plans to at least go back and visit. And at the time I was engaged to my – at the time my fiancée. We had been together for nine years at that point. And we did have plans to get married in I think 2021. We had plans to get married but were also considering 2020 as well.

[0:28:06]             We liked 2020 because 2020 just sounded so easy to remember. You know we never forget that anniversary sometime in 2020. And so I think in early 2020 we were thinking of where we wanted to get married at, if that was the right year to do it, and would we travel for it? Would we go to the Philippines where she was born and raised?

[0:28:29]             A lot of questions arising around that at the time and just some rough plans of maybe getting out of the country whether it be Belize the Philippines or somewhere in the United States. But yeah everything kind of turned upside down anyway in a couple of months after the pandemic hit.

Amanda:             And what was a typical day like for you pre-pandemic?

[0:28:56]

Mark:                    Pre-pandemic I was fortunate that in my position I was remote. And so I always got to work from home anyway. I have a home office. And so I really I didn't know or couldn't tell any difference between no pandemic versus full pandemic working from home. Because I was used to that anyway. And so my normal day would just be getting up and getting coffee and eventually going to my office and sitting down at my desk and doing regular day-to-day things.

[0:29:32]             And when we were in session I'd head to capital and be over there eight hours a day or nine hours a day depending on their schedules and would be busting my butt over there passing bills. Or I'd be traveling the entire state passing local ordinances or meeting donors in Chicago. I mean that was kind of my routine for the last six and a half years was just traveling Illinois and being around people.

[0:30:01]             And whether they be professionals at work or donors of ours that I was meeting it was a lot of busy work, face-to-face work when I wasn't at home.

Amanda:             And did you know much about the virus in the early months of 2020?

Mark:                    No, I didn't. I think when it was just becoming a thing, whether it was some of the cases that we heard about in New York, it was concerning to hear, but it was no more concerning to me at the time than hearing about SARS and West Nile and things like that.

[0:30:38]             We had heard about some of these zoonotic outbreaks before, and while they were serious in nature, they weren't really catastrophic in causing widespread deaths and illness and landing people in great volume in the hospital. And so when I heard about it, the cases in New York, it wasn't concerning at the time.

[0:31:00]            And I think eventually we heard about one or two cases springing up in Illinois, the first case I think in Chicago. And even then it was, well, that sucks, but it's probably not going to make its way down here. Or even if it does, it won't be that big of a deal.

Amanda:             Yeah, so January 30th was the day that the World Health Organization declared COVID a public health emergency. And then that was the same day that the second case of COVID was found in Illinois.

[0:31:29]            But again, it was up in Chicago, so it was very distant. And so some of those key dates is March 11th is when WHO declared COVID a pandemic. And then March 13th is when then President Trump declared a nationwide emergency and Governor Pritzker closed the schools. And then March 20th brought about the stay at home order from the governor's office, which was supposed to initially last from March 21st to the 7th of April.

[0:31:58]            And by this point, there was 585 cases in Illinois. So things started escalating relatively quick. What point did the pandemic start to feel real?

Mark:                    I forget the exact date. I know it was in March. It was the day after the St. Patrick's Day parade was scheduled to go on in Springfield. And I think we still had the parade from what I thought.

[0:32:27]            Maybe it was canceled. It may have been canceled, but I still went out with my friends because we were like, well, should we be worried? Is this thing real? Is it down here? We just didn't know enough at the time. And I certainly didn't know anyone that had gotten sick. And I just kind of thought, well, maybe it's a bad flu. And so I still went out with my friend to some of the bars in Springfield and had a great time and, went home that night.

[0:32:59]            And I believe it was the exact next day that Governor Pritzker ordered, it was either the statewide shutdown or he had ordered the schools to close, maybe one of the two. But it was certainly in the middle of March where that happened. And the next day I was like, that was probably a bad idea to go out. Had that have happened before, we wouldn't have gone out. And I didn’t know that it was that serious. It was that next day. And I regretted going out the day before because, bars were packed at the time and there were so many people downtown Springfield.

[0:33:33]            And I just didn't think it was that big of a deal at the time. But it was an instant regret the next day when we realized, oh, crap, this is a big deal.

Amanda:             And what were your thoughts then at the beginning of the lockdown, if you remember?

Mark:                    You know, after the governor locked down the state, it was like a light switch. that's when I took it very seriously.

[0:34:02]            And my family took it very seriously. And most of my friends took it very seriously. most of our contacts in my family were in Springfield. And even though we felt kind of isolated from – the hotspot at the time was in Chicago – we still felt that we needed to protect ourselves and really protect my mom. And I think that was a thing in March when this thing became real, it was I wasn't so much concerned about myself or my sister who were young and unhealthy.

[0:34:35]             It was protecting my mom, who we knew was immunocompromised with rheumatoid arthritis. And if she gets a flu or anything, it was bad news for her, you know? And so when, when COVID was becoming a big thing in Chicago and eventually you saw the heat map, it was coming down further and further and further, we got more and more concerned about keeping her isolated and keeping her safe.

[0:35:00]            And so I think towards late March, early April of 2020, everything changed. It was no contact with my parents, unless it was outside or something. And no hugs, no touching. Yeah, everything, it was like a light switch. It was keep my mom and my dad as safe as possible from contacting with us, but also contact from the outside as well.

Amanda:             Yeah. And so the, at that time, the feelings were mostly just concerned for your mom?

[0:35:35]

Mark:                    Yeah, it was concerned for my mom. And I think there was – at the time there wasn't really any science or data yet about how it affected kids, you know? And so I think there was still a lot of concern for the triplets, but yeah, everything was about mom, keeping her, keeping her safe. And this was at a time when we began hearing more of this name, Dr. Fauci in the news.

[0:36:01]            And I think that was a table name that everyone began to know. And that name was either a source of comfort – for us, hearing from him – or it was a source of worry for a lot of people. But we found comfort in his daily updates. We found comfort. Governor Pritzker and Dr. Ezekiel, I believe was doing daily updates on COVID and we found a lot of comfort in their message and that the state was taking all the necessary precautions to protect each other from this pandemic.

[0:36:36]             And so everything was about protecting mom because we knew that if she got sick, it would be bad news. And we knew that because she was taking a specific drug called Rituxan that literally lowered her immune system so that her body would not attack its own joints. And that's how the drug worked. And she got that drug I think every six months via infusion.

[0:37:05]             You know, like a two hour drip in a hospital setting. And so we were always worried about my mom's lowered immune system and her immune response to anything, not just COVID. So we tried protecting her as much as we could throughout the pandemic.

Amanda:             And what type of precautions did you guys take? Did you see each other? When you saw each other, was it outside?

[0:37:32]

Mark:                    Yeah, I think, from, from March up until I'd say, June of 2020, it was –  for me, we had kind of two bubbles. It was my bubble and my parents, and then my sister's bubble and my parents. I stopped coming over to their house and they stopped coming over to mine because I was still around different people, my wife was around different people, and I didn't want to expose my parents to people that I had been around.

[0:38:02]             And so we stopped all face-to-face interactions indoors. When I would go over to their house on occasion, maybe to drop off groceries –  I did do that time to time so they didn't have to go out. I dropped things off outside. We were big coffee drinkers, and so – it was in the spring or summer. And so they could, come outside and we would sit outside, but we'd sit six feet apart. Or if I did go inside for some odd reason, I would put my mask on and I would stay well over six feet apart from them.

[0:38:40]             I mean, it was doing things by the book in terms of social distancing with me and my parents. The other bubble was my sister and the kids and my parents because they babysat so often with them. And so I, I wouldn't really see my sister much at all either because I didn't want to expose her, who would then expose my parents.

[0:39:01]             And so my sister had pretty common contact, physical contact with my parents because they were babysitting so often. And so they got to see each other quite a bit, hug and touch and all those things. Whereas I, as much as it sucked, I kept them very distant, for the better part of six, seven months because I just didn't want to expose them to anything that I might've picked up along the way.

[0:39:28]

Amanda:             Was that difficult, being the one who couldn't be there physically?

[0:39:33]             Yeah, it was tough doing that, but we got through it because we knew that it was the right thing to do. And we knew that it wouldn't be forever, because we were hearing about at the time, vaccines being developed and that there was light at the end of the tunnel with this. And the science on masking was was really getting out there as the months went on. Even double masking was becoming a thing.

[0:40:07]             And masks worked and mask mandates worked. And when you saw mask mandates in certain states, you saw positivity rates drop. I mean, it was a positive relationship between wearing mask and seeing a decrease and infection rates. And so we knew that eventually someone would figure this out and that vaccines would eventually be available and rates would drop.

[0:40:32]             And we would go back to normal at some point. And so while it sucked not having physical contact, we knew it wouldn't last forever.

Amanda:             Do you have any specific memories of meeting them outside and any type of coffee dates that were particularly fun or something?

[0:40:57]

Mark:                    It was I think in the summer, we were opening up, they had a pool, an above ground pool, and even though we were outside, we still wanted to be as part of it as possible. My dad actually worked on the pool deck. He was going to do it anyway, but he expanded the pool deck size to make it bigger.

[0:41:22]            And it was good timing because when I would go over there in the summer and open up the pool, I'd sit at the far end of the pool and he'd sit at the other end. We were probably 12, 13 feet apart, cracking open beers and sitting that far apart. My mom wasn't very big on swimming or being out in the sun for that long, but the upstairs pool deck overlooked the pool, and so she'd come out and wave at us from above or drop down chips and drinks and sodas or beers.

[0:41:54]            It was kind of funny because we were all there at the house, but we were still sitting pretty far apart. I remember our neighbor saw us out – he's an elderly guy and never really, I don't think, understood the seriousness of the pandemic. He came over one afternoon and sat on the pool deck, and sat fairly close to me, I think. We did this visible moving our chairs away from him.

[0:42:22]             I don't think he saw me doing that, but it was like we had gotten so used to not being that close to someone, and when someone outside your bubble comes next to you, you feel uncomfortable. And so even though we were outside and we thought, well, it's probably safe, I still feel uneasy, someone being within six feet of me. And so, I think I went and got on a pool raft in the pool to get away from my neighbor that came over. But, otherwise it was coming over and, my mom having a cup of coffee on the patio table outside on the driveway.

[0:42:58]            So I could get it, pick it up, drink it, and, kind of go back to my car and stand, while she sat down and we’d talk probably 10, 12 feet apart, you know? But that was that had become the norm, I think, for three, four or five months of doing that. And luckily it was spring and summer where that was happening. And so the weather was getting nicer and we could do those things.

[0:43:25]            You know, had it been winter, that was that would have been a more difficult time to do those things, especially outside.

Amanda:             Yeah, most definitely. And so you had mentioned that it was an early summer of 2020 that Illinois moved to phase two. So that meant the restaurants were starting to open up with outdoor seating. Did you think that Illinois was ready for this?

Mark:                    Yeah, we were we were and still are a family that that listened religiously to the experts, Dr. Fauci and Dr. [zee kay] and our governor, Governor Pritzker. Really any health expert for that matter we listened to. And, as the months went on to late June and then into July of 2020, things were really looking good, I think, for the country for the most part. There were still hot pockets, especially down south, the southern states. But, as a state, the state of Illinois was looking better and better as each day went on.

[0:44:29]            And it was around, I'd say early to mid-July where Dr. Fauci was recommending that if you got the vaccine – the vaccines were available at this time. We got the vaccine as a family and we were fully vaccinated with our second Moderna dose, I believe, in early April. So at that time, all health experts were recommending that if you were fully vaccinated, you didn't have to wear a mask anymore.

[0:44:58]            Those that weren't vaxed, you still had to wear a mask in public and social distance. But if you were given that second dose or got the J&J, you could relax some of the restrictions. And those recommendations were echoed by our state health department as well and our governor. And so eventually in July, we began seeing each other face to face again, my parents, and no longer doing the six foot social distance rule.

[0:45:26]            And I would go back inside the home and have coffee at the dinner table again. And I think that's when things seemed normal again for us. It was a time when all the precautions were being relaxed and our state infection rates were at an all time low. Our vaccination rates were ever increasing. They were increasing by the day. And so things were looking very, very good in this state. I think restaurants opened up again for indoor seating.

[0:45:57]            And while we weren't too enthusiastic about that, we didn't want to still be around people that much. But our little bubble, our family bubble, I think, went back to normal in June and July. Things went right back to the way they were pre pandemic.

Amanda:             Yeah. And what I actually meant was in 2020, the first year of the pandemic, so when it was still relatively new.

[0:46:27]            And so that was only phase two, because in summer of 2020, the vaccine hadn't come out at that point. So that's kind of – I think I was not very clear with asking that. Because that was also the summer that there was a lot of protests with racial injustice that eventually became an international movement. And some people have found that there's that pandemic fatigue that also sparked some of these protests.

[0:46:57]            Do you have any thoughts on that?

Mark:                    Yeah. My mom, in 2020, kind of in the summer of this thing, that's when there were lockdowns, there were mask mandates. And it became this politically charged thing in the news. And there seemed to be a developing two sides to the pandemic. One side was where myself and my family sat, which was listening to health experts, listening to Dr. Fauci and the others with recommendations.

[0:47:33]            And the other side was ignoring them. And a lot of that, in my belief, was former President Trump and the way that he reacted towards this pandemic, kind of making this thing political, that tough guys don't get this disease and tough men don't get it. And it's just the flu. And it became this thing where people began protesting the most simple measures of keeping each other safe.

[0:48:05]            At the time before the vaccine was out, in 2020, it was social distance, six feet apart, wear a mask and limit your contact with outsiders. I mean, pretty simple advice from our health experts. And there were those who felt that that was tyranny. We began seeing this word in the news that my body, my choice, don't tell me that I need to wear a mask.

[0:48:35]            It's my body. I can do what I want. We began seeing a ton of extremely selfish behavior from people who were only concerned about themselves. They weren't concerned about infecting anyone else. It was don't tell me what to do with my own body, even though this pandemic was affecting everyone, not just individuals that chose not to wear a mask. It was affecting everyone. And again, there was no vaccine at this time in 2020.

[0:49:06]            And so all we had to rely on were these simple measures to put a piece of cloth over your nose and mouth when you go out, social distance and respect one another. And we found that to be pretty simple advice from people. And we saw the data that that was effective. States that did that were effective in decreasing and reducing their positivity rates.

[0:49:33]            And so my family's reaction to that was kind of getting angry at people who were ignoring that advice because we lived with someone that was immunocompromised. And why aren't we protecting the most vulnerable people in this country's population by just wearing a mask? Why was that so hard to ask? And putting a mask on kids as they go to school?

[0:50:03]            I mean, you would have thought that this was World War III that we were waging here, was something that was so easy, something that was easier than tying your shoe. Putting on a mask takes one or two seconds and that act could save someone's life. And so we began getting pretty angry at some of the talking heads in the media who were trivializing that, would be seen in large gatherings, whether for the re-election campaigns or what have you, just making a mockery out of Dr. Fauci and trivializing him and his expertise.

[0:50:43]             And by the people who were doing their own research. Some of the high school armchair scientists who thought they knew better than the leading health experts in this country. So in 2020, our family was abiding by all the things that we were being told to abide by, looking forward to a vaccine when it was available in 2021 early on.

[0:51:12]             But I think our opinions were also kind of getting more angry as those months went on and seeing more of this divisive attitude to those who didn't want to do the things that were saving lives. And then by the winter of 2020 is when cases went down a little bit, but then by winter of 2020 they started rising again and that's when it was, I think, pretty bad. I mean, the deaths were the highest that they were. Did, were you guys keeping track of the numbers?

[0:51:52]             Was that kind of a scary time, or were you pretty confident in what you were doing?

Mark:                    We kept a watch on those numbers religiously. I think we were still watching Dr. Fauci on the news. We were still listening to Governor Pritzker. And I think the governor and Dr. Izeke began doing their daily COVID updates again. Because I think eventually they were doing them every few days as the pandemic kind of lessened in the summer months.

[0:52:20]             And yeah, then as it went back up in the winter when people went back indoors and infection rates began rising again, that was a concern. And I think our family began kind of going back to what we were doing before, kind of lessening our contact again, at least my contact with my parents. I think my sister's contact with my parents stayed about the same because they were always, again, babysitting the triplets.

[0:52:47]             But I began going over to their house less again and the masks were coming back up again just to be safe and to take precautions again. But yeah, we began getting word again in winter 2020 that here we go, things are on the up and up again. And our county was kind of moving back into the red, and it's going back indoors and limiting our contact with family again.

[0:53:14]             So we were kind of depressed to see those numbers go up again in late 2020.

Amanda:             And it's more difficult when it's colder out because you couldn't necessarily sit outside for too long periods.

Mark:                    Yeah the weather was getting uncooperative and we couldn't just sit outside and have coffee or beers with my family. It was indoors or nothing at all, you know. I mean, we did talk a lot on the phone and things like that or chat and social messaging platforms.

[0:53:44]             But, as the months got colder and colder, everything moved back indoors and we just weren't comfortable meeting somewhere inside, eating somewhere inside. And it was too cold to go to a beer garden or sit outside somewhere at a restaurant. We just didn't want to do those things because in the back of our minds, it was always about limiting exposure to my mom, and to my dad who was also elderly.

[0:54:15]             But it was always about limiting my mom's exposure to any outside influence that she would come in contact with.

Amanda:             Normally would you guys spend Christmas together as we get into the December?

Mark:                    Yeah. I mean, always it was usually going to my parents' house for Christmas and Thanksgiving, spending the holidays over there, or maybe going to my sister's house and bringing gifts over there and dinner over there.

[0:54:43]             We didn't really do a whole lot of that in 2020. I don't remember even what we did for Christmas because I think we – I may have went over to my parents' house and wore a mask, I think. I'm having a hard time remembering 2020 Christmas because it seemed like such a blur. We didn't really have much of a celebration from what I remember and Thanksgiving either.

[0:55:09]             Because we were just so concerned about anything that I might have and giving it to my mom. And so I think the holidays were pretty bleak in 2020, kind of moving back indoors again and me limiting my contact with my parents and my sister.

Amanda:             And December 15th of 2020 is when the first vaccine became available, but of course to healthcare workers, long-term care facilities staff and residents.

[0:55:39]             But with it being made available to this first group of people, did that kind of bring a sign of hope to your family?

[0:55:45]

Mark:                    It really did. When that vaccine announcement was put out there that there's something out there now that it's going in arms of healthcare workers, we're going to eventually start seeing that production ramped up and given to the immunocompromised and then ultimately to the entire population in the country that wants it, it was a big sigh of relief, that there was something out there that's being put in arms that will eventually be put into my arm and my mom's arm to protect us, in the future from being infected and getting sick or die from this awful disease.

[0:56:25]             So I think that announcement was just a very happy moment for us and maybe a happy moment for the country to see light at the end of the tunnel that all these mitigations will eventually have can stop when enough of us are vaccinated with this. Whether it would be Moderna or J and J or Pfizer. We were just thrilled that it was finally out there and our day would eventually come to get it.

[0:56:54]

Amanda:             And so it was not really a question of if, but more of when?

Mark:                    Yeah. Yeah. We knew for a fact once that vaccine was authorized for healthcare workers or whether it was authorized for 65 and older or those with underlying medical conditions, we knew whatever category we fell under, we wanted to get in that line and wait our turn to get that vaccine. And that's really exactly what we did. I think our turn became available for my parents in a way and, and early of 2021.

[0:57:33]             I believe it was in the middle of March that I took my parents to get their first dose of Moderna. And it was so exciting because I remember going over to my parents' house – because I hadn't seen them in person in a long time. I went over there, picked them up in my car. I remember putting on two masks, taking a selfie. It was like I was picking up kids at daycare or school. I'm like, I'm picking up my parents.

[0:58:05]             Like role reversal, picking up my parents and taking them to get their first shot today. And they had their mask on and we went and they got their first dose of Moderna. And we got a picture of them getting their first dose. So we were pretty excited to have that. And I couldn't wait to get mine. And I think I got – we were all vaxxed around the same date, because I remember getting my first dose maybe a week or two after my parents got their first dose.

[0:58:39]             And so we were all in that kind of that timeframe. And so I think six weeks was the recommended time where you got your second, so my parents and I, my sister, were all fully vaxxed, I want to say, and by early April, we were all fully vaccinated. And so we were just thrilled that this time had finally come and that we got our second dose and that my mom and all of us were safe. We were inoculated and life can resume.

[0:59:09]             For the rest of 2021, we can go on about our day and get this awful disease and pandemic at least behind us as a family.

Amanda:             Did your wife also get vaccinated? My wife was probably one of the first people to get vaxxed because she's in healthcare. And she works at St. John's here in Springfield. And so she was one of the first people that was able to get her first dose. She also got Moderna and eventually got her second dose I think sometime in February.

[0:59:41]             So yeah our entire family bubble was fully vaccinated by early April.

Amanda:             I cannot imagine the relief and just comfort it would have been to be able to finally hug your parents.

Mark:                    Yeah, I think after we were fully vaccinated, that's a time when really things began changing, in mid 2021, with relaxing the restrictions for those that were vaccinated and yet us being fully vaxxed, going back to hugging again and sitting at the dinner table and eating dinner and lunch and hanging out in close proximity to one another.

[1:00:29]             We would go out to eat outside. We still didn't feel comfortable going inside places to eat, and so we would still try and find restaurants that had ample outdoor seating or they still had the tents up. But yeah, I think life as we knew it as a family went back to normal in 2021, especially as you approached those summer months in 2021.

[1:00:56]             We were just thrilled to be protected and thrilled knowing that my mom was safe. My mom was safe given the second dose. And that even if she caught it, she would be vaxxed and she wouldn't face any real risk of getting sick, because the science at the time was saying these things were 95-96% effective. And so we thought, well, we're good. As a family, we're good. My friends were getting vaxxed. They're good.

[1:01:29]             And everyone that I cared about was fully vaccinated by the summer of 2021.

Amanda:             Did you think that it would be difficult to get the country more vaccinated, higher vaccine numbers?

Mark:                    We were kind of seeing pockets of the same populations of the country that were bucking the original precautions. There were people that were bucking the mask mandates, they were bucking social distancing, they didn't want to do any of the things that health experts were requiring of them to do. And I think you could kind of break it down geographically, the northern states were doing fairly well.

[1:02:16]             The northeastern states were doing fairly well. Big cities were doing very well. It was the southern states that we were noticing an increase, even though the vaccine was out around 2021, in late 2021, that those states were still in the red. They were still seeing increased numbers. You saw very low vaccination rates in those states.

[1:02:45]            And when you saw low vaccination rates, you saw high infection rates. And I mean, to no surprise. They were still the ones not wearing masks and the ones that were not listening to guidelines. And so those are the states that were still not just in the red, but there were states that were going in the opposite direction as states that were seeing increased numbers in vaccination rates.

[1:03:11]             And so Illinois was probably one of the best states, in July of 2021. It was almost like COVID was becoming, I wouldn't say non-existent, but it was becoming a thing where it was becoming more and more rare to find in our populations. So it was frustrating as a family to see people still refuse to get a vaccine that was so effective and put out there so quickly, by scientists and virologists that was getting in the arms of people to protect them from infection and death, and they were refusing that.

[1:03:54]             So that was becoming a frustrating part for our family as well.

Amanda:             And so then as you were saying, it was June 11th that Illinois moved into phase five, which basically eliminated most of the restrictions if you were vaccinated. Did you guys –  I mean, was the pandemic over? Is that how it felt? Yeah. I think around June. Yeah, definitely in June, it was over for us.

[1:04:24]             We were fully vaxxed by then and numbers were going way down in the state. I think Sangamon County where we live, the rates were going way, way down and we saw increasing numbers of vaccination rates. So we just felt very comfortable in June of 2021 that life was going back to normal. And I think it was in June that my parents wanted to go and plan a visit to a family friend that we all knew very well growing up.

[1:04:58]             But they lived in Mississippi, and the woman that they were going to go visit had just lost her husband. He caught COVID. He made a recovery, but ultimately passed away to other things that I think COVID may have complicated health wise for him. So my parents were going to go down to visit this woman and kind of console her and make her feel better and get her house in order.

[1:05:28]             But when they were planning for this in June, they wanted to go down in July to go visit her in Mississippi. And again, this was still at the time where that state, Mississippi, was the opposite of Illinois.                 It was just getting worse and worse. And so, my family, my sister and I and my mom and dad were uncomfortable planning a visit to Mississippi because of the infection rates and that they were bucking all of these trends from the start.

[1:06:02]             However, my family was kind of – our concerns were put to ease when my mom's own rheumatologist cleared her for travel to go to Mississippi and said, well, as long as they're fully vaccinated, you're fine. Go and have a good time. And being the family that has always listened to health experts, we thought, well, he must know what he's talking about, and there's there's no concern in going down there.

[1:06:33]             And so my family did go down to Mississippi, my mom and dad, to go visit this family friend. And the middle of July, they drove down there to go visit her. And I think that was – the ultimate regret was sending them down there because, that's where we realized that they picked up COVID in Mississippi. And that that trip is what we still grasp with was. We should have not allowed them to go down there for that. But we didn't know at the time.

[1:07:05]             There wasn't any evidence to keep them here. And in July, when they were going down to Mississippi, the Delta variant really wasn't even a thing. It was just kind of getting on the radar and no one even really knew what it was, this new variant that was out there. And so this thing with breakthrough cases, we didn't even know what that was at the time. This thing about breakthrough cases. And had we known what we know now about Delta and breakthrough, we would have never sent them to Mississippi.

[1:07:44]            But at the time, when our state was looking so good, mask mandates were going away, our state was opening back up, and the science was if you're fully vaxxed, the mask can come off. You're fine. And so everything that we were told by medical experts was, you don't have any reason to be worried about your mother being immunocompromised because her own rheumatologist said it's OK to go.

[1:08:12]             So they went, and ultimately, that's where she got sick and she caught COVID so fast while she was there, was only there for four days. And on the ride back home, my mom had literally every single COVID symptom that is on the book for COVID-19, with the extreme fatigue, the aches, the body pains, the nausea, extreme chills. I think my mom, she had every symptom that came along with COVID-19.

[1:08:50]             And so when when they got back and we heard that my mom wasn't feeling well, my sister and I, we were concerned about this, but we thought, well, there's no way that they can be COVID-19. There's just no way. Maybe you got the flu or something or because my dad was fine. My dad didn't have any symptoms at the time. And so we went to my dad, we stressed that he needs to go get my mom a COVID-19 test. And he did.

[1:09:19]             And it was July 28th that they took a COVID test for her. And, that's the day that our lives were turned upside down. That test came back positive for my mom. And it just shocked us all. My sister and I were in disbelief. I know my mom was in disbelief and my father was in disbelief. And we just could not believe that she was positive when she was fully vaccinated. And so we were worried to death that her symptoms were so bad from the start.

[1:09:59]             And it almost seemed like the vaccine didn't even work for her. I mean, because she got the symptoms so fast and it hit her so hard. But July 28th marked –  I think that was the day that everything changed for us and things got worse and worse onward from July 28th.

Amanda:             And it was July 27th when the CDC started recommending masks for the vaccinated again. So at that point, it was far too late to even know that Delta was a thing.

[1:10:36]

Mark:                    It was far too late for that. And I think in Mississippi, my parents, they had never even eaten indoors in Illinois this whole time. And when they did go out somewhere, Walmart or shopping, they would wear a mask. Yet the woman that they went to go visit was taking my mom and dad out to all sorts of places, restaurants, and my mom loved to shop.

[1:11:06]            And so she took my mom shopping. And I think my mom, I know for a fact, because she told me she was uncomfortable doing these things, but – and she didn't wear a mask down there, and I think she felt uncomfortable there because almost no one in that state was wearing them indoors. That was a state where people were going against every CDC guideline that was out there.

[1:11:34]            And I think my mom felt weird or insecure that she was the only one that would be wearing a mask, and so she didn't wear her mask in Mississippi. And I think just being there made her uncomfortable. Gosh, I think, yeah, the Delta variant, just when we got back, it was almost like the day or two that she got back, it hit the news that there was this new variant and it's, it's breaking through to some people who are immunocompromised.

[1:12:06]             And yeah, the mask mandate came back the day after. It's was a horrible timeframe for us because had all this happened weeks or even days before they went down, we wouldn't have sent them down there, but we did and we didn't know. And yeah, now we live with that regret of them going down there. And that trip ultimately cost her life.

[1:12:40]

Amanda:             And when we discussed the progression of her COVID experience, it sounds like it was a very traumatizing experience for all of you guys.

Mark:                    It was, because we had been so safe. We had taken everything at heart. All these precautions we took so seriously. And to do all these things right, to wear the mask, to not see each other for over a year and a half, to then getting the vaccine. Like, we did all these things that were required out of us to protect ourselves, but protect my mom especially.

[1:13:20]            But also it was to protect other people. We weren't just concerned about ourselves. We were concerned about others that we didn't want to see sick and go to the hospital or even die. But when my mom got that test that came back positive, it was just like, we were all depressed, and just how could this have happened? And what did we do wrong, you know? And like we're trying to trace our steps back to should we have known something different?

[1:13:53]            Should we have gotten a second opinion? But I think, we can't do that, because I think at the time, we were making decisions as we knew them, in accordance with guidelines as we knew them. And we can't kick ourselves too hard over what happened. But I think seeing how hard and how fast the symptoms hit my mom, it was tough, because it affected her mentally, her mental state.

[1:14:30]            And even I think it affected our mental state, seeing her get so sick. And so she ended up going to the ER. My dad took her to the ER in late July because she wasn't eating, wasn't drinking, had no appetite, aches and chills and all that. And, so she went to the ER and they admitted her.

[1:14:58]            I'm sorry, they saw her, but then they sent her back home because I guess she wasn't really that bad in late July. And still that decision to send her home angers me to this day. It angers my family that she told them that she was immunocompromised, that she was taking Rituxan, that she's one of these people that needs to have a close eye watch on her.

[1:15:26]            And they did all the vitals. You're good. Just go home. Here are some antivirals. She had pneumonia when she went in and she was diagnosed with pneumonia at that time. And everything was in her lungs, when she went to the ER. But they gave her some antivirals for pneumonia and they sent her home. And a day or two of her being home, things just got even more worse, if you can imagine.

[1:15:55]             I mean, the virals weren't working. She began getting nauseous with the virals and the antibiotics. She couldn't keep them down. So she began, throwing up the virals that were there to protect her lungs. And so her lungs got worse and worse. And then she had diarrhea along with it. I mean, it was just everything just got worse at home. And so, we were like, Dad, you have to take her back to the ER.

[1:16:25]            So he took her back there again the second time. And that's when things, I guess, were bad enough that they finally admitted my mom and kept her there for observation. She was in a normal, I'd say normal – she was not in the ICU at that time. She was in a normal isolation ward for COVID at St. John's, although which meant that we couldn't see her.

[1:16:54]            You know, no visitors at all in that ward. And it was around that time that my dad also got a positive COVID-19 test because he was began getting symptoms and he was positive as well. So that was two breakthrough cases in our own family, although his symptoms were very minor compared to my mom's. So, my mom was finally admitted to the hospital, placed on just the general nose oxygen.

[1:17:30]             But then we sent a phone up to her. We gave her some ways to communicate with us. She had a phone in the room and we got to talk to my mom on the phone. And other than her coughing quite a bit, which was normal for my mom, because everything always went to my mom's lungs, whether it be a cold or anything. Everything always went to my mom's lungs, always. And it took her forever to recover whatever went to her lungs.

[1:17:57]             So other than her coughing, we just talked about normal things and asked how she was, and she was hopeful that she'd get better. And we kind of felt better that she was in the hospital, that she was going to be getting constant watch, that she was getting hydrated and doctors around her all the time.

[1:18:21]            But her vitals began slipping, each day kind of just got worse and worse. And her oxygen levels began gradually decreasing over time. And so she was on the normal nose oxygen. That wasn't working, so they put her on the full face mask oxygen. That wasn't working. She still had no appetite, so she wasn't getting up, wasn't exercising. Very, very weak state. Combined with her existing rheumatoid, it was hard for her to be mobile at this time.

[1:18:58]             Her joints, I'm sure, were terribly painful. And things just kept going downhill for her. And eventually they admitted her to the ICU because things were just getting so bad and she wasn't getting any better that she had to go to the ICU. And, you know, that was – and oddly, there was even more sense of comfort in some way that at least in the ICU, there was even more doctors, there's even more things watching her, making sure that, she's not going to slip, and that she has all this help there.

[1:19:43]             But she just kept getting worse and her pneumonia kept getting worse. Nothing really seemed to be working for her. And ultimately, they had to make the decision that my mom needed to be intubated. And we knew, from seeing all these stories on the news that being intubated was like the last thing that you want to see. You don’t want to see someone get intubated.

[1:20:10]             That means that nothing else is working at that point. And so, my mom was intubated. We knew that things were taking a turn for the worse. And so they they had to have her fully paralyzed for that, on all kinds of pain meds and muscle relaxers so she wouldn't fight the tube that was in her. They hooked up a feeding tube to her because she couldn't eat at that point and wasn't eating before that. So I think things were taking a turn for the worse when she was intubated.

[1:20:49]             You know, finally around I'd say maybe a few days of being intubated, she was no longer actively shedding the COVID-19 virus. And so they began letting us, one visitor at a time, to go see my mom. And I hadn't seen my mom since June 28th. That's when we took our last photos, her birthday. And we did a photo before they were planning to go to Mississippi.

[1:21:20]            And I hadn't seen her before that at all. And so to compare what my mom looked like in the ICU, comparing to what I saw her last, was pretty tough. You walk in this room and it's just machines and monitors and numbers and beeps and buzzers, and tubes coming out of every arm and mouth. And it was pretty hard to see that. And I don't know if she even knew that I was there.

[1:21:50]            I mean, they had her on so many paralytics and pain relaxer. I don't even know if she knew that I was there. So it was one visitor a day. And so my family, my dad and my sister and I, would basically set out days that we would go there and spend time with our mom and at least be by her side and talk to her in case she knew that we were there.

[1:22:18]            And my mom was making – I hate to say progress because it didn't seem like it was massive progress, but the x-rays that were coming back were showing that her lungs were getting more oxygen in there. And the pneumonia was getting a little bit better. Because when she came in that second time, it was just all white, all infection, all full of illness and fluid and very little airspace for her to breathe.

[1:22:53]            When she was intubated and given all these IVs and fluids and antibiotics and virals and forced oxygen, we began seeing airspace in her lungs open up. And so the doctors were kind of playing this tricky game of adjusting the levers here and levers there to see could they decrease oxygen and see if her lungs would take over. And we were seeing incremental progress being made and we were looking for any sign of hope that she was getting a little bit better.

[1:23:27]            And so I'd say a week or two of her being intubated, we were seeing gradual, maybe baby steps are a better word, baby steps of progress. And I recall going out to lunch with my sister and my dad to try and have lunch somewhere and trying at least to have some normal day while our mom was intubated, and we got a phone call while we didn't even have the menu yet.

[1:23:59]            And it was one of the nurses saying that my mom was septic and was in sepsis and that they were trying to find the cause of the sepsis. And that my mom had 108 degree fever. And so that, of course, ruined our appetite. And now we were immediately worried again that here she was making some degree of progress and now she's septic.

[1:24:30]            I mean, what the hell? And I didn't even think that 108 degree temperature was even possible without you dying. And so they put a cooling blanket on her and they were trying to find the source of the origin of the infection. And I don't know even to this day if we know the exact cause. I think they traced it back to a fungus that may have been in the lining of the intubation tube that ended up spreading throughout her body because of her weakened state.

[1:25:06]            But it was just one thing after another. If COVID wasn't bad enough. And she pretty much beat COVID. I mean, she was no longer shedding the virus. She was getting better. And now she's got this? I mean, you only really catch that in the hospital system like that. And then she breaks a fever, the fever comes down, and they gave her even more antibiotics, even more antivirals.

[1:25:38]            But I think when she caught the sepsis and even though she kind of recovered from that immediately, the sepsis, it erased any progress that my mom had made or was making in her lungs. The x-rays after the sepsis showed once again white, and it was even worse than before. The sepsis reversed any progress that was made and she was right back to where she started.

[1:26:08]            Lungs were worse than they ever were. And so they put her on an additional tube of nitric oxide, which is even more, supplemental oxygen. And so she was on the max settings on the intubation tube and the nitric oxide settings. None of that was working. And so after the sepsis scare, things just got worse, I think, by the day.

[1:26:36]            And we were all called up there as a family because we were told, she's not going to make it today. She's not going to make it. Come here and be by her side because we don't think she's going to make it. And my mom would always somehow pull through. And it was just this back and forth. It's just almost like torture where I think it's happened three times to us where, drop what you're doing, get here now.

[1:27:05]            She's about to go. And we do that, and she hangs on, you know? And I don't know how much of this was my mom fighting to stay alive, or was this just all the things hooked up to her, just making her live, you know? I don't know. But she kept hanging on, and this happened for another two weeks of this constant, come here, she's about to die. Okay, she didn't, she pulled through. Now go back to one a day visiting.

[1:27:41]             It's like we kept going back and forth with the hospital who, now it's back to one visitor a day again when she just about was to die the day before. And eventually the last two weeks of her life, we began seeing urine output decrease, the urine get darker and darker and darker. Lungs were not improving. And the doctors told us pretty much straight up that my mom had a 100 percent mortality rate, that no matter what they did, it wasn't going to work.

[1:28:18]             And that she was in the early phases of kidney failure. And that did we want to hook her up to dialysis? So we weighed that as a family and I think we all came to the decision of no we didn't want her to go through more of this. You know, having another machine in that room. I don't know where you'd even fit it. I mean it's just every every inch of that room was a machine.

[1:28:48]             And so they had kind of given us the decision to put her on I guess what's called comfort care and remove every life-saving device in her body, take out the tubes and make her look as peaceful as possible, and give her some pain relieving drugs that would not –  you know, it kind of would relax her need or desire to take a breath.

[1:29:18]             And so that she would just kind of go peacefully. And so that's what they did. On September 3rd we made the decision to do that, and they called this in, after all the tubes were out, and she took maybe four, maybe five very pained, gargled gasps for air, and within a minute I'd say she passed away. So it was it's pretty brutal to see that, you know, and to go through that.

[1:29:52]             But she went pretty quick. Within a minute or two, I'd say, she was pronounced dead. So the suffering ended, but the pain just got worse for the family after that because now she's not here. At least when she was around she was at the hospital, I could go see her, but now she's now she's passed. And so it was pretty tough for the family.

[1:30:20]             But yeah so September 3rd at the age of 66, she she passed away.

Amanda:             I'm so sorry for your loss. We're back after a momentary pause. What was the feeling when she passed?

Mark:                    You know, the obvious sadness comes from losing our mom and a wife to my dad. A lot of grief, regret of this trip to Mississippi, and could we have stopped it?

[1:30:57]             You play all these things over and over in your head of, could you have done something different? Should we have put her on dialysis? We didn't know if it was the right decision that we made, but I think ultimately we found comfort in knowing that, knowing what we know now, we did make the right decision and we began trying to turn our sadness into maybe some sort of motivation to get this message out to the general public about my mom and her story and what we went through, and how her death and the death of other people like her was preventable.

[1:31:42]            You know, by taking some simple precautions by others that others chose not to do. And so my sister actually had this idea of writing the obituary for my mom and writing it in a way that was pretty powerful. And she wanted me to proofread it, and I read it, and it was basically citing at the time the number of COVID deaths around the world in the obituary.

[1:32:14]             And I wouldn't say pinning her death, but really holding responsible for her death and the other deaths of other victims the number of Americans around this country that chose voluntarily not to do social distancing, not to wear masks, to make this thing a joke, to not get a vaccine. It was these people that ultimately we hold responsible for this pandemic morphing into the Delta variant that ultimately took my mother's life.

[1:32:48]             And so it was a very powerful worded obituary that we thought was proper and that also, I think, encapsulated my mom's views. My mom was very opinionated on this pandemic and was getting angry at people for not doing these simple safety measures of wearing a mask and just getting a vaccine when it was out. And so we thought that we could kind of take her voice and her frustrations and kind of put them through paper and pen through this obituary.

[1:33:22]             And we didn't really think anything of it. When we put it out there, we just thought an obituary is an obituary and people might read it, people might not. But we at least wanted to drive this point home that we're angry with people and we want people to be accountable for their actions. And so when we put     the obituary out there, it was almost an immediate response from local media, especially, which then catapulted into this national and international media sensation craze.

[1:34:03]            

Amanda:             Yeah. And I have the quote that's especially poignant, which is, “She was preceded in death by more than 4,531,799 others infected with COVID-19. She was vaccinated, but was infected by others who chose not to be. The cost was her life.” I think you guys –  yeah, I can see the point that you were making, and it sounds like even – I was looking it up and I saw that there's a page for her on Dignity Memorial's obituary site.

[1:34:39]             And it sounds like even people were commenting on that as well, not just with the media, but it sounds like people were going everywhere to say their opinion.

Mark:                    Yeah, I mean, that obituary, it really – kind of like the pandemic, it touched people whether in a good way or a bad way. It made people feel comfort in reading it and like, yes, this was a good message. And, she was a brave woman for fighting this for so long.

[1:35:11]            Her family was brave for putting it out there. But also had the opposite reaction from those that felt that we were blaming them, which we weren't blaming them for her death. But it got tons of online traction. Yeah, even on the online obituary sites, there was just comment after comment, and a lot of just buzz in general about why we did what we did with the obituary.

[1:35:40]             And even to this day, we have no regrets about it being so strongly worded. I'm kind of glad that we did word it so strongly because I think what's come out of it has been a lot of positive reactions. But of course, there's been a ton of very negative, bad reactions as well from it.

Amanda:             And when you have been getting interviewed by different media sources, do they tend to be positive experiences?

[1:36:14]

Mark:                    I think it was almost therapeutic in some way. I think this story was picked up by every local and national paper you can think of, from the local state journal register to the Chicago Tribune, Chicago Sun-Times, People Magazine, Inside Edition. Good Morning America even interviewed us for this.

[1:36:42]            I don't know if I mentioned CNN and Fox News interviewed myself or myself and my sister. And every interview and every story in print was very fair, I think. They didn't twist what we said in some political lens one way or another. And it was kind of nice, talking through our experience and having our story put out there for others to see and read and feel.

[1:37:15]             Because I think what we went through, other people were going through as well. And I think people found comfort in our story. A lot of people found comfort in the story and found it uplifting and positive. Although it's about death ultimately, I think people were looking for it to say, look, see, people are still dying, even though they're vaxxed and we have to protect the immunocompromised.

[1:37:41]             And I had a big reaction from the immunocompromised community who wrote me and said, thank you for putting this out. These articles were helpful. And it did spur some activity to get people vaccinated.

Amanda:             And you also mentioned this international attention. When I did a Google search, I found that the Daily Mail in the United Kingdom picked you guys up. Who else?

[1:38:10]

Mark:                    Yeah, I mean, we had a big story run in the UK, Belgium. I think I saw some articles in Scotland and Korea. Yeah, I had people from, I think, even Australia. It was picked up in Australia. So we had people from all over the world reading my mom's story or at least hearing about it, commenting on it, or they were contacting me through social media.

[1:38:41]             And so that was pretty cool. And I even got a personal phone call from Governor Pritzker, who called me and offered his condolences about my mom and saw her story. And Governor Pritzker and I talked for maybe 10, 12 minutes, and it almost felt like we were friends. And he comforted me and talked about his frustrations as a governor, seeing all this on a state scale in trying to protect people like my mom.

[1:39:14]             And his frustrations of people not doing what he's saying, to wear a mask and distance and how he's seeing people die, that's unneeded and unnecessary. Hearing from him, just – he didn't have to do that, and it just really made my day and made my family's day. And then we saw United States Senator Dick Durbin on the floor of the Senate read the obituary almost verbatim on the floor.

[1:39:47]             And talked about how over breakfast him and his wife read it and how moved they were by it. And I mean, it's just, my mom – it's kind of funny because my mom always stayed –  she didn't like the limelight, didn't want to, be in the news for things maybe like that. She liked Governor Pritzker, she loved Senator Durbin, and she loved Good Morning America, she watched it every day.

[1:40:14]             And it's like her name being out there on all these platforms, she probably would have been starstruck over it in some way, that she rose to this level of notoriety, that her story, her name is out there forever. I think it was pretty cool to see all this attention around it. But with all the attention comes the negative attention, and we certainly got our fair share of that as well.

[1:40:47]

Amanda:             Yeah, you mentioned that people started bombarding your personal Facebook, your work email. It sounds like from every front you were given some type of response.

Mark:                    Yeah, from the very beginning of the local publication of the State Journal Register to it going national and even international, that really began what I call the onslaught of these horrible messages that I got from people that I didn't even know who would reach out to me through Facebook or through even my work email account.

[1:41:32]             They would find my work email and email me horrific messages, or they would send me the most awful things that you could think of to someone who just lost their mother and watched their mom die. They would send me these awful Facebook messages, vulgar, visceral reactions from people on social media or Twitter.

[1:41:59]             People began calling my father, calling his landline, joking about how his wife died. You wouldn't believe it unless you saw it, and you saw some of the messages come in. I received a bulk of them through my social media Facebook pages. My sister didn't get any at all. My dad had maybe a phone call or two come into his landline of people laughing about him losing his wife.

[1:42:35]             But I received the lion's share of the rhetoric that came in primarily through Facebook. I’ve probably received hundreds at this point. I want to say hundreds of messages, and probably 80% of them were the negative, hostile, bad reactions of people who thought it was funny that my mom died and thought this was just great that she died.

[1:43:05]             Telling me that COVID is a joke, my mom died because she got the vaccine, the vaccine actually killed my mother, that they're glad that she suffered. I mean, things that you just don't think people are capable of saying in a time of grief, they feel comfortable saying it online because it's easier to type it out and hit send than say it to your face.

[1:43:32]             And so I have a lot of messages that I saved because some of these people, whenever you click on their name, I'd find that there's nothing there to be found on Facebook. It's just a profile picture and no posts, and it makes me believe that it's an alias. But some of these people are, my God, they're real people. They list their occupations and their family members, and these are people that I don't know that took time out of their day to find me to tell me how happy they are about my mom dying.

[1:44:09]            I don't know where these people exist and what motivates them in life to send what they sent, but they did it anyway. And I did save some of those messages just so I could eventually call them out eventually and hold them accountable for what they said.

Amanda:             And you brought some to share with us today?

Mark:                    Yeah. I didn't bring all of them.

[1:44:37]            I mentioned I had several hundred of them that I got. I figured I would save some of the ones that were the shortest. I did receive some that were paragraphs long of people explaining how they did their research and giving me all these links to phony papers on COVID-19. So I saved the ones that I thought were real people.

[1:45:04]            I checked their profiles. They were real people. And none of them lived in my state, come to find out. One here is by the name of Ryan Chapman, and his message was, quote, “You're a fucking retard. If this vaccine is so great, why did she get the virus? It's liberal, ignorant fucks like you that are ruining this country. Push your beliefs elsewhere,” end quote.

[1:45:33]            So that was a pretty stern message from this guy. The thing was, whatever he was seeing and reacting to, I was getting some messages saying that I'm pushing some liberal agenda because I was on CNN and MSNBC. But I was on Fox News as well. I was not turning down any interview of any reporter that wanted to talk. And so I don't know why people were claiming that I was pushing some agenda.

[1:46:05]            My agenda was trying to protect people. That was my agenda. Here's another one from, I think it's Cole Shoemaker. Quote, “Your mom died from a virus that she was vaccinated against and the cause is because others refused the vaccine that your mother took. Do you realize how stupid that sounds?” End quote.

[1:46:32]             Here is another one from, I believe his name was Jim Rhoades. “What you did was despicable and horrible, and you should be ashamed blaming other people. Blame the vaccine, not other people. If the vaccine really worked, she wouldn't have died. But the vaccine doesn't work with the variants. Typical hypocritical libtard. Like you libs have crowded for over the years, my body, my choice.”

[1:47:07]            End quote. And this one was probably one of the most to the point and the most stern. From a guy named Brett Contreras. “Fuck your bitch ass mom. I hope she suffered.” End quote. So I received dozens of ones that were just like that. The ones that were maybe a sentence or two long that said, F you, F your family, fuck your mom. I'm glad that she's died.

[1:47:36]            I'm glad that she suffered. I hope she suffered. People would send me longer ones, just going on and on and on about why do we blame people? Why are we blaming them for my mom dying? Why are we doing this? And putting the blame back on me or my family. A lot of them were like that. I even had a guy who contacted me twice. He tried video chatting me.

[1:48:05]            I don't know what for, but he then sent me four paragraphs of how dumb I am and how dumb my family is for going public with this. And the whole thing, I knew for a fact that when we put this out there that we would get some negative reaction, because we were in seeing the news anyway over the years, and I knew that when this got out there, there would be a lot of negative reactions.

[1:48:35]            But not to this degree. Not in the number that I saw them in. Certainly not in hundreds that I got. And so it was difficult to process a lot of those. But I feel like these people that did that, you tend to find people who are triggered negatively to a story tend to be the ones that write you about it the most. Whereas the people who felt comfort or were motivated or liked it, they tend not to stalk you on Facebook and tell you, hey I like that story.

[1:49:14]             So I do tend to see that things are skewed that way. But yeah, the negative reactions were hard to process. But not unexpected with this pandemic and what we've seen with it.

Amanda:             Why do you think they targeted you?

Mark:                    I think they targeted me because I was the face of all this. I was the one primarily doing the interviews on camera.

[1:49:36]            My sister did a few of them with me. But I was the one really being quoted in a lot of the papers and the print articles. And so I was the face of it. And I was the one sharing a lot of this stuff on social media, which that's kind of how these people found me. So I took the brunt of it through my family, which I didn't want my dad to see a lot of this stuff, nor my sister for that matter. Ironically, I'm used to this stuff in some way.

[1:50:05]            I would get hateful things like this from time to time through my work. People not liking bills that we passed or something. And so I was pretty used to getting cussed at or people not liking a certain position, but not about something personal, about grief and death, and how someone can be so callous and write you.

[1:50:35]            And take time out of their day to find you, find me. And to write a message so hateful. I just don't know who these people are. And how bad is your life that this is what you do? You're so offended over something that you find someone and message them that you don't even know. I have never had an experience in my life where I read something that I hated so much that I took the time to find that person and say, you know what, you're wrong and F you.

[1:51:10]             It doesn't make any sense. But in some really odd twisted way, I kind of found comfort in some of it, because I knew that these people are going out of their way to write me. They're going out of their way to find me and stalk me, whether it be through work or my personal Facebook page, to send me this stuff.

[1:51:41]             And really the core of their argument is, COVID is a joke. It's made up. Joe Biden made it up, or the WHO made it up, or it's just something that isn't that serious. And okay, if that's what they believe, and if that's true, and this thing really is such a joke, then why the hell are they taking this thing so damn seriously? If they read something that they thought was a joke, and they think what I'm saying is a joke, why are they taking it to heart and thinking that this is so offensive to them that they have to take time out of their day to write me about it and prove to me that I'm wrong about something that they believe is a joke?

[1:52:24]             And so deep down, I feel like these people, maybe a lot of them – maybe not all of them, but a lot of them – probably do feel responsible. They feel guilt. They feel that they have to put on this show of masculinity and that they're strong, and that this is a joke, because deep down they feel that it isn't. But if they keep up this public face of ridiculing it and making a joke out of it, making it political, then it's their way of coping with the seriousness of the pandemic.

[1:52:59]             I don't know, maybe it's an odd coping tool for them. I don't know. But I just found it very ironic that these people who are triggered so bad in this negative way, thinking that this is a joke, took this so seriously to write me, to tell me that it's a joke.

Amanda:             One of the perhaps more positive outcomes, though, was the Illinois Times article on COVID callousness that you brought to my attention.

[1:53:36]            And that was a really interesting article because it provides a scientific backing for why people have been so cruel, especially regarding your family.

Mark:                    That was probably one of the neatest articles that came out of this whole thing. I mean, Rachel—I think her name was Rachel Orwell, the reporter who did the story for the Illinois Times – the article was—they quoted me in it primarily, but they quoted Professor Richard Gilman Opolsky, who was a political science professor at UIS.

[1:54:13]             And I actually had him as a professor when I was going to school there, so it was kind of cool to see him mentioned in this article. But the article was mainly about my negative experiences in the media with people's reactions to my mom's story, and why are people reacting negatively to not only my story, my mom's story, but others like it? Why are they reacting negatively to COVID-19 in general across the United States, or even internationally?

[1:54:45]             And that was kind of the focus of Professor Gilman Opolsky's quotes in the article, which I found pretty fascinating and enlightening and comforting in a lot of ways, because I think it provided at least some sort of political science-y explanation as to why I'm saying what I'm saying, why I experienced what I experienced, and why we're seeing as a country this negative, visceral reaction to COVID-19. And he goes into how the United States, culturally, is very individualistic.

[1:55:28]            And when you combine that individualistic society with our perceptions, our personal perceptions of freedom and patriotism, that all these things kind of morph themselves into a country that is kind of callous by nature. It breeds callousness. And I thought that was a unique quote in the paper, was our society being so individualistic, it does tend to breed callous behavior.

[1:56:02]            It's very I-centric, me and I dominated, very little about you and we. And so then that pans out with its perceptions to a global pandemic. And so when this pandemic raids across the country and you were told that you have to wear a mask, you have to protect other people, it was met with, well, don't tell me what to do. I will tell me what to do. Don't tell my family what to do.

[1:56:33]            And you kind of saw that individualistic behavior come out in wide swaths of the population. Don't tell me that I have to wear a mask. I will make that decision. Don't tell me I need to be vaccinated. I will make that decision. Don't tell my kids I have to do X, Y, and Z. I mean, a lot of this stuff came back to don't tell me and I that I have to do something.

[1:57:00]            And I think that that shows where we're at as a country, because other countries that are very socialistic and communal, especially in the European Union and other countries, it was we, and they took action as a country and protected neighbors and people that they don't even know. And you saw COVID kind of get wiped off the face of the planet in that particular country because of the country's effort communally to help each other out.

[1:57:34]            Whereas here, it was pockets and here and there and individualistic attitudes. And then it became about freedom that, you're infringing on my freedom to have kids and send my kids to school and don't tell them to wear a mask. And then it morphed into tyranny and hearing people claim that all these mitigation efforts were tyranny.

[1:58:02]            I mean, they're using words that they probably don't even know the meanings of or the history of. And so all that was kind of encapsulated in that article in the Illinois Times, fighting COVID callousness. So it was kind of neat having a political science-y explanation as to why I and my family and we as a country are seeing this reaction pan out across the country.

[1:58:36]

Amanda:             It was a very well written article as well. At the time of our pre-interview, which was at the start of October, you were still receiving a lot of these hateful messages. Have they slowed down?

Mark:                    Yeah, since that pre-interview, they've slowed down almost entirely. I think with the easing up of the online publications and the articles that have come out, people aren't reading it anymore.

[1:59:05]            I haven't gotten a negative reaction in probably two or three months now. I mean it's maybe two months. Good or bad. I mean, the reactions have stopped coming in altogether, which we knew that would happen. Eventually it would kind of flatten out and kind of fizzle away. But it is kind of nice not having my phone be bombarded with all these nasty messages.

[1:59:31]            I would say though, one of the neat things that came out of all this was just random people, strangers, even some of the people I know, would message me and give me a picture of their COVID vaccination card. And I could see the date on it, and they got vaccinated because of my mom's story. And so seeing people get a vaccine because of our story, even their first or their second dose, because of this story, it really helps our family.

[2:00:05]             And knowing that my mom's legacy lives on, that there is likely people could be walking around this earth with more years because of this story that got put out there and that people got a shot or people are now wearing masks again. And you just don't know how many people are out there that lives are touched by this story in a good way.

[2:00:30]             And I think knowing that legacy is out there in some way really does help our family kind of cope with the loss of our mom.

Amanda:             Were you guys able to hold any type of funeral or funeral service?

Mark:                    It was per my mom's wishes. I mean, even before COVID, my mom wanted a private ceremony anyway.

[2:00:52]            And so with COVID raging again, at the time we had a private ceremony, just my dad and my sister and I, and my wife, was the only one there. It was a grave site funeral. Did not have an open casket. Everything was just graveside, immediate family only. And we kept it very, very small, very close knit per her wishes.

[2:01:21]

Amanda:             I imagine that was healing to have the four of you.

Mark:                    It was, yeah. I mean, we didn't wanna have a ton of people there for obvious reasons. And I think there's even some in my mom's distant family who are kind of the anti-maskers, anti-vaxxers, I would even call them, who expressed interest, ironically, in coming to the funeral, and we had told them no.

[2:01:50]            I mean, it was my mom's wishes of keeping this thing small. But none of us wanted to be around anyone else that thought this was a joke. You know, these anti-vaxxers and anti-maskers in our own family wanting to be around us at this time was just kind of a punch in the face. So they're welcome to visit my mom and leave flowers and things and say prayers, but it was our wishes and my mom's to keep it personal and keep it immediate.

[2:02:23]            And that's exactly what we did for her.

Amanda:             And since her passing, or actually a couple days after, was when President Biden started mandating vaccines or weekly testing for companies with more than 100 workers. And since then there's been a bunch of different mandates coming out and a bunch of pushbacks against them. What do you think is the best way to mitigate this pandemic?

[2:02:50]

Mark:                    It's, for one, listening to scientists and virologists that have the data. I mean, that's what we've been doing from the start. And it's not like there's really a playbook for this type of thing. I mean, I know there's a lot of heat on politicians who are trying to mandate masks in schools or in certain settings, or workers being required to get vaccinations or submit to COVID tests. I mean, people are doing their best to make sure that people in general are protected.

[2:03:25]             And I think these mandates are good. I think the mandates are worthy, that they have good intentions, that people need to be protected, especially with a disease that doesn't care about your health status or not, or your political affiliations one way or another. And so I'm all for the mandates. My own organization has a workforce mandate that we have to be vaxxed. And we're all for it.

[2:03:56]             I think you're not gonna find very many people going against that and getting weekly saliva testing. I think they're great. I wish more states would do those mandates and protect people, but as we've seen, some of these states, they don't want any mandates at all. And in fact, some states have gone as far as banning mandates, which I just can't believe.

[2:04:24]             Banning cities and municipalities from governing their own cities to protect their own people. I can't believe some of the things that we're seeing as a result of this pandemic. But by and large, it's the things that we've been hearing and seeing all along. Wearing a mask, social distancing, getting a vaccine.

[2:04:48]            I mean, those things, that's our best shot. And those things are proving to be beneficial. And understanding how these variants work is something that I'm personally interested in, knowing how the Delta variant was able to break through to my mom and my dad, understanding the science behind the immunocompromised, especially those are fully vaccinated and they're immunocompromised, being extra careful around them.

[2:05:19]             I mean, I think that's who these mandates protect, is especially people like that. And so I hope people get beyond thinking about themselves and start thinking about other people who did everything right, like my mom and my dad, and yet still got sick because people refuse all of these things and caused this virus to mutate into the Delta variant.

[2:05:47]             And God forbid we're seeing the Lambda variants now. We're seeing other variants morph from this. And every person that's not vaccinated, every person that doesn't wear a mask and gets sick enables this virus, a body to mutate and to turn into another variant that could be more dangerous. And that could ultimately maybe down the road, cause it to not care about the vaccination status of people.

[2:06:16]            So I fear for that day, but I hope that enough people in this country do the things that we were told to do from the start, wearing a mask, social distancing, getting the vaccine.

Amanda:             Has the pandemic changed your view on people as a whole?

Mark:                    You know, it's it's hard to answer. Probably yes. I would say it has made me cold in some sense to people.

[2:06:51]             On the topic of COVID, it's definitely changed my view. I know that when I was going to the ICU, when it was my turn to go see my mom, I would –  she was at the very end of the hallway, and there's all these glass doors that separate the hallway from the rooms of these patients up there. And the hospitals would put out the stats every day of who's in the hospital, who's in the ICU, vaxed and unvaxed, who's on the vent, vax and unvaxed.

[2:07:22]             And so I knew for a fact, days that I would be up there, that my mom was the only one in that ward that was fully vaccinated in the ICU. And so when I would walk by these rooms of people that I would see on a ventilator, or I'd see them on a pressurized face mask for oxygen, I would feel cold to them and almost like, well, you deserve to be here. I mean, what do you expect?

[2:07:56]             I mean, you didn't even, you didn't even, get a vaccine, you probably weren't wearing a mask. And I felt very cold walking by some of these rooms and seeing people like that suffer. And I don't want to feel that way about people. I never felt that way about people. But at the time it was like, well, they deserve to be here. My mom doesn't. Because we did everything right. What were you expecting?

[2:08:21]             And I hated feeling like that, and I still kind of feel that way today when I see people that are not vaxxed laying in the hospital. Part of me just doesn't want to care because at this point, what more do we need to be telling people? I mean, if you don't get it now, you're not going to get it. And so it has changed me in a big sense in terms of COVID.

[2:08:52]             My outlook on people in general, I think, is still positive. I still like people. I still believe that people can do great things together and achieve great things together and should be doing things together. I just wish we saw more of that togetherness as a country fighting a pandemic because as we've seen, too many people have died, including my mom, through selfish actions of others.

[2:09:21]

Amanda:             What do you think that, as United States citizens, that our biggest strength is?

Mark:                    Our biggest strength as citizens? I kind of wish – and during the times of COVID and even now, I really thought that we would band together for this. Like after 9/11, there was this immediate sense of togetherness, and we came together to fight a foreign enemy together and didn't care who was R and who was D, what party you were from.

[2:10:02]             And I really thought that we would have that with the global pandemic, that we would fight this thing together. And I'm finding that we're not. And that, that, that makes me sad to see that. But what's come out of our experience with our story and losing our mom is still seeing the empathy from people who care that are strangers. I think despite the wide reaction that I saw from people that wrote me with these negative reactions, obviously there's interest in the media, there's interest around the world in this.

[2:10:42]            And it's something that people find moving and inspirational. Otherwise, it wouldn't be getting talked about in the media like it did. And so I think overall, I find the empathy is still there by a majority of Americans on this and that more of us have gotten vaccinated versus unvaccinated. More of us are doing the right thing versus those that aren't. And I do find that comforting to see.

[2:11:11]            That's one of our strengths is we are, by and large, trying to come out of this the best that we can. It's just there's enough of the minority around still that is not doing that, that is still causing this pandemic to linger. And it might be endemic in this country moving forward. But overall, I think it was seeing the empathy from total strangers writing us and finding solace in the story, whatever they were reading, to contact us and tell us nice words.

[2:11:49]             That was, it was very nice to see that.

Amanda:             After a year and a half of new normals, what would be your vision for normalcy?

Mark:                    Gosh, new normalcy? I kind of am enjoying the mask wearing. I didn't think I would like having a mask even being fully vacced at this point. I love it.

[2:12:14]             I find myself having always one in my pocket wherever I'm –  it's almost like having mints in your pocket. I've got a mask in my pocket at all times. Now they're on my car, my wife's car. I think mask wearing, maybe to some people, maybe not the majority, I would hope, would be a new normal.

[2:12:35]            We know that the flu was almost at an all-time low last year because of mask wearing. Allergens, I have a lot of allergies. This thing has been a godsend for my allergies, wearing this thing all the time. I think it's great. Part of the other normal I want to see, and this is kind of my nerdy, geeky, professional life coming out here, but the COVID-19 origins of tracing back –  you know, kind of all zoonotic outbreaks stem from animals and contact with exotic species.

[2:13:11]             And whether they come from bats or pangolins or whatever the origin of source was for some of these animals, they were always passed from animals to humans. Every single one of these zoonotic outbreaks were passed on from animals to humans. And I think re-evaluating, our role in that is paramount going forward.

[2:13:36]             I mean, eating exotic species, possessing exotic species, the wildlife markets that we see in parts of Asia that are housing numerous exotic and threatened species together to be sold in the black market, intermingling with other domestic species, just our attitudes towards animals and our consumption of animals and the way that we treat animals I think has a direct correlation into the progression and evolution of all zoonotic outbreaks.

[2:14:14]             And so reevaluating our stance and positions and laws pertaining to animals, whether they be companion or exotic, I want that to be the new normal as well. It's just not going back to the things that we were doing before, but really prohibiting our interactions, touching and petting and possessing threatened, endangered species that are a lot of times vectors for these things one way or another.

[2:14:43]             So I hope that maybe that's a new normal going forward.

Amanda:             Is there anything that you wish you had known at the start of the pandemic that you know now?

Mark:                    I really wish we knew about Delta. I wish we knew about the variants. I wish we knew about breakthrough cases.

[2:15:05]            I mean, there's just so much that I wish we knew then that I now know. I wish some of this science and data was available in late 2020. And I wish that we never removed the mask mandates. I mean, I think leaders made decisions at the time based off available data. And in hindsight, I wish that we kept those mask mandates in place until we knew how this pandemic affects the vulnerable, especially the immunocompromised.

[2:15:40]             More than anything, I just hope that we eventually understand how certain drugs interfere with people's immune systems, like my mom taking this drug Rituxan. I had several people write me who were also taking that, that had done antibody tests on themselves, and they had no immunity after the second vaccine, after taking the specific drug.

[2:16:07]             I want more data on that, and I'm glad people are doing their own research, but that research needs to be peer-reviewed and studied and put out by experts. And I hope that going forward there is peer-reviewed data on how certain immunocompromising drugs for rheumatoid affects those that get the vaccine, and understanding their immune systems better and so we can protect them better going forward.

[2:16:37]

Amanda:             And if you could say anything to yourself pre-pandemic, what would it be?

Mark:                    Buckle in. It's gonna be a bumpy road. I think that would be my advice to myself, going forward, not only that I know now. It's weird because in 2020, 2020 was such one of those years where it was already odd. Like, it started off with like the wildfires in Australia, and I saw all these kangaroos dying and wildfires all over the world.

[2:17:14]             Global warming was really showing itself. I mean, then there was a thing about was it zombie raccoons or zombie something came out? Then there was the killer hornets? Murder hornets. And it was just an odd year of one thing after another, that 2020 was like what are you going to throw at me now? Then when you combine all that that crap with a global pandemic, I just would have told myself buckle in, it's going to be a wild ride the next year and a half two years.

[2:17:54]             And boy it has been you know both good and bad. The pandemic, you know, I married my wife in the middle of this pandemic. I mean, there are good things that happened to myself and to my family during this global pandemic. One of them was getting married. But you know tragedy also came up as the result of my mom passing away. But gosh, it's been a year of growing and experiencing all the emotions that I have never really experienced before.

[2:18:28]             With death and losing a close loved one. I've never lost a family member like this before. So it was coping with that and helping my dad and my sister cope as well and the grandkids cope. It's really been a tumultuous year for us all together.

Amanda:             Well, that concludes the questions that I have for you. Do you have anything that you would like to add?

Mark:                    Please get vaccinated for yourself. Please wear a mask. get your loved ones vaccinated. Protect your loved ones. If your loved one’s immunocompromised, by all means protect them and keep them safe, especially during the holidays.

[2:19:09]

Amanda:             Well, thank you so much, Mark, for everything you’ve said today. Thank you.

Mark:                    Thank you for having me.