Julie Rehmeyer is author of the book Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand. Both journalist and patient, she takes us through the confusion, pain, and sometimes humor–as well as the science–of Chronic Fatigue Syndrome, a disease that Western medicine has not yet fully grasped. We meet subcultures of people who are taking on this disease on their own and doctors who are in denial that it’s even real. The book is a window into the life of a woman finding a path out of the worst of the illness, and, one can hope, inspiring researchers to take it seriously.
This program aired on KUNM Public Radio on May 17, 2017
Mary-Charlotte Domandi: Julie Rehmeyer’s new book “Through the Shadowlands” is a fascinating story about chronic fatigue syndrome, and it has a particular resonance for me personally. I have a good friend who lived in my house some years ago who had chronic fatigue syndrome, and because of her illness, she lost pretty much everything that she held dear because of this disability. She was no longer able to work, or ride horses, or dance. She had to move away from home and family. And all of this she handled with a real grace and equanimity, and with a remarkably objective, scientific attitude. It was really impressive, and it made me think a lot about how I might handle it if I had so much loss in my life.
So when this book came out, I was really happy to see that it was by someone who was not only a science writer but also a person who actually had the disease herself. What’s hard about chronic fatigue syndrome, which you’ll hear, is not only that it’s a debilitating illness but also how people respond to it. Doctors don’t understand it, a lot of people in one’s life don’t think it’s even real, and then there’s another subgroup of people who think that they, and only they, have the cure, whether that’s Eastern medicine or a special diet or their spiritual guru. And the reality is those things rarely if ever actually work.
This is a book that can give people a reality check about this illness, and it’s a reminder that even while we’ve understood many diseases, we’ve eradicated smallpox, we have treatments and vaccines for illnesses that used to kill people, there are still other diseases that are not well understood and have as yet no really good treatments. So let’s go now to our conversation with Julie Rehmeyer.
I’d like now to welcome Julie Rehmeyer. She’s a science writer and mathematician. She’s author of the new book, “Through the Shadowlands: A Science Writer’s Odyssey Into An Illness That Science Doesn’t Understand.” Welcome.
Julie Rehmeyer: Thank you, I’m delighted to be here.
MCD: Great to have you. You will be reading, by the way, on June 1st at 6:00 at the Steve Elmore Gallery here in Santa Fe, and June 5th at Bookworks in Albuquerque, and we can talk about that a little bit more at the end of the show. But this is a fascinating book about an illness called chronic fatigue syndrome, also called myalgic encephalomyelitis.
Julie Rehmeyer: Well done pronouncing that, I’m impressed.
MCD: I don’t know, not sure exactly … well, you you explain what each piece of those words mean. This is something that somebody like you might have written about as a science writer, science journalist, but then you got the disease yourself. What was it like when you first started having symptoms? How did you come to realize that it was an illness and not just that you were run-down and stressed?
Julie Rehmeyer: Initially, I did think I was just run-down and stressed. It was a hugely stressful time in my life. I was building my own house with my own hands, I was working full-time, more than full-time. And my husband at the time was quite ill. So it was an over-the-top stressful time. So I thought, “Well, I’m tired.” Of course I’m tired, who wouldn’t be tired dealing with all of this? But it was a level beyond that. I remember, for example, walking down the hallway to the bathroom and trailing my hand along the wall cause I was afraid I’d pass out. The other thing that, in retrospect, was probably the most alarming thing about the symptoms that I had at the time was that I couldn’t exercise the way that I used to. In particular, when I tried exercise, it made me feel much worse, and in particular, the next day, I felt much worse. That’s actually the hallmark symptom of chronic fatigue syndrome. Despite the name, fatigue is not really at the core of the illness. The problems with exercise are much more central and indicative that that’s what’s going on.
MCD: Now this is an illness that is still very much in the process of being understood. The subtitle of your book says, “An Illness Science Doesn’t Understand,” and you compare it to other illnesses like ulcers, which were thought originally to be caused by stress. Everybody’s like, “Oh, this stress is gonna give me an ulcer.” And then it turned out to be a specific bacterium, and they could kill that bacterium, and now there’s basically no more ulcers. And this chronic fatigue syndrome is an illness whose causes are still not well understood, not established. You can read the Wikipedia article, and you can read the Mayo Clinic article, and it’s sort of confusing. One of the things that drives patients crazy is that it’s dismissed by many doctors as a psychosomatic or psychiatric illness. Tell us about your experience and the experience of other patients in this respect.
Julie Rehmeyer: Yeah, it’s a huge, huge problem. The science is actually really clear that it’s not psychosomatic. We actually really do know that at this point. That’s not in doubt. But the word hasn’t gotten out, so both regular folks and doctors commonly think it’s just people being lazy and not pulling themselves together, maybe not taking care of themselves, and if they just ate well and exercised and weren’t such lazy complainers, they’d be fine.
MCD: And so many people who have it, like you, are people who loved to take super long hikes and build their own house by hand. That is not the hallmarks of lazy people.
Julie Rehmeyer: Right, right. Yeah, the reality is so different from that. For many years, I was just kind of … Something wasn’t quite right with my body, but I wasn’t convinced that I had any serious illness. And then in late 2006, I woke up one morning, and I couldn’t walk. Could barely stagger across the room. So then I was like, “Okay, well, something’s obviously really wrong here.” And so I went to a neurologist, cause it seemed pretty clearly to be a neurological problem, and he was the one who diagnosed me with chronic fatigue syndrome. But he had no tests, no treatments, no other doctors to send me to. Nothing. And for him it clearly meant, “Please get out of my office. I have nothing for you.”
Julie Rehmeyer: So then I went to various other doctors, including a neurologist who specialized in gait disorders. He watched me stagger down his hallway and said it was not similar to anything he’d ever seen before. And he said, “Well, maybe it’s conversion disorder.” And conversion disorder is a nice term for, “It’s all in your head.” So it’s a massive, massive problem. It’s an especially severe problem in the UK, where even now patients sometimes get locked up in psych wards. And Europe as well, there’s a tragic story of a young woman who was literally taken by the police from her parents’ home. She was I think in her 30s at that point, so not a child. And locked in a psych ward for years, and kept from her parents. Her parents couldn’t communicate with her for months at a time. She was only released very recently, and got very much worse during the time that she was locked up. So it’s not just a nuisance that people don’t understand, it really puts patients at risk.
MCD: Do you think that being a science writer and a mathematician helped you navigate this disease, once you realized that you were really sick?
Julie Rehmeyer: Very much so, very much so. On a lot of different levels. One thing was that it just gave me the confidence to deal with all the difficulties of it, and to trust my own process of understanding the situation, to doubt myself less. But of course it also applied in a lot more direct ways. I spent a lot of time digging through the scientific literature, trying to understand what was going on. I could talk to doctors and scientists and not get hoodwinked by the things they said.
And it was helpful in also some more surprising ways as well, particularly my experience at mathematics. As a mathematician, on one level mathematics is very logical, and proofs spell things out in perfect, logical detail. But the process of discovery is really different from that. It’s very intuitive, you kind of feel your way to a discovery based on your sense of how things tend to work in mathematics. And you just develop that over years of working, puzzling out mathematical questions. And that gave me confidence in my own intuitive process to figure my illness out as well. That was one of the central tools for me in finding my way.
MCD: You saw a doctor whose treatments helped a little bit for a while, but it didn’t last. And then you started connecting with other patients through social media, and you found that a possible trigger for the disease might be mold. What did you think of that hypothesis when you first heard about it, and then what did you do?
Julie Rehmeyer: Well, let me set the context a little bit, which is important. In late 2010, I was in a pretty good period. So good that I could even do mellow hikes, like three miles hikes, which was great. And then I was on one such hike, and I was a mile from home, and I thought, “I’m a little tired.” And I had learned that the central tool for managing my illness was to stop as soon as I thought that. But of course, I was a mile deep in the wilderness, and stopping wasn’t really an option. So figured I would pay for it with a day or two, or maybe three days, of pain and exhaustion and fuzzy head and swelling and all that kind of thing. But in fact it turned out to be a year. So I spent a year bedbound about half the time and without any real prospects for getting better.
At that point, I was living alone, I was often so bad off I couldn’t even turn over in bed. I couldn’t really make a living, I didn’t have family to turn to, it was a really desperate situation. I managed to write a story about chronic fatigue syndrome for Slate magazine. The result of that was I got contacted by these patients, and I got exposed to this subgroup of patients who believed that taking extreme measures to avoid mold had had enormous positive impacts for them. When I first hear about this, I thought, “Oh, that’s a bunch of hooey.” What I had heard from the mainstream scientific opinion was that mold could cause asthma, allergies, respiratory problems like that, but it couldn’t cause neurological problems. And what I had heard was that basically the people who thought it did were pretty much nuts.
However, I started seeing their stories on Facebook, and there was one story in particular from a young man who had spent two months living in the desert in a cargo trailer, and he posted pictures of himself running through the wilderness and lifting weights. And at that point, exercise, I’m doing air quotes here, “exercise” for me was, like, getting to the bathroom. That was the limit of what I could do, often. So I reached out to them, and I was still super skeptical. I didn’t have a lot of reason to believe that it was true, although it was kind of as plausible a theory as any other that I’d heard, really. And I was partly drawn to it because it was an experiment. I thought, “Okay, I can run the experiment and find out what happens.”
MCD: And so you actually did this experiment, which was pretty cumbersome, in the sense that you not only had to make your way to Death Valley and set up in a place where there was not a whole lot of vegetation or water or anything like that, but you also had to use either new or other people’s possessions. So it was a real … nothing even really familiar.
Julie Rehmeyer: That’s right. Yeah, it was a huge thing to do. I was on a little bit of an upswing right then, just enough that I thought maybe I could pull it off. But it was also pretty scary, because there was a real chance that I would end up paralyzed, in the desert, alone, with nobody to help. So it felt like a pretty big risk to take. And it took a lot, just physically, for me to make it happen.
MCD: But you did.
Julie Rehmeyer: I did.
MCD: What happened then?
Julie Rehmeyer: It was an amazing experience. Of course, being completely alone in the desert like that is a kind of profound thing. And then after I spent my two weeks in the desert, I didn’t have any clear sense at that point of whether it was working or not. I was gonna have to get exposed to have any real sense of that. And I decided to go see this guy, Erik the Mold Warrior, he called himself. He lived in Reno, and he was the guy who came up with this theory in the first place. So I decided I wanted to go meet him, and part of the idea, too, was that he would take me on a mold tour, to famously moldy places. And the prediction was that I would react to them.
So I drove to Reno, and I met him. We had lunch together, and he ranted and raved about how chronic fatigue syndrome researches hadn’t listened to him, and how outrageous this was. He described how he had stalked these researchers to tell them about his experiences, and to force them to listen, and even then they wouldn’t listen to him.
MCD: Yeah, cause stalking usually works.
Julie Rehmeyer: Right. “Can you believe it?” he asked me over and over. And I sat there in this restaurant talking to him, and I just thought, “I am so embarrassed. I am so embarrassed that I took this seriously at all, that I put so much into pursuing the fury of this clearly crazy person. What has become of me that I would do something like this?”
MCD: Right, “Here I am, Julie, the scientist and mathematician, talking to a nutball.”
Julie Rehmeyer: With this raving lunatic.
MCD: But he was a patient.
Julie Rehmeyer: That’s right.
MCD: He was somebody who had been as sick as you, or sicker, and was climbing high mountains.
Julie Rehmeyer: Yeah. Six months after starting mold avoidance, he was able to climb Mount Whitney, in California. So then he took me on a mold tour. The first day he took me just to a Whole Foods that he claimed was moldy, and he paused at one point, and he said, “It’s here.” And I really had to work hard not to laugh. I felt like, “I have entered a Poltergeist movie.”
MCD: Right, right.
Julie Rehmeyer: So he was then … The idea was that I would be feeling something, so I’m tuning in, and I was like, “Well, does that feeling mean something? Does that feeling mean something?” But there was nothing obvious at all, and by the time I left Erik and went back to my hotel, I was pretty convinced this was just all a bunch of hooey, and was pretty pissed off, really. Then I went to bed, and I woke up in the middle of the night, and I couldn’t walk, which hadn’t happened in a month or more. And I had this sensation that I could only describe as poisoned. Like, I just felt awful. I had been told that taking a shower would make a huge difference, which was fairly bizarre, because taking showers had never helped me in the past. But I went and I took a shower, and I was able to walk afterward and felt much, much better.
MCD: The long and short of it is that you got better.
Julie Rehmeyer: That’s right.
MCD: And that eliminating mold from your life entirely, as much as humanly possible, was what made the difference. So you basically kind of lent a lot of evidence toward this ranting man’s hypothesis.
Julie Rehmeyer: That’s exactly right. Yeah, it was such a shock for me. So I had this experience in Reno, where I did react, and then I came home, and I reacted really strongly to where I was living, just as had been predicted. So I stayed out of where I was living, I stayed away from my stuff, and a week after I got back, I was just hanging out outside on my land, found myself feeling pretty good, decided to go for a little walk with my dog. I figured I probably wouldn’t go far, but it’d feel good to move around a little bit, make my dog happy. And I ended up walking to the top of the hill behind my house, which is 350 feet high. I hadn’t been able to do that in a year and a half.
And I was absolutely blown away. I mean, I was crying. I took a photograph from the top of the hill of the whole Rio Grande Valley, this incredible view from up there, and emailed it to all my friends, with the subject line, “Oh my god.” Cause that was the first indication that this whole thing was actually gonna make me better. I mean, okay, it was exciting to react and to have the sense that that was the problem, but that didn’t show that avoiding it would actually make me better. But yeah, being able to take that hike was just amazing.
MCD: So you and many other people with chronic fatigue syndrome have worked very hard to eliminate mold, and actually it’s made a huge difference.
Julie Rehmeyer: That’s right.
MCD: So is this something that researchers are now looking into?
Julie Rehmeyer: Only a tiny, tiny bit. There are some glimmers at this point of change, of some people getting interested in understanding it. But we’re still really in the dark ages about mold. One of the big questions for me when I had this unbelievable experience for myself was it kind of posed a challenge for me. Here I am, I’m a science writer, and yet I’d had this experience that was completely contrary to what mainstream scientific opinion said was possible. And so I really wanted to understand what’s going on here. What do we know scientifically about mold? Does it make my experiences plausible or implausible? And why is there this belief that this couldn’t be true?
And what I found is, not surprisingly, really, science is done by human beings. It’s not a perfect process. In the case of mold in particular, it was strongly influenced by the reaction of the insurance industry to court cases about mold. And the insurance industry really struck back and promulgated this notion that mold doesn’t cause serious health effects, at least not beyond respiratory symptoms. And that had a huge impact on attitudes, both among scientists and the general public, and judges, and all of that. And it’s made it impossible for researchers to get funding to study it. And not surprisingly, that means that we don’t have a lot of solid science showing that mold can cause non-respiratory symptoms. And that then reinforces this notion that it can’t, because we don’t have any science showing it.
Julie Rehmeyer: It’s a self-reinforcing cycle.
MCD: This has been, for you, not only an illness but a really deeply personal and introspective journey, and I was struck by a part of the book where you describe the process of letting go, by necessity, your ambition. You’ve always been a very ambitious person, but when you’re that sick, you have to find other ways of being. Tell us more about that.
Julie Rehmeyer: Yeah, that really is a very key part of the book and part of the experience overall for me. When I was in Death Valley, of course I had nothing to do, particularly while I was there, other than the basic survival tasks. So I spent a lot of time just sitting in my camp chair, watching the colors of the desert change. It was a very introspective time, and in particular I had all my life had had this real drive that came from childhood, really. I had grown up with an extraordinary mother who was very powerful but also unable to function in the world. So from my earliest childhood I’d felt this sense of mission to save my mother, and that over time sort of stuck with my in different forms. I felt like I had this obligation to go be a success and do great things in the world. And being there in Death Valley, it was like … It just seemed ridiculous. I was so sick, and there alone in the desert, it was just like, “Okay, this is too much. I can’t do this. I give up. I quit. I’m done.”
And so, what I discovered was it was almost like a balloon popping. It just was gone, that drive and ambition and obligation. It wasn’t just an, “I want to,” it was an, “I need to, I have to, I must.” And it was just gone. And then I discovered this incredible speciousness to my life. I didn’t have to do anything. Just making my food and occasionally sweeping the sand out of my tent. That was success enough, that was all I needed to do. Just breathing. That was the only thing I had to do. And then life took on such a different character for me. It became this huge gift. And there was a sense of speciousness and possibility that had never existed before in the context of all of that drive and need and requirement. There was suddenly basically no requirements.
MCD: And has that feeling lasted as you’ve recovered and continued to recover?
Julie Rehmeyer: Yeah, very much so. Very much so. Before I went to Death Valley, I had this strange feeling that I was going to the desert to die. And it’s not that I expected to literally be dead, I didn’t think that I was gonna be carried out in a coffin or something like that.
MCD: Although it was called Death Valley.
Julie Rehmeyer: Right, I know. I had to laugh about it, it felt so appropriate, like the universe had a little laugh. But I just had the sense like life as I had lived it was over. And so afterward, I’ve had this feeling like I really did die in the desert. All of that, the way I had structured my life, it was just gone afterward. It’s not that I think I’m immune from suffering, not at all. But it’s more like it’s okay. If I suffer, I suffer. So that has very much stuck with me, and it’s been one of the enormous gifts of this whole experience for me. It’s not that I would wish chronic fatigue syndrome on anyone, but this particular form of suffering brought me some really major gifts.
MCD: So where are you now, in terms of your health?
Julie Rehmeyer: So when I’m able to avoid mold successfully, then I’m pretty darn good. I’m close to 100%. When I’m not doing well, I can figure out what’s gone wrong and figure out something to do about it. So I don’t feel victimized by my illness anymore, and it feels like just part of what I deal with in being alive, in the same way that we all have various challenges in being alive.
MCD: What is your hope for the book?
Julie Rehmeyer: I have pretty high hopes for the book. Certainly I hope that it’ll be really helpful to patients, both patients with chronic fatigue syndrome and really people dealing with any kind of health challenge, in terms of not just the specific strategies that ended up working for me, but the overall approach that I took to my illness and my process of figuring it out. I also hope it’ll have a big impact on the public understanding of chronic fatigue syndrome and mold illness, and these poorly understood illnesses overall. I hope it’ll have an impact on the research about chronic fatigue syndrome and mold illness.
But also, my biggest hope for the book, really, is that it will reach people who don’t have any particular interest in these illnesses and open some space and possibilities for them, too. Cause really the fundamental issue the book is pondering is what do we do, how do we create meaningful lives for ourselves in the context of fundamentally not being in control? And I think the strategy that most of us pursue most of the time is that we just don’t think about it. We construct our lives for ourselves where we’re kind of in control most of the time, and we can just sort of put it out of our minds that that’s an illusion. And that’s not a bad strategy, it works pretty well most of the time. And then there are those times when it doesn’t, when things go wrong, and we’re forced to confront, “Oh my gosh, I am truly not in control here. I can live my life as smartly and well and everything as I possibly can, and things can still go horribly, horribly wrong.” How do you live with that?
Obviously I face that in the particular context of chronic fatigue syndrome, but really it’s something that most of us at some point in our lives have to deal with. And I was able to find for myself some approaches that really worked for me. So my biggest hope for the book is that people will sit down and read it, that they will be pulled into the story, that they’ll read it just because it’s compelling and fun and engrossing. And that they’ll come out of it with a sense of ease, a kind of perspective that allows them to be a little less afraid of that fundamental lack of control that we all deal with. And as a result, to have a little more room to work in the world. To have less constriction from that fear and more possibility in their lives.
MCD: Julie Rehmeyer is author of the new book “Through the Shadowlands: A Science Writer’s Odyssey Into An Illness That Science Doesn’t Understand.” Thank you so much for being with us.
Julie Rehmeyer: My pleasure.