Episode 44: Transcript

"My body is doing a damn good job of keeping me alive." - with Heather Petit

Doug French: I have to tell you, I have never felt this flexible, I think, in 30 years.

Magda Pecsenye Zarin: Are you taking glucosamine?

Doug: Better than that. I met a good friend who works professionally as an old person stretcher.

Magda: Oh, did you get stretched?

Doug: I got stretched. Oh, my gosh. 

Magda: That sounds like a real insult. “Get stretched, buddy.”

Doug: Indeed. And I will live that euphemism forever and ever because, wow, that is a compliment. You sit on this big mat and they just bend you into one of those used car lot flying balloon things.

Magda: Like, are you on the floor on a mat or is it more like you're on a massage table?

Doug: It's elevated. 

Magda: You're at the level that they can actually yank your limbs. 

Doug: Yeah, I mean, the best thing, frankly, especially since my back now is in full recovery mode, is this little semicircular foam rod that they put under your spine. So you're kind of, you're forced to put your shoulders back.

Magda: Oh, it goes along your spine, but it like goes the opposite direction of the way your spine usually goes? 

Doug: Yeah. Yeah, I want to go out and just bisect a pool noodle and sleep on it because she bent me backward and she asked me what I do. And I was like, “well, I spent a lot of time at my computer” and she's like, “no shit. All the things you're telling me about that are affecting your body are a direct result of the fact that you spend all this time staring at the screens.” I mean, my arthritis is a lot less. The numbness in my fingers is a lot less. 

Magda: Remember the six or seven times I told you that numbness was from a pinched nerve? 

Doug: I didn't disagree with you. I just finally got off my ass and did it. This is not a fight. 

Magda: Okay. Yeah, but you also spend a lot of time on your bike, and you'd probably be in a lot worse condition if you weren't biking all the time, too.

Doug: But I know you've actively avoided bicycling since I've known you. 

Magda: Yeah, I don't bike. 

Doug: But you do hike, though. 

Magda: No. We don't go out and hike. It's on a paved path. It's on a rail trail. 

Doug: It's a hike. Three miles is a hike. It's not a walk. 

Magda: Okay. Well, that's fine. We have actually walked to Home Depot, gone to Home Depot, and then walked back on the trail. I could, in theory, walk to Aldi. 

Doug: Man, you are living the dream.

Magda: I know. Tell me about it. The only thing that's making this whole thing livable is this rail trail, the library, which is excellent. I'm allowed to have 150 items out all at the same time. And Aldi. 

Doug: Well, let me ask you this. Do you have library fees?

Magda: Yes, but I got very scared because I had a couple of books that had been overdue for a while, but they don't do anything. They just like send you an email like every week or two weeks, hey, your book is overdue. And they still let me keep taking out other books. It said I had $63 in fines and I was like, oh shit! But then I turned in those books and those fines disappeared. 

Doug: What?

Magda: Apparently, once you've turned in the books, they don't make you pay the fine. So I think at this point, since I have some overdue books, I owe them like eight dollars or something. But once I turn in those books, the fines aren't a money making project for them. They're like a deterrent.

Doug: Well, what may be the case, because Ann Arbor abolished fines like eight months ago. Okay. Which was interesting because there was a time when I first moved here, there was a bunch of us who had coffee every Thursday. And one of them, he currently runs the library here. And he was like a chief deputy back in the day. And so one of the rituals we would do is we'd show up on Thursday and he'd say, “okay, who has fines?” And he'd make them all go away.

Magda: I don't know how I feel about that! Oh, my God! That's like when you get stopped for speeding and you have the Police Athletic League sticker in your back window from 20 years ago so that they won't give you a fine. I don't like that. 

Doug: Right. The policy now is there are no fines. They just send you an email once a week saying, hey, you still have this book you owe us. And by the way, if it's not back in 45 days, we're going to charge you for it.

Magda: Okay. That makes sense. But I, I mean, I kind of like this, like, because seeing that I have fines, it's like, “Oh shit, I have fines.” It makes me want to return the book. 

Doug: Right. And now there's no incentive. Yeah. If all is give it back when I feel like it and they'll not charge me anything. That's yeah. There seems to be a little less of a, of a imperative there. Cause otherwise if you knew you're dropping a dime a day, that adds up. Yeah. I have eight books here sitting, staring at me.

Magda: I woke up to the news, the email, that my copy of Welcome to the Hyunam-dong Bookshop is in and ready to read. Everybody has said that this is the most cozy-feeling book of all time. It's about a Korean bookstore. So I'll let you know. I'm going to pick this one up and it's going to jump the line. 

Doug: And this is the thing too. It's, every time I do this, I'll just go ahead and put a hold on some books and then four will come in at once. 

Magda: I know. I know. 

Doug: Why is that? How does that work? That's like the damn cicadas. 

Magda: I know. This is why I have 30 books out all the time. It's because I put these holds on them and then I just kind of get paralyzed by books. And because Mike likes to just sit and watch TV in the evening. So like we're watching Project Runway instead of reading books. 

Doug: Or, you know, if Project Runway had people punching people. Yeah. Project Octagon. 

Magda: You know, the funny thing is, like, Mike is not a guy who's particularly into fashion. He doesn't really care too much about it. He finds out, like, are we wearing wide leg jeans? 

Doug: He gives a shit about that still? What? I thought being in your 50s meant you don't give a shit about anything like that anymore.

Magda: He spent a lot of time dressing in a way that didn't flatter his body. And now that he has figured out that he has exercised and has, is very like muscley. 

Doug: He's got a good body. What's, where can you go wrong?

Magda: Right. But I mean, the thing is, like I said to him, you know, you can look up “what shape should a slim man wear.” And he was like, wow. It just blew his mind. Of course you can look up anything. But he started looking up like what kind of silhouettes he should wear. And so he tries to sort of stay current with that kind of stuff. Right. 

Doug: All he has to do is watch what Anderson Cooper is wearing and do that. 

Magda: That's probably it.

Doug: Which is like, you know, buy 200 black t-shirts and you're golden. Yeah. 

Magda: I would hazard a guess that Mike has more muscles than Anderson Cooper does. 

Doug: Oh boy. Man, shots fired. Are you serious? 

Magda: Well, okay. Number one, Anderson Cooper is a parent of two very small children and Mike is not. So Mike has more time to put into it. And Mike has figured out, like he puts into it, he just grows muscles. Yeah.

Doug: Anderson Cooper is an on-air personality with means. 

Magda: I know. 

Doug: He gets into the gym independent of his parenting time because he has to appear as a war correspondent bulging out of his black t-shirt. I've never seen your husband naked, but I'll tell you, I would bet most of my money that Anderson Cooper has more muscles than your husband does. 

Magda: Okay. I like to think that the person I'm married to has more muscles than Anderson Cooper. 

Doug: That's fine. In fact, if he ever got on the air and he started getting ripped like Anderson Cooper is, he'd be unstoppable. 

Magda: It's true. The only thing that's stopping him is he's not ripped like Anderson Cooper.

Doug: If he were ripped and could design your own database? You're talking about a Renaissance man. I've been in my head about my own health a lot lately just because when Heather talks about dealing with chronic illness. 

Magda: Uh-huh! 

Doug: I mean, we've talked a lot about, you know, how to care for people in your life with chronic illness. Yyou know, our kids and our parents and so forth, but we got to be there ourselves. I mean, this is the real, the standard pressure of the sandwich generation is as much as you can't afford to be sick when you're a young parent now is like, holy shit. Also, and I'm thinking about Jill Smokler, who's got glioblastoma. 

Magda: I know. That's worrisome. Heather had this heart thing, and I don't know exactly what it is. She talked a little bit about it, but it's very worrisome. She has to go get checked out all the time and it has been affecting her health. So she was already sort of confronting this like, wow, I can't do everything that I used to be able to do, I have to really watch, I have to really be careful.

Doug: And then she got Long COVID and her brain shut off.

Magda: Yeah. So you've had COVID once or did you have COVID twice? Because you and I both had COVID right around Christmas of 2019 before anybody knew what COVID was. And I had half the symptoms. I just basically couldn't breathe for four days and was afraid to lie down flat because I thought I was going to stop breathing and die. And I had a horrible headache. And you and I were talking about it like a week later. And you're like, wow, I'm really sorry that happened. And I said, how was your Christmas? And you said, “well, it was kind of weird. I lost my sense of taste and smell. I couldn't taste anything.” We were like, oh, okay. Went on our merry way. And then like three months later, it's like, “Oh, my God, we had COVID!”

Doug: We went on this big trip searching for the biggest Flonase I could find. Because the whole point is I was like mainlining that stuff because every little moment I would get a little breath in my nose, which meant I could taste something, which meant I could taste the Christmas cake. And then during those brief apertures of taste, and I was doing that the entire week, and I was pissed. ‘Cause you get this excellent food once a year and here I am unable to taste any of it. 

Magda: For me, I know it was much better that I didn't know that COVID existed because if I had known that COVID existed, I would have been convinced that I was actually going to die and I would have gone to the hospital. And I think going to the hospital at that point in time would have been utterly miserable and just horrible. Instead, I just like sort of muscled through it on the couch. But then I had COVID again in 2022, and it was a pretty miserable experience. And part of what made it miserable for me was that I was palpably stupid. Like I really just could not think. I couldn't even read a book. So when Heather came on and said that one of her big Long COVID symptoms was just her brain capacity seemed to be diminished. You know, when I was stupid during COVID, it was alarming, but I was also like, oh, this is COVID. 

Doug: That's got to be the crescendo problem, though. When you're our age and you go to a doctor and you say, “I can't remember anything.” 

Magda: Mm-hmm.

Doug: And you're going to get that, well, you are aging and that happens and that level of aphasia. How do you know what's age and what's temporary due to an illness? And also, how do you know what's kind of quasi-permanent because you have a normally transient illness that's now kind of planted itself and given you Long COVID, which means…  Am I going to get my memory back? Is this my new normal? And one of the things I liked about this episode is that she is so even-keeled. When you represent yourself, you know, he who represents yourself in court has a fool for a client, right? Right. If you're your only advocate when you're talking to healthcare professionals, insurance people, you've got to maintain that level of emotion-free journalism. And she used that term to be like a journalist and say, “this is my data. I'm not nuts.” I mean, the overwhelming theme here is how to represent yourself when you need care and you need to convince someone who can offer you that care that you need it.

Magda:  Yeah. I don't think most of us have a lot of practice of observing our own health symptoms and then being able to present them to a health care provider in a way that the provider sort of is trained to need to have them presented. 

Doug: Yeah. That's kind of like the fly. Remember that, Jeff Goldblum? When he starts monitoring like, oh, well, on Thursday, my ear fell off. 

Magda: Right. Yeah.

Doug: So, yes, when you're seeing your body deteriorate like that, at least keep the stuff that falls off and maybe put it in one of those little vitamin pill boxes and bring it to your physician at your convenience.

Theme music fades in, plays, fades out.

Doug: I meant to ask, too, Heather, how do I pronounce your last name? Is it Pettit? [PEHT-itt] 

Heather Petit: It's Petit. [peh-TEET]

Doug: Petit. Good to know. I imagine you have that conversation with a number of people who would assume it's... 

Heather: All the time. All the time. 

Doug: And did you get a lot of jokes about petty larceny when you were a child? 

Heather: No, I did not. In fact, I don't think anybody ever teased me about that.

Doug: Well, do you feel... 

Magda: Congratulations, Doug. 

Doug: Yeah. Do you feel a greater affinity to commit crimes now, knowing that you have that name? 

Heather: No, interestingly... 

Doug: And that's been your name throughout your life? That's not a marital name at all? 

Heather: Oh, there's a story there. So, literally yesterday, I legally changed my name to Heather Petit. 

Doug: What? Yesterday? 

Heather: Yesterday. Everybody has always known me as Heather Petit, except for the first two years of my life. My birth certificate was still in my dad’s last name, Heather Cummings. And back in the ‘60s and ‘70s, when people were blending families more, people just made up the rules. We didn't even have, like, hyphenated names were, like, weird. 

Magda: Oh, hyphenated names were really weird. Like, you might as well have named your kid, like, Rainbow Grass if you were going to hyphenate the last name. 

Heather: Right.

Magda:  But at the same time, British people had those hyphenated last names all the time. It was like, you know, Philippa Edgerton Smith-Smythe. 

Heather: Right. Like, yeah. So I had a little brother, a half-brother, and my family basically just rolled with the new last name, which was Petit. So my stepdad's name. So all my school records are in Petit. All my medical records are in Petit. Like, everything was in Petit. 

Magda: And the school didn't ask for a birth certificate back then? I mean, you know now, like, schools ask for a birth certificate when you enroll with them. 

Heather: They did! They did ask for a birth certificate when I was enrolled in kindergarten. And my mom lied and said that my dad had kept it, in order to avoid having kids with different last names. 

Magda: And because this was pre-internet, nobody said... 

Heather: Nobody said boo. 

Magda: –”Get another copy of the birth certificate.” 

Heather: You know, they were like, “Well, you know, whenever you can get it to us, blah, blah, blah.” And then, you know, eventually people just assumed somebody had seen it. 

Magda: Right. 

Doug: It's no surprise to me that petty larceny might be in your future. Yeah. You were formed by crime. You were formed by a lie. So what else did you have to change? 

Heather: Just my birth certificate. Basically, it's just a legal name change to get my birth certificate connected to my current name. 

Doug: So this conversation is a coming out party for Heather Petit. Congratulations, you are reborn. 

Heather: Well, I changed my name to my name. Yeah. Enormous amount of work to change my name to my name. It's taken six freaking months. 

Magda: Wow. Wow. 

Doug: That's a metaphor for bureaucracy. It takes six months to change your name to your name. 

Heather: Yes. 

Doug: Yeah. This is, this is fascinating stuff. I got to tell you, man, we're coming in hot with federal documentation and the shenanigans therein. So we are on the edge. And we could also launch into a whole discussion of like, who is Heather Petit? Was she the same person seven years ago when all her cells were different? Am I the same person I was? The existential nature of what our names generate, I think. 

Magda: I'm reading a book that's fascinating. It's fiction and it's called My Murder. And it takes place sometime in the future, but not that far in the future. They've figured out how to clone people from their cells. And so there's this pilot program of taking people who have been murdered, and then cloning them from their own cells so essentially they can come back. And so the narrator of the story is a person who has been cloned. And apparently everybody in society assumes that you're the same person. And, you know, you have all your same memories and all this kind of stuff. But she's one of, I think, like six people who have been cloned, like this sort of pilot program of the cloning, and all of them do not think that they're the same person at all. And so they feel like they're living somebody else's life. And it's fascinating. Fascinating book. 

Doug: This could be a fun segue into dystopian science fiction.

Heather: I don’t do dystopian.

Doug: Because I'm reading Brave New World at the moment and, you know, wow. There's an episode of Northern Exposure where Chris Stevens is brought to court to stand for an outstanding warrant for a theft he did 20 years ago. And so the whole plot line is this happened 20 years ago. Does this Chris Stevens match that Chris Stevens? 

Heather: Oh, I remember that! It's not even the same person. Yeah.

Doug: Well, let me ask you this. So if you could be another person, would that person have Long COVID? 

Heather: Definitely not. Definitely not. Oh, my God. 

Doug: If you could generate a clone that didn't have Long COVID, would you eagerly take over that body? 

Heather: Take over that body? Absolutely. Oh, my God. Long COVID, it sucks. 

Doug: My theory is everybody knows somebody or knows somebody who knows somebody who is suffering some sense of Long COVID symptoms. Just like we've learned on this many myriad discussions about menopause, it affects each person in a very different way. And it's hard to pin down any kind of codified symptoms. Some people are really just abandoning all physical activity because they can't walk 10 feet without wheezing. But in your case, when did you get COVID and how long have you been suffering from this? How long is your Long COVID? 

Heather: So I'm coming up on four years. I probably had COVID like in the very, very early piece, like February 2020, basically I had what seemed like a really long, severe cold that had a bronchitis element. It was weird because my lungs felt like stiff, like they were hard, which we've later learned was very typical with COVID infections. 

Doug: Did they say what exactly is happening to make your lungs feel like they're solidifying? 

Heather: Inflammation and fibrosis is probably the thing. The second time I had it, was in June 2020. And I had the eye infection version. Three days of my left eye puffing up, not quite like pink eye because it wasn't like the inner part of the eye. It was like the entire eye bed, like the whole thing around, right? And at the same time, I got low-ish grade fever in the evening for about an hour for those three days. So it was like 100.2. And my lungs felt hot. It was like if you had breathed in over a campfire. So that kind of, “ah!” feeling in your lungs. And then it was gone. No big deal, right? So I continued working through that. And then a week and a half later, my whole body just like dropped through the floor. My oxygen levels, I started feeling dizzy. I started getting dyspnea.

Doug: So it's like apnea, but with a sinister edge to it? 

Heather: Exactly. It's the feeling that you can't get air in. 

Doug: Yeah, that's terrible. 

Heather: So you're constantly suffocating. Right. And I lost the ability to yawn for a year. 

Magda: What?! You lost the ability to yawn for a year? 

Heather: Yep.

Doug: Does it put too much pressure on your chest for sharp intakes of air? 

Heather: I would try. It would try and my lungs just wouldn't go. You couldn't get to the bottom of the yawn. It would be like if you're trying to yawn and somebody like poked you really hard halfway in and you're like, you could never finish it. 

Doug: So how would people know that you're bored? 

Heather: Ha! I just tell them. 

Magda: Wow. 

Heather: So and eventually the impulse yawn went away too. So I had no driver to yawn. It was just gone.

Doug: Was that like the fulcrum? Was that the point where you said, I have to go talk to somebody and find out why the hell this is happening because this is not right? 

Heather: The dyspnea was like not being able to get a full breath in. I was like, something's wrong. I went to the doctor and they were like, huh, this is… They did an x-ray. 

Doug: That's what you want a doctor to say when you walk in. You want a doctor to say, “huh.” 

Heather: Well, actually, that was my old doctor that I'd had for like my whole life. And they're very much like, “well, I guess we're going to explore this. I don't know what it is, but we're going to find out.” So I got an x-ray and my lungs were hyperinflated. So “we're going to send you over to a pulmonologist.” And the hyperinflation is usually seen with COPD.

Doug: Right. 

Magda: Oh.

Heather: The pulmonologist ran every freaking test out there. I had an MRI. I had the full like they seal you into the egg kind of thing with the like pressure change stuff so they can tell how much lung volume you're actually expelling, and they checked all the things. And they were like, oh, you have mild asthma. And I'm like, yeah, I've had mild asthma my whole life. And they're like, well, there's nothing else wrong. My CO2 was a little on the low side but still kind of in range. So there's nothing wrong except one thing: I was only transferring about 67% of my inhaled oxygen to bloodstream. 

Magda: That's low. 

Heather: Yeah. 

Magda: Really low. 

Heather: So the bottom of normal is 75%. So everything else is fine. We don't see any scarring and we don't see any other damage. Your lung volume is okay. Everything else was fine, except you're not getting oxygen through actually into your bloodstream. And that could be a problem with your blood. It could be a problem with tissues in between the lung and the blood vessel. It could be a problem with your lungs. It could be a problem with your neurology, right? 

Doug: So it wasn't just an aging thing. It wasn't just something they didn't say like, “now that you've reached this age, your lungs have moved into a different stage.” 

Heather: Oh, no.

Doug: Well, you never know, right? Because I think that's a good cover-up, right? To say, look, now that you have to pay more attention to this because you've had asthma for a while, but now, you know, older people need to maintain more. Yeah.

Heather: I got more of that kind of question with the cognition stuff, because the other thing that was happening at the same time is that my brain went away. I have some particularly interesting features for my brain. One of them is my auditory working memory is like off the charts. So I could hold about five minutes of everything that I heard in active memory. While talking, taking notes, the rest of it. 

Magda: Wow. Are you comprehending at the same time? 

Heather: Yes. 

Doug: You would be a great improv comic for callback jokes. You would remember something. 

Heather: Yes. But that went to zero. I couldn't remember the first half of the sentence. 

Magda: Oh, my God. 

Heather: Then we got to the second half of the sentence. 

Magda: Now, that's like being me. 

Heather: Yes. And this is a superpower I used for work, right? 

Magda: Yeah, obviously, clearly. And when you didn't have it, it must have been like... 

Heather: Horrifying. 

Magda: Yeah, like being dropped off a cliff. 

Heather: And my ability to access recall was gone. So there was actual other memory pieces that were gone or were spotty, like random spotty. And we're talking short-term memory as well as long-term memory. So one of the first points where I realized that my brain was very affected was, I had a team meeting. There were three of us on the call. We were going over some some strategy for some next actions that we need to take with a particular client. And our senior guy, he was like, OK, so we're going to do one and then we're going to do two and then we're going to do three. And I said, “oh, yeah. And don't forget, we need to do four.” And he said that was two.

Doug: Oh.

Heather: And I didn't remember him ever having said those words at all. It was like it was gone. It collapsed like it had been edited out. Gone. 

Doug: So that was diagnosed as some level of aphasia or something? I mean, what did it take to link these two? What did it take to link the respiratory issues with the aphasia-type issues? 

Heather: There's additional pieces of the aphasia. Finding words was a whole big problem. There was also general brain fatigue and fogginess. I mean, I got a laundry list of the things that affected me cognitively. 

Doug: And it's on brand for you to forget all of them because your memory's shot. 

Heather: Right, because now my memory is in a hole. It is much, much recovered. Now, I can say a little piece in there. One, my doctor was like, hmm, this sounds like the stuff we're starting to hear about Long COVID. 

Magda: Because this was July of 2020?

Heather: This was July of 2020. 

Magda: Oh my gosh. So they didn't know anything about Long COVID at the time. They knew nothing. They thought that if you didn't go into the hospital when you had COVID, you would A, never get it again, and B, there were no effects. 

Heather: Right. Right. And my doctor is like super-experienced. And by the way, my company does a lot of that research. So I was watching for what might be true about me. We were starting to see in some of the research that yes, people with minor infections could have more significant long-term impacts. So when I went to my doctor, I was like, hey, I'm having this thing. It happened a week and a half after I had this infection. I'm thinking it's post-viral. And he was like, that sounds really rational, right? He trusted me to do my research and my reading. He said, bring it to me. We'll talk about it, make a decision about whether something is a good idea or not. And he said, I will look into additional research and talk to my colleagues and whatever else. And so we added things over time to help, but it just took a long time for science to figure out any of the things that might help. And nothing is really, as far as I know, I don't think there's any official treatment yet. So I have a new doctor. My doctor retired. My (new) doctor said, basically, “you know, this stuff that you're taking, I'm not sure if I want to continue to prescribe for you because that's not what it's for.” It's like, there isn't anything for this! 

Magda: Right, right. There's nothing for Long COVID. 

Heather: Right. So she was like, I don't have any background to say this is the right product for you. Let's send you to a neurologist who specializes in this. I have no idea if I'll be able to get in and see them in the next year. 

Doug: That's a side benefit of seeking out doctor appointments now is that there's a 50-50 shot that the doctor you want to see is available in the next six weeks.

Heather: Yep. Or six months. 

Magda: Yeah. Yeah. 

Heather: Even my pulmonologist, she's taking appointments for next February. 

Magda: Wow. And we're recording this in May. Wow. 

Doug: Jeez. 

Heather: I mean, she has other team members. There's PAs and NPs that I can see. And since they do have some history with me, I can see them.

Doug: They know all your names? 

Heather: No, they don't. 

Doug: See, that's the callback. 

Heather: The whole cognitive thing was going on and we're trying to figure out what the heck to do with it. The accommodations that I got were phenomenal. My company is very serious about people's health.

I was like, I can't take notes anymore. And they were like, don't worry about it. We'll back you up. And they would do it seamlessly. So that was great. But I still needed my brain back. 

Magda: Like, it's got to be terrifying to just not be able to think the way you used to be able to think. 

Heather: Here's an interesting factor. So some people with dementia, a lot of people get more anxiety, right? Because they know something's wrong. But some people get no anxiety. They're not bothered at all. And I got that version. So cognitively, I was like, “this is really interesting because I should be super distressed about this.” 

Magda: Wow. 

Heather: And I'm not. Like this was like an additional layer of wrong. I was like, analytically, I can say there's a problem here. 

Magda: Right. 

Heather: I should be upset about this. And I'm like, yeah, whatever. You know, I could lose my job if I can't actually function. If this gets worse. 

Magda: Right. And how old were your kids at the time that this came on you? 

Heather: So four years ago. 

Doug: They were 22, 18 and 15.

Heather: Yeah. The youngest were just heading into high school and everybody had moved back into the house. So my oldest and his fiancee, they moved in.

Magda: Well, because this was also lockdown, right? It's not like if this happened now, you'd have some freedom to move at least. But this was lockdown. At the time this happened to you, people were still washing their groceries before they brought them in the house. We had no idea how it was really actually transmitted at the time. 

Heather: A lot of guessing. A lot of guessing. 

Doug: If I'm reading this right, here you are at this point. You've had COVID and you're wondering, A, why your lungs feel wrong and you can't get a breath. B, you're starting to lose details. You're starting to lose short-term memory. You're blanking out on things you just heard. And C, your attitude's changing where “I seem not to be as upset about this as I should be,” which strikes me as three separate dots, three separate changes. And so how long did it take before these started to converge? You'd link them yourself. Did the doctors agree? 

Heather: Yes. My GP, my family doctor, absolutely was like, okay, there's a whole bunch of things that happen when people get post-viral syndromes. A lot of them are neurological. Some of them are physical. They can be organ damaged. There's all sorts of other things that are going on and we don't know what gets damaged with this one. So anything that's new that's showing up at this point, all of those things, those are probably all the same thing. My pulmonologist did put me on oxygen. 

Doug: Did albuterol factor in there as well or no? 

Heather: I mean, I was already on meds for asthma. 

Doug: Okay. 

Heather: So there were other things too around like physical movement. So I had, severe headaches, I had eye pressure, I had ear pressure, I had sinus pressure, I had severe pain in my tendons, I had pain in the bottom of my feet. Standing up in the morning was like incredibly painful. Like I had the shuffling walk thing going. I had post-exertional malaise or post-exertional symptom exacerbation, so if I physically did too much then all of my symptoms were much worse for a period of time. And it could be three hours or it could be six freaking weeks. 

Doug: So that's how you figured out they were kind of linked because they all fluctuated in tandem in terms of if something went out, then they all did? 

Heather: Yes. They all kind of moved together. And my doctor was like, look, the vaccine may help with your symptoms or it may change your symptoms. But if it's going to do that, it'll be within about two weeks. I had a dramatic improvement after the first vaccine. 

Magda: That's interesting. And really good. Really, really good. 

Heather: Really good. I took Benadryl and it was like a miracle freaking cure.

Magda: Did you have to keep taking it? 

Heather: Every day. If I missed it, everything came 100% back.

Doug: Which is also not a sustainable lifestyle. 

Magda: Well, no, especially not with Benadryl. 

Heather: Benadryl, you can only take it for four months. 

Doug: Yes, which will drive you insane. 

Magda: Yeah, you're only supposed to take Benadryl for four months. 

Heather: Yes. But I tried other things, and one of them was branded Claritin. Claritin does nothing for my environmental allergies, any of the other allergies, like my normal allergies. It does nothing. It doesn't touch it. But even better than Benadryl for the Long COVID symptoms. The head and pain went away. Breathing was easier. A lot of the cognitive symptoms improved. The headaches went away, like a whole bunch of other things. So at that point, I felt really much more able to like function. And I wasn't so worried about I'm going to go downhill far enough that I won't be able to be employed. And when I talk about that, let me give you a perspective. I went to a specialized exercise clinic for people with chronic illness that specialized in people with like kidney disease and Long COVID and other stuff. We determined six minutes of exercise needed two to four hours of sleep afterwards. I added one minute, it took me down for six days. 

Magda: Wow.

Heather: So like it's a hard line.

Doug: It sounds like you kept notes on this sort of thing. You were really meticulous in terms of “let's compile some data” because you're kind of forming your own science at a time when science is trying to catch up with the afflictions. 

Heather: Yes. 

Doug: And the best you can provide a scientist like a GP or whomever else is data to say, I did this and this is what happened and try to find that through line. Because you were saying there were some headwinds here. You must have had some doubters or at least when you get into a conversation about chronic disease, how many people told you, “oh, you're just aging” or worse, “it's all in your mind.”

Heather:  I'm fortunate in a number of ways. One, there's a lot of people who understand healthcare in my family or at least who understand medicine, not necessarily healthcare. 

Doug: Yeah, those are very different things. 

Heather: Yes. My brother was a publications expert for a pharmaceutical company for like 15 years. So he was reading and assembling the submissions to the FDA. Plus, I had other extended family members who had chronic fatigue syndrome post-virally. So they knew that this was a real thing.

So I have a lot of experience at conveying what I'm trying to get across to a doctor because my kids have a genetic digestive disorder that was just starting to be diagnosed in the United States at all, right when my kid was diagnosed with it. So with my second kid, at 18 months, he stopped growing, went from 97th percentile straight across the chart to the 25th percentile. And at 25th percentile, it was like, okay, now you need to go to the children's hospital. Something is very wrong. 

Magda: They really don't want kids to jump off their growth, like their percentile. They don't want them to jump off the curve. And 97 down to 25 is a lot. 

Heather: And he hit 10 before we solved it, right? I saw seven different specialists. We saw the bone growth people like looking for like overall, does he have a growth delay of some sort? We saw the pulmonologist for does he have cystic fibrosis and a weird case of that because the onset is very similar. Allergist, immunologist, GI doctor. The GI doctor was the one who said “There's nothing wrong with the child. There's something wrong with the parent.” Yeah. 

Magda: Like they thought you had Munchausen's by proxy? 

Heather: Basically. Or that my child was going to be short and I just wanted him to be tall. So I was used to handling doctors like that through that whole process and explaining things such that they went, oh, oh, yeah. Oh, hmm. Right? And like managing that whole interaction. So it was like, look, I don't have a medical degree. And I know my child and I know myself and like, let me show you my symptoms. And here's what I'm looking at in terms of research. I'm bringing this to you as a team member. So let's work together to get this solved. So I have all those skills coming into this to help move the Long COVID discussion forward. I know how to say, look, here's the information I think that you need in order to understand what's happening with me. And then let's talk. 

Doug: Well, that's the key, right? If you're trying to bring around someone who might not share your opinion, the best thing is to ground your argument in as much data as possible and not come across as a lunatic.

Magda: Well, but the other thing here in this situation was that she didn't need someone to come around to her opinion, right? She just needed somebody to want to keep investigating. Because it wasn't like now. Back then, it was the Wild West. Nobody knew anything about anything. Nobody knows anything about this. Like, people really know very little about the post-viral world, I guess. 

Doug: You need to find a doctor who's as willing, who wants to learn as much about this as you do. And not a lot of doctors have that morale level. You know, they're just kind of trying to navigate the healthcare system. Did you find that the doctors that you work with, that they have the kind of energy to devote to find out what was going on with you so that you could maintain this level of treatment that's now going on year four?

Heather: My GP, he'd known me for a really long time. He's my mom's doctor. He's my brother's doctor. He's my kid's doctor. Like he's invested in our family. So that piece makes a big difference. 

Magda: But he knew he could trust the data that you were bringing him and that you were looking at it as data, not like “I have the answer.” 

Heather: Yeah. He got to the point where I would hand him something and he would turn around, open the door to the exam room, hand it out to one of the nurses and say, “print 13 copies. I want everybody on the staff to read this.” That trust level first was like huge, right? If I walked in the door to a new doctor, which I'm having to do with this new one, I don't have any credibility as a reliable reporter, right? As somebody who has done due diligence. I also am in the Long COVID clinic in Delaware, which is more of a monitoring program. It's not a treatment program. And mostly that hasn't been much help. So this might not be apnea-related but if you have apnea it may be making it worse. They were expecting that would mean that I had obstructive sleep apnea. I don't in fact, but my oxygen lying on my side dropped to 87 with oxygen on. So that was had two liters of oxygen going and my oxygen levels were dropping just randomly for short periods of time. So this is one of the things that's coming up in the research now is changes in breathing patterns. If you have disrupted oxygenation and breathing patterns or you have dysautonomia where your lungs aren't responding normally, this is one of the things I suspect is true with me. Periodically, my autonomic nervous system is sending my blood away from where all the oxygen is in my lungs instead of towards it. 

Magda: Oh.

Heather: Something I didn't know about how lungs work is that your body automatically adjusts the blood flow to where the oxygen is more concentrated in your lungs or to where there's more CO2, right? So it's trying to pick up the right amount of oxygen from your lungs by delivering blood to the right place. One of the things that there was actually a research study out of Boston University, I think, there was an engineering study that said these people who are walking in the door with this really low oxygen levels, but like normal CO2 levels who are breathing fast but don't realize it. But they're like at 70, right? 70% oxygenation. But they don't have the cognitive stuff that we think of when people are that low. 

Magda: Right.

Heather: The only way that that would physiologically be able to happen is if your blood flow was paradoxically oriented. So you're sending blood flow to where there isn't oxygen reducing blood flow to where there is. And now that was an engineering study not a medical study, but I was like that makes sense, because all the rest of the dysautonomia that kicked off, I can't stand for very long. My heart rate would go to 122 if I just tried to cook dinner just standing there, I don't walk around.

Doug: Is this part of what essentially become the new normal for you? I mean you've been at this now for four years. You've monitored yourself. You've monitored your medicinal intake. Are there certain things you've basically resigned to take on as just part of your new routine? 

Heather: “Resigned” is the wrong terminology, I think, because I don't get resigned to stuff. I am acceptant of what my body is able to do now. I would like that to improve. I'm not willing to wreck my life over it. I'm not willing to be distraught over it all the time. But that doesn't mean I'm not determined. They said, you know, increase how much water you drink and increase your salt. But I can't increase my salt because, you know, I have an aneurysm. 

Doug: Increase your salt? 

Heather: Yes. Increase your salt. I have an aneurysm and I'm sodium reactive. 

Doug: A lot of it sounds like just unplug it and plug it back in again, you know? I mean, it's this boilerplate shit that they're using to stall. 

Heather: No, but, so here's the thing. I was always keeping my sodium low because I need to keep my blood pressure low so I don't die. I was like, okay, so let me just go ahead and try increasing this. Women whose estrogen levels have dropped are more likely to be sodium reactive because their magnesium level is too low. And if they add magnesium, the sodium reactivity goes away. Now, the research on that is like a year and a half old, and it was mouse models. So we haven't even got to people on that one yet. I'd already noticed that this was true, that when I added the magnesium and a little bit of potassium, not a lot, I was no longer sodium reactive. So if I overdid it on sodium, my blood pressure was fine the next day. Now they're asking me to increase salt, but we're talking really increased salt. So normal sodium in a diet, like the normal amount they ask you to do is two grams a day. 

Doug: I know that diet well, yes. 

Heather: Right, right. The sodium requirement for dysautonomia is 3 to 10 grams per day. 

Magda: Man, I would love that.

Doug: What in the crimson hell? 

Magda: Ever since my second pregnancy, I've loved things really salty. 

Heather: Right, right. 

Doug: So it's just soft pretzels and margaritas all day long. 

Heather: Yes, seriously. Yeah. Unfortunately, it's really hard to eat that much salt. Really? I mean, like when you have to, it gets boring really fast. 

Magda: Well, I mean, I think anybody who's been on a low-sodium diet for– 

Doug: Say 12 years. 

Magda: Well, for reasons but still likes the taste of salt, knows all those tricks to pull the salt out of the actual foods and just put it on top, right? So it hits your tongue. But then, I mean, frankly, anybody who's ever gone through Passover and has eaten matzah and has pinpointed the fact that the reason matzah is the bread of affliction is because it's not salted. So I guess a lot of this- 

Doug: I love, by the way, that in this marriage, you have all but converted. It's marvelous. It's-

Magda: It's just living in New York City for 15 years, right? Like I learned all of how to do all of this stuff. 

Doug: Now that you've married a Jewish man, you are far more enthused with the lifestyle. 

Magda: I'm all in with the food. So I think if you were trying to get it in, the fastest way would be just to add it back into the food so that it wasn't like hitting your tongue so hard. You didn't have to put it all on the outside. 

Heather: Right. And also shifting what foods, right? You know, the bread's back, right? Yeah. All the poultry's back. But that wasn't enough. 

Doug: So you started drinking contact lens solution? 

Magda: No. No. I started mainlining Doritos, right? 

Doug: Or prepared food at Trader Joe's. You read those labels at Trader Joe's and some of that prepared food is like 48% salt. 

Magda: You know, it's like one serving and it's like 1,200 milligrams of salt. 

Heather: I also added liquid IV, which is basically the stuff you pour into your water, and salt pills, which are basically a teaspoon of salt compressed into a little disk. 

Doug: Just as tasty as those omega-3 pills that taste like fish going down. 

Magda: I mean, just like the opposite of the sugar pill, right?

Heather: Right. 

Doug: This is your life now. You basically live your life now experimenting on your own carcass. 

Heather: Yes, I do. 

Doug: Seeing what works and what doesn't. 

Heather: A lot of clinical assessment.

Doug: Four years as a Long COVID experimentalist. We're not going to say sufferer because it's clearly something you're coping with, but you have outsized momentum to kind of solve it, given the fragile entropy that our bodies are all incurring at the moment. So I think it's a great piece of advice. One, like Elizabeth Mosier told us, look at your parents' belongings like an archaeologist and look at your own symptoms like a journalist. Given the four years you've been at this, how could you sum up the most important things you've learned about how your body works and how to represent yourself when only you can present what you're going through to a doctor who's invested in your long-term health? 

Heather: Well, I will say for one, the salt works. It's been a huge, huge impact.

Doug: Well, this is a catch-all for any chronic long-term disease. And I wanted to call into effect that you're also walking that thin line between determination and acceptance. 

Heather: Yeah. 

Doug: And I'm sure you have good days and bad. Yeah. And I have other issues, right? So being disabled and having chronic illness is an educational experience on its own in being multi-channel, really. One channel is dealing with the grief because there's enormous amounts of loss, right? And it's loss in both what you dreamed and who you view yourself as being right now. That stuff's there and it's real. But it doesn't have to be entangled directly with the acceptance. I am both acceptant and really pissed, right? You know, pissed at the universe, pissed at the divine, like whatever. Like I have all of the spiritual work, all of the emotional work, you know, therapy, all of that has to still happen. And I'm also acceptant of like who I am right now, where I am right now. This is what I've got. And I'm not mean to myself about it, right? It's not a failure. My body is doing a damn good job of keeping me alive. It is trying all the time to thrive. My brain's job is to help that forward, right? One, don't beat myself up. But also, there's stuff that will help to some degree. And weird shit. I eat candied ginger like multiple times a day because ginger really helps me. It helps my lungs feel better. It reduces a bunch of inflammation and reduces my pain. 

Doug: More so than like turmeric? Because I'm all in for turmeric. 

Heather: The ginger for me helps with the arthritis much more than the turmeric does. And I can tell when I- 

Doug: That noise you hear is me taking notes furiously in my notebook. Yes. Well, Trader Joe's has these little frozen cubes of ginger. I'm going to start popping those every morning. It's like being a car guy. You know, I'm just working on the car every weekend. And in this case, you're working on your own chassis. 

Heather: Yes, exactly. And so then there's always the discovery and the willingness to look for new things. So one of the things that's really important for me personally, kind of as a spiritual thing, is the understanding that there are hundreds of thousands of researchers out there who are trying to learn how our bodies work when they're well and when they're ill or injured, right? And they're always trying to move that line forward. So there's new things that are going to be discovered all the time. This is one of the things that gives me hope in the world is just looking at the vast amount of research that's happening. So that hopefulness for me comes from the fact that it doesn't have to be all on me. There are people out there who are trying to figure this out, right? There are people in Long COVID support groups online who are trying different things and sharing the information like, hey, a bunch of the things that I take now, I take because somebody talked to some doctor and that doctor said, “you know, I did a project in school on this thing about these, you know, two biochemicals somewhere in your cells. Let's try it.” And they tried it and it made a big impact. That kind of experimenting and discovery cautiously, you know, I don't want to go crazy and do something that's like going to cause myself an injury. But thoughtfully, moving forward, following that line of hope is really important to like not getting into a crashing depression about this, right? Depression is super-common in people with chronic illnesses. And when you have something that has no treatments, it's very, very easy to just go straight into despair. I'm not interested in going that direction, but I have a lot of background and the disciplines of not doing that.

Doug: When you talk about realizing that no one knows anything, that's part of the arrival into your 50s. It's just the idea you grow up thinking that when you need some kind of extensive care, someone's going to be there to know what to do. And that still happens, but it's not always the case anymore. In fact, one of the brief sidebars I wanted to talk about as well is the financial aspect of this, your experience dealing with insurance, especially life insurance? I mean, to what extent has your health experience altered your healthcare experience in terms of preparing for worse circumstances? 

Heather: My life insurance was already screwed because I have an aneurysm. So I already had life insurance in place before the aneurysm diagnosis, but obviously I can't get reinsured. So we're just stuck with the escalating cost of that. I have good insurance through my company. It's expensive. I had to get a CT scan and an MRI and this like full lung function test. Those are expensive. Even with my insurance, they're expensive. 

Doug: But they agreed to at least cover their portion without much of a fight? 

Heather: They covered a portion. Oh, yeah. So I haven't had to fight with the insurance about anything. So that's one of the things that's solid about my company and the insurance coverage that they have. I know people who have, and that's brutal. And it's terrifying. Even just the conversation with my current doctor about “I'm not sure if I can keep prescribing this off-label medication that's doing a million good things for you because it's off-label.” Insurance companies might be pressuring them or their practice might be pressuring them. That piece is highly variable and I'm extremely lucky on that. Most of the people I know with Long COVID aren't working or aren't working full-time or they struggle through and it destroys them. I have a very generous leave policy. People care about my ability to be me in this role because it's me that makes the difference so they want me not just how fast I can type, right. If I need to take extra days off, if I need to go take a nap in the middle of the day, they're like “go.” So my organization's very good about that level of stuff. Tell me how many people you know can say that about their companies, right? 

Doug: Yes, we should say that Heather works for Unicorn Technologies. 

Magda: But also, I mean, the horrible part is that Long COVID comes from COVID, which destabilized so many people in their work lives and financially already.

Heather: And I will say that the process, I mean, the things that got thrown open in terms of research on this, you know, the first time I looked at the amount of research we had on COVID, there were like 240 studies. And within a few months, there were like 90,000 studies. 

Doug: And this is what healthcare professionals are saying AI can actually be a good thing because AI can comb through those things and compile trends much faster than any human could.

Heather: Yeah, and patterns and subtle things. Like patterns and subtle things are very hard to catch when you look at the volume of data that we have. And even like labs. So, you know, if it's in the CBC, everybody's going to have it somewhere in their chart. The VA study about Long COVID, which I will send you a link on, has enormous amounts of really interesting information because they took all the VA people who had COVID and looked at their post-COVID health.

Doug: And did you ever flirt with long-term disability at all? Was that even ever in the conversation or no? 

Heather: No. I'm the income for my family. So that would be a very bad scene. So we basically were doing whatever we can to avoid that. 

Doug: That's an added pressure though on you, right? You've got to keep the train running and shovel the coal in all the right places. And if we were to torture this metaphor further and keep it on the tracks, because otherwise the train comes to a halt.

Heather: Yeah. If it took a sudden turn for the worst, we would respond adaptively to that too, right? You know, when I changed jobs in the middle of having Long COVID within the same company, but to a different organization, you know, the boss that I got at that point was an RN. He knew health stuff. So he could say, all right, we're going to adapt here. We're going to adapt there. Tell me what else you need, right? 

Doug: Well, I mean, Unicorn Technologies is really up on matching employees with the bosses they need. 

Heather: Yeah, well, he's definitely a unicorn boss. Yeah, I've been very, very lucky. 

Doug: Well, one of the main things I really appreciate you're coming on to talk about is how you're keeping your attitude up. I mean, you've been frank about the despair you felt, the depression that you're still treating. 

Heather: Well, I was treating. I'm not treating the depression anymore. Depression resolved a long time ago. 

Doug: Really? Does depression do that? I'm asking for a friend. 

Heather: Very long remission. How about that?

Doug: Well, that's a success story in itself, because I really appreciate you sharing that the determination to keep going, to keep looking for a new thing, and the fact that you feel comfortable cooperating as a partnership with your physicians, that you might stumble upon a breakthrough further on that makes your later life a little less constricted by what you're going through now. 

Heather: Yep. 

Magda: I think a lot of that's personality, though. I mean, you're somebody who's always trying to figure things out, and there are some people who aren't. I think for them, if they got Long COVID, it would be a completely different kind of process. 

Heather: I would totally agree with that. People tell me that I am definitely a “what's next” person. So I'm always looking for the forward track. Yeah. But I don't expect the forward track to be right in front of me either. It could be like some diagonal turn or a spiral somewhere, right? 

Magda: I mean, that's why you were the person I went to when I figured out that the brain zaps were post-viral, right? Because I was like, I can tell her, “This is what's happening. Tell me what you're taking” without you thinking that I was asking you for a cure. You knew that I was just like, “What the hell is going on? Let me start testing some things out.” 

Heather: So how soon until you open your Long COVID coaching business?

Heather: Yeah, that's not on the horizon. 

Doug: I mean, do you feel like you want to pay this forward a bit just because you've learned a lot and there are people clearly who are in their infancy understanding this? 

Magda: I think that would be miserable. I mean, well, and also like there's some stuff that you kind of can't help people through. People need an answer. And I think coaching Long COVID people would be difficult because there is no answer. They would need more from you than you could give. And it's just going to suck no matter what.

Heather: And there's also different flavors of long-term, right? There are people I know who are affected in completely different systems than me. Like, I don't know anything about that, right? I do contribute some to some of the support groups, but just encouraging them to go the right direction. But I can't do that all the time. One, it's exhausting. Two, that's not my ministry. I'm interested in organizational change and organizational health. And I do a lot of disability advocacy stuff. But that's not like it's not in the same way. 

Doug: Right, right. Well, normally, this is the part of the podcast where we say, where else can we find you online? Where do we find you on socials? And that might not apply here. But I think what we could insert in its place is the support groups you mentioned. If someone is discovering they have a chronic issue or if someone is looking for information about how to become as knowledgeable about their situation as you are with yours, where do you suggest they go?

Heather: There are a ton of Long COVID groups online. It's worthwhile to check out a couple of them, maybe three or four, because they have very different tones. And some of them may have pretty much people who are very severely impacted and other ones might be different impacts. There are ones that are oriented to people who are interested in being involved in research. There are ones that are involved with like hearing impact and Long COVID or I'm parenting with Long COVID. There's a lot of different ones that are kind of specialized to wherever you are. They won't all fit. 

Doug: Does it also make sense to look regionally so you can meet in person if you need to? Or does that matter? You can just message boards don't know any geographies.

Heather: It's not a thing for me and a lot of people are housebound. There's like a Long COVID singing group for example, like that's–

Magda: A Long COVID singing group?

Heather: Yeah.

Magda: That's interesting because it would seem to me–

Doug: If you have links to these…

Heather: Yeah.

Magda: –singing would be a thing that you might miss.

Heather: It's a form of respiratory therapy for a lot of people.

Magda: Oh, oh, oh.

Doug: Yeah, just like Long COVID ballroom dancing. They should have that too.

Heather: No. 

Doug: Because everyone knows when it's time to take a break, you do three twirls and you need a break and everyone realizes that. The dance marathon takes about, you know, a minute and a half. 

Magda: And maybe it's because I've been online for so long and online interaction and real, quote unquote, “real life” interaction sort of blends together for me, right? But I cannot imagine expending the energy to go meet other people to talk about having this condition that sapped my energy.

Heather: Yeah, I think the extroverts really are the ones who really need those. 

Magda: Maybe? I'm such an extrovert, and I feel like Zoom is fine. 

Heather: I'm not an extrovert. But yeah, I see people who are very lonely. People lose their spouses. Their boyfriend walks out. They have to move home, but their parents are being awful to them. So having an in-person connection is helpful for some folks.

Did you want to try to hit the Will Drill thing real quick before we go? 

Magda: Oh, yeah. Tell me about the Will Drill. 

Doug: Yeah, the Will Drills. We've got to do the Will Drills. That's a message for everybody. So, Magda, before you came on, Heather and I were talking about Will Drills, which I think are the best thing ever. Because we were talking about Heather's mom, who is still with us and still autonomous and has a complicated system of prosecuting her will and so forth. 

Magda: Oh, I thought this was going to be a Will Drill about Heather's husband, Will! Who, by the way, has... 

Doug: Wait, your husband's name is Will? 

Magda: Yes, his name is Will. And his last name gives him the same name as a politician that I don't like at all. 

Doug: Well, I love the fact that this... Apparently, it's been a complete misdirection, which I love. 

Magda: Yeah, totally. I've been thinking this was about Will the whole time. Okay, so it's a Will Drill about like a Will and Testament. 

Doug: Exactly. For anyone out there who's having trouble communicating with your older parents about where your documentation is… This plan of attack may save you if you can get your parents to be on board. And they are called Will Drills. Heather, let us know, what does your mom do to make sure that everything is going to be on the up and up and handled super buttery smooth when the time comes? 

Heather: She's still kicking. She just turned 89. For many, many years, we have been doing what she calls Will Drills. She pulls all the local family into the house for evening. We usually have dinner with it. And she quizzes us on where everything is located. 

Magda: That sounds fun. 

Heather: Like she's hyper organized, right? But it's important to know where are her financial records? Where is the actual will? Where's her medical power of attorney document?

Magda: Yeah. That's the really important one.

Heather: That’s the one you have to get right away.

Magda: Because if you can't find the will for like three, four days, nothing bad happens. If you cannot find that medical power of attorney somebody could die, not die.

Heather: Yeah, my sister comes up from Arlington and my brother comes in he's just a couple miles away. She's like, all right, everybody point to where the will is. Right. You know, at this point, we know it. We've done this a few times, but it takes a couple of runs through it before you actually are like certain. 

Magda: I'm imagining that game from The Price is Right. Do you remember the one where there would be the four prizes and there was like a little easel in front of each prize and there would be four price tags? And you'd have to run and put the price tags and they'd have that (sings piano music from the game). And then you'd come back and they pull the handle and they would tell you like “You have two correct.” Then you'd have to go back and switch them back. That's kind of what it seems like, only with like locations and documents.

Heather: Yes, very much the same thing. 

Magda: “We thought the medical power of attorney was in the credenza, but oh no. It's in the bookcase now.” 

Heather: It's in the bookcase, right? 

Doug: Could this evolve into an escape room or family game night? 

Heather: Family game night, for sure. And then where's her medication list? That stuff, you've got to know where that stuff is right away. 

Doug: Are there prizes? 

Heather: No, there are no prizes, except reduced stress because we don't have to worry about it. We know where everything is. There was a process for practicing having this conversation without being stressed about it because talking about your parents dying is not necessarily an easy topic, right? And your parents might not be interested in having that conversation either. But going through the steps more often makes it easier. 

Doug: Was this going to be a tradition when it was announced? Or did it just come up as a thing for the family to do and suddenly did it a second time and boom, a tradition was born?

Heather: No, she planned it as a tradition. She knew that it was something that would have to be practiced and that would change and that would have, you know, she might decide, like, she doesn't want to keep them in that cabinet anymore. She's going to move them. And we would need to know. I think it's a really great practice. And having dealt with my sister's estate when she did not have a will, I highly, highly, highly recommend people get wills.

Magda: In Michigan, it turns out you can write something on the back of an envelope that's a will, and if you have somebody else witness it, that's a valid will. 

Doug: Even if it says, “just give everything to my children, let them fight it out.” 

Magda: Yeah, exactly. You sign it and date it and get the waitress at the restaurant to sign it, you know, witness it. I mean, and because of that, when I was having minor surgery, I did not have a medical power of attorney before that. I filled out one that I found online. And I never have a printer because something about me breaks printers. And so I just sent it to be printed at the shop near my house. And I kind of knew the people casually from, you know, I get stuff printed like once a month, right? So I went in there and I asked them to print a couple of copies. And then I said, hey, will you guys sign and witness this for me? And they were like, what is it? I told them and they were like, oh, my God, are you going to be OK? And I was like, yes, I just want to have this documentation just in case I'm not. And they were like, oh, OK. So then the funny thing was I felt like I needed to report back in after the whole thing. “I'm fine. I'm fine.”

Doug: Well, Heather, it's been great to talk to you about this. It's a journey, you know, and I'm very happy that so many aspects of your life have helped you along with this. I mean, you have understanding employers, you have an understanding about yourself, and I think you've shared a lot of really helpful details to help navigate this, and I appreciate your time coming along. 

Heather: Well, thank you for having me. It's been a lot of fun.

Doug: It was a lot of fun learning about Long COVID. You know, you don't normally associate those two. It's the Long COVID Comedy Hour brought to you by BetterHelp, which you should never use. All right. Thank you all for listening to episode 44 of the When the Flames Go Up podcast with Magda Pecsenye Zarin and me, Doug French, who has been locked out of Facebook until I set up my dual authenticity crap and I'm fuming. 

Magda: This is how we know you're old. 

Doug: I'm old enough to have interest in Facebook, much less want to rectify. 

Magda: Yeah, I don't know. If you get back in, you need to change your profile photo to the old man shaking fist at cloud.

Doug: Can do. I got that. That is what my standing headshot looks like now anyway, so I'm good to go. Our guest has been the newly monikered Heather Petit, formerly known as Heather Petit. When the Flames Go Up is a production of Halfway Noodles LLC and is available on all the usual platforms and at whentheflamesgoup.substack.com. Thank you, by the way, to all the new subscribers since that last episode about why our marriage sucked. And you also opened up Friday Flames which was great we put that out last week and so if you subscribe you get that in your mailbox every Friday. New episodes are every Wednesday and if you know you know. If you listen on Apple Podcasts please send us a review. That would be just awesome for all involved. We'll see you next week for Episode 45. Until then, have a great week. Bye bye.

Closing music plays.

Magda: You are such a nerd.

Doug: Ha-HA!