Julie Rehmeyer, author of Through The Shadowlands, talks chronic fatigue syndrome/myalgic encephalomyelitis, mold illness, and taking your health into your own hands.
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
I’m really excited about today’s episode, but before we get to it I have a few sort of housekeeping items. First of all, this is episode 25 (!) which feels like a big milestone. When I first started this project, I wasn’t sure if I’d be able to find enough people willing to talk to me about something as personal their health. But at this exact moment I have ten recorded interviews in the queue, and even more on the calendar. I am so honored by this opportunity to collect and share your stories.
If these stories are resonating with you then I would be so grateful if you could leave a review on iTunes. And if you know somebody who you think needs to hear these stories, I’d love it if you shared the podcast with them.
I’ve also got some fun new graphics on the way to make this podcast feel more profesh, and I’m doing the extremely predictable thing of launching a patreon soon to help with transcripts and other costs.
Anyway, onto the show!
Today I’m talking to Julie Rehmeyer about CFS/ME and mold illness and fringe experiments that can lead to unexpected health breakthroughs. Julie is the author of Through The Shadowlands, a book that I absolutely love. In the book, Julie tells her own story and mixes in a lot of really interesting research about the origins of chronic fatigue syndrome and the health impacts of mold in our environment. If you haven’t read it yet, I think you’ll love it.
I’ve got a quick content note that near the end of the episode, Julie talks briefly about suicidal ideation. There are no details, and you’ll be past it in about ten seconds if you want to skip ahead.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
Brianne: Okay. So to get started, I like to start by just asking people, were you healthy as a kid?
Julie: I was actually, I was quite healthy as a kid. I didn’t have any very serious problems. My mother was a Christian Scientist, so I got only a small amount of medical care and that was really kind of… That was almost never a problem. I have one memory when I was little of getting strep throat and I remember how mad my mom was because she did have to take me to a doctor.
Brianne: Yeah, to see a doctor and probably take medication of some kind.
Julie: Yeah, exactly. Yup, yup. And every time there was some kind of cough syrup and every time she was so mad.
Brianne: Like, “This isn’t working for me, we’re going to figure it out.”
Julie: Right. So yeah, there was really nothing very serious as a kid.
Brianne: And then time passes, time passes, and at some point… and I will say for this part of the recording, because I’ll probably cut out where I said it before, you wrote a book about your experience with chronic illness! So I’m going to try not to ask you to retell all of it, but at one point something changed. So what was that like?
Julie: Yeah, so I was in my twenties, mid twenties. I was very, very active. I was building my own house on top of working full time and just really kind of pushing myself to the limit and I just started getting so tired. And my initial reaction was like, “Well, of course I’m tired. I’m doing all this stuff, who wouldn’t be tired?” And also I was married at the time. My husband was very ill on top of all the rest, so it was a pretty over the top stressful period of my life. So my initial reaction was like, “Yeah, yeah, of course I’m tired.”
Brianne: Yeah, and like, “It’s stress, that’s what happens to people with stress.”
Julie: Stress and overwork and all that kind of stuff. But it was kind of a level beyond what I could really explain that way. Like I found myself trailing my hand along the wall as I walked from my office to the bathroom at work out of this sort of vague sense that I might pass out. That’s not just being stressed and overworked. Like that’s pretty weird. I mean… Maybe right. You can’t dismiss that completely, but it does not really seem like, “Oh, you just need a vacation.”
Brianne: And it’s also the kind of coping mechanism that you might start slowly and you don’t do it all the time and then by the time that you notice you’re doing it, you don’t know how long it’s been going on for, like it’s so grey, it sounds like.
Julie: Right. Exactly. Exactly. But still, mostly I figured, “Okay, I just need to finish my house and get my life in order and get some rest and I’ll be fine.” And I did all those and it was not really fine. Like I was better but not really. And in particular the thing now, like in retrospect it seems alarming about what I was experiencing then, is I felt much worse if I exercised. And I couldn’t… You know, I sort of thought, “Okay, I’ve just gotten out of shape.” Which didn’t really make sense since I had been busting my butt building this house, but, you know, okay, I guess somehow I got out of shape and I just need to get back in shape. But it didn’t feel good and I felt lousy afterward and I didn’t seem to be getting any better. And you know, it was just weird. The whole exercise thing was really weird. But at the time I was like, “Well, I don’t know of any illness where you just can’t really exercise.”
Brianne: Or like, where exercise makes you feel worse and not better. Exercise is healthy!
Julie: Right, exactly. So I was like, “Okay, I just need to be patient and stick with it and it’ll all be fine.” And over the next few years I did gradually get a little bit better. And the exercise thing got a little bit better. It was like not all the way there, but it was, it was better. And then I moved to California, kind of this big change in my life and went back to graduate school. Went from being a professor to being a student again which was super fun. I highly recommend it.
Brianne: Yeah, I bet that’s a real shift.
Julie: It’s so much more fun being a student after you’ve had this whole grownup life.
Brianne: It’s starting to tickle the edges of my mind again, like, do you want to go back to school? And I have been to grad school. But is now the time?! Probably not, but maybe.
Julie: Right, right. Yeah. Well it was super fun. And also I was like, “Okay, now I’m really going to get in shape!” And I was, I was in school in Santa Cruz and the campus there is up this big hill and it’s like, “I’m going to ride my bike. I’m going to ride my bike to class every day and get stronger and stronger!” And I was so slow that I was like waiting for a toddler to come past me on a tricycle. And again, it was like, “Okay, I guess despite all my efforts to get back in shape, I’m still not in good shape.” But I didn’t really get faster. And then one day I was biking up and I was like, “I’m gonna die.” Like, “I cannot physically do this.” Like I was…
Brianne: And which parts? Do you feel like there was a muscular part or like a tachycardia part? I’m sure it was a while ago and you don’t remember. But when it comes to this, I think it’s interesting because we almost, we don’t have a good vocabulary for describing what it means to hit the wall.
Julie: That’s a really good point. Like, what does fatigue mean? And this word fatigue covers so many different things and sounds trivial.
Brianne: It sounds like tired.
Julie: I think it was largely a muscular thing. And there was just, you know, there was also just this kind of ineffable sense of wrongness. Probably most people who are chronically ill know this feeling like, “This is not a good thing to ask my body to do right now.”
Brianne: Or, “My body wants to lie down here.” Wherever I am.
Julie: It’s like, “Stop. Now. This is bad.” And so, you know, of course there’s a point where no matter how determined you are, you’re finally like, “Okay, okay! I’ll stop!” And then I was never able to do it again. That was it. And I was… I mean again, I had no structure to understand what was going on, which in retrospect makes me so mad because that’s like the one thing everybody should know about chronic fatigue syndrome is that it’s problems with exercise. Like if there’s one thing that could be just out there in the public consciousness about chronic fatigue syndrome, it’s that. But it’s not, and certainly wasn’t then. I mean, even less then than now.
Brianne: It probably was still encouraged as a treatment at that time.
Julie: Totally. Totally. And I hadn’t been diagnosed or anything. I mean, I wouldn’t have even called myself sick. It was just like, something’s not right. And then for a while I was doing some other forms of exercise. I was pretty determined about this exercise thing and then what happened was I finished my year of graduate school and I was doing an internship. I was living in Berkeley and continuing to bike, I was big into this biking thing. And at that point I could do it. It wasn’t like it had been earlier in Santa Cruz where I couldn’t do it all. I could do it, and even enjoy it. But then the next day I would be so sore I could barely walk. And that was true even if I didn’t push myself very hard. I would be having to walk down the stairs backwards because I was so sore. And I was just like, “What the heck is going on here?” And also by then it kind of ended up being somewhat more general. Like I had this internship and I could work from home sometimes. And working from home really meant lying in bed, not really able to work. And so over the course of that summer I got more and more concerned about it. And then I went to DC for another internship and again I was like, “I’m going to bike! I’m going to get back in shape!” [laughs]
Brianne: Yeah! This is the problem.
Julie: Right. And then I got a hepatitis vaccine in preparation for a trip to Peru. And 24 hours after I got that vaccine, I was just… I felt anesthetized. It was like, “You will go to bed now.” And I woke up and couldn’t walk. And had no clue… I mean it was a little bit like how I felt after I had exercised and then would get so sore I could barely walk. It was kind of like that, except I hadn’t exercised.
Brianne: Right. But like more it sounds like.
Julie: And even more so, yeah. And that was the first point where I was like, “Ooooookay. There is something wrong with me and I have to figure out what it is.” Although even there, it took several days. I was like, “Oh, this will just pass. It will all be fine. I don’t know what’s going on, but I’m sure it’s no big deal. I’ll just rest. It’s some sort of weird flu that I’m like paralyzed. I don’t know.”
Brianne: You hear about it all the time, a paralysis flu.
Julie: Yeah, right! But when it didn’t go away after a week, it was like, “Okay, time to get serious.”
Brianne: And it was kind of steady state for about a week that you were really not…?
Julie: Yeah, I mean it was up and down in that time, but basically around the same level. And so I went back to California where I’d been living prior to going to DC and started seeing specialists and went to a neurologist because it seemed like, “Well this is obviously, I mean paralysis, some kind of neurological problem.” And the neurologist examined me pretty cursorily, like nothing very fancy, just pushed on my legs and stuff. And he was the one who diagnosed me with chronic fatigue syndrome.
Brianne: Which is interesting.
Julie: Yeah, it is interesting. I mean, it’s interesting cause it was the right diagnosis actually. But for him it clearly meant, “Please get out of my office. I have nothing to offer you.” And I was like, “Okay, so what does this mean?” Like you know, “What specialist should I go to? Do I need further tests, treatments, you know?” And he had no answers to any of those questions. And I was like, “Well, what if this were your wife or your daughter? What would you have them do?” And it’s very interesting that I said that because gender… Like I had an inkling already at that stage that there was something gendered. You know, I didn’t say “What would you do?” I said, “what if it were your wife, or your daughter?” And he had nothing to say. Nothing to say.
Brianne: Yeah. I think that that approach as it comes up with people, and I’ve asked a female doctor “What would you do?” And it’s like they’re so stunned by the question that, because in my experience it was also a useless question. But it was like, “I’m very sick. You don’t know why.” In my case, she wouldn’t refer me to any specialists at all. And I was just like, “What would you do in my position? Like I can’t work. I don’t even know what… I don’t have a diagnosis. I don’t know what to tell my employer.” She was like, “Well I guess I’d talk to my employer.” Like what? What are you talking about?
Julie: What would you say to your employer?
Brianne: Like you’re a doctor! That’s not what I’m asking you for! But it makes sense because the humanizing element feels very important for practitioners who haven’t run across this very often. It’s like it’s not just fakers. In fact, there are probably very few fakers if any. Anyway, so the neurologist was not helpful.
Julie: Yeah. So you know, off I go home and start googling. Like what else do you do? And I started seeing other doctors and the only people who billed themselves as chronic fatigue syndrome specialists were somewhere on the scale of quackitude. I couldn’t really, it was hard to assess how quacky is this person. But it was definitely… Like there was no one I could find at that stage who was like, “Okay, this person is definitely not a quack.” And that made me super uncomfortable. I mean, I was a science writer and mathematician. I also have my own… [laughs] There are other aspects of my personality and way of viewing the world, but nevertheless, the idea of going off to see people who are kind of quacky, this was way outside my comfort zone. But what else are you going to do?! Lay in bed and rot?
Brianne: You get to a point, because I 100% feel this way and talk to people who are like very… they only talk about medical stuff at the beginning and then they’re like, “Oh yeah, no, I do also do…” whatever alternative stuff that people have tried. Some that works, some that doesn’t. And it’s because like you say, at a certain point, it’s doing nothing or it’s figuring out what you can afford to try both financially and energetically and then doing it I guess.
Julie: Right. And for a long time, none of those things really seemed to make any difference for me, which was kind of what I expected.
Brianne: So how did you start?
Julie: Well, I literally started by googling, you know, “chronic fatigue syndrome Berkeley doctor.” Okay, there’s nobody in Berkeley. “Chronic fatigue syndrome San Francisco doctor.” And then friends recommend somebody or other and you know… But pretty quickly, I was also like, “Okay, none of these people have anything to offer.” Like this is not where I want my life blood to go. And so I pretty much gave up on doctors quite early on in things. And just kind of figured out really on my own things that helped. So in particular, I figured out that it really made a big difference not to overdo it. That’s another thing that was the first thing patients should be told with chronic fatigue syndrome. I mean, every primary care physician in the country should know that. If they have a patient with… They should know if there are exercise problems, think chronic fatigue syndrome. And they should know, “Okay, these people need to learn not to overdo it. They need to really rest and really focus on learning to manage their limited energy.” Everybody should know that, that’s not the reality. So, I figured that out on my own and that made a really huge difference. Really, really huge difference. I mean, it didn’t solve everything by any means. And things would still happen. Like I’d walk five blocks to a cafe to go work and then halfway home it would be like, “Oh shit, I can’t walk anymore. I’m paralyzed! I can’t take another step. What do I do?” So you know, that kind of stuff happened, but it happened less as I just learned to manage my energy better. I also learned tricks, like when I… This was the most bizarre thing. My boyfriend at the time and I went to a hot springs place, just for a vacation. And they had a body temperature pool that you could just float in. And so at one point while we were there, I got paralyzed as I often did, and I staggered my way up to the hot tubs and pool. You know, I was going to enjoy myself regardless. And then when I got out I was fine. And that happened several times. And so then after we got home I was like, “Okay, I’m going to just… This is like the stupidest idea ever, but I’m going to try going to the pool when I’m paralyzed.” So I’d go in with my walker, you know, grunting every step, like staggering my way in. Somehow it didn’t occur to me to just get a wheelchair, which is the most obvious thing in the world. But somehow that step to get a wheelchair, it’s a very emotionally big step to take. So instead I was a huge spectacle, when I’m in that state and trying to… I mean everybody looks at me like, “Oh my God, what is wrong with that person?”
Brianne: Yeah, “Her mobility is not as expected.”
Julie: Yeah. And then I slipped into the water and swum like two laps and I got out and I was fine. And I have no explanation for that.
Brianne: Do you have a theory about why, even if it’s totally inexplicabl or like nonsensical?
Julie: Well my theory is… I mean this is just kind of based on the way it feels. My theory is that the uniform resistance of the water somehow helps to reset my brain. You know, like somehow my brain kind of loses track of how it’s supposed to work and that the way that water provides resistance everywhere somehow…
Brianne: It’s like uniquely therapeutic in a mysterious way.
Julie: Yeah. Right?
Brianne: It’s okay that it’s mysterious!
Julie: No doctor I ever talked to had any explanation for that either. And I mean, of course it’s also hard to know like how many people when they’re paralyzed would try swimming. It’s hard to know. And of course the paralysis thing is not particularly common anyway.
Brianne: Yeah, to have your fatigue exhibit in that really specific way where your muscles are literally like not responding, right? That was the experience? New Speaker: Yeah, and it’s not even just… it’s fairly separate from fatigue. It really is just like my brain and my muscles are not communicating, rather than I don’t have the energy to move my muscles.
Brianne: Right. They’re not responding.
Julie: Yeah. So for several years I managed it with that kind of stuff. And it was definitely a kind of limited life, but it was a life. I felt like I had a life.
Brianne: And were you work… In what capacity were you working at that time?
Julie: I was freelancing as a science writer. So that was good because I could kind of titrate it according to how I was doing. And it’s not like there was an employer who would say, “You must be here from nine to five whether you’re feeling shitty or not.”
Brianne: Yeah. Which is what’s really hard!
Julie: It’s really hard. I mean, I couldn’t have done it. I don’t know what I would’ve done if I hadn’t had the option of being a freelancer. Because as a freelancer, it’s just like, “Well okay, I’m the one who decides what stories I’m taking on and I can just try to get them done well before the deadline. And if I’m going through a crappy period I just take on less and it can kind of work out.” And there were significant ups and downs during that period. Like there were times when I was practically well, and then other times I was in pretty bad shape. And then in late 2010, I was in a really good period. I was even able to go for fairly substantial hikes. Like slowly and carefully, but I could hike like three miles, which was pretty good.
Brianne: Yeah! I would be happy with that.
Julie: Yeah, I was psyched. And of course I saw this as just the beginning of a steadily climbing upward trajectory. But in fact, I went on one of these three-mile hikes, and about a mile from home… And this was in Santa Fe, so I was at the house that I built in Santa Fe which is out in the boonies and lots of hiking right out my front door. So I was on one of these hikes and about a mile from home. And I was like, “Oh, I’m kinda tired.” And I had learned that the way of managing it was as soon as I thought “I’m a little tired,” that was the time to stop. Right then. Not five minutes from then. It was like right then and not when it’s like, “Oh, I’m really tired.” But the moment it was like that little whisper in the back of the mind, that you almost don’t notice of “I’m a little tired.” That was the time to stop. But I couldn’t stop because, you know, it was just not going to happen. And so I was like, “Okay, I’m going to just rest for a while and then I’ll just walk really slowly and be really relaxed. It’ll be fine. I’ll just rest a little more now.” And I made it home and I was so relieved just to make it home and knew like, “Okay, I’m going to pay for this.” But I was like, “It’ll be okay, I’ll just have a bad day. That’s fine.” But it wasn’t a bad day. It was a bad year. I was basically bed-bound for much of the time for the following year. So that was really terrifying. And at that point I was like, “Okay, I have to find a doctor who can help.” I had given up on doctors early on, but also in the intervening years I kind of found the chronic fatigue syndrome community online and learned a lot that I didn’t know when I very first got sick. And in particular I’d found the… At that time there were like five specialists in the world. Most of them had like a three-year waiting list or a waiting list where they just took the patients they were most interested in and the rest just waited forever. Gotta love that. But I found one whose waiting list was only three months. Awesome. And so I went off to see her and she was fantastic. She was wonderful. But unfortunately nothing she did really helped, despite being so wonderful. And so at that point, my relationship with my then boyfriend kind of fell apart in the face of this. It has not been doing terribly well anyway, and then this was just way too much. So I left him, which was a pretty terrifying thing to do while that sick and I moved back to Santa Fe. I was living in a pair of travel trailers that I lived in while I was building my house, which was good because it was cheap, I could rent my house out. And we always have these stories, “Oh, now that I’ve left this relationship that’s not working, I’ll come back to Santa Fe. I’m sure it’ll all be fine.” And it wasn’t fine. And I basically couldn’t work and like, what is going to happen to me? I didn’t have family to turn to. I was really alone. I did not have a great big savings account. And it was just like, if I get a little bit worse, I’m not going to be able to take care of myself. I’m not going to be able to get groceries. And like, what happens?! You know, what is going to happen to me if I can’t get to the bathroom in time, you know, like, I don’t know what would happen to me.
Brianne: Yeah. Like if I can’t feed myself, or I can’t get edible food.
Julie: Exactly. It’s terrifying in that sense that our society does not really provide any answers to those questions. You know, it’s really kind of shocking and pretty horrifying. You really can be in that place of like, “I don’t know how I’m going to survive in this world. Like if I get just a little bit sicker, am I just going to die? Am I just going to starve to death because I can’t feed myself?” So at that point I ended up hearing about a group of patients who were convinced that mold was responsible for their illness. And initially I was like, “Oh boy. One more crackpot theory!”
Brianne: Yeah, it’s like, “Another tinfoil hat club!”
Julie: Exactly. But whatever! I got contacted by one of these patients who was very, very smart, very impressive in many ways, and hard to dismiss as just a total wacko. And so I was like, “Okay, well I’ll just sort of look into this.” And the stuff that she said, I kind of felt like, “Well, I’m not convinced this is true, but it makes as much sense as anything else I’ve heard.” Like, nobody has any very good theories about this illness and these patients who were taking really extreme measures to avoid mold, they were actually a lot better. I had not heard very many things where they were a group of people who were a lot better. Like, you’d hear about an isolated person who had this or that crackpot thing that made all the difference for them, but this was a group of people. So anyway, I decided to give it a try, particularly because I was told that I could run an experiment and go to the wilderness for two weeks with none of my own belongings to get clear of mold and that if mold is my problem, that when I came home after that that I would react clearly and strongly to my own stuff. So I said, “Okay, I’ll try it.”
Brianne: Yeah, like you have nothing to lose at this point.
Julie: Right? Yeah, exactly. It was like, it’s almost certainly stupid, but it was very appealing just to have an adventure even being that sick. And you know, who knows? So I went and the short version is that it worked. I came home at the end of two weeks and I spent 30 seconds in my trailers and I ended up paralyzed afterward, but I hadn’t gotten paralyzed in the desert at all. So that was pretty stunning. And then I had all of these confirmatory experiences with it. With having exposure and getting paralyzed. And then like a week after I got back from the desert, I was out at my land, I had been feeling kind of crummy in town and I figured the outside air on my land is probably better. I’ll just go hang out outside on my land. Then I did feel better and I thought, “Well, I’ll just try taking my dog for a little bit of a walk. I’m sure I won’t be able to go far, but what the heck?” And I ended up walking to the top of the 350-, 400-foot hill behind my house, which I hadn’t been able to do for a year and a half previously. So that was the point where I was like, “Okay, I don’t care if this is crockpot or not, if it’s going to give me these results I am on board!”
Brianne: Yeah, totally. Which is also the thing for sometimes people online who are skeptical of stuff like this where they’re like, “Don’t do it! It’s a waste of your time and energy. There’s no science, blah, blah, blah.” And you’re like, “Okay? And… If it works, it works. For you.”
Julie: And also like, the scientists have so abandoned us that if you’re going to wait around for some scientifically validated approach, you’ve got a really long wait. That may be your whole life just sitting around waiting.
Brianne: Yeah, it’s like the Stanford clinic, period.
Julie: Right. I mean it’s different now than it was then. There actually is some decent research going on now. But there was almost nothing. There was nothing. I mean, it was 2011, 2012 when I went to the desert. And 2011 was when the PACE trial came out. This piece of junk study that claimed that exercise and therapy will cure chronic fatigue syndrome. It was total bunk, the science was terrible, but you know, blah, blah blah. But that was the best science had to offer us. So like, you know, boy…
Brianne: And it was the standard for doctors and insurance and medical systems until…
Julie: It still is really, it’s just starting to change now, after enormous effort. Partly from me and from a whole bunch of really smart patients and another journalists, David Tuller, it’s been a massive effort from many, many people. And it’s finally reaping rewards, but for decades, people were working against this for decades with no apparent success. So it just felt like…
Brianne: “This is amazing!”
Julie: If you’re going to wait for white coated scientists to save you, you’ve got a really, really, really long wait. So yeah, finding something that actually seemed to work for me, was like great, great. So, you know, lots of other things happen. And it was definitely not a direct trajectory upward at that point, but it was an amazing amazing recovery. And up until like three years ago, I was pretty close to completely recovered actually. It was really quite amazing. I mean like running 12 miles and I’m swimming and able to go in to all but the moldiest buildings and really feeling kind of amazingly, amazingly well.
Brianne: Before you get to this turning point that you;re about to get to, I have a question about “the moldiest buildings,” you said. So did you find after removing yourself and all the things, and people can get details in your book because like you said, it’s not that simple, but did your tolerance slowly improve again? So that if you had a clean environment and you spent a lot of time outside, you could go do things without losing your progress? How did that… Did that change?
Julie: Right. So it was definitely not a linear thing. So actually, initially in a way things were much worse from a certain perspective. I mean, before I went to the desert I never had any obvious reactions to buildings. And then after I got clear in the desert, then certain buildings I would walk into and collapse. And the degree of reactivity to unbelievably tiny amounts of mold was… It stretched my own credulity. It was very hard to believe. And yet at the same time, it was simultaneously kind of incredible and absolutely undeniable. So there was quite a while when I was definitely getting healthier and stronger all around, but also my reactivity was very, very high and not coming down. And it’s a very hard way to live, when you’re super reactive and just the degree of care that’s necessary to keep yourself stable.
Brianne: The vigilance, I would think.
Julie: Yeah. So it’s really, really difficult. So the thing that ended up making a difference, this is actually a pretty wild story and in a certain way it’s the… I mean there are a lot of different things going on in the book, but in a certain sense it’s sort of the apex of the book in the sense that a lot of what I’m trying to accomplish with the book is to, I felt like with my science writer colleagues this illness took me across a divide where I could never see the world again. And in talking to my science writer colleagues, there was this sort of basic sense of like, science is good and science will answer our questions and it was like… No. I mean, I still think science is good, but I have come to have a very different sense of its limitations and I feel like there are a lot of questions that it’s really never going to answer for us. At this point I sort of feel like there’s this black universe and science is this little flashlight that we have and the idea that this little flashlight someday will illuminate the whole world if we just keep at it is ridiculous. You know? It’s so far from reality and really it’s like, okay, we have this little flashlight, it’s really little, but it’s all we’ve got. And it’s incredible! It sheds light in the midst of all this darkness and now we’ve got to be really smart about how we use it in order to get it to tell us anything useful. And the idea that it’s going to replace the sun is just absurd. So a big part of what I was trying to accomplish with the book was to kind of bit by bit drag my science writer friends and people like them across this divide with me. Sort of drag them down the rabbit hole. Or maybe not drag, but seduce them.
Brianne: [laughs] Entice!
Julie: Entice them with a really good story that they follow along and they’re like, “Oh, I’ll take that step with her. I’ll take that step with her. Okay, I’ll take one more step.” And then all of a sudden, oh my god, they’re in this alternate universe with me that they never wanted to go to.
Brianne: Yeah, where things get wacky.
Julie: Exactly. So that’s all kind of a preface for the story that I was about to tell. So during this period when I was overall getting stronger and stronger, but still extremely reactive, I had met a new partner, John, who’s now my husband and is very wonderful. And John mentioned this psychic that he had seen and he talked about it with great enthusiasm. And I was like, “Oh boy…” I was like, “Oooohkay.”
Brianne: Like, “I’m learning a lot about you right now based on this recommendation.”
Julie: Exactly. But at the same time, I was pretty crazy about this guy and it was like, “Well, if John thinks this guy’s worth then I’ll give it a try.” And he actually had a recording of a session that he had had with the psychic and so I listened to this recording and I won’t go into all the details on it, but it was actually impressive. Not on the level of thinking that he was necessarily clairvoyant in any way. That’s hard to say and you’d need a lot of evidence to be confident of that. But clearly in terms of the impact that the psychic has on John, just hearing it over the course of the hour according, it was like, wow, that was actually really useful.
Brianne: Like something helpful is happening.
Julie: Exactly. And like, what that something is exactly, does it really matter? And okay, maybe this is just a sort of wise intuitive guy who doesn’t actually have any clairvoyance, but kind of presents his insights in that format and it makes them go in deeper, you know? Well that sounds pretty good, right? So I was like, “Sure, it’ll be an interesting experience. I’ll go.” So I went to see this psychic and I thought he was pretty weird. And he said a lot of things that were interesting. And then he recommended that I come back for some energy work, whatever that was. And I was like, “Okay. I mean, in for penny in for pound, whatever.”
Brianne: Right, totally. How can you know for sure if you haven’t fully tried it? I think that’s fair even when you’re skeptical.
Julie: Right, exactly. So I went back for this energy work session and it ended up being, in a way, not very far from what an ordinary therapist might do. It was focused on past trauma stuff and involved some breathing exercises and blah, blah. And at the end of the session, this guy said, “The association between the trauma and the mold has been completely broken and you’ll no longer react.” And my first reaction was, “Oh, come on, bullshit.” And then my second reaction was, “That sounds great!”
Brianne: Yeah, if this is true…
Julie: Like I’m not going to put too much skepticism into that because the placebo effect is good enough for me.
Brianne: Totally. If it was somehow in your mind entirely and this causes that to resolve, then that is only a good thing, even if the mechanism makes no sense to you.
Julie: That’s right. The power of suggestion is good enough for me. So John and I went out for dinner that night and I told him about the session and told him about this guy’s prediction that the association with mold was completely broken. And this restaurant we were in was connected to a hotel, and the restaurant was okay, but the hotel, we knew it was moldy. So John was like, “Well let’s go test it, you can walk through the lobby of this hotel.” And I was like, “Okay.” So we did and I walked into the lobby and I immediately felt the mold and I was like, “Okay, big surprise there, right? That was a nice fantasy to have.” But it was going to be… Like the door to the outside was about as close as if I had like turned around and gone back. So I was like, “Okay, I’ll just like real fast go across this lobby and get outside.” And as I walked, instead of getting worse, which was what would normally happen, I started feeling sort of better. And so I stopped just before I went out and I was just kind of standing there and then I was like, “Well, maybe I’ll just try walking around this lobby a little bit more.” And so I did and I actually was okay. Like I was very aware of the mold, but it wasn’t crippling me. So it was a funny thing because, you know, I mean, I was thrilled. I was also, I was skeptical that it would really hold up, but I was thrilled regardless. It was also a little embarrassing. But it actually did hold up and it brought a quite lasting reduction. Not total resolution, but quite lasting reduction in my reactivity. And the way that I ended up thinking about this is… my sense of these things is when I was learning to avoid mold after I got back from Death Valley, what I was doing was I was tuning into the tiniest sensations when I got exposed and I was teaching myself that those tiny sensations were actually a really big deal. And that was a signal that I needed to get the hell out. I mean, I really had been poisoned by mold and one of the things I do in the book is I actually really dig into the science and there’s quite a bit of science that supports the idea that mold could cause these kinds of problems. I mean, there’s also some gaps in the science that just haven’t been studied and there are lots of reasons we haven’t studied them. But it actually is pretty biologically plausible that mold could actually really truly poison us. And I do think mold really truly poisoned me. But in this process of learning to avoid mold, I was basically teaching my brain that these tiny symptoms were actually a really big deal. So that created this kind of feedback loop, like, that’s a big deal and then your brain kind of focuses on it and amplifies it. And it’s this kind of feedback loop that increased the reactivity. And this by the way, is what basically everybody I know who has experimented with extreme mold avoidance has experienced, is that the reactivity goes way, way up. So that’s extremely useful because you really do need to avoid it. Like you really need to give your body a break and the only way to do that is to learn to detect it. To have those really slight sensations be big enough that you can identify them. But of course when it’s at the level that you’re collapsing in a heap, well that’s not so helpful.
Brianne: Like constantly, or regularly when you go out.
Julie: Exactly. So there’s a point where, I mean, I think there’s a kind of stage where the only thing that matters really is giving your body a break so you can heal. And there’s a point where it’s like, okay, it’s time for this to settle down. And I also think part of what happens with that is that those kind of circuits that get sort of dug into your brain with each reaction. I think they also kind of tie into previous trauma circuits. You know, you’ve had previous traumas and you’ve learned, “Oh, this is the warning sign for this really bad thing. So I’d better watch out for the warning sign for this really bad so that I can do everything I can to avoid it.” And my mother was not a very stable person and in my childhood I was the expert, the world expert, at managing my mother. And so tuning into those early symptoms, those early signs that something was going on with her so that then I could try to intervene and prevent the disaster, that was a survival mechanism for me as a kid. So I feel like those early traumas set up neural pathways that then get exploited by the mold stuff. So my sense of this experience with the psychic is that in his weird way he managed to kind of interrupt that process for me and sort of jumped me out of that particular neural pathway that my brain was sort of stuck in.
Brianne: That sounds like even giving you permission to be less reactive. Because like you were just saying, you get to a point where you’re so hypervigilant that you go from zero to 60 every time there’s a sign of mold. And so someone saying, “Hey, this connection is broken now.”
Julie: It creates that possibility.
Brianne: Yeah. Like, “Now I can look at these inputs and go, oh, maybe…” Obviously that’s not what it feels like in the moment, but it’s like giving your brain and body the opportunity to pause and rest in the moment instead of immediately going into crisis mode, even though crisis mode has served you really well, which is kind of what you’re describing, right?
Julie: Yeah. So then later on, I was wanting to take this a step further because that was very nice with the psychic. It didn’t resolve everything. And it didn’t feel like this was a reliable pathway toward complete resolution. And so I was thinking about all this and I kind of developed my own message to try to do the same thing. So in particular, what I did was I was thinking about dog training because these same things are really relevant. You know, what happens in our own brains happens in dog brains too. So when I met my husband, he had a cat and I had a dog and my dog had only dealt with cats outside and she knew exactly what to do with cats and it was really fun. [laughs] It was like she saw a cat and her little doggy brain just exploded and she chased it and it was great. And so there was this process of… I mean, in a way that is like exactly the same thing. Like cat immediately led to brain explosion, and she had seen so many cats and had this very exciting experience that it had dug this kind of groove in her brain. And so the challenge was to dig another groove. And so what we did was… his house was two storeys and so we got a baby gate to put across the stairs so that Lao, the cat, had a safe zone. And then John would appear with Lao at the top of the stairs and I would be at the bottom of the stairs with Frances. And then I had cheese and I would immediately start giving her little bits of cheese. So her only job was to eat the cheese. Like that’s all she had to do was eat the cheese. And we did this a whole bunch of times. And then I waited like half a second before I gave her the cheese after the cat appeared. And by then she knew what to expect, right. She’s supposed to get her cheese. And so she looks up at me, “Hey, where’s my cheese?” And that was like the beginning of victory because instead of cat immediately leading to brain explosion, it was cat leads to cheese. Right?
Brianne: Yeah. That’s still a good deal I think.
Julie: Yeah. And so then we could expand on that. I could make her wait a little longer. I could ask her to sit first. I could ask her to come away from the cat, you know, on and on and on. And so gradually that teeny bit of space that was opened up became a big space. And, you know, they’re now friends, they play. So it was exactly the same thing that I wanted to do with my own brain. Like rather than mold immediately leads to brain explosion. Then I wanted to create something else. And so what I did was I gave myself very carefully calibrated exposures, at a level where I could feel it but my body wasn’t totally freaking out. And then I did whatever I could think of that would reach my body and help it to calm down, you know? So I would put on fun music and dance or I would do yoga or I would meditate or I’d just like stroke my skin or, you know, anything I could think of that just kind of communicated to my body, “No, it’s actually okay.” And then before there was any kind of freak out, I would go and take a shower and remove the exposure and make everything okay. And then I could gradually increase these exposures. And I think that that process in a way is… I mean, I think the psychic kind of had a shortcut to that, but I think the fundamental thing that he was accomplishing was what I was doing with those controlled exposures. And that made a really big difference and was part of how I was able to get to the point where only the very worst buildings bothered me.
Brianne: Yeah and running 12 miles, you said.
Julie: And running 12 miles. Yeah. It was awesome. Totally awesome.
Brianne: And so then it sounds like there’s one more stage after that.
Julie: Yeah. Unfortunately.
Brianne: That’s how it is, right?
Julie: It is how it is. Yeah. Unfortunately, yeah. Life is not happily ever after. Like this is not the way life is, right. It goes on and more things happen. So what happened was my next door neighbor’s house flooded and she made a series of unfortunate decisions that actually ended up getting toxic mold growing in her soil, which I didn’t even know was possible. So yeah, the whole story is kind of long and grim, but the short grim version is that if I walk up to her berry patch where she put this contaminated material, then I actually collapse. And the result is that I cannot live in my own home. So I lost my safe home and also in the process of trying to deal with this, I got a zillion exposures, which is basically exactly what is designed to increase reactivity. So I’ve gotten really sick again and very reactive. So I’m still trying to… I mean the good news is that I got through it once, so I know I’ll be able to get through it again. Or at least there’s a good chance, right? Like, I don’t know, but there’s a good chance I’ll be able to get through it again.
Brianne: You know a lot more than you knew last time.
Julie: I know a lot more than I did last time and I have a lot of… I have my husband and I have a lot of support that I didn’t have then. But it’s been three years of dealing with this and it’s just such an incredible drag. And I mean it’s an amazing thing too, just the extremity of it. Like, you know, I’m basically homeless, I’m living in a van and can’t find a house that I can tolerate. And you know, it’s very interesting now like walking past a homeless person on the street. It’s like, “Oh, I feel you. It is not remote at all for me.” Like if I lost all the resources that I have and I didn’t have the van, I couldn’t go to a homeless shelter, right? Like I couldn’t, I physically couldn’t. It would be impossible for me.
Brianne: Yeah, as a space. And it’s not even like there are good access options for say a shelter to try to become more accessible in this currently poorly defined way.
Julie: Yeah, it is. It’s an amazing feeling to just be like, “Wow, this world is not built for me.” And people don’t understand, you know, people don’t understand. And in such a kind of existential way. And I think about it, like if I collapse… Like I can get to the point where I collapse and I’m unable to speak. And if somebody found me in that state, they would take me to a hospital, right? Of course you would. And what if the hospital were moldy?
Brianne: Which I’m sure a lot of them are.
Julie: Exactly. Exactly. It’s, you know, wow. There’s something just so… yeah. Wow.
Brianne: Yeah. And do you wear a MedicAlert bracelet?
Julie: Yeah, I do. I haven’t been lately, but I should again. I have one.
Brianne: That question just specifically makes me think of it. Because that’s what MedicAlert bracelets are designed for, but in this specific context, like…
Julie: It’s so far outside their experience. But I actually, I kind of came up with something that I think people will understand. Particularly just get me outside!
Brianne: Outside. Over time, help me find clean clothes or to bathe.
Julie: Right, yeah. Rince hair and clothes! Just hose me down!
Brianne: Yeah, that’s it. It sounds simple, but outside isn’t always safe either, depending. The flare nature of it, especially when you have an identified trigger, it’s interesting because… Do you think that chronic fatigue syndrome is the right diagnosis for you and also you are able to really put together kind of when your body is flaring and when there’s been mold exposure. Do you think that those are… How often do you think that those overlap, or do you think that they’re kind of coexisting things for you? Does that make sense?
Julie: Yeah. Yeah. So here’s how I think about it. My understanding of chronic fatigue syndrome, which I generally call ME/CFS. ME is for myalgic encephalomyelitis, just because chronic fatigue syndrome is such a perfectly horrendous name.
Brianne: Yeah, and like deeply political.
Julie: Yes. So anyway, the way I think about ME/CFS is, I think our bodies in some way sustain a whole series of insults and the particular nature of those insults varies from one person to another. And the result of those insults is that something breaks and we haven’t really identified what that something is very precisely. I mean, we know some things about it, it’s not like we know nothing. In fact, we know a lot of things that break, but we don’t know what ties it all together. But what that particular combination of insults is varies from one person to another. So, you know, for me, clearly mold played a big role. But I don’t think mold was the only thing. Even for me, there’s clear evidence that viruses are part of the picture for me. Also, I was going through a period of extreme physical and emotional stress at the time that I started getting sick. Like that’s huge, right? I mean, that’s a physical, physiological stressor. We know that. So you put all those things together and there’s something that breaks that doesn’t easily go back. So at this point… Like earlier in my illness, I think ME/CFS was really the appropriate diagnosis. At this point, I mean, I think there’s this kind of smooth continuum and I think that’s part of what makes these illnesses really confusing is that we tend to think like, “Oh, there are distinct things that go wrong and there’s this illness and there’s that illness. And yes, you could have both illnesses at the same time, but fundamentally they’re two distinct things.”
Julie: Right. And I think that’s just not the case. You know, ME and ehlers-danlos and fibro and lyme and… all these things are clearly interconnected and part of this bigger picture of how it is that things can chronically break inside us. So at this point, I would say I have mold illness more than I would say that I have ME. Like it feels like a more useful description, but at the same time I wouldn’t say I have a different illness now than I had 10 years ago, like it’s the same illness. Then I would have called it ME, now I would more call it mold illness. But it feels like, “Okay, this is all part of this big brew.” So I mean in particular, the main reason that I would say that mold illness feels like a more accurate description is that my symptoms are so directly in response to mold exposure. And also that I wouldn’t say everything is fine exercise-wise, but earlier in my illness I would have said, “Yes, post-exertional malaise is the central problem.” And at this point I wouldn’t say I don’t have post-exertional malaise, but that doesn’t feel like that’s the central issue that I’m dealing with.
Brianne: Maybe not as dramatic as it was originally. Other things have become more dramatic, maybe is more accurate.
Julie: Right. And also, because even though like at this point, I’m still in this kind of fair amount of crisis, my body is not as broken from mold as it once was. You know, it’s very reactive to mold, but I think I’m overall stronger and healthier. Like today I walked, I dunno, maybe a mile without difficulty. That’s a result of having been fairly successful at avoiding mold for the last week. But earlier, that would’ve been the outcome of a long slow process of getting better and it would have been like, “Wow! I can walk for a mile!” You know? Whereas now that’s not a particularly surprising thing, even though I might not always be capable of it.
Brianne: Yeah. It’s such a moving target. I feel like this is one of the things across the spectrum of what can be really difficult. If there’s somebody who, for whatever reason, only sees you on days when you can walk a mile and then you’re trying to explain that some days that isn’t even physically possible, it does not compute, which is part of the language problem I guess. But like…
Julie: Yeah. Well you know, in a funny way for me, the fact that the paralysis thing is so dramatic, it’s kind of a blessing because it’s so clear that nobody doubts it. And in terms of what’s actually distressing in my life, the paralysis is not the most distressing thing. The brain impacts are way more distressing. Like, you know, not being able to think clearly, not being able to get my work done. I mean like there are times when John, my husband, might ask, “Well, what do you want for lunch?” And it’s like, “Ow! Oh! Don’t ask me any… [wails]”
Brianne: Too much question!
Julie: So, you know, that kind of thing is much worse. Also, people can’t see it in the same way as they can the paralysis. It’s like, “Really? You can’t answer what you want for lunch?”
Brianne: Or like, “It’s actually painful for you to try and think through the decision process?” Like that sounds absurd.
Julie: It does. It does. And it’s not something that people can see and it’s not something that a healthy person has ever experienced, you know? At least most healthy people, I think, have never been in the state where it was truly painful to be asked what they want for lunch. So having something that is so visible and like, “Okay, that person is sick.” There’s a weird way that it is a huge blessing. It is a huge blessing.
Brianne: It’s like the visible versus invisible illness.
Julie: Yeah. Yeah. And the invisible stuff is just so hard. It’s so hard. And especially because some of the invisible symptoms are just way more devastating. You know, like you can’t see pain, you can’t see brain fog. Some of those things are just so awful.
Brianne: Yeah. And I think when it comes to work and productivity, which are their own loaded words, but if you’re a person who… Like you’re an academic, you’ve been relying on your brain to turn up for a certain way. And it’s like your identity is in it and your livelihood is in it and you’re probably – general you, but also specific you – like your social circle is probably tied up in it and all of a sudden you can’t show up in any of these places of your life the way that you used to. I feel like there’s grief for bodies, when your body stops working the way that you wanted to, but it’s also grief for this core part of your identity. Which could be intellectual or physical, because athletes talk about the same kind of thing.
Julie: Right. Yeah, I do think it’s similar. I mean I think for an athlete the more physical stuff probably has a similar impact. But yeah, for me it’s the brain stuff. It’s like, wait, who am I if my brain doesn’t work? Those questions are really, really hard ones. And you know, there’s an extent to which we can kind of go to this place of feeling our worthiness regardless. But it’s a challenge, you know, it’s work. And also just in terms of how we get our satisfaction in life. Like for me, writing an article that I’m really proud of and having it come out and appear and people read it and react to it and I see the impact in the world. And that all makes me feel like, “Oh, I’m really great!” And when you can’t do any of that, it’s like, “Wait, what am I doing in this world? And am I really so great?”
Brianne: Yeah, like what’s my impact?
Julie: Yeah. Those are really, really, really hard.
Brianne: Yeah. They are. and real. I feel like in addition to just managing your health and body and adapting, that’s the heart of actually living with it day to day. It’s just like, “Okay, I’m a person. I have to wake up. I have to fill my time in a way that hopefully feel sort of good to me. And then keep also simultaneously trying to get better. So accept that this is my life now and work towards my life improving at the same time.”
Julie: Right, exactly. Exactly. Yeah. And it is really hard holding onto both of those things. I mean, I always get really hesitant about talking about the upside of being sick because being sick sucks, you know. It sucks.
Brianne: And you don’t owe anybody an upside, also.
Julie: No, exactly. Exactly. And also with the upsides that you can point to, it’s like, “Well okay that’s a nice upside, but think about all the upsides of being healthy. Don’t you think there are a few more upsides of being healthy?” But then at the same time it also feels really helpful and valuable to be able to say, “Okay, well here are some positive things that have come out of this experience for me.” And you know, one of the positive things that’s come out of it for me, and this particular positive thing probably would not have come out of being healthy, is there is a kind of fundamental sweetness of being alive that I feel at this point that is independent of whether I get what I want, and my body is functioning the way that I want it to, and my brain is functioning the way I want it to, any of that stuff. I feel like I have learned, like developed an ability to say “Wow, the sun is shining in through this window on my skin and it feels so good. And what a blessing to be able to lie here and feel the sun on my arm. Like, wow!” And that sense of… You know, when I was younger, I start the book actually talking about when I was building my house and my then-husband was sick and that experience kind of broke me at the time. I just, you know, things were not going the way I wanted them to and I was trying so hard, I was working so hard, and I could not make my husband better. He was bipolar and just really fell apart during those years. I could not make the experience of building the house be what I wanted it to be. I could not… I just couldn’t, you know, I couldn’t do it and I didn’t have any way of understanding that. It felt like, “Okay, I’ve done something wrong here and I need to figure what I’ve done wrong and fix it so that everything will start going right again.” And I was pretty suicidal in those years. I thought about suicide a lot. And at this point I don’t… I’m not saying nothing could push me there because I know that’s not true. But as a day-to-day thing, it’s not a place I go, even when circumstances are actually much more difficult than what I was dealing with when I was younger. Not getting what I want doesn’t make me feel like life is not worth living. When I was younger it felt like, “Well, I want to be good, I want to be skillful, I want to learn how to accomplish things so that I get what I want and that’s what life is about. And so if I just can’t, no matter how hard I work and try, I don’t like this game and I don’t want to play it anymore.”
Brianne: Yeah. Like what am I doing here?
Julie: Right, right. So, you know, that is… again, I don’t want to say, “Wahoo! Everybody should get sick like this. It’s great. It’s worth it.” But the fact is that I have gotten sick like this and it is the particular life that I have to lead. And that is a very great gift that has come to me out of it. And the other thing that I would say about that is on one level, yeah, getting six sucks, I wouldn’t wish it on anybody. And on another level, there’s just a lot of suffering in this life. You know, there just is. Like whether you get sick or you don’t get sick, the vast majority of us one way or another have a lot of suffering in this life. And like, it’s not really about minimizing that, you know? It’s not like our happiness is directly correlated with lack of suffering. So you know, on the one hand, yeah I would much rather be healthy. And on the other hand, this happens to be the life that I’ve had to live and it’s a pretty good life. I’m happy with it.
Brianne: Yeah. Which is good. And that super resonates with me. Like sure, would it be nice if whatever path I drew out at 18 or 25 had exactly worked out.? Like yeah, I probably would have also liked that. But at a certain point you’re like, “Okay, this is my body and I can learn to listen to it and learn to enjoy the things that it does and the moments that are working.” Like you say about sunlight, it’s like, “Well, I’m not too busy to notice, which I would have been, you know, 10 years ago or whatever.” I love that. I love that. Is there anything in your brain about any of this wide spectrum of things to talk about that we have not gotten to somehow, that we haven’t covered that you’ve been thinking about?
Julie: Well, just one other thing. I guess one other thing that’s come to me through being sick is that I’ve ended up with this role of, you know, through my journalism, really kind of standing up for chronically ill people. I’ve done a lot of work to debunk the PACE trial, which we mentioned briefly earlier.
Brianne: Yes! And I know, I’ve read some of your stuff on that. It’s out there,, people can Google it.
Julie: Yeah. And again, in combination with a lot of other people who have done a lot of hard work. I don’t want to say that this is my victory, but I feel like I’ve contributed to the victory. Things are really changing with regard to that. And that’s super satisfying. And also when the really terrible Netflix series Afflicted came out, I wrote an op-ed for the LA Times about that. And being in a position where I have the skills, I have the connections, and frankly, you know, I can afford to do it because most of that is a huge amount of work for very little pay. You know, unfortunately, the more meaningful it is, generally the less you get paid.
Brianne: Yeah. I’ve done some really fun writing for hire before, but it’s repetitive and boring.
Julie: Right. Right. But that’s hugely satisfying, and just gratifying and meaningful, you know. And I just feel grateful to be in a position to do work that actually affects people’s lives. I mean just today I got a message from somebody who said that she figured out that mold was her problem as a result of reading one of the articles that I wrote and that’s just, it’s an amazing thing. And I just feel really grateful to be in a position where I can have some positive impact in this world, you know, what else are we here for?
Brianne: Yeah, totally. Yeah. Because like you say, your background really kind of uniquely… I love this about your book, but about your writing. It’s like because you had been so, I’ll say rigorously embedded in science, which might not be how you would describe it, that you talked about at the beginning of this conversation too. It’s like you get sick and you’re like, “Okay cool. Everything I know so far tells me that there will be an answer so I’m going to go find it.” And to be able to live in that world and converse with people in that world as you’re leaving it. Like you get to be a translator in some ways too, because there are plenty of people in the chronic illness, and then also I would say the alternative wellness space online, who are like… completely non-credible. Just completely non-credible people putting garbage out onto the internet and making everybody else look bad. So also, thank you for writing about your experience from a place of not that. Like, it’s true that this stuff takes us into like going to psychics or all of the other things that people do, celery juice is a big deal right now. I don’t know if it’s helping people, maybe it is. But it’s like you get there and going through that process for people who have never been there, even just that is really important and incredibly helpful, I think. Journalism.
Julie: Yep. [laughs] Sometimes you can actually do good things with it.
Brianne: [laughs] What a world. Wonderful. Well, thank you so much for talking to me. This has been excellent.
Julie: Thank you!
Thank you for listening to episode 25 of No End In Sight! You can find Julie’s book, Through the Shadowlands, just about anywhere. She has a website and it’s on Amazon for starters. You can find this show on instagram @no.end.in.sight.pod, and you can find me on both instagram and twitter @bennessb.
I’ve got many more stories to share with you, so make sure you subscribe on itunes or stitcher or wherever you get your podcasts.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. Now that I’m trying to get back on a more regular work-type schedule, I’m hoping to get this group a little more active.
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. One of these days I’m going to get to work on some spring and summer patterns. I’d love it if you checked us out at digitalartisanal.com.