Silent Winter - Toxic Chemicals and Chronic Illness: Joanna Malaczynski

Aaron Goodman  00:05 

Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and founder of the podcast. I'm a 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 Environmental Illness, Chemical Intolerance, and Toxicant-Induced Loss of Tolerance or TILT, and it affects millions around the world. 

Many people with a condition are dismissed but health care workers, employers, friends, even family, countless people with MCS struggled to find healthy and safe housing and get a combination at work and school and we suffer in all kinds of ways. The purpose of the chemical sensitivity podcast is to help raise awareness about MCS, and what it's like for people live with it. We featured interviews with some of the world's leading experts and researchers on MCS, and lots of people with the condition and we're just getting started. I'm grateful for generous support for the podcast from the Marilyn Brachman Hoffman Foundation, and thanks so much to many listeners who support the podcast. If you'd like to make a monthly contribution or a one-time donation, please find links on the website chemicalsensitivitypodcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS. Thanks so much. The podcast belongs to the community and the purpose is to advocate for all of us and your help means a lot. 

You're listening to Episode 41. It's called “Silent Winter: Toxic Chemicals and Chronic Illness.” It features a conversation with Joanna Malaczysnki. Joanna lives with Multiple Chemical Sensitivity, and is the author of “Silent Winter: Our Chemical World and Chronic Illness” published in 2021. The book explores the connection between toxic chemicals that are prevalent in our in our daily lives, and chronic illnesses, including MCS, Myalgic Encephalomyelitis (MECFS), cancer, diabetes, asthma, digestive issues, depression, dementia, and others.

Malaczysnki has worked as an attorney, a consultant and entrepreneur, and since developing MCS she's fold a spiritual path and practices and teaches somatic meditation. In our conversation, you'll hear Joanna explore how being exposed to toxic chemicals led her to develop MCS and CFS / Chronic Fatigue Syndrome. How “Silent Spring” by Rachel Carson published in 1962, which focuses on the impacts of pesticides on the environment inspired her to research the connection between toxic chemicals and MCS. While developing MCS led Joanna to develop a spiritual practice and practice somatic meditation and extending unconditional love to herself when she's suffering, how MCS has impacted her relationships with friends and family. She also explains how fragrances are typically made from countless chemicals, and multiple ways that impact the body. how companies are not required to list all the chemicals in their products, and that there's sufficient scientific evidence pointing to the harms of toxic chemicals. 

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Aaron Goodman  04:37

Hi, Joanna, thank you so much for joining me.

Joanna Malaczysnki  04:35

Hey, Aaron, thank you so much for having me. I appreciate being here.

Aaron Goodman  04:40

Of course. I'd like to invite you just to introduce yourself a little bit more for our listeners. And if you want to talk a little bit about your own experiences with with MCS.

Joanna Malaczysnki  04:52

My name is Joanna Malaczysnki and I wrote a book called “Silent Winter: Our Chemical World and Chronic Illness.” And that was inspired by my experience with MCS. But I kind of had an interesting, maybe ironic background to this because I had been introduced to the topic of toxic chemicals and consumer products through work in different formats as an attorney, as a researcher, even as an entrepreneur. At some point, I was working with the topic of toxic chemicals and consumer products. But I knew that information fairly theoretically, you know, neurotoxins, or carcinogen, and it was just things in a spreadsheet. And I was experiencing the impacts of those chemicals for quite some time before I realized what was going on. 

Originally, well, I guess I'd step back and say that I noticed, or maybe didn't notice very much that over the course, going into my adulthood and into my 30s, that I had less energy, I was going to sleep earlier, I had to come home from work and take a nap at lunch. And then at some point, about 12 years ago, I got pretty sick with what seemed like this sort of Permanent Flu. And I found myself sleeping up to 18 hours a day. And, you know, I went through the whole rigmarole of doctors, no really solution, then they found some intestinal infection, I got treated for that. And I thought that was going to be the end of the road, I was gonna be fine. But my, my symptoms persisted. And I, you know, I kind of moved I tried to change my lifestyle, but I still was sort of have these days where I was just exhausted. 

And then I had some more chemical exposures, I went on a trip, where I got really heavily doused with fragrance stuff, cleaning agents, and, and things and bedsheets and using towels and things like that. And then I think I had a pesticide exposure. It's just something that no one admitted to. And I woke up one day, and suddenly was extremely, you know, my nose was extremely sensitive to the chemicals. And I remember my neighbor hugging me, you know, maybe a week after that. And she had just essential oils on her. And I went home and then passed out for about five days. But I still it was really strange that despite everything that I knew professionally, and where I was there, I still wasn't fully clicking. But I went up the hill. And in one of those little neighborhood learning libraries, I found the book, “Silent Spring” by Rachel Carson. And she had a very short chapter in there about the human health effects of toxic chemicals and what they knew back then, which was 1960s. And just that description, it was like my proof, it was just validation. That was what was happening to me. So I started, I knew I had chemical sensitivity, and I started researching toxic chemicals from the lens of Chemical Sensitivity and chronic fatigue. But what I actually found not even trying very hard, I think in the book I mentioned close to 60 different common chronic illnesses that are linked to toxic chemical exposure from consumer products. And from the environmental pollution is ubiquitous in our world today.

Aaron Goodman  08:27

There's so much that you said that I'd like to explore with you. You know, and I think you write in a really compelling way about your exposure on the trip, you were mentioning, exposure to the laundry products right in the hotel room. And I think it's often I kind of tell myself, I can do this, it's not that big a deal, but they really are, can be very, very potent. You also write about something that happened when you were younger, if I'm not mistaken when you were swimming in in a river.

Joanna Malaczysnki  09:04

So this happened about 12 years ago, around the time that I got sick with the flu, I was swimming in two rivers to urban rivers outside of Portland, Oregon are immediately there really. And they were essentially Superfund sites. But that's if you know anything about how that works. So Superfun is basically a program where we take old sites that were polluted decades ago, and we designate them as Superfun sites. And then the companies that caused the pollution are supposed to somehow agree on who's going to pay for it. And this goes on for decades. And so most of the Superfun sites around the country have not been resolved. So there's chemicals that are persistent are known as persistent organic pollutants internationally, that do not biodegrade they just sitting there in the sediment of the rivers. And after some period of time they get ignored right like this. They want tourists, they want everybody to be swimming in the river and having a wonderful time. And I was, I was very much into being in the water. And so I was spending multiple times per week in these waters, stirring up that sediment. And getting that, absorbing that to my skin, getting that in my system until I reached a tipping point. And I got severely ill.

Aaron Goodman  10:28

So was the river before the exposure to pesticide and laundry chemicals or around the same time? 

Joanna Malaczysnki  10:37

That was before. And that's when I came down with chronic fatigue. And I, it felt like the flu, it felt like I had some sort of infection, some virus, and but it was just unresolvable, it was a mystery thing. And that's what chronic fatigue is for most people. But what I was experiencing is a physical overwhelm of toxicity from those chemicals. And already I was becoming sensitized, right, I was already overwhelmed. So my body was building that sort of the building the circumstances that would cause chemical sensitivity. And so even though maybe over time, I was started to eliminate those chemicals and felt better. I was already reacting and I didn't know it, you know, I would go to meetings and go somewhere. And I had no idea that there was a connection. But it was maybe, let's see, I think it was 2019, right before COVID, that I went on that vacation where I was exposed to fragrance. And then later I had a pesticide exposure where suddenly boom. And there was a time delay, you know, maybe a few weeks where I just woke up one day, you know, this stuff had kind of metabolized through my system, maybe the chemicals had mixed in with each other creating new toxic combinations, injuring my liver and doing my DNA. And suddenly I wake up and I can smell the garbage bag, I can smell the toilet paper, I can smell everything. And the tea that I was drinking every day smelled like rotten meat. And on top of it, I also had diabetic symptoms. So I remember eating like half a half an apricot and going catatonic and being a total mess.

Aaron Goodman  12:28

It's really interesting that you mentioned the link between fatigue, chronic fatigue and chemical exposure. It's certainly something that I relate to. And I think a lot of listeners will as well. And something that I want to explore more on the podcast, you mentioned, there are a number of illnesses that are connected. And you talked about the diabetic symptoms, which is something also that I've I've experienced low blood sugar, and I never ever connected it why ultimately did for the longest time didn't connect it. Hypoglycemia to chemical exposures in food. So you also mentioned, Joanna, that for a long time, you didn't know what was making you ill and I think a lot of listeners will also relate to that. What do you think can help change that? Do you think with more awareness about the impacts of chemicals, people will start to make those connections between exposures and chronic illness?

Joanna Malaczysnki  13:24

I think that what you're doing with this podcast, what the MCS community is doing, and there's also people who are both in the MCS and the chronic fatigue community, that they're most likely to change that it's kind of that grassroots spread of information that's most effective, because I don't foresee any time and then your future. The conventional medical establishment changing or the messaging, the conventional messaging that we hear from, you know, the federal agencies or the mass media, I don't expect that changing because there's too much at stake in terms of corporate profit, right, because these are chemicals that are this is a multi-billion dollar industry. And I think worldwide I you know, it's the numbers are staggering, just what a large industry this is that has its fingers now in agriculture in consumer products, you know, and in pharmaceuticals, I mean, it's so it's very hard to imagine that being the source of change, but I do think that any of us to the extent that we can talk to a person who's experiencing health problems and talk to them about the synthetic chemicals in consumer products and the toxicity associated with the vast majority of them I think there's going to be helpful for, for each of us on this planet.

Aaron Goodman  15:06

Can you take us back to the moment you decided to write your book “Silent Winter”? What was happening in your life? And why did you decide to write the book, which meant, how much work did it take? It's a really impressive, very detailed, really, incredibly researched book, what went into writing it?

Joanna Malaczysnki  15:27

I think it and that's really kind of you, I appreciate it. Thankfully, I had some, some background knowledge, right. Like I had a starting point where, first of all, I had good research skills, because I had worked as an attorney for many years doing, you know, I wasn't in the courtroom, I was sitting in front of a computer researching all the time, I had worked more on the theoretical side of chemicals and consumer products. So I thought I knew a lot. And I also had, believe it or not anger fueling me, I was, I felt very angry about what had happened to me. And like, this wasn't right. And I already knew, from both my education and my professional experience, that there was a lot of manipulation that happens by the corporate world, to change society, right to influence society. And then this is what was happening, like, these chemicals aren't serving us, and they're still being used. So I think that anger fueled me, because at the time, I was quite sick. There were days when I couldn't write it all. There were days when I was bleary. 

You know, there were definitely things I wrote down that were on my mind that I had to scrap because they didn't belong in the book, or were not that interesting. So it took some time. But I think that was that indignation and anger that fueled me to write the book. And along the way, I was learning so much. I mean, I thought I knew so much already. But when I started researching, I learned so much more. Sometimes I cried, sometimes the reality was so sad that I cried, or it was so shocking, that I was completely shocked. But I felt that I needed to get that information out. And what really motivated me I think the most was the knowledge of what's happening in my body, and how can I share that knowledge with other people? So that was, for me, maybe the most important part of the book. But I did feel necessary to talk about what are the motivations economically that are going on in this world that are causing society to make these kinds of choices?

Aaron Goodman  17:45

Was that one of the toughest things you had to reckon with sort of the this this issue of the economic forces that we contend with? Or was there something else that was really troubling for you to contend with, as you wrote the book?

Joanna Malaczysnki  18:00

Yeah, in some sense, it was not that tough, because I already came from a background where I knew that this is how the world is being influenced. I remember, you know, just even in college, where I studied economics, hearing about these things, so that stuff was not news to me. I think maybe the toughest thing was actually interacting sometimes I interviewed people, and hearing their stories. I think that was the toughest, because this is a very, very hard illness, to deal with really any chronic illness or serious illness is very hard to deal with, like chronic fatigue, Chemical Sensitivity, it really changes your life. And so while it was, it was lovely to connect with people, it was also difficult to know that this is the reality that a lot of people are dealing with.

Aaron Goodman  19:01

Joanna, if it's too personal, just let me know. But how has it changed your life? How have how have you kept going since you got here?

Joanna Malaczysnki  19:14

I became very spiritual. That was, you know, maybe some people they have a hard time in life. Everybody makes choices about how they cope with that. But I gravitated towards spirituality, to understand sort of the context of my life within the context of the rest of the world. What I was doing here, what was my purpose? How I was going to deal with this. And then the spiritual stuff that I was learning became pragmatic information for dealing with the things that all of us with MCS have to deal with, which is our relationships, to family, to friends, to the person at the grocery store, how we can indicate with others, how we see ourselves, what choices we make and what sacrifices we're willing to make in order to maintain good health. Those are all very, very difficult choices we have to make. And it can be extremely hard to live with this disease. I mean, extremely hard. There are definitely times I think we're all of us a question whether we're going to be able to continue, right? Is it going to get any harder? Are we going to have to make even more sacrifices to be here in this world. And I have found that that, that spirituality has helped me a lot, I do somatic meditation, which is a form of meditation, that's about feeling feelings in your body, and I apply unconditional love that the motion of unconditional love when I have a hard time, like that helps me a lot. Yeah.

Aaron Goodman  20:52

And you talked about relationships. And one of the challenges of this illness is, is being in relation ship with with people, right, because of the exposures that we face? How have you managed connection with people?

Joanna Malaczysnki  21:12

Originally, I don't think I managed to very well, in terms of, you know, the average person on the street, I think that originally, you know, I've kind of found out that I'm reacting to chemicals and chemicals are bad. And anybody who came in my way with a, you know, with a laundry detergent, or whatever else. I lectured them, you know, and snapped at them. And was surprised that I didn't get a good response, right. So there was a process of realizing that, well, people have a worldview, and they're living their lives, you know, with things that they're comfortable with. And there are ideas and things that they don't want to let go of. And at times, yes, you can be more diplomatic. But they're with people and get a good response. But with many people, it doesn't matter what you say to them, they will still react adversely to you. 

So I think a lot of it was that sort of acceptance of those dynamics, you know, and how relationships might run. I am fortunate because I have a husband, who also never really liked fragrance, has some chemical sensitivity, and has to accommodate me to some extent, and does accommodate me. So I'm very, very grateful for that. But it's also a work in progress, right? There are times where it, it feels strenuous for him, I might feel something that he doesn't, right. So we have to work through those things. And it's changed my relationship to my father has passed away already. 

But my mother for her, she has had to accept my condition, and accepts the fact that I can't visit her, for example, she lives on the other side of the country. So I think those are, you know, those are the most most important things. But in addition to the relationship with other people, there's the relationship with myself. So everything that I'm asking other people to accept, I have to accept to so I have to accept the fact that I can't visit my best friend anymore, because it would be too much of a burden. While for a while I've spent time planning trips and delaying them to see her. And it wasn't a good thing for either one of us. Right. It created stress for me and disappointment for her. So a lot of it has been looking at my relationship with myself as well.

Aaron Goodman  23:47

If you said all this so, so well, and it really resonates and I'm I think it'll a lot of people who are listening will get it because it impacts how we are in the world and how we can connect with people. 

Aaron Goodman  23:55

Hi, just pausing briefly to say thanks for listening to the chemical sensitivity podcast. You're listening to Episode 41. It's called Silent winter toxic chemicals and chronic illness. It features a conversation with Joanna mallet Schinsky. Joanna lives with MCS and is the author of the 2021 book, silent winter, our chemical world and chronic illness. I hope we get a lot out of the conversation and this episode. Please Subscribe where you get your podcasts. 

Aaron Goodman 24:30

You write and you talked about that you drew inspiration from the book called “Silent Spring” by Rachel Carson that first was published in 1962. And I'm really glad you mentioned it, because it's a book that I've wanted to look at in this podcast. Would you be willing to talk a little bit about you know, who was Rachel Carson? What was the book about? And why did it make an impression on you? Definitely.

Joanna Malaczysnki  25:05

Definitely. So to understand Rachel Carson and “Silent Spring.,” you have to kind of understand the context of what was going on back then. So let's just assume back to the end of World War II. Because at the end of World War II, we basically had a big military, corporate industry, military industry that had been producing toxic chemicals for the war, right. So we had all these war chemicals, the war ends, and now this large industry is out of business unless they can figure out how to incorporate their product into peacetime economy. And so they did that. And the first thing that they the most sort of easiest thing, maybe for them to access was the concept of pesticides, which included insecticides, fungicides, biocides, you know, kind of everything and that, you know, the term biocide means it kills life, essentially. So anything that's the side is killing, pests, insects, whatever. And, either for, for large corporations, the best way to secure profit is to approach governments and get government contracts. 

So these corporations approach the federal government and got huge government contracts after convincing them that the best thing to do would be to spray the countryside at any and every opportunity for insects for you know, for later on, it was vegetation that we wanted to get rid of, for forest management. And so we had very, very toxic chemicals being sprayed all over the country, on roadsides and for us natural areas. And what people started noticing was that birds were dropping dead out of the sky, sometimes in hundreds in front of their front yards. I mean, people were livid. They were shocked. They were in a traumatized state. And they started writing letters to the federal government. Now, the recipient of those letters, was mostly a woman by the name of Rachel Carson, because she was the closest thing in terms of within a government agency that dealt with these types of issues. So she's starting to get to receive all these letters and, and does research into what we already knew at the time about pesticides. And where they came from. They were toxic chemicals. And so she decided to write this book as a way to get the word out to the nation, to the people to the decision makers about what was going on. And so the vast majority of the book is about this, you will be about, you know, the the animals dropping dead. The fact that we were we had tons of wildflowers going along roadsides, which we all sprayed, and destroyed and just put it in grasses, just you know, the mowing the lawn grass. And she talked about how this was impacting wildlife. But she did have a little bit of research about human health impacts. 

And so I mentioned that a little bit about those, it was already known that pesticides will can damage the liver to the point where it no longer has its own independent capacity to detoxify help in a healthy manner. And once you damage that mechanism, right, you're stuck with these chemicals, and they're causing more damage to the body. So she already had that knowledge and provided that and it was only maybe 12 pages, that chapter out of the entire book, that's probably over 100 Probably over 300 pages. But that was enough for me, I really, I knew what I had found. I knew what I was looking for, and I knew where to go.

Aaron Goodman  29:02

There was a lot of pushback after the book came out. Can you talk a little bit about where that pushback was coming from?

Joanna Malaczysnki  29:09

There was a lot of criticism from the industry, she was very much being criticized that she didn't have the credentials to talk about this. You know, it was the fact that she was a woman and she wasn't intelligent enough. Anything that they could think of was used against her even though she she had quite good credentials. And the interesting thing is that through Rachel Carson and maybe through an activist that came after her industry has now learned that it's best not to directly attack people they will indirectly do so they will do so through other means. You will definitely suffer if you if you speak out against what corporations are doing and subtle or not. So subtle ways, but they will not attack people publicly because that only draws attention to you, right? 

So if I write this book, or anybody else, you know, writes about a topic and they get a lot of publicity, people will read the book. So, now industry has learned that silence works. And that's what is used effectively with respect to chemical sensitivity, chronic fatigue, as health conditions is that there's a silence around it. And same thing for the toxic chemicals and consumer products is that there's a lot of silence about it, or there's been, you know, there's a lot of spin to make it sound like what's happening is not what's happening, but something else.

Aaron Goodman  30:39

Okay, so I'm just going to fill in a couple short bits of information. So the book eventually led to the banning of DDT, which was a harmful biocide. And there was a lot of pushback from the chemical industry. After the book was published. And Rachel Carson, she, she began her career as a marine biologist and a conservationist. And she worked as an aquatic biologist in the US Bureau of Fisheries. So that was her connection to government at that time, thank you so much for talking about the book, Silent Spring and Rachel Carson. And I encourage listeners to check it out. And it may be something that I can look back to in the podcast. I wanted to switch gears a little bit and talk a little bit about fragrance. And it's something that you write about in your book, “Silent Winter”. I know for myself, I encounter fragrance a lot as most of us do. For myself, I don't really know what is a fragrance, I understand that it's usually made up of synthetic chemicals. I know that I often react badly to fragrance but and you call fragrance a public nuisance. So can you help us understand what is fragrance?

Joanna Malaczysnki  32:05

Sure thing. So fragrance is can be a cocktail of chemicals that can be dozens or over 100 chemicals mix together to create what a product that creates both the scent, and the durability. So meaning the fragrance lasts and lasts. And any of those chemicals, and usually it's multiple chemicals and a combination are toxic. And I want to just when I say toxic, I want to just highlight what I'm talking about. Because there's sort of areas in terms of toxicity and impact of our health that are important here. And the the supplies to fragrance and really to any other toxic chemical, because they they don't impact just one system in our body, they impact a whole number of them. And the reason why they're impacting a whole number of them, in part is because they stay in our body for a long time. And because they don't belong there. And the combination of the two things creates problems. 

So one of the problems is neural toxicity. So this is this can range from we're not thinking clearly, to suddenly we're in a terrible mood, we might get angry or irate or start crying. Or we suddenly, you know, we're not walking straight, right, because our nervous system controls our mobility. And or we just suddenly lose, you have weakness in our hands on legs. So that's, that's neurotoxicity that can happen with fragrance. There's the weakened immune system. And that's everything from getting infections, viruses, bacteria, bacterial infections to mold infections are those mystery illnesses that you see and the marine life in the Pacific and Atlantic. Those infections are caused by you know, the pollution in the water, which can include the fragrance that's being dumped into the water right from the products views. But we can the immune system can also include stuff like cancer, that is, or autoimmune disease. Those are those are also conditions of a weakened immune system that's not working properly. Then there's the problem of chemical congestions. 

So with fragrance, we have those chemicals that make the chemicals lasts for long time. And those are particularly a problem with that. Where are the chemicals just sitting in our body and the it's blocking the passage of waste is by blocking the passage of nutrients. And so problems begin to arise. Then we've got hormone disruption. So we talked about, for example, insulin resistance and blood sugar issues that insulin is a hormone. We've got sex hormones, we've got hormones that regulate our thoughts. So our mood, our energy levels, fragrance is also quite known for being for disrupting our hormones, the chemicals in there, even though all the chemicals that are in there are not that well known. Then we've got arrested development. 

Traditionally, that includes birth defects, but we have a lot of, quote unquote, birth defects that are unseen. So we're talking about weaknesses, and the uterus, weaknesses in the spinal column, malformations of organs in the body, those are things we don't see. But we might find out about mid life when we start to have problems, right? There's people with chronic fatigue, for example, that end up having leaks in their spinal column. And that is essentially a birth defect that was likely caused by toxic chemical exposure of the mother, you know, while the child was in the room, for example, but those birth defects can also lead to problems such as lowered IQ or problems like autism, you know, something that we experienced and mobile that the cognitive capacity of an individual, then we've got, I think, the last category of, I would say, we don't have a lot of proof that fragrance causes this yet, but a lot of toxic chemicals also do mineralize your bones and teeth. And because you know, things like osteoporosis, because they're basically long lived in the body, and they displace minerals like calcium. So that was a very long answer. 

But I do want to highlight that you've got a whole box bass of chemicals there, that I formulated to make something smell nice and more and more these days to make that scent be stronger and lasts a very long time, that are having a vast effect on the human body. And when you have less ability to detoxify, because your body's already been injured by prior exposures. And because you have a high environmental burden, meaning your body's got hundreds of toxic chemicals in it every day, which most of us do, it becomes very difficult to deal with these chemicals, and stay healthy and not have any problems, you know, ranging from cognition to energy levels to, you know, everything else that we associate with good health. It was last year, and new law passed that requires companies that produce cleaning products, to disclose the majority of their fragrance ingredients only if those ingredients are already on toxicity lists. And only if they're larger than a certain amount. So you can now look at a company's website. And they're going to make this hard for you to find. But somewhere there's going to be on the product page, a link, if it's if they're making cleaning products, which can include personal care products, a lot of times it's considerably cleaning products. There's a link that tells you what chemicals are in there. And if you keep digging, you can find out the toxicity, the nature of the toxicity of those chemicals and what regulatory lists they're on.

Aaron Goodman  38:33

Well, that sounds huge. But I wanted to ask you, Joanna, you know, sometimes, I was just at the grocery store yesterday, and sometimes it feels like most people are not switched on to the harmful impacts of synthetic chemicals. Right, just by looking around what people are are buying, why is it that it seems that so many people are not aware of the harms of of these chemicals?

Joanna Malaczysnki  38:58

Well, let's see. I think there's if you're, if you're healthy and you're not having problems, then you're not going to be aware. If you are constantly inundating an undated with them, you're not going to be aware that that's what's affecting you even if you do have health problems, right? It's like you go anywhere and it's the same thing, you're not going to have a break enough to know that. That's the cause of your issue. And then it's very ingrained. Now culturally, to use that, to use those and I think COVID And the response to COVID in terms of the use of disinfectants, especially fragrance products to make things appear or seem clean or disinfected, has made it worse, because there's more of that stuff everywhere. Thank you,

Aaron Goodman  39:47

Joanna as someone who's done a ton of research about multiple chemical sensitivity. I wanted to ask you, what do you think about the state of research about the illness? Do you think there's enough research? Do you think more research could help sort of counter the skepticism if we can call it that, or the denialism that exists in wider society and also among medical professionals?

Joanna Malaczysnki  40:19

Well, I will say that the volume of research on toxic chemicals and their impact on health in general is, is like more than any human being could ever read. There's so much proof. There's, you know, it's just you, you look at the data, and it's just there's no way that you have any questions that there's a problem there. With chemical sensitivity, you know, there's less, maybe there's less people, there's definitely only a handful of people that really focus completely on that. But the connection is so clear. There's no question of what the problem is. I know that there's people looking for medical solutions, and they want more research into that. That's, that's fine. You know, it's granted, there's people who want more research. But from my perspective, the biggest issue is denial. The biggest issue is fear and denial. It's, you know, the refusal to acknowledge the problem, the refusal to deal with the problem, the refusal to take steps towards solving the problem. And that, unfortunately, is a result of just how our economy is set up, and the fact that there's more motivation to just eat the status quo, than to move toward positive change. Right.

Aaron Goodman  41:45

And so you mentioned that there's a lot of research showing the hazards of synthetic chemicals. I wanted to ask you, Joanna, why like, it doesn't seem to me at least, that this doesn't necessarily translate into into the real world, just for an example. And, you know, I bring up two young children, and I bring them to many extracurricular activities and even their own school. And they're inundated with highly fragrance synthetic chemicals every day. Wherever we go. Essentially, I'm so why is there research about the connection between chemicals and human health? Why is it not making its way to the masses? And the frustration that I have is that it's not difficult to choose safer products. So why is there such a disconnect, still, in your view?

Joanna Malaczysnki  42:44

You know, it really does have to do with the, the corporate profits and the motivation behind that, I think, but the person, the individuals who have the most influence to make the change, are afraid that if they discontinue what they're doing, they're going to lose money, they're going to lose their reputation, their life is going to change and adverse ways. Their company is not going to be successful, they're going to look bad. And the reality is that we need the individuals who are making decisions to really face what's going on. Face that change needs to happen, face the fact that they're the ones responsible for taking action, that yes, things will change. They may be successful, and, and make a lot of profit, they may not. However, at the end of the day, we're all not getting out of here alive. And we can't take the money that we make here with us. We can't take any of the things that we own here with us. And what our friends or the people next door think of us will not matter. And what's most important, I think, is what legacy we live in leaving this world. 

And so I would ask the people who are making decisions about which direction we take this planet, how we approach consumer products, how we approach manufacturing. And I asked them to really think about what legacy they want to leave because I don't think they're going to be remembered for how smart and clever and successful they were, they're going to be remembered, at least with the status quo of how unhelpful they were and how fear based their behavior was and how closed you know they were to the rest of humanity and, and to love really, and that's what we need. We need people to be open. We need them to be loving and caring about him. Got it if we want a better world?

Aaron Goodman  45:02

And so, so well said, and, you know, perhaps Lastly, if we think about things, as we move forward, what will it take for things to improve? What will it take for there to be more recognition? Validation of Multiple Chemical Sensitivity from government, medical professionals? And also, what will it take for there to be less chemicals that were exposed to? You mentioned the agency that people have, right the power that people have to make better decisions. So do we need to become more informed and, and just act on those decisions act on the information that's available?

Joanna Malaczysnki  45:47

I think what we most need to do is both act and accept that we'll need to make some sacrifices. And that will need to be generous, and that we'll need to put in more effort than we think it's the, you know, the other side deserves theirs, we need to be forgiving. And we need to be quite generous. If we want people to do the right thing. We need them to feel safe. We need them to feel supportive. And that's the opposite, you know, of blame and getting, you know, or having somebody else deal with a problem and pay for it. I think we all need to be quite generous and forgiving, and work together. There's no, there's no way about it. You know, we've been trying the approach of you know, as I mentioned, with the Superfund sites and the rivers outside of Portland, we've been trying to get the companies who caused the problem to pay, and they've just been spending millions of dollars on attorneys arguing about who's liable and who should pay and who shouldn't and decades have passed and the problem persists. 

So we need to stop playing that game needs to just stop that entire system, it's not working, we just need to all step up and solve the problem. And that's also individual individually in our lives, I still face moments where I find that I've been doing the conventional thing because of vanity or ego. And you know, because I have chemical sensitivity that the consequences of that are harsh for me. And so I can go that route for a few months and then face the consequences. But at some point, I have to say, Okay, I have to let go of my ego, I have to let go of my vanity and make truly the right choice. But unfortunately, there are people who will probably not not experience consequences in their lifetime, who still need to step up and say, Okay, I'm going to make the right choice anyway, even though it's not suffering now.

Aaron Goodman  47:54

Well, it's been fascinating hearing you and thank you so much for taking time. Would you like to share anything else? Joanna,

Joanna Malaczysnki  48:02

I just want to thank you, Aaron. I'm thrilled that you're doing this. I'm just thrilled that there is a community around MCS and that people can connect with each other can know that they're not alone and learn from one another. And I really appreciate what you're doing. So thank you.

Aaron Goodman  48:21

Thanks so much for saying and thank you for your book. And for all your work and for taking time. I wish you all the best. Thank you so much. 

That brings us to the end of this episode of the chemical sensitivity podcast. Thank you very much to Joanna Malaczysnki for speaking with me. We release new episodes twice a month. Please subscribe where you get your podcasts. I'm grateful for generous support for the podcast from the Maryland Brockman Hoffman Foundation, and thank you very much to many listeners who support the podcast. If you'd like to make a monthly contribution or a one-time donation, please find links on the website chemical sensitivity podcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS. Thanks so much. The podcast belongs to the community and the purpose is to advocate for all of us and your help means a lot. You can find us on social media just search for the Chemical Sensitivity Podcast, or podcasting MCS. Leave your comments about anything you hear on the podcast and please share the podcast with others. You can find the podcast on YouTube. Just go to YouTube and search for the Chemical Sensitivity Podcast and click subscribe. There you can read captions and any language you like. leave a review online where you get your podcasts. It's a great way to help others learn about the podcast. And if there's someone you'd like to hear interviewed on the podcast or a topic you'd like us to explore, just let us know. Email info@chemicalsensitivitypodcast.org. Thanks so much for listening.