Aaron Goodman: Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a longtime journalist, documentary maker, university instructor, and communication studies researcher. And I've lived with Multiple Chemical Sensitivity, or MCS, for years. MCS is also known as chemical intolerance, toxicant-induced loss of tolerance (TILT), and idiopathic environmental illness.

The illness affects millions around the world, and the number of people with MCS is rising just about everywhere. Living with MCS means dealing with a range of overlapping symptoms, including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes, and more.

Trace amounts of chemicals and synthetic fragrances in household and personal care products, pesticides, paint, construction materials, cigarette smoke, and more can spark a cascade of debilitating symptoms. Finding accommodations can be very complicated. Dismissed by healthcare providers and employers, and even loved ones, many feel misunderstood, isolated, and invisible. This podcast aims to change that. 

We delve into the latest research and speak with all kinds of people impacted by MCS. You'll gain important knowledge, a sense of validation, and learn about navigating the realities of MCS. We also explore wider issues connected to toxic chemical pollution and how individuals and communities are pushing back against it and the harms it causes.

In this episode, I'm speaking with Evan Malmgren. Evan is a freelance writer and school bus driver in Madison, Wisconsin, in the US. I invited Evan to speak with me after reading an article he wrote about MCS published in the October 2024 issue of Harper's Magazine. The piece is called "The Fever Called Living: On the Plight of Environmental Illness Refugees." 

I'll post a link to the article in the show notes, and I invite you to check it out. Please share your thoughts about it and this conversation with Evan. 

In the article, Evan profiles an environmental refugee and former cabinet maker, Gary Duncan, who moves between Colorado, Utah, and beyond. 

I ask Evan some difficult questions about his decision to focus on Gary, who's quite a unique individual in some respects, and the risk of othering people with MCS. I asked Evan about his thoughts on why some people and researchers continue to claim that MCS is a psychological condition, the influence that journalists and media have when it comes to public perceptions about the illness, and more.

Aaron Goodman: Evan, thanks so much for joining me and taking time to do this.

[00:03:10] Evan Malmgren: Yeah, of course. Pleasure to chat.

[00:03:14] Aaron Goodman: What sparked your interest in reporting on MCS, environmental illness?

[00:03:22] Evan Malmgren: So, if you go further back into my published writing, I really mainly got my start in journalism covering communications infrastructure. And so this was during COVID, when the 5G rollout was happening.

Just because I covered this kind of infrastructure, I started seeing on social media a lot of posts of people drawing a connection between the 5G rollout and COVID, and people suspecting or claiming that perhaps COVID-19 was being caused by 5G transceivers. It struck me, just on its face, as absurd because it has just always sort of been common sense to me that, oh, this stuff is just completely harmless. It's everywhere.

And so, when I set out to report what evolved into this Harper's piece, I became interested in people who had... I was looking at a looser spectrum of people with environmental sensitivities, which includes people with EHS.

[00:04:40] Aaron Goodman: Can you talk a little bit about this particular piece for Harper's on Gary Duncan?

[00:04:46] Evan Malmgren: So, I found Gary in, I believe, the spring of 2021. Gary winters in a propane-heated trailer outside of Moab in Utah. Yeah, so this is in the Southwest—very low population density. It's high elevation. It's a relatively dry and sparsely populated climate. Then he spends the nicer parts of the year traveling around a number of locations that he has identified as being safe in Utah, Colorado, Arizona, and New Mexico, mostly staying kind of north in that area during that period of the year when he's traveling.

He has a wooden cabin that's built into the back of an old pickup. It's sort of like a mobile shack that goes with him wherever he travels to. And he's made all kinds of custom accommodations to it. There's this adobe mud mixture packed on the exterior. He has a wooden steering wheel. He's redone all the electrical work in the car. The only long-term sustainable solution for him was to take up this kind of transient lifestyle and stay on the move.

[00:06:01] Aaron Goodman: What is it that drew you to want to profile Gary specifically?

[00:06:06] Evan Malmgren: Gary Duncan is 78. Now, there was a lot of, I think, emotional and spiritual dysfunction in his life. He was a high-end cabinet maker living in LA. He was an alcoholic. He was dealing with a number of different issues, and he sort of just went through this period of radical change. He got into AA, he got sober, he started getting more into spiritual practices, and came into contact with a German doctor who suggested that a lot of his symptoms seemed to align with symptoms... He started researching it and found that he felt it could explain a great many things in his life that he had been dealing with.

[00:06:48] Aaron Goodman: And you mentioned Gary lives with MCS. Can you talk a little bit more about his health?

[00:06:55] Evan Malmgren: So, Gary claims a broad range of sensitivities. But yeah, as far as MCS, he feels sensitive to a lot of common chemical products.

[00:07:05] Aaron Goodman: Yeah, and so how much time did you spend with him and what were your impressions?

[00:07:11] Evan Malmgren: I spent, I think it was like three days the first time I met up with him, maybe four days the second time. Gary's just like a really compelling character. He has very strong beliefs. He is a pretty strong and forceful personality. He's a bit eccentric. I think he's a very sincere, gregarious person who goes out of his way to be helpful. And I think the extent to which he does this can sometimes be a bit surprising. It's like, oh wow, this guy has chosen to live this extremely secluded, kind of isolated lifestyle. But as soon as he's in contact with people, he's all smiles and just wants to talk. He's a really sweet, sincere, genuine guy. And I chose to build the piece around him mainly because I just thought he was a compelling subject.

[00:07:59] Aaron Goodman: Yeah, and there are, as you know, a lot of folks who just can’t live anywhere. So they do seek this isolated lifestyle in remote areas. That’s like Gary, right? He just needs to be out there.

[00:08:13] Evan Malmgren: Yeah, absolutely. But there are lots of people who identify with these labels as well who are living in cities, living in normal urban areas, and either just dealing with the symptoms or doing what they can to manage them. And I think that’s probably a far larger population because I spoke to a number of advocates, and they maybe felt that for me to focus on someone like Gary Duncan, who’s in this kind of extreme situation, paints MCS in a particular light that is perhaps at risk of just reinforcing a public perception of how these people are, you know, this is psychosomatic, these people are unstable, they’re like not “normal” in so many other ways.

[00:08:57] Aaron Goodman: What were your thoughts going into this about writing a profile for a very influential publication? So every time there’s a piece about MCS, it can influence public thinking. And so were you thinking about that, like in terms of your decision of choosing someone who’s—you mentioned that was your word—eccentric, right? The choice to interview someone who is eccentric risks exoticizing the illness. And so what are your thoughts on that?

[00:09:30] Evan Malmgren: I have experienced so much self-doubt around this. I’ve had moments working on that piece where I’m just like, what am I doing? This feels irresponsible. So I’ve gone through cycles of self-doubt and acceptance around it. This is maybe not a very satisfying answer, but it’s just at the end of the day, doing a profile of people in my neighborhood living everyday lives is not as easy to build like a forceful narrative around it.

So in one sense, that is a real consideration. I mean, especially after I started reporting the story, I would tell friends and associates that I was working on it, that I was thinking about this issue, I was talking to people, and just the fact that it became a common conversation starter in my life led me to recognize, oh, there are so many people who identify with chemical sensitivities, who I just wouldn’t have known that otherwise. Really, you know, just minor everyday things.

Like, my day job, I drive a school bus. I have a co-worker who is only ever put in our propane-powered buses because she experiences negative effects from the diesel exhaust on the diesel buses. 

I do feel a lot of empathy for Gary and people like Gary, and I don’t think that someone in his situation needs to be seen as crazy or whatever because at the end of the day, although his character profile may not represent or resonate with the majority of people with MCS, it is similar to a lived experience that a lot of people do have today.

[00:11:08] Aaron Goodman: There’s an argument that, you know, some researchers put forward that it is a psychological disorder, right? That it’s anxiety-based. And then there is credible research that shows it’s not and it’s a physiological illness. But the challenge is that there aren’t biomarkers, right? So I can’t go to the doctor and get a blood test or a brain scan and show that I’m reacting to whatever makes me ill.

Just for the record, I’m of the belief that it’s physiological. And I wonder, as someone who’s looking in at this illness from the outside, how you think that could function. What would it look like if we take me as an example? Like, my kryptonite is dryer sheets. They’re one of the big ones. So if I have my window open here, and I’m in my home, and dryer sheet fumes blow in, it’s going to make me very ill, and the symptoms will be multiple and they’ll last for many days.

What could that mean? Let’s just say if I have a psychological illness, what’s happening there? Is it that I’m just having a stress response, or I’m having an anxiety attack? Because my reaction isn’t anxiety-based. So what do you think could be going on in a person’s mind and body? What do you think would be happening there?

[00:12:31] Evan Malmgren: I’m not going to sit here and tell you that I think you’re having a psychosomatic, anxiety-based stress response. I feel in no way equipped to tell that to another person. What I can speak to is my own personal experience with this stuff, which is—and I get into this in the Harper’s piece.

When I first started reporting this piece, frankly, there was a lot of spiritual and emotional imbalance in my life. I have since been diagnosed with bipolar disorder. I had really bad substance use issues. I was badly abusing amphetamines. So this is part of why the article took so long. I actually had a draft done like one year after I had started reporting, in like the summer of 2022.

And around that time, I experienced a full-blown psychotic break that escalated to a point—it didn’t start here, but it got to a point—where I believed that I was experiencing premonitions and receiving direct instructions from a higher power. I mean, just totally out-there, delusional, magical thinking.

Then my behavior became very erratic. This whole episode destabilized my life in a lot of ways that I’m still dealing with. But one of the things that happened during that time was I started subjectively experiencing really powerful reactions.

And this actually started in a much milder place after I had gotten back from being with Gary Duncan because I was just spending a lot of time thinking about these conditions and like, what is it like for people who experience them? And so I sort of started doing tests on myself. Like, I would put my head right next to a WiFi router, for example, and hold it there for a little while. And I started feeling as though, oh, when I get close to these, I notice that I can feel this sort of rippling sensation—static-y, sort of. It felt completely like a physical bodily response to proximity to the 5G transceiver that could then lead to a headache or whatever.

So first I was experiencing that, and that sort of built up towards, I had this larger kind of fully delusional psychotic break. It took me a long time to recover from, and coming out of that experience, I have no idea how to draw lines around like what was real about this. I think that your mind really can work your body up into having a sort of bodily response, and that can feel entirely real and it can be very debilitating. But I personally don’t want to universalize that experience and say that, oh yeah, Aaron, that’s what you’re going through right now. I don’t believe that. I wouldn’t make that stretch. I do think that can be a real thing.

[00:15:39] Aaron Goodman: And what do you think of the role of a journalist and the media in navigating these issues and creating public information, public knowledge? Do you feel like you had a lot of responsibility on your shoulders going into this?

[00:15:53] Evan Malmgren: I may have had more responsibility than I initially understood when I was first approaching the project. Personally, again, I don’t like to make generalizations about what I think other people should be doing, but in my own work, I try to approach issues from a place of empathy and in trying to foster empathy in others.

And that does not always mean that a source is going to be completely happy with my article or that they’re going to feel perfectly represented. But my goal is to try to communicate to readers in a way that will help them perhaps better understand people or an issue that maybe they hadn’t considered super deeply before.

[00:16:43] Aaron Goodman: How has Gary responded to the piece?

[00:16:47] Evan Malmgren: So I actually have not heard from Gary since the piece came out. And this is something that I have been having some anxiety about because I had been in touch with him in the months leading up to its publication. And I know that he was kind of anxious about it coming out. And so when I’m talking about people feeling misrepresented by it, I think one of the biggest anxieties or concerns I have is that Gary may have felt exploited or taken advantage of.

So I don’t know what he’s thinking about it right now, actually. I think that he may have hoped that my piece was going to be more of an exposé or a really clear-cut takedown of the telecom industry or something, and not so much focused on him as a person. So yeah, I actually haven’t heard from him, and I would be curious to know what he felt about it—however he felt about it—but yeah.

[00:17:46]  Aaron Goodman: Do you think it’s getting harder for folks like Gary—and you mentioned there are probably hundreds, if not thousands, of others who are environmental refugees with MCS—do you think it’s getting harder for folks to find places that are safe for them?

[00:18:02] Evan Malmgren: It is undeniable that people who use these labels to self-identify are suffering in many cases, and it’s very hard. Snowflake, which I visited in my piece—Snowflake, Arizona—is one of the largest sort of permanently settled EHS and MCS communities in the United States.

Right now, in real time, there is a proposed cell tower that is planned to be built two miles away from their community. And I think that whatever one may think about that, their condition—for me, it’s hard to see why should they not have a place that feels safe for them to live? Why should they not be able to make their own health decisions and have bodily autonomy in that way?

[00:18:49] Aaron Goodman: Did Gary talk a little bit about, or at all, about any stigma he’s faced, any judgment that people have had toward him?

[00:18:56] Evan Malmgren: Gary is an example of someone who I think has come around to a place of—he accepts that a lot of people see him as crazy, and he doesn’t care about that anymore. He’s just sort of like, okay, you can think that about me. I’m going to think the same about you. Like, you can be in denial about these things if you want to, whatever.

I mean, that’s part of why I was able to get so much access from him because he sort of had this attitude of, like, I have no control over what you’re going to do with this information. I’m going to put it out there, and however things land is just how it’s supposed to happen.

Now, from having talked to many other people with EHS and MCS, I understand that a very common issue is this sort of experience of not being taken seriously, of having one’s conditions written off, particularly by family members, coworkers, people that the person may be close to.

And I don’t know what to say about that except that I completely understand how maddeningly frustrating that experience could be.

[00:20:07] Aaron Goodman: It’s crushing when it happens. Yeah. It’s very hurtful when it happens. Yeah. 

I talked to a psychiatrist about, you know, whether MCS is a psychological psychiatric illness. And her view is that it's not, it's clearly not. But, you know, having to live with a condition where, people who haven't, don't know from one moment, one second to the next, whether they will be able to be healthy or not, that in itself can create a lot of anxiety. And, um, I can imagine having to isolate oneself and move and I imagine there, there must be financial pressures and their social pressures and their stigma, right? And just being isolated. You mentioned being isolated from people for that many years, right? All of those stressors come together. Could, I imagine, create what could appear as psychological disorder. Absolutely.
 
[00:21:10] Evan M: And everyone struggles with mental health issues. Like I, I struggle with mental health issues.

I, aside from all the other stuff I talked about earlier, like I, I experience stress, I experienced depression. There are days when I don't want to get out of bed. There are days when it's very difficult for me to perform basic functioning tasks. And I can totally understand how like someone with one of these labels that are considered contentious, controversial, not taken seriously by many of those in the medical profession, how like all of these sort of like very normal things that just we as human beings deal with could get put under a microscope and seen as, Oh, is this like further evidence of your instability.

[00:22:14] Aaron Goodman: I can totally see how those things can be become weaponized. I absolutely believe that happens all the time. I completely understand how the way in which they can be perceived by some people can just become immensely frustrating in ways that many other people do not have to deal with. I think it's actually impossible for people to understand.

We don't get it until we get it. I remember my mom, when she developed cancer over 10 years ago and died from cancer, she said, Oh, this is what cancer feels like. I was like, how does cancer feel like mom? You know, because we don't get it until we get it, right? Will you continue to report on this, this issue of environmental health and MCS?

[00:22:42] Evan M: That is difficult for me to say I've, I've kind of just wrapped this project up. And right now it's something that I'm not really chomping at the bit to keep digging back into just because there are so many points of sensitivity that I had not considered at the outset. There's so many things that I don't understand very well and that I don't feel qualified to comment on in a very authoritative way that if I do continue to report on it, it will be in an iteratively, even more thought out and deliberate kind of way. I'm not sure if I'm going to embark on anything substantial in the future, but if I do, I would want to continue to learn from my mistakes and be careful about it. 

[00:23:28] Aaron Goodman: Well, I appreciate your humility and your willingness to talk with me and your openness and for all the work that you've done on this.
So Evan, thanks so much. 

[00:23:37] Evan M: Thanks so much, Aaron. It's been a pleasure. 

[00:23:39] Aaron Goodman: You’ve been listening to the Chemical Sensitivity Podcast. I’m host and creator Aaron Goodman. The Chemical Sensitivity Podcast is by and for the MCS community. The podcast is supported by the Marilyn Brockman Hoffman Foundation and listeners like you.

If you wish to support the podcast, please visit chemicalsensitivitypodcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS. To learn about the Chemical Sensitivity Podcast, please follow the podcast on YouTube, Facebook, Instagram, X, BlueSky, and TikTok.

And as always, you can reach me at aaron@chemicalsensitivitypodcast.org Thanks for listening. 

The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman and made possible by funds from the Marilyn Brockman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about Multiple Chemical Sensitivity.

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