47 Doctors, Data Galore, and a Problem Only She Could Solve | Giorgia Lupi

She measured everything about her illness. The measuring turned out to be part of what kept her sick. Giorgia Lupi is an information designer and a partner at Pentagram in New York, and one of the few people alive who can take raw data and turn it into something you understand in your bones and feel in your body. In 2020, a mild COVID infection set off four years of long COVID, chronic fatigue syndrome, POTS, mast cell activation, and a level of disability that left her housebound, out of work, and eating eight foods for an entire year. Giorgia did what she does. She tracked every symptom, every test, every prognosis, and limitation. Then she published 1,374 Days, a visual op-ed in the New York Times https://www.nytimes.com/interactive/2023/12/14/opinion/my-life-with-long-covid.html?unlocked_article_code=1. BlE.keNU. QoyqxESMeC5u&smid=url-share built from her own symptom data, and readers with chronic illness wrote to say it was the first thing they could hand to the people who loved them. That, however, was just the beginning of a story of recovery that was about to take a wild, transformative turn. One that would find her rethinking her approach to measuring what was wrong and shifting to the opposite, realizing, all too often, that what we measure reinforces our reality. In this conversation, you'll explore: The number of practitioners she saw over four years before a single one offered to coordinate her care, and what her body did in that exact moment, before any new treatment was triedWhat she took off her wrist and archived on her hard drive, after believing for years that it was the thing keeping her safeThe first entry in the new spreadsheet she opened in 2024, and why something that small was the turnWhy the online illness communities she went to for support sent her home more frightened every time, and what she went looking for insteadHow she started charting a different kind of data, and finding new answers that not only refuted much of the dire prognosis she’d been given, but also, slowly, brought her back to life. Why her working definition of recovery now, which is not the one she wrote down while she was sick, is not "getting back to normal" A note on how we held this one. Giorgia is careful, and so are we. This is her story and not a protocol, her symptoms were real, documented in labs, and measurable, and nobody in this conversation is suggesting anyone thinks their way out of illness. If you have ever looked fine from the outside while something underneath was quietly giving way, this is a conversation about what your body might be trying to tell you before it has to shout. You can find Giorgia at: Website https://giorgialupi.com/ | Instagram https://www.instagram.com/giorgialupi | Episode Transcript https://www.goodlifeproject.com/podcast/chronic-fatigue-syndrome-giorgia-lupi Check out our sponsors and resources: Visit Our Sponsor Page https://www.goodlifeproject.com/sponsors/ Hosted on Acast. See acast.com/privacy https://acast.com/privacy for more information.

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:00Jonathan Fields?

  So what if the very thing that you were trying to do to save your life was potentially part of what was keeping you sick? For four years, acclaimed information designer, data humanist, and Pentagram partner Georgia Loopy, she tracked every symptom, every test, every metric across 47 doctors, wildly detailed spreadsheets, and two smartwatches. This was what she does. But when that data collection only seemed to reinforce her illness, her suffering, everything that was wrong, she did something terrifying. She took off the watches, she archived the spreadsheets, and fundamentally changed what she was measuring. That simple, yet brutally hard shift opened the door to a recovery that had eluded her

• 0:44Jonathan Fields?

  for years. Georgia documents her brutal descent into illness in a hypervisual feature in The New York Times called 1,374 Days, where she turned astonishing amounts of personal data into a story that readers could see and feel in their chest. In this conversation, she shares the untold story of her equally incredible recovery, from being housebound, unable to work, barely able to move, limited to eight foods, and weighed down with a mounting list of seemingly unrecoverable diagnoses, to completely rebuilding her life and her health. You'll discover what her body did in the exact moment that a doctor, one person, finally

• 1:25Jonathan Fields?

  offered to be that one who coordinated her care. You'll hear about the tiny first entry in her new spreadsheet that really started the turn. You'll learn how abandoning online forums and refocusing on her brain and nervous system began to change everything, and why her working definition of recovery is no longer about, quote, "getting back to where she was before," but about creating something new, something better. So excited to share Georgia's remarkable journey with you. I'm Jonathan Fields, and this is Good Life Project. And we'll jump right in after this short break.

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• 3:11Jonathan Fields?

  This episode is brought to you by Choiceology, an original podcast from Charles Schwab, hosted by Katie Milkman, an award-winning behavioral scientist and author of the bestselling book, How to Change. Choiceology is a show about the psychology and economics behind our decisions. Hear true stories from Nobel laureates, authors, athletes, and everyday people about why we do the things we do. Listen to Choiceology at schwab.com/podcast or wherever you listen. Georgia, it's so great to be hanging out with you. You and I have known each other for years now. I was thinking, you know, it occurred to me that if you had known somebody seven, eight

• 3:53Jonathan Fields?

  years ago, they kind of knew you, what you, who you were, what you were up to, you fell out of touch, maybe they moved to the other side of the world, they had no exposure to you, your life, to anything, and then they moved back last week, they bump into you at a, you know, like getting coffee at a deli or something like this, you look fabulous, you look exactly the same in life as it, they would have no idea that the journey, that not just the health journey, but the really deep transformational journey that you have been on for the last six years or so. So I want to move through that with you, and there's so much that you've learned about yourself that I think is so valuable to everybody, because everybody is going to, at some point, be brought to their knees.

• 4:38Jonathan Fields?

  And the way that we experience that can really change how we feel both during it and what it might look like to move forward from that space, in whatever shape it takes for anybody. Let's take a step back in time, sort of like in the before. Paint a picture of life for me.

• 4:59Speaker 05

  Yes. Well, I live in New York, and I've lived in New York for 15 years. I am Italian originally, but, you know, I really call New York my home. But before the journey that we're going to unpack, I think from the outside looked pretty great. I, you know, recently got a pretty dream job. I am a partner at this design firm, Pentagram, that has been around for so long, and my partners way before me have shaped, you know, a lot of the visual culture through brand identity, various kind of graphic designs. I was really excited about this new challenge. I recently started a new romantic relationship, and so again, the joy of, you know, starting it again with a new person.

• 5:43Speaker 05

  And I was super active, a lot of activities, been doing yoga for a long time, dancing, snowboarding in the winter, and actually kind of packing my time with friends, activity, cultural things. So I would say that from the outside, that was a bit of the picture that people would have seen about me. Then there's a lot that we can't unpack of what I've learned that instead was kind of going on in the background.

• 6:08Jonathan Fields?

  Yeah. And I want to, I want to wait on that, because the unpacking, it happens years forward from there. But we're going to go back in time, because, you know, like, there's, there's a reflection that I think is really powerful. But in so many of us, where we can be in that season of life where from the outside looking in, everything looks incredible, and we're probably even telling ourselves the story of like, this is everything I've ever wanted, and it's all happening, and yet, things aren't quite right. I have certainly lived that, and I'm sure I'll live it again in my life. So, so you're kind of moving through life, and it's almost like a charmed life from the outside in, until, take me there.

• 6:51Speaker 05

  Yeah. 2020, as many of your listeners might remember, was the pandemic. And what seemed to be a pretty mild, acute COVID infection, like, again, many were experiencing at any time during the pandemic, actually was, what I understand right now, was the kind of like the stroke that broke the camel back, or the last drop, or the perfect storm in a body and a system that, like we will unpack, has been probably under a lot of stress for a long time, that actually started a quite harsh journey with my health. So right now, I think we all know that there's an umbrella term that is called long COVID

• 7:33Speaker 05

  for a series of syndromes, and I still think quite unexplained physical conditions and symptoms that can last for way, way longer than the acute COVID infection. And this is really the beginning of my journey with losing my health and losing a lot of functionality. My first COVID infection in 2020 was pretty mild. It really felt like a flu with a particularly, you know, stubborn cough, but nothing like needed to go to the hospital or couldn't breathe. And what happened is, after I felt like I recovered from the infection, a few weeks after, actually, as I was getting back to my normal level of activities, doing yoga and running, I started to feel that my body was off. It wasn't responding to me like before.

• 8:18Speaker 05

  I was getting tired more easily, and with it, there was that kind of fatigue that it's not restored with rest, that was very strange to me. And then I started to have some other symptoms that were puzzling, a constant low-grade fever, constant elevated temperature, with, you know, all of the kind of uncomfortable feeling that having an elevated temperature brings about. And on and on, a list of, in the beginning, I would say, especially in retrospect, kind of mild manifestations of a body that wasn't functioning the way that I remembered it, headaches that manifested with a lot of pressure, that also kind of constricted my field of

• 9:01Speaker 05

  vision, tingling in various parts of my body. And so obviously, you go see a doctor. In the beginning of the pandemic, my primary care doctor was lovely, run the normal test, which, you know, came back normal, and says, listen, we don't really know what COVID can do to the body, and people are starting to talk about long COVID, which are post-viral consequences, and we're really studying it right now. And I remember that at the time, that scared me, because one thing is going to the doctor, I mean, you go to the doctor to try to have some answers, treatment, something for you to get better.

• 9:38Jonathan Fields?

  It's like, give me the diagnosis and give me the medicine.

• 9:40Speaker 05

  Exactly. Or the prognosis for a cure, treatment, or anything. And he was like, we really don't know. And so I could start sending you the specialists, but I kind of feel that we have to wait it out and see if you get better by yourself. That wasn't convincing to me. I'm a very, you know, driven person of finding the causes of things. I work with data in my daily job. And so I started to do my own research, and as I was actually kind of still feeling pretty rough in my body, started collecting data about what was going on. In my job, I do data visualization, design with data as one of the materials that we have to express, you know, concepts and information. And every day, I started to track what I felt in my body.

• 10:25Speaker 05

  And because my doctor didn't really give me any answers, I also started to track potential correlations, what I was doing, my level of activity, what I was eating. I have never worn a smartwatch before, and instead, I went into tracking, you know, my sleep and all of that.

• 10:43Jonathan Fields?

  So, and I want to pause for a second, right? Because when you say I started to track, most people are probably like, oh, she's probably just paying attention and noticing, or maybe jotting down a note or two. This is not what you're talking about, because your brain works very differently than your typical person when it comes to data. Share more detail about what was really like, how are you really doing this?

• 11:04Speaker 05

  At the beginning, I didn't know how long the feeling, not feeling well, if my body was gonna last. I kind of tracked as in like logged and documented on paper in a little notebook every day, starting to write the symptoms. And in other parts of the page, maybe writing again, what I was doing, if I went to a yoga class or if I tried to do something, you know, that is physical exertion, what I was eating. But kind of rapidly realized that that didn't give me any sense of correlation or potential connecting the dogs. And so I started a spreadsheet that became huge, where every day I would track so many metrics. And so, again, observe and record the kind of symptoms I had, how long they lasted, the intensity of them.

• 11:47Speaker 05

  And I think that has, the more that I was tracking and the more that I was feeling rough, the more I added categories. And so biometrics from my smartwatch of any kind, my heart rate variability, my, you know, maximum heart rate and things. Treatment that I was trying, because at some point, my doctor started to, you know, look into the long COVID research and prescribing some, you know, potential treatments. And the spreadsheet was pretty obsessive, if I have to say. But I think that, you know, we're kind of jumping forward because the reason why the spreadsheet kept getting longer and longer and bigger and bigger is because my symptoms and the way that my body was feeling started to deteriorate more and more.

• 12:30Jonathan Fields?

  So take me there.

• 12:31Speaker 05

  Yeah, on a subsequent COVID infection, which is where my path with my illness kind of really went downhill in 2021, really is where I started to really lose function. My heart rate would go up 50, 40 points, passing from sitting to standing and wouldn't really go down. I would feel completely dizzy and couldn't see. I started to develop chronic pain in different parts of my body, which is that kind of pain that really doesn't go away and the volume is high enough that your system has a hard time, you know, again, tuning it down and pay attention to anything else. And the more that, you know, really my body was feeling,

• 13:15Speaker 05

  the more I actually did start to see specialists over and over, more and more, because people then would refer me to another specialist. And over the course of four years, I accumulated actual diagnoses. Because what I have also learned is that if you look, there are things that are wrong with the body. And in that moment, there were things that were really wrong with my body. And I accumulated a sort of series of diagnoses that are famous for chronic conditions. POTS, postural orthostatic tachycardia syndrome, which is that elevation in heart rate that I was describing. Mast cell activation, which is a syndrome that pretty much makes you very susceptible to reaction to foods and allergens. It really has to do with your estamine.

• 14:01Speaker 05

  And at some point in my illness, I could only eat eight foods. In the whole year of 2023, I could only eat eight foods, salmon, chicken, I could eat pork. And so I could eat meat, rice, broccoli, carrot, salad, lettuce, that I don't like particularly.

• 14:19Jonathan Fields?

  So that was the universe for you?

• 14:20Speaker 05

  That was the universe for me. It's really, and my partner was a saint in cooking for us and for me, pretty much that for an entire year and a half.

• 14:28Jonathan Fields?

  Yeah.

• 14:29Speaker 05

  That dysautonomia is a bigger umbrella for general autonomic nervous system, you know, malfunction. And then the scariest one, which was given to me at the end of 2022, which is chronic fatigue syndrome. It's actually the one that weighted the most on me. If you look at the population of people that has been, have been diagnosed with chronic fatigue in the past, however, many decades, the scary thing is that you don't hear stories of recovery. And for my understanding at the time, chronic fatigue is a bit of a life sentence, something that you always have, or at least this is how doctors portray that to me. And the, the, the body, you know,

• 15:13Speaker 05

  dysfunction that go on with chronic fatigue is actually pretty scary. It's that kind of exhaustion that is not, again, restored through rest and where simple activities, like for some that have it pretty severe, like brushing your teeth or showering or, you know, walking up a flight of stair, might cause a really bad crash, as we call, you know, in the, in the chronic illness community. And crashes my last weeks or months. And the fatigue comes also delayed, as in you can't really necessarily say, I'm gonna stop now to do whatever small activity I was doing so that I can prevent it. It's that kind of really weird paradox where you can't rest enough, you can't limit yourself enough

• 15:57Speaker 05

  and you're always feeling really, really bad. My function got pretty limited. I at some point was housebound and bedbound. And I had to stop working, which was pretty, again, terrible to accept for me.

• 16:12Jonathan Fields?

  Yeah.

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• 18:27Speaker 01

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• 19:01Jonathan Fields?

  So when you're in the middle of all of this, I would imagine, and, and, you know, you start with just feeling things in your body and then documenting, documenting and tracking every single thing that you could possibly track. You eventually start seeing more and more doctors. And then you move from a lot of feelings, a lot of limitation and a lot of data, but no diagnosis. Nobody really knows what's going on. This sort of umbrella term of long COVID, which at that point especially, was a very nebulous thing. And then you move into getting, seeing more specialists and then like a mountain of specific diagnoses kind of piling on top of each other, all these different things. But beyond that, like you're feeling this in your body.

• 19:46Jonathan Fields?

  I mean, it sounds like it was profoundly disabling in a lot of ways, the extent where you couldn't even work anymore. Oftentimes you couldn't get out of bed. A lot of people in even part of that scenario, I would imagine, what are you gonna do? You're gonna turn to the online world? To try and figure out? And oftentimes you see forums and all sorts of other support places like that. As you're going through this, was that part of what you were exploring?

• 20:15Speaker 05

  Yeah, it was a really pretty grim period. And the, you know, that was, it was my 24/7 reality. You don't escape from symptoms. You don't escape from the fear of what the symptoms means and the stories that it brings about, especially as you accumulate all of that. And I did turn into online communities. There were at the time, like quite a few channels and forums where you can connect with people with long COVID and with chronic illnesses. And

• 20:47Speaker 05

  It never felt reassuring to me to have that community kind of support, unfortunately, because those communities is full of people that are really suffering and they are in tremendous distress and almost despair. And there aren't positive stories in there. And I feel that unfortunately, the feeling that I had every time that I went in there and tried to, you know, write something or look for something if somebody else has had experienced it, uh, left me probably a little bit more scared every time and opened up, again, because nobody was really coordinating care for me and helping me really navigate

• 21:30Speaker 05

  my array of diagnoses and different potential treatments. That kind of search online also opened up other paths for me to be like, okay, maybe this is, maybe this is that, maybe I need to look into that particular, you know, lab and test. And that again, opened up even more potential avenues that were all super uncertain with no clear path, uh, and with so much to hold together for somebody who's like fundamentally struggling even to remember the basic things, because your brain doesn't even work well when you have all of that reactions to things and reactions to noises and visuals. Like at some point, you know, my, um, being at home when I couldn't do things was not being at home and watching TV. I couldn't watch things. It was too stimulating. It really felt horrible when I had

• 22:15Speaker 05

  to visual and, and, and audio stimuli. It was really pretty limiting. My life became so, so small.

• 22:22Jonathan Fields?

  Yeah. I mean, for somebody who was so, you know, like you, you lived a very, like you said, a very physically active life and intellectually active life, uh, and aesthetically active life. You're also an artist, like an incredible artist who, you're one of those rare people who, who can take data and also has this like really incredible aesthetic sensibility and blend the two to, to create a narrative in a visual form that tells a story. That like my brain just doesn't work that way. I don't know anyone else's brain who works that way. But that takes a huge amount of the ability to actually think and process and focus. And it sounds like that was just kind of gone from you during that window.

• 23:06Speaker 05

  Yeah, completely. Um, I kept my job for a little bit in the beginning. It was the, probably the things that I've struggled the most to do in my life. I couldn't accept that, you know, identity of being sick for a long time. Um, and I was so much struggling going to work and at some point I couldn't commute anymore with the subway. And so I was taking cabs, expensive, you know, cabs to go to work so that at least I didn't, you know, I wouldn't exert myself in the journey. Uh, and like, I really still remember that as much as I love my job, I love my team. It was such a struggle to get to the end of the day, would write little like polymark for every hour where I got to the next hour to the next meeting. It was really hard.

• 23:48Speaker 05

  And it's, I mean, I don't even know how we all, you know, kept producing good work. Like he really, I, I gave a lot of testament to my team here because I had such a hard time doing anything.

• 23:59Jonathan Fields?

  Yeah. Did, did they know what was going on with you or the extent of what was going on with you?

• 24:03Speaker 05

  I think they knew what was going on. I don't think that, uh, this is an interesting point. Like I never wanted to share with them the extent of my struggle, but partly because I didn't want to accept it myself. It wasn't a, I want to pretend to be different. I just had such a hard time accepting that, you know, for a person who's always kind of taken for granted their own livelihood, functionality, mental, you know, ability and physical strength and power, to be faced with so many frightening, constant symptoms and limitations. I just like couldn't, I couldn't really accept it.

• 24:39Jonathan Fields?

  Yeah. I mean, I, I wonder if what was part of what was going on with you also, only because I've experienced this in a much, much smaller, more limited way is that, um, when you make something that you're really suffering with, where there's no clear end and maybe this is you for life, when you make that public to other people, even trusted people, it somehow becomes more real.

• 25:00Speaker 05

  Yeah, definitely. Yeah.

• 25:02Jonathan Fields?

  Yeah. I mean, and that can be terrifying because then it's like, oh, like now I really have to figure things out.

• 25:07Speaker 05

  I saw forty seven different doctors.

• 25:10Jonathan Fields?

  Forty seven.

• 25:10Speaker 05

  Doctors, you know, can include also, you know, at some point I was like, let's start into Chinese medicine or other. So I would say practitioners with probably the vast majority, eighty five percent being actual medical doctors and fifteen percent being physical therapists or again, um, alternative practitioners. And, um, it, the, some I saw because I wanted to go see them, a functional medicine doctor. Some really got referred to me by my, you know, current specialist. Oh, you should really go see this other person. And I kind of constantly felt that nobody knew what was going on. And so they were giving their responsibility to somebody else.

• 25:47Jonathan Fields?

  Right.

• 25:48Speaker 05

  Um, and then obviously the, the tricky part is that then you, you, you call to make an appointment. You, you know, wait for the appointment. It could be a month or two and you don't have a path and you're still struggling and suffering and you feel pretty alone because again, nobody's really taking care of the whole picture.

• 26:05Jonathan Fields?

  Was the net message across all the different people that basically distilled down to, we don't know, but as far as like, like what we can tell you is probably expect this to just be your life forever?

• 26:18Speaker 05

  Yeah, I think that, um, there were a couple of doctors and then especially one that I think was kind of like a turning point for his own attitude in my journey that were more optimistic and said, we don't know, but we are really trying to figure it out.

• 26:32Jonathan Fields?

  Yeah.

• 26:33Speaker 05

  And, uh, I still remember some, you know, negative milestone in this whole journey being, you know, a particular doctor that was very expert in managing chronic condition. I wouldn't say treating and cure, but managing chronic condition that looked at me in the face when she gave me the diagnosis of chronic fatigue syndrome. And she said, Georgia, you can't expect to live the life that you've lived until now. Will you get better? Maybe a little. Will you get back to going to the gym three times a week? No, absolutely. From now on, you have to pace. You have to manage your energy. You don't have an infinite resource of energy like other people anymore. I remember that moment. I remember what was on her desk. I remember the room. I remember everything.

• 27:18Speaker 05

  What was in her trash bin? Like it was really one of those completely paralyzing moments that I think, you know, really probably even changed the way that I was looking at my potential hope for the future in a, in a very negative way.

• 27:35Jonathan Fields?

  And, and I think we have to be really careful here also and make it clear that we're talking about you and nobody else.

• 27:41Speaker 05

  A hundred percent.

• 27:42Jonathan Fields?

  Because there, there are a lot of people who are going through a lot of other things or versions of this. They're not you. They have a very different body, a different support system, and they need to do what they need to do. And for some people, like a, a diagnosis and certain limitations may actually be the way that this is just the way things are. And making peace with that actually is a really important part of their story.

• 28:06Speaker 05

  Yeah.

• 28:06Jonathan Fields?

  Um, so, so I just want to lay that out there. Like we're talking about just your unique experience here.

• 28:12Speaker 05

  Yeah, a hundred percent. And I think obviously any, anything that takes away your health is terrible. But I think there's something especially isolating in not even being able to fully explain to people what it was. And so for some people, I know that the diagnosis were at least, you know, kind of like validating of like, okay, I'm, I'm not crazy. This is happening and this is, you know, my body is wrong. And so it means that it, it's real and at least, you know, I have a plan. Uh, I think that for me, um, and again, you're a hundred percent correct. It's incredibly individual how you react to that. I don't think that I've ever been able to accept those diagnoses and have been fighting them and not wanting them, almost like a teenager that is like, I really don't want these like.

• 28:55Speaker 05

  And I remember the intensity with my very little energy that I had, that I, you know, internally was fighting all of this reality.

• 29:05Jonathan Fields?

  Yeah. I mean, it's just such a tough moment, but you also make a really good point that I want to gloss over, which is this idea of when you're struggling with something that is not visible to anybody else. Somebody can't just look at you and see like, oh, you've got this going on. Like you said, like break a leg, you have a cast or something like this or stitches.

• 29:22Jonathan Fields?

  It's often really hard to express to somebody the depths of suffering that you're in. Um, and it's hard to explain like what it feels like to be in your body in that moment. And I, I wonder if people sometimes don't want to know from the outside in as much as they want to be there and support you.

• 29:47Speaker 05

  Yeah.

• 29:47Jonathan Fields?

  Because especially if, if they see, well, you're just kind of living your life and I'm just living my life right now. They're but for God's grace, you know, like.

• 29:59Jonathan Fields?

  It could be me.

• 30:00Speaker 05

  Mm hmm.

• 30:01Jonathan Fields?

  And I don't want to go there.

• 30:02Speaker 05

  I think that illness is a scary place.

• 30:04Jonathan Fields?

  Yeah.

• 30:04Speaker 05

  For people to go to mentally. Um, and I, I, I agree, it's scary. I feel that even through my illness, I've, um, lost touch with some people in my life that I thought were really close. Um, luckily, the most important ones, you know, then we had conversations as I got better and we were able to patch it up. But I felt, um, very isolated. There was a few friends that kept, because obviously I couldn't go out. Like, you know, of these, you know, it's not, we're talking about my life, but there was no life outside trying to fight and survive these and trying to keep my job. Like, I didn't attend, you know, birthday dinners. I didn't go home to my, to Italy to see my mom for years.

• 30:46Speaker 05

  I didn't even want to receive visits because every stimulation was scary. And also, at some point, I didn't want to be reinfected. And so it was like this isolation. Uh, and through that, I really lost touch with a lot of people. And I believe that it's really not easy to interface with someone who you knew in a certain way, that then all of a sudden has all of these challenges that are scary to look at.

• 31:11Jonathan Fields?

  Yeah. And I would imagine also for, you know, somebody who's a friend, when you literally have no idea what to begin to do to help somebody, that's probably incredibly frustrating also, just to be on that side. And you've kind of back away because you're just like, it's so upsetting to me.

• 31:28Speaker 05

  Yeah.

• 31:28Jonathan Fields?

  To not be able to help in any meaningful way. And my friend can't even ask me to help in a particular way because they don't know either.

• 31:35Speaker 05

  Yes, and even, you know, honestly, my partner, I've been with him for almost seven years. We're, we're still together. Um, I, he's been super supportive from a practical perspective. But I remember that when I was in the thick of it, I really didn't feel emotionally supported. And I know he was trying his best.

• 31:52Jonathan Fields?

  Yeah.

• 31:52Speaker 05

  But by saying things like, hey, it's gonna get better, he just frustrated me so much. And I feel I was in such a negative moment for my reactions where all of the time, but you don't know that it's gonna get better. It doesn't seem like it. And so I think it's really hard to support a person who's struggling so much, even if you're trying your absolute best. Um, it, it was really, really, really hard.

• 32:16Jonathan Fields?

  Yeah. And, and I wonder if you can't ever fully grieve because you, you're still just living in a state of uncertainty.

• 32:25Speaker 05

  Yeah.

• 32:25Jonathan Fields?

  You don't know what's real or what's not, what's, how long or short it's gonna last, whether this really is the future, whether it's not the future. So there's like, there's a process of grieving and moving forward with whatever like might be that is weirdly ambiguous.

• 32:43Speaker 05

  It is. I think that if I, I mean, I feel that also probably there's a lot of that time that I blocked out or don't wanna even, you know, remember necessarily. But I had felt, especially as the time went on, a tremendous grieving from my whole life. Uh, it felt so distant that, because again, like my life was in my bedroom and I hadn't seen people, I hadn't gone out for a long time. Even if I was still there and there was still the possibility that I could get better, for a long time, I actually didn't see it. And so I was looking back at my life. I was, you know, looking at all of what the other people were doing and achieving and progressing in their life and all of that with, um, really the tangible sense of loss.

• 33:27Jonathan Fields?

  Yeah.

• 33:28Speaker 05

  Really.

• 33:28Jonathan Fields?

  And meanwhile, the measuring, the counting, the documenting didn't stop.

• 33:34Speaker 05

  It didn't stop. Um, and I think, you know, it's important to share why was I measuring that? I mean, that's my job to try to figure out things through data. And so it's

• 33:43Jonathan Fields?

  It's like, that's the way your brain works.

• 33:44Speaker 05

  It's the way my brain works. I started to do when I was a kid. You know, my mom told me that I was charting boys that I liked in elementary school. So it's really part of the way that my brain works. If I journal, I journal through some sort of systematic, you know, one subject at a time kind of thing. Um, and it felt very natural to me to try to figure things out, to see if I could see correlations or at least to get to these 15 minutes long short appointments, you know, with doctors with all of my information. On the other end, um, I really felt that I needed to have something that I could control. It gave me a sense of false control when everything was kind of falling apart, that at least if I'm tracking, there's something that I can hold on to weirdly.

• 34:28Speaker 05

  Um, and, um, yeah, I, I did not stop tracking for a long time.

• 34:33Jonathan Fields?

  Yeah. You, I don't know exactly when you wrote, there was a huge feature that, um, that came out of the New York Times that took a whole bunch of the data.

• 34:43Speaker 05

  Yes.

• 34:44Jonathan Fields?

  That you had created and you sort of, you did your data humanism, um, um, thing. And you turned your entire story, you took all that data, massive amounts of data, turned it into this visual story and basically told the story of your descent. When did you write that?

• 34:59Speaker 05

  Yeah.

• 34:59Jonathan Fields?

  In the context of like where you were?

• 35:01Speaker 05

  Totally. So that, the article came out in December of 2023. And with my team, who's been helping me tremendously with that project, we've been working on it for six months. And so I started to work on it actually before one of my worst crashes, that it was the crashes that let me kind of like housebound.

• 35:20Jonathan Fields?

  Yeah.

• 35:21Speaker 05

  Um, and so what happened is that at that moment, I, and to connect to what we were talking about before, I had this frustration where as I was reading about long COVID online, especially in the publications that are for general public, again, to try and explain that condition, um, you could read a list of symptoms like, you know, a headaches and fatigue that a healthy person could really interpret like, well, you know, I'm tired, tired after work. I have headaches too. But I couldn't really see on account of what it means and what it meant for me to live with a chronic condition on a daily basis. And I thought, I have all of these data, I need to do something with it. Um, and I just put together an idea on how I could kind of really

• 36:04Speaker 05

  put together a visual story about my day by day to hopefully make people understand what living with a chronic condition means.

• 36:12Jonathan Fields?

  Yeah.

• 36:13Speaker 05

  Um, I, you know, wrote to somebody at the New York Times that I didn't even know, the director of the opinions, which right now I is a person that I know well. They gave me the opportunity to do it. And so pretty much we published a visual op ed, one of these, you know, interactive, Crowley telling things where at the beginning you see some colorful brushstrokes that fill the page. And as you start to read my story in words, and I was explaining at the time I was in my Brooklyn apartment on a Sunday and was describing a day, uh, you'll see the brushstrokes interact with the text. And so when there was a symptom mentioned fatigue or pain, the color coded brushstrokes would kind of really highlight, um, uh, the, the word.

• 36:55Speaker 05

  And as the story progressed, you'd really understand that there was a different symbol for all of the things that I've experienced. Again, different color brushstrokes for my symptoms. Um, you know, different symbols for doctor's appointment, for reinfections, for further diagnoses, until you get to a calendar of at that point, almost four years, where you, it was all painted and you couldn't pretty much see an empty day. There was symptoms all the time, even if it was colorful, as I didn't want to necessarily paint a super black and green picture. Um, and what also happened in the op ed is that I wanted to start with my story, but I wanted to open it up. And so I asked two members of the online long COVID community one question,

• 37:37Speaker 05

  um, which was, I hope I will be able to blank again. Uh, and the end really ends with countless, really heart wrenching hopes. I hope I will be able to walk my dog again, to play with my kids, you know, to be myself. Um, and so that was like a moment where I wanted to do what we were talking about before, trying with my tools and with the data that I collected to show to people what it really means to, you know, live with something invisible, but, uh, pretty, um, again, debilitating on a daily basis.

• 38:09Jonathan Fields?

  Yeah. And by the way, we'll, um, we'll link to that piece, um, in the show notes for people. Um, what happened when that piece came out?

• 38:18Speaker 05

  Well, like anything that is so visible, like the New York Times, obviously a lot of people reached out to me through comments or, you know, went out of their way to find my email, um, on my website. And I have to say that it was really, um, was very heartwarming to see a lot of solidarity from patients who were sick or caregivers and caretakers. A lot of people even saying, hey, have you tried these? Have you tried that? Which the best intentions, of course. Um, and I think that the majority of people who were sick kind of said to me a version of the following, I finally have something to show to my loved ones, what, again, what it means, what my, what my life looks like.

• 39:00Jonathan Fields?

  Yeah.

• 39:01Speaker 05

  Um, and, and I think that in some way, um, maybe that was a turning point in my story. There was some sense of, and not being completely isolated anymore. It was a moment where I think that my body, I wouldn't say that relaxed, but, um, kind of started to feel, I don't know, that maybe what I was living with, uh, the purpose, maybe at least I was doing something with it. There was a moment of small, I wouldn't call it joy because it's really hard to be joyful when you're so in distress. But, um, I don't know, purpose.

• 39:35Jonathan Fields?

  Yeah. And I, I mean, what occurs to me also, I'm curious whether you're feeling this, is that as hard as it was for you to do that and as long as it took for you to put together that piece when it goes out in the world, um, I wonder if it was also in any way, shape or form, if it like it said something to you along the lines of this may be harder and it may take longer, but you can actually still do this. Like you can still do the thing that you have always done.

• 40:04Speaker 05

  That's a good point, Jonathan. I think that, you know, I fundamentally, like you and I have talked about for a long time, I'm a maker and, you know, seeing something that I've made that, you know, had an impact and people liked is something that does give me a sense of identity that I felt that I was losing before because as much as I was still trying to work on projects for clients, there definitely wasn't anything that I could make that I felt passionate about because again, I was in complete survival mode. So for sure, that was, that was part of that.

• 40:37Jonathan Fields?

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• 41:32Jonathan Fields?

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• 43:06Jonathan Fields?

  This was also sort of like around the time when you then had your, kind of like, your deepest relapse, if you would call it a relapse. And you're still measuring the whole time, right? Because again, this is who you are. This is what you do. It sounds like there comes a time when something in your mind says, I wonder if, like this obsessive commitment to measuring every single part of my descent and then where I am now is maybe causing more harm than good.

• 43:36Speaker 05

  Yes. So two things happened around that time. One was an appointment with a doctor, an internal medicine doctor that I've been waiting to see for a long time, over one year. A wonderful doctor here in your city that had, you know, had experience with chronic conditions for a long time. And I had a lot of hope on him, you know, when you're like, put all of your, you know,

• 43:57Jonathan Fields?

  This person's gonna have all the answers.

• 43:58Speaker 05

  This person's gonna figure it out for me. I saw him virtually because I can like go in and we had like a one hour long consultation, which was a first for me. Usually it was unfortunately 15 minutes. And I don't know that it was my, you know, expectations on that doctor or really the fact that he felt kind of reassuring. And especially one thing happened during that appointment, he said, okay, listen, from now on, I'm going to coordinate your care. I'm going to take care of, you know, all of your doctors because you don't have to talk to your rheumatologists, allergologists, immunologists, you know, cardiologists anymore.

• 44:37Jonathan Fields?

  All of a sudden, you have a point person.

• 44:38Speaker 05

  I have a point person. I really remember in that point, before we even started any treatment, my body finally relaxed. I felt these, almost like, you know, a tension that I didn't know that I was carrying, being like, okay, I don't necessarily have to track and, you know, figure out all these correlations alone. I'm not alone in this anymore. And I think that that in my journey that started, you know, I think the chapter that I call recovery, I think that that moment had a place because you can imagine that the amount of uncertainty, distress, physical symptoms gets your nervous system and your mind to

• 45:19Speaker 05

  be really in a constant, constant state of, you know, being frightened and in a gigantic fear loop constantly with nobody answering to you. So that I think really was a bit of a milestone. And then, but, you know, to be fair, and I loved that doctor, saw him for a long time, we didn't try treatments that we necessarily didn't try with the other doctor. So there was nothing that was, you know, out of the ordinary that I would say that was my recovery medicine. Something else happened that right after the publication of the article, a wonderful woman that I didn't know in person, but I was connected with, you know, through Instagram. She was a writer. We would comment on each other's things, wrote me. And we never really kind of even, you know, messaged as much anymore.

• 46:04Speaker 05

  We just kind of knew who we were, emailed me and said, hey, Georgia, I don't know if you remember me from Instagram, I had long COVID too, and it was pretty grim for a while. I am, I'm much better. I'm almost recovered and I was wondering if you'd be willing to talk to me. What I have tried is controversial, is a brain retraining program, but I would be willing to talk to if you want to. And at that point, I had tried brain retraining and different, you know, others, mind body approaches that we can talk about before. But nothing really worked for me and I have my theory on why, but I felt compelled to talk to her. But we had a call, like a 30 minutes call, and she explained to me her

• 46:47Speaker 05

  path to going, to getting out of long COVID. And I actually felt that I needed to give it another try. I have seen a lot of before, you know, stories of people getting better through a different, you know, combination of mind bodies approaches and brain retraining. What I was always skeptical about looking in these stories online is are they trying to sell me something? Is somebody paying them to, you know, endorse this program or that kind of a thing? And the conversation with Molly was very genuine and I kind of felt that we had similar stories. And I was also at that point where I have tried, you know, at that point I tried everything. I was just also so really sick, actually, of

• 47:31Speaker 05

  not feeling that I had any agency in it. And so I committed to try to look at my journey and what was going on in my body and with the symptoms through a different lens, which is the one of the brain that can really play a big role in how these, you know, variety of body feelings have, you know, a play in your body.

• 47:54Jonathan Fields?

  Yeah. So here's, and you and I have both talked about like brain retraining and it comes in various different names, very different worlds. Regardless of how it's offered up and who it's offered up by and like, like whether it's research or not, like one of the fundamental tenets which you and I both struggle with, and I struggle with to this day, I think you've made more peace than I, is this notion that,

• 48:22Jonathan Fields?

  You have to believe in its possibility to help you.

• 48:28Speaker 05

  Yeah.

• 48:28Jonathan Fields?

  Before you can point to your own lived experience or to data, like hard data that proves that this actually can be effective, which is so contrary to like everything that you've done your whole life. You're like, show me the data.

• 48:43Speaker 05

  Yeah.

• 48:44Jonathan Fields?

  So how did you wrap your head around that?

• 48:45Speaker 05

  It was a complete leap of faith. It's one of those things that I don't think one can explain how this switch happens in your brain, but I fundamentally really felt everything that I've done so far is really not working. My way of needing to find a cause that would cause the evidence is a more test and more tests is really not working for me. And you know, in the beginning I said, why don't I give it a try for one month?

• 49:12Jonathan Fields?

  Yeah.

• 49:13Speaker 05

  For one month, I'll be very disciplined and diligent and I'll really wanna believe that this can help me. And then I'll reevaluate to the point that I put a little reminder on my calendar, just because so that I could put it out there to be like, are we still doing brain retraining a month after? And I committed so intensely, I committed to these as intensely as I committed to tracking before, like with the same kind of energy to be like, now this is what I'm doing. And you know, just generally, I know that you've had wonderful guests that have talked about nervous system regulations, brain retraining, and I am really far away from being an expert on that. But my understanding of how these

• 49:52Speaker 05

  other lens of looking at what your body might be communicating to you is, is fundamentally to consider that a lot of body sensations that become chronic, a lot of the symptoms that become chronic, could be a maladaptive stress response, something in your brain that got stuck in a loop and it's really sending signals of danger communicated through different parts of your body to your body. And the whole idea of whether it's brain retraining or nervous system regulation, there are so many tools and methods, is to first of all, believe that your brain is, one of the contributing causes is not the biggest causes of what you're experiencing. And now I wanna really put a caveat. When

• 50:34Speaker 05

  I mean our brain, I don't mean our mind, I don't mean that if we only think positive, everything's gonna be cured. It's really imagine a rehabilitation from a stroke. There's a part of your brain that has been taken over in a wrong way. And the idea with, again, a lot of different tools and ways to interact with your body and yourself, is to recognize and be aware anytime that you are in a loop. In a loop which could be body scanning, am I feeling this? Am I feeling this more? What does it mean? And so giving a meaning to your symptoms, which could be, this means that I'm getting worse, this means that I'm not gonna recover. Oh my gosh, this is gonna, you know, get more serious. Anything that is that. So recognizing it, sometimes it's hard to recognize is you're in that state

• 51:19Speaker 05

  where you're just embedded.

• 51:20Jonathan Fields?

  Yeah, it's very hard to like go meta and actually say, oh, this is what's happening.

• 51:25Speaker 05

  What's happening. So recognizing interrupted. And again, interrupting it might have so many forms. In the more top-down brain retraining, it means actually literally saying, stop, stop, stop, or like, stop. And like, sometimes you even have, if you're alone in a room and not with people, physical things that you have to do, you physically change place so that your body and situations around you are changing and you're interrupting. And interrupting can instead mean doing something body-based from a somatic perspective. It can mean, you know, looking around, naming things, it can mean anything. But interrupting that loop and redirecting. And redirecting, again, could be having a list of positive

• 52:07Speaker 05

  thoughts that are visualizations of health that you can go to, doing something pleasant from a body perspective, focusing on something else. And it seems really simple, which it is, but it takes an incredible amount of work to do it when you're constantly in these activated and fight or flight stage because things are terrifying.

• 52:26Jonathan Fields?

  It's interesting, right? Also, because part of what you're describing, and somebody joining us may be hearing this and say, that sounds really interesting. But there's another thing that I'm hearing. And so I wanna address this head on, right? Because somebody's gonna, a whole bunch of people will be like, this sounds really interesting to me. And then somebody else is gonna be like, I'm suffering a lot. I had a number of the syndromes that you described. It's very real. The pain is very real. The inflammation is very real. The illness is very real. I am suffering. And, but what I hear you saying is, part of this is being caused not by an illness, not by an injury, not by anything that is

• 53:09Jonathan Fields?

  current in my body right now, but by my brain, basically a faulty loop in my brain continuing to reproduce the symptoms in me. So you're telling me that I'm causing this to myself?

• 53:21Speaker 05

  This is very important to address. And I wanna make it clear that if, at the thick of my illness, or even when I was like mildly trying brain retraining, somebody told me that a brain retraining program, or you know, anything that didn't have an actual, you know, chemical component, like a medicine would have cured this, I would have really wanted to punch them in the face. Like, I'm doing, I'm serious, really serious, because those symptoms are real. They're real, they're measurable. There are physical

• 53:49Jonathan Fields?

  I mean, you measured all of them.

• 53:50Speaker 05

  I measured that. My tests, like at some point when I started to go to specialists, I had those diagnoses, not from anecdotal conversations about my story with the doctors, but from all of those tests that were wrong, anomalies, actual anomalies in my body.

• 54:03Jonathan Fields?

  Right.

• 54:05Speaker 05

  And I also really, of course, wanna say, I am not a medical professional. This is my story. And then I really understand that it's incredibly controversial right now, because anytime that we hear about something that has to do with something from the neck up, your brain, your mind, like we immediately go into, oh, that's so you're causing it. So you should just calm down and everything will be fine. And this is, you know, couldn't be farther from the truth. I think we have to think about it. If one wanna look at these syndromes through this lens, which again, might not be a conversation for everybody, it's really understanding that it's more of like it's a brain injury. It's an injury in your nervous system and your brain, not a physical malfunction of an organ or a viral persistence in your body. And I think, you know, even though, even

• 54:51Speaker 05

  the world mind bodies.

• 54:53Jonathan Fields?

  Yeah, people really struggle with that. And you know, and longtime, you know, like, community members of ours have known that, over the last few years in particular, I've had a number of people on to talk about this in various different ways, often in the context of chronic pain. And I'm looking for primary researchers at universities, and through this type of protocol that you're talking about, had stunning results, and it's not fake.

• 55:16Speaker 05

  Yeah.

• 55:17Jonathan Fields?

  And I'm not gonna go out there and say like, everything that you see on the internet and every intervention like is the same. But I think you and I are both fascinated by like, okay, so like, there is, like, is there science behind this? And where is it? And what are the, what are the validated protocols that people use?

• 55:33Speaker 05

  Yeah. And I think you're, I mean, even in the past season of your podcast, or two seasons of your podcast, you've done an amazing job at, I think, speaking with some of the people that I've personally been following. And I also really just wanna acknowledge that when somebody's suffering very much, like all of the people that are living with this condition, like I was suffering tremendously, it's really easy to feel dismissed when we are saying that there's not an actual physical, you know, condition in the body. So this is all a completely delicate conversation, and I wanna respect that. And this is my own personal story, and I don't wanna claim that this is the only way that people can get better.

• 56:13Jonathan Fields?

  Yeah. I wanna talk a little bit more about sort of like, than how, like, how this helps you. But, but I don't wanna leave behind like the measuring point, right?

• 56:26Jonathan Fields?

  Is part of you then sort of like shifting gears into a different mode or a different approach to say like, like, can something else actually make a difference for me? Changing your lens on measuring what's going on on a daily basis?

• 56:38Speaker 05

  Yeah. Part of my understanding, as I decided to believe that, you know, I could have some agency in it, was also the understanding that unfortunately, as much as I thought that all of that tracking helped me, what it ended up doing was constantly pointing me to observe what was negative, constantly pointing the focus on my symptoms. And part of the way in which you start to interrupt a pathway in your brain that is tending to go towards this, again, body scanning, overanalyzing, is to try to look at that, I would, I wouldn't say as least as possible, but try to point the focus somewhere else. And so what I did, and again, it was a total leap of faith, and it felt frightening, I took out my smartwatches.

• 57:23Speaker 05

  I had two at the time. I felt very naked. Where's my heart rate? What's happening right now? And I changed my spreadsheet. I started a new one. And so I archived in a place where I could still have it, but far away from my shortcuts, this big spreadsheet of the symptoms. And from 2024, I started a much smaller spreadsheet that every day was tracking my progress and what was good in the day. And we were looking at my spreadsheet earlier.

• 57:53Jonathan Fields?

  Like, what would a couple of entries look like?

• 57:55Speaker 05

  I mean, the first one, the first day was I could walk outside for 30 seconds. Like, that was the extent of where I was.

• 58:02Jonathan Fields?

  Yeah.

• 58:03Speaker 05

  Some other days where I could lay in the sun in the backyard in the afternoon without feeling too terrible. Some other days where I felt like standing felt a little more stable. But you know, if I think about it, I could have had those moments, even as I was collecting the other data.

• 58:20Jonathan Fields?

  Oh, that's interesting.

• 58:21Speaker 05

  Because there were 30, 30 seconds that I could walk.

• 58:23Jonathan Fields?

  But like, you weren't looking for those moments. So you weren't tracking them?

• 58:25Speaker 05

  So I wasn't tracking them. I wasn't paying attention to that.

• 58:28Jonathan Fields?

  Yeah.

• 58:28Speaker 05

  Because I am sure, I mean, it's a long time ago, but I am sure that sometimes that I was brushing my teeth, at that, you know, particular moment, I wasn't felt that I was completely fainting. I didn't pay attention to that. I was paying attention to how from the bathroom to the bedroom again, I was actually feeling like I was fainting. So that was a very important shift. And my progress, you know, slowly and absolutely nonlinearly, you know, not in a chart like you would expect to go up, started to get a little bigger. And my window of tolerance for things started to get a little bigger. It took me a long, long time and hard, hard work to recover, this I wanna say before

• 59:10Speaker 05

  we unpack the rest. But that shift in data collection, the shift in attitude, the interruption of those pathways that probably kept me sick for longer than I needed to, was definitely the shifting point.

• 59:25Jonathan Fields?

  So would it be accurate to say that you shifted from?

• 59:33Jonathan Fields?

  meticulously tracking losses and suffering to tracking possibilities and wins.

• 59:39Speaker 05

  Absolutely accurate.

• 59:40Jonathan Fields?

  Yeah.

• 59:40Speaker 05

  To the point that, again, following, there's many online programs, there are brand retrainings. So I don't think necessarily one is better than another. It's about you finding a spokesperson for, you know, those videos that explain things that you click with. Part of a lot of those is also to start to look at health and look at hope. And I was spending one hour a day, like prescribing that program, to visualize health. And I, you know, I, in preparation for this, to put my head onto that journey, I kind of printed out some things that were part of my notes at the time. And I had a list of visualizations of health, meaning, you know, beautiful places and photos

• 1:00:21Speaker 05

  that I could visualize and out loud, like in the present tense, saying, I am here at the top of this mountain. I'm feeling my feet on the ground, I'm seeing the beauty, I'm feeling the air, I am going for a hike. And I needed to do it with like an extent of physical sensation for one hour a day for a long time and months and months. And so it was really looking at, again, looking at what in the present was actually good and looking at the future only through the lens of what is possible and really training your brain to do it.

• 1:00:55Jonathan Fields?

  The power of, you know, visualization is wild in terms of improvement and things like that. So you start to really engage with these practices. You start to say yes to them. You start to change the way, you're still tracking, but you change what you're tracking to be more on like the possibility side of the equation, the hope side of the equation. And you make a commitment to do 30 days, like you're just like, I am all in on this. And then I'll get, I'll reassess in 30 days.

• 1:01:29Jonathan Fields?

  Knowing you, I know you reassessed.

• 1:01:32Speaker 05

  Definitely.

• 1:01:34Jonathan Fields?

  Was there, did you see enough of like the slightest evidence of like, there's something happening? Even if you weren't fully convinced, you weren't fully recovered, like there's enough evidence here for me to be like, oh, there's something going on.

• 1:01:50Speaker 05

  Yeah, and to be clear, up until two years after, when I could kind of say out loud, I finally feel recovered. I think up until that point, I wasn't a hundred percent sure. You just really don't know. It's not that, again, there is an X-ray that points to something that then, you know, the X-ray is solved and then you're cured, it's really very much a little phase. So, but after those 30 days or, you know, I think that even before, I was already just looking at that little thing on the calendar and saying, I'm gonna keep doing this. What shifted was not necessarily that in a month I regained a ton of functionality, but I felt a complete different, you know, feeling in my own nervous system.

• 1:02:31Speaker 05

  I kind of finally felt that there was like something grounded, something that was more stable than before. And I really wanted to cultivate that feeling. I also just started to fully believe that, you know, there can really be a connection between the brain and the physical sensations in the body, because I had a couple of evidences and moments in which, I mean, I wouldn't say that I could turn down the volume with some practices, but something shifted, I could feel shifts in my symptoms. Again, I can't say that, you know, I was able to turn down the pain, but like there was a shift in my body. And so I really wanted to keep going.

• 1:03:08Jonathan Fields?

  As you start to, so you commit to this for, as you said, like a full two years.

• 1:03:16Jonathan Fields?

  And slowly, painstakingly, very, very slowly, and like you said, not a straight line. There are good days and then there's like things about, and, but the jagged line, but the trend is moving in the right direction until a couple of years later, you get to a point where you're kind of like, I'm pretty much back. As you're nearing that point, are you starting to think about the life that you had before? And seeing tells that maybe it wasn't the life that you thought you were living? Now that you're sort of like, you're just reflective in a very different way and connecting dots in a very different way?

• 1:03:53Speaker 05

  To the point that I would not say, two years after, I felt like I was back. I was a very different person.

• 1:04:00Jonathan Fields?

  Interesting.

• 1:04:01Speaker 05

  Yet I felt that I was recovered from the condition that kept me sick for a long time. So definitely, so the work that I have done in these two years, in the beginning, and again, we talked about volumes of the symptoms, was very military and top-down and, and at the same time, at times, body-based, but it wasn't any kind of inner work. It was really trying to interrupt, retrain my brain, retrain my nervous system.

• 1:04:29Jonathan Fields?

  Very technical, so.

• 1:04:30Speaker 05

  It was kind of technical, actually. And I believe that for me and for how I was in my journey, that was needed to, again, reduce the volume so that I can start to look at the things that probably were causing that, you know, tension and settlement, that if I'm being honest with myself, I've always felt before I got sick. One of the, you know, things that I really felt at some point is that the life that I was living before, even if in surface was great, probably was really contributing to why my system was in such a fragile state before that COVID infection.

• 1:05:09Speaker 05

  I've learned it so much later and with a lot of work that, again, passed from being purely nervous system and, you know, brain-related to looking at the inside, to looking at the parts of me that weren't aligned with the life that we were living, to looking at post-trauma, personality traits, ways of living, attachment styles even, all things that I see right now that have kept my nervous system in a, in a mild state of alert constantly for the first, you know, 37 years of my life. Because to me, there was something about, again, the control of the spreadsheet and the letting go. I was still going about my recovery for the first phase with the same controlling energy

• 1:05:53Speaker 05

  that I had in the beginning of my illness, starting my illness. And so I needed to do it right. I needed to know that I was taking the right steps. I've documented all of that. And I think that that brought my journey of recovery to be much slower and harder than it could have been, though I needed to go through that. But something also important is that my own timeline for my recovery was, in two months, I needed to be there. I needed to have a certain kind of outcome. And I think that it was only when I let go of the timeline, the things started to shift again, right?

• 1:06:24Jonathan Fields?

  So, I mean, it's really interesting, right? Because I'm fascinated by the concept of sliding doors. You know, like if you had never gotten COVID one time, let alone four times, if you had never ended up with long COVID or any of the various syndromes that you were then diagnosed with and gone through this brutal, brutal season. If, if looking back now, you can see a whole bunch of contributors to elevated levels of stress and activation. You almost wonder, you know, like, would something else have at some point

• 1:07:02Jonathan Fields?

  triggered some version of what you went through?

• 1:07:05Speaker 05

  I think so, because to me right now, and I, what's fascinating to me is that, you know, I still think that before this illness, I was a smart person, interested in my inner world, interested in, you know, the science about your own personality and all of that. But I definitely didn't have the awareness of understanding how my system has been very strained by, and I mean, I can really name it. I mean, nothing traumatic really happened in my life, but from my childhood, I've kind of always felt a little unsettled. There was always something a little missing. And, you know, if I look back, I was born in the eighties, my parents were just perfectly lovely people that were trying to do their best, but they were very cold, they were very distant.

• 1:07:50Speaker 05

  It worked very much. I was an only child and my parents were both only children too. And so I think that also this other thing that was underlying always, you know, a part of my narrative is I will be alone, I will not have people.

• 1:08:04Jonathan Fields?

  Interesting.

• 1:08:05Speaker 05

  You know, no cousin, no aunts, no uncles. And so I think there was a little, a little bit of like a scarcity kind of mentality throughout my life.

• 1:08:15Speaker 05

  And then, you know, like many other kids, I really wanted to impress these parents that were not paying so much attention to me. I started to, you know, wanted to be the best at ballet, wanted to be the best at all of that. And I think that that contributed to probably a pushing mentality in that sense. And on the other sense, because I felt that sense of, I'll be alone, this doesn't feel right, I constantly wanted to fill my time and pack my schedule with people and activities, right? That already, I think for, you know, if you pile them up, contributes to a bucket, that, that, that it's kind of spilling. And I mean, I think that then, you know, the, the previous couple of years before the illness itself,

• 1:08:59Speaker 05

  you know, my dad died in a car accident. And, you know, that was, again, even thinking about my smaller family and my mom living in Italy, a bit of a traumatic event that happened. I, we ended with my ex-husband, a 10-year-long marriage, I changed my job. And so I think that happened in the two years before the pandemic itself. And then the pandemic itself, that for everybody was terrifying. But I think that all of that and the, you know, no matter the yoga and the meditation that I was doing, I really wasn't looking into what was keeping me in that, you know, pushing, achieving and stressful way of living.

• 1:09:38Jonathan Fields?

  Yeah.

• 1:09:40Jonathan Fields?

  And again, I want to make it clear to anyone joining us, you're not saying, and we're not saying, oh, you did this to yourself.

• 1:09:47Speaker 05

  No.

• 1:09:48Jonathan Fields?

  Yeah, like, we all live in a world where we carry a certain amount of stress, of dysregulation, of capital or little t, trauma, not because we did something or something was definitely done to us, because it's just life.

• 1:10:03Speaker 05

  Yeah.

• 1:10:04Jonathan Fields?

  You know, and some of us, our systems are, can handle a lot better just intrinsically. Some of us not, and some of us, we can, we feel like we're handling it really, really well for a really long time. And our systems tell us eventually, like, we're not, I happen to be one of those people too. Like, my mind, I've learned, can take so much more than my body can take.

• 1:10:25Speaker 05

  Yes.

• 1:10:25Jonathan Fields?

  You know, I've, I've got great mindset practices, I've got good self-care, and it has often masked a reality of the way that I'm living and how hard I'm pushing and what I'm chasing in a way that's really not functional or healthy for me. And eventually, my body responds, not in a good way.

• 1:10:46Jonathan Fields?

  And.

• 1:10:48Jonathan Fields?

  This is just being human.

• 1:10:49Speaker 05

  It is. Sometimes, I mean, it's so interesting because throughout my recovery, I thought that the goal of recovery, and I even wrote it into, you know, they have you do this kind of ladders of the hopes and what you wanted. At the end of it, full recovery for me meant being able to do exactly what I want, when I want, how I want, and feel great. So it was still a pushing, you know, my body is a machine kind of mentality. What I'm understanding about recovery right now, it was to finally be able to, this might sound like a cliche, but it seems so true to me, to finally be able to see myself and to be able to be in touch with who I am, what I need. And this is beautiful.

• 1:11:34Speaker 05

  It felt when, you know, I remember that I met some coaches that I work with for at times that, you know, really fundamental part of my recovery is. And when they were actually saying to me, recovery is not never needing to rest. Recovery is being so in touch with yourself that you're gonna crave rest. And I just didn't like it. I was feeling like, but come on, I don't.

• 1:11:55Jonathan Fields?

  Like, there's only so many hours in a day, I've got things to do.

• 1:11:58Speaker 05

  But it is so beautiful right now to understand what they meant. I also think that for me, again, things that for people that are more in touch with those, you know, ideas might sound very banal, but I don't think that before, you know, two years ago, I've ever had compassion for myself. I didn't know what that word was. I was looking myself in the mirror in the morning and seeing what I needed to do, what I wasn't, you know, finding whatever my appearance was, what I should be doing and stuff. And I've never just seriously looked in the mirror, saw my eyes and saw a person. Like, it was, at some point, it happened during all this process of being able to sit with the discomfort enough

• 1:12:41Speaker 05

  that you open up curiosity for what's underneath, right? That was like such a fundamental opening for me. Even though I have done therapy before, again, I was interested even in all my 30s into all of our inner world. I think that unfortunately, probably I needed to go through an extreme version of my body shouting no to be able to listen.

• 1:13:03Jonathan Fields?

  I'm picturing you coming home from therapy sessions and spreadsheets.

• 1:13:06Speaker 05

  Yeah, of course.

• 1:13:10Jonathan Fields?

  Plotting the grass. I love the notion that you said, I'm not like back. I'm not finally back to where I was, but like, I am now moving forward. Like, I am moving into, like, there's a new me, there's a new life, there's a new way that I'm showing up in my life and that it's showing up for me. And it's, it's different.

• 1:13:30Speaker 05

  Yeah.

• 1:13:31Jonathan Fields?

  In all, all the ways. I'm just, I love learning from you. It's been incredible sort of like seeing.

• 1:13:41Jonathan Fields?

  You know, we've had conversations when you're in a tough place and we have the conversations and sort of like emerging more from it. There was a chunk of time where, like, we weren't really in touch and I had no idea what you were doing. And I think that was probably during the window where you were just really so inward facing, which you needed to be, to kind of like just do what you needed to get through every day. And I'm glad to be sitting here with you, having this conversation, where you're feeling the way that you're feeling. It feels like a good place, Rustica and Pro Circle. So in this container of Good Life Project, if I offer up the phrase to live a good life, what comes up?

• 1:14:14Speaker 05

  To live a good life means to believe that you're exactly where you're supposed to be. I could unpack it. In my journey, many, many times, I didn't want to be where I was so many times. Through the illness and through the recovery, I wanted it to move faster. I wanted it to be one of those stories that I was seeing online. But I need, I learned that I absolutely needed to go through all of the things that happened to me the way they happened to me, because that's the only way. And there's so much freedom in believing that wherever you are now, it's the place that is conducive for you to be whoever you are because of that.

• 1:14:58Speaker 05

  That is what really, to me, frees you to finally be in the present and not look so much forward anymore.

• 1:15:05Jonathan Fields?

  Thank you.

• 1:15:06Speaker 05

  Thank you, Jonathan.

• 1:15:07Jonathan Fields?

  So let's talk about some of the things that I'm still carrying from this conversation. The thing that keeps coming back is really how ordinary the turning point was. She didn't find a miracle cure or a miracle drug or a miracle treatment. Georgia just changed what she was paying attention to and documenting. For four years, everything that she measured was a measure of loss, of suffering. And every day, the spreadsheet told her the same story about who she was becoming. It reinforced it. When she archived it and opened a new one that only recorded what was good, what was getting better. The first entry was 30 seconds of walking outside. Those 30 seconds had been available to her before. She just wasn't attuned to them.

• 1:15:52Jonathan Fields?

  And that, that changed everything. It set in motion so many other actions and shifts internally and externally that led to an open door to a different way of being and life. The second thing is that appointment, that one appointment. One doctor said they would coordinate her care and her body relaxed before a single new treatment or approach was even tried. The work of holding it all together alone was its own symptom. And the third thing, the definition she landed on, recovery isn't never needing rest. It's not getting back to the way she was. Recovery is being in touch with yourself enough that you crave it, that you crave the things that are nourishing good,

• 1:16:34Jonathan Fields?

  and also reimagining what the future might be. And along the way, taking an honest look at what the past really was. So here's a thing that I'd love you to maybe explore this week. Pick an area of your life that you're maybe quietly monitoring for evidence that it's not going the way that you want it to go. And for seven days, don't ignore that. Maybe that's part of your reality, but for seven days, write just one line a night about what is going your way, what did work, what is good. Small counts, itty bitty passing moments, a few seconds counts. We saw that in Georgia's case, 30 seconds counted. Then read back the week at the end of those seven days

• 1:17:19Jonathan Fields?

  and see whose story that you've been telling about yourself. The last thing, Georgia's story is hers alone. In sharing it, neither of us are suggesting it is yours or it should be yours, or anyone else you know who may be navigating a personal or a health challenge. Every person has their own experience, their own journey, their own story, and it is important to honor that and to not layer on promises or expectations that might just not align with where they are or where you are. Be good to yourself and do whatever you need to do in order to feel most authentic and a lot. And hey, before we go, do me a quick favor.

• 1:18:01Jonathan Fields?

  Think of one person in your life who may be dealing with something that nobody can see. Send them this episode, that's it. It helps us get discovered and brings more people into a conversation that just might make a real difference. And if you feel really compelled, go ahead and leave us a review wherever you get your podcasts. This episode of Good Life Project was produced by executive producers Lindsay Fox and me, Jonathan Fields. Editing help by Troy Young and Alejandro Ramirez. Chris Carter crafted our theme music. And of course, if you haven't already, go ahead and follow us wherever you get your podcasts so you never miss a conversation. Until next time, I'm Jonathan Fields signing off for Good Life Project.

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