Episode 37 of The Chemical Sensitivity Podcast is available now!
It’s called “Insights from a “Universal Reactor.”
It features a conversation with Daniel Waclawiw.
Daniel’s the founder of the YouTube channel, The Canary Uncaged. He makes short videos about how, at 27, he is navigating what he calls an "impossible illness."
You'll hear Daniel explore challenges he's faced finding a safe vehicle to live in, isolation, how chemicals are deemed safe, and how people with MCS can support one another.
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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 for MCS for years. MCS is also known as Environmental Illness, Chemical Intolerance, and Toxic and Induced Loss of Tolerance or TILT, and it affects millions around the world. As you know, many people with a condition are dismissed by healthcare workers, employers, friends, even family, countless people with MCS struggle to find healthy housing and get accommodation 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 who 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 to 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 podcasts available and creating greater awareness about MCS. Thanks so much podcast belongs to the community and the purpose is to advocate for all of us. Your help really means a lot.
This is Episode 37. It's called insights from a universal reactor. It features a conversation with Daniel Waclawiw. Daniel is 27 years old, originally from Maryland, on the east coast of the United States. He's the founder of the YouTube channel, the canary uncaged. I'll share a link to Daniel's YouTube channel in the show notes. Daniel makes short videos about his life as someone who's lived with severe Multiple Chemical Sensitivity for a long time. And he's lived in a vehicle for the past two years, because his sensitivities to chemicals prevent him from being indoors.
Daniel calls himself a “universal reactor” because he reacts to so many chemicals. In our conversation. Daniel talks about his YouTube channel, how he wants to create awareness about MCS and come to terms with his own experience with the illness. He talks about the challenges finding a safe vehicle after his previous one was flooded, the isolation he faces and Daniel has really thought a lot about MCS, he's really informed and he talks a lot about how chemicals are considered or deemed safe, how people with MCS can support one another and a lot more. It's one of the most enjoyable conversations I've had so far on the podcast. It's really moving to hear Daniel and how he's finding his way and navigating what he calls an impossible illness. I hope you enjoy the conversation and check out Daniels YouTube channel, The Canary Uncaged.
We release new episodes twice a month. Please subscribe where you get your podcasts. Find us on social media just search for The Chemical Sensitivity Podcast, podcastingMCS. Please 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 search for The Chemical Sensitivity Podcast. Click subscribe. And you can read captions in any language you like. leave a review on Apple podcasts a great way to help others learn about the podcast. And if someone you'd like to hear interviewed on the podcast or topic you'd like us to explore, just let us know email email@example.com Thanks so much for listening.
Aaron Goodman 03:50
Well, hey, Daniel, great to connect with you. And thanks so much for making time to chat on the podcast. Yeah,
Daniel Waclawiw 03:57
of course, I'm super grateful to be here. Have an opportunity to connect and share my story.
Aaron Goodman 04:03
So Daniel, I'd like to invite you to start with just letting listeners know a little bit about you if you're open to that, please.
Daniel Waclawiw 04:13
Well, I'm 27 years old, a student of life I guess you could call me gainfully unemployed. Just trying to you know, kind of find my way in, in this crazy world, which is kind of you know, hard enough when just kind of the times we live in but the the layer of chronic illness has really honestly changed my life. One of the biggest things I'm thinking about right now is like you know how to find the next step when there's so many obstacles with the condition and also really focusing on community and kind of sort of how we can help each other, you know, dealing with MCS and on chronic illness in general,
Aaron Goodman 05:01
do you want to take us back to when Multiple Chemical Sensitivity cropped up for you, when you first got ill? Yeah, so
Daniel Waclawiw 05:11
I am one of those people where I didn't have any one sort of moment that really like tilted me. I guess that's not super unusual, I know that there's some people that can really trace it back to one thing. But for me, you know, even going back to a young age, I remember. Like, I would get, like, kind of rashes on my legs from my pants. And, you know, my mom was just using like, so she would sew in these, like softer little patches, and it didn't really help. And looking back, it wasn't the fabric that was rough. It was literally just the kind of detergent that was kind of messing with me had a whole lot of neurological issues, diagnose ADHD, but um,
I would say, it was really around when I turned 18, or 19, having been in the foster care system, you know, they throw you on a whole bunch of meds. And I decided that that's not what I wanted for myself. And nobody was willing to have the discussion of assisting me to do that. And sort of a way where I would have any advice, and I came off from way too quickly. And that's when I really started noticing a lot of food sensitivities pop up. And over. You know, that was probably by the time I was 2021, I realized that mostly, I pretty much just was able to eat just like meat, green vegetables. But it's just been a very, very slow progression. First, it was like detergents and colognes. And then it started being like cleaning chemicals and air fresheners. And it's gotten to the point now where even the small sub nature, you know, pine, you know, fallen leaves. In the last couple years, mold has really started being a big trigger for me.
And so it's been slow, which in a way has been a blessing, because I've kind of had the opportunity to adjust and I've learned now how to really pay attention to my body. Because some things you know, it's kind of immediately you know, it's bothering you other things you realize over time, and I've become very kind of in tune. But it's gotten to the point where just I'm pretty much intolerant to just about everything they call universal reactor's. So that's a daily challenge.
Aaron Goodman 07:38
I actually hadn't heard that expression. So thank you for enlightening me. Universal reactors. When was the first time you came across that expression? Daniel?
Daniel Waclawiw 07:50
I'm not entirely sure. I think I heard it fairly recently. And I believe that, you know, one of kind of the big doctors and sort of the environmental illness community coined that term, but I just know that it really kind of applies to me and a lot of people I know.
Aaron Goodman 08:10
Really, really interesting. And how's your illness been, Multiple Chemical Sensitivity been progressive, hasn't gotten more difficult over time?
Daniel Waclawiw 08:22
It's definitely been progressive. Yeah, for a while, it just felt like there was just more things that I was reacting to, but I was kind of like keeping my head above water. But it's, it's gotten to the point where, even when I'm not having like an acute reaction, I can just really feel my nervous system. Because for me, I get largely neuropsych reactions. So I'll feel sort of very intense skin crawling in a fairly safe environment, I can be going on a hike, the smell of the leaves the trees, you know, I'll my blood pressure changes, my heart rate changes, I'll feel, you know, sinus issues and stuff. So it's, it's scary. It's been slow, but scary.
Aaron Goodman 09:19
What's it like to be in the world and react to almost everything? What What's that like for you?
Daniel Waclawiw 09:27
In a way, it's kind of just the way it is. And what I mean by that is, it's been so long since I haven't reacted to things that for example, when I I'm used to being you know, that guy when I go out to eat if I even do that anymore, you know, you know having to be very, very specific about you know, how things are prepared and the spices and asking a lot of questions. You know, I can kind of wear that as a badge of honor you know, be In bad guy, but you know, socially, there's the whole level of people just not understanding or caring, or being willing to accommodate the sort of accommodations that I need to be around somebody, whether it's some sort of personal care product fragrance, or where we're hanging out. Or even just on a level of when you're just dealing with a lot of kind of suffering on a daily basis. And that's not all of who I am. But it's a huge thing that I deal with is just the pain of this condition. Just being able to relate to people in general, who aren't chronically ill has been difficult. So on a social level, it's been difficult.
And, you know, I can walk into a 711. And literally, the only thing in the entire store that I can consume is like the Pellegrino water, you know, and honestly, it was okay, when I could still do like the hot dogs, you know, without the bun, of course, or, you know, some beef jerky, or even though it was like flavored seltzer waters, or whatever. I didn't even feel deprived, because I had like a couple of things, you know. But now, it's gotten to the point where I'm intolerant to basically anything that's been processed, or has any sort of flavor or spices added to it. And that's something that has recently really been getting to me, because it can be an actual issue of like, I'm on the road, I literally can't find anything that will make me sick, you know?
Aaron Goodman 11:41
Yeah, I want to ask you more. And I just want to say that I, I know where you're coming from, in some, in some ways, because I the universal reactor is, is probably what describes my experience, too. So I just wanted to share that I that I hear you and see you. And for listeners, you're you're currently inside a vehicle, you're talking inside a vehicle. Do you live in a vehicle? And how long have you been living in a vehicle? And when was there? Was there a time when you made a choice? You know that living indoors wasn't going to work anymore? Or when was the choice made for you? Can you take us back to that moment?
Daniel Waclawiw 12:31
Sure. So for me, it was basically the path of least resistance. I was in foster care from 15 to 21. And after that aged out, and thankfully for some time, I was able to live with the family of a close friend. And for some time, I was also a caregiver for an older lady. And so, you know, one of one of the big issues that I was dealing with was fatigued during that time, I was working, doing food deliveries and everything. And the sensitivities were progressing. During that time, I had tried to live, I found a cheap room to rent, you know, after the caregiver arrangement ended. I did get a cheap room that I rented for some time. But I found that one of the roommates in the room right next to me really liked an air freshener, I'd keep getting clips of that. And one of his ways of handling conflict would be to, you know, quote, unquote, clean the bathroom because he knew that chemicals bothered me. And ultimately, I was more or less forced out there.
I found a room to rent for a couple months in a place that really wasn't ideal for my health. And I wasn't doing too great there. And at that point, I don't do too well on the winter. So I decided to drive down to Florida and stay in my car temporarily as I was looking for a room. But finding something in my price point with the amount of you know, work that I'm able to do. And that would meet my MCS needs proved to be difficult. And so I started living in my vehicle at that point.
Aaron Goodman 14:15
How long ago was that?
Daniel Waclawiw 14:19
This was about two years. It's going to be two years. I think on Christmas actually. And in that time, you know, I've done some great travels, seeing some cool places I did Florida the first year came back to Maryland kept living in the car, keeping my head above water making enough money to sort of pay the bills but Winter came again. And I headed over to California at the beginning of last winter, hoping to kind of have a change of pace and also the cost of living is high there but the wages are higher there. So I figured I might actually be able to get ahead a little bit financially. And all this time my MCS is unfortunately progressing.
But my car was kind of good enough for me. And I was kind of getting by survival mode but getting by. And as I have shared with you, unfortunately, the first week of being in California, there's in San Diego, there's a place called Fiesta Island where a lot of people go to kind of park overnight. And that weekend, I go to sleep, and then I wake up with water up to my ankles. And at that point, I realized that, you know, the car had gotten flooded, the water had come up, probably, you know, 40 feet in the 90 minutes that I was asleep. And as I came to find out there is something called the King Tide, which happens two nights a year. And I was just in the wrong place at the wrong time.
Aaron Goodman 16:13
And so your car was damaged from the flooding, right? And did you have to get a new vehicle? What did you do?
Daniel Waclawiw 16:21
Yeah, so immediately, you know, I realized it was a problem. I mean, it was towed, it was declared a total loss. But even if it hadn't been, the entire car had been soaked. And that's just a recipe for severe mold. And, you know, immediately even just with the car getting wet, I started feeling unwell in there. Basically, it was kind of on and off working for a couple of days. And I was super grateful to land a pet-sitting gig in a house that was tolerable for me. And in that time, I was able to find a rental car from enterprise that was mostly tolerable, I caught for Admin Details, there's detergent smell and their Cologne in there, but it was something that was not making me suffer too much. And I basically, you know, waited for my insurance payout of the car, it wasn't much because I had an older vehicle and kind of just kept my my life going, you know, just working, trying to pay the bills, and just trying to try to get by, you know, way far from home. Without really a vehicle to come home.
Aaron Goodman 17:43
Daniel, you know, what kind of work do you do to get by?
Daniel Waclawiw 17:48
So, I find that Door Dash Uber Eats InstaCart sort of the these gig jobs, where I'm able to work, when I have the energy, when I want, you don't really have to schedule. That's what I've been doing. I was doing pet sitting for a while as well even had my own sort of local business when I was living in Bethesda, Maryland, and was slowly building that. But over time, you know, I found that that's more difficult with the sensitivity. So I've been mostly just doing the deliveries when I can.
Aaron Goodman 18:32
It's really hard to be in other people's homes, isn't it?
Daniel Waclawiw 18:37
It really is. And it's an awkward conversation to have, I would say when I was still a little less sensitive, it would be about a third of clients that I would have to turn down. Sometimes, you know, just in the initial conversation sometimes during the meet and greet. And I will say that, I think because of just the way that I presented it, that people did take it pretty well. And it wasn't personal when it didn't work out. But it obviously added a huge layer of difficulty. And there were times where I'd be offered, you know, somebody would request you know, week long books sitting, you know, it could have been, you know, a couple hundred dollars, But I was just at a place where the fatigue was too bad or I was just really sensitive right then and where sometimes you just don't have the mental energy to just have that conversation. So like, do you use air fresheners or detergent do you use you know.
I have to be in a certain headspace to I don't mean to sit to stand myself asking all those questions. And what I mean by that is, you know, I try to have a lot of compassion for myself and these difficulties that I'm having. But there are times where I'm just too anxious It's a humbling really a condition to have. There are times when I think I'm even in denial myself about how bad it is. And there were times where I just didn't want to deal with that. So, unfortunately, it's something I can't really do as much anymore.
Aaron Goodman 20:18
You said, You're in denial about how bad it is, for yourself. What do you mean? Daniel?
Daniel Waclawiw 20:27
It's a very powerless feeling, to basically have a condition that makes it so that there are invisible threats everywhere, be it another person and what's on them, or, you know, the chemicals or mold in a place it's powerless to know, to not know how somebody's going to sort of react to it. And I'm aware that, you know, it can come off a little crazy, or, you know, controlling when you're first meeting somebody, especially if it's, you know, if somebody already knows you a little bit, but if it's a situation, like, you know, you want to go on a date with somebody, or you're trying to, you know, do business with somebody or something and or even somebody who you're friends with, but you you know, in the past, you've kind of just gone hiking or whatever, but, you know, they're like, Hey, let's go on a trip together. You know, let's, you know, let's go in your car, or let's take my car, and it's like one of those things where you know, I've, I've really honestly realized that I'm a strong person to be dealing with all this stuff. But I think there's still you know, maybe it's a, you know, masculinity thing, men are supposed to be strong. And unfortunately, I did have a certain level of toxicity with that sort of attitude growing up. But in a way, it's almost easier to sort of almost like gaslight myself, and just be like, Man, you know, you just got to try harder. You just got to kind of get over this than to actually just accept that, like, so many places you go cause you to feel sick, and just not just like, kind of unwell, but just like awful.
Aaron Goodman 22:40
Yeah, like debilitating. Yeah. Right. Yeah. So does that mean in your in practice? Do you put yourself in situations that you know, because you, you want to push yourself that end up making you ill? Does that happen?
Daniel Waclawiw 22:57
I don't think I really do that. It's just physically and mentally too draining. And I would say that I, I'm pretty realistic about what I can handle. It's just a hard pill to swallow sometimes that that's a very small amount of things, you know? Yeah.
Aaron Goodman 23:25
I just pausing briefly to say thanks for listening to The Chemical Sensitivity Podcast, you're listening to Episode 37. It's called Insights from a Universal Reactor. It features a conversation with Daniel Waclawiw. Daniel is the founder of the YouTube channel, the Canary Uncaged, which focuses on how he's navigating what he calls an impossible illness. Hope you get a lot out of the conversation, and this episode, subscribe where you get your podcasts. If you'd like to support the podcast, please find links on the website, chemicalsensitivitypodcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS. Thank you very much. The podcast belongs to the community. And the purpose is to advocate for all of us your help really means a lot. Thanks for listening.
Aaron Goodman 24:17
Daniel, what I want to ask you as I'm hearing you is, you know, I don't talk to a lot of relatively young people who live with Multiple Chemical Sensitivity as severe as you do, or even at all, because I think the research shows that it's most often an illness that affects people later in life and particularly women. But there are young people who have it and I like you I live by have lived with severe MCS since my youth since I was very young. But I want to ask you, how has living with the condition impacted your thinking about your life? In terms of the goals you have no sort of you think of like the trajectory of your life, some of the things you want or want to do, as it changed anything for you.
Daniel Waclawiw 25:13
I would say it has. So I wouldn't say I had the the typical childhood to begin with, you know, um, you know, I know, my parents really tried their best, but you know, I think hurt people hurt people. And so, from a young age, I kind of felt it was survival mode a lot of time. And I know, I wasn't the easiest kid, either I had severe ADHD, which looking back, I think a lot of that does have to do with the toxicity. So I've always, you know, well, as a kid, you know, you don't really worry about the future. But as I was kind of getting older, I did have this idea that I definitely wanted to do something to help people. And, you know, even you know, in my later teen years, I was dealing with chronic health issues before the MCS severe ones at that. And so part of me wants to maybe even be like a doctor, you know, specifically focused, you know, on the more holistic side of things to help people with complex issues. Um, and I knew that that was probably going to be challenging, but there was a point where I still thought that maybe that's something that I could do.
But as I've been progressing with the MCS, I have found that it's just been survival mode, you know, and just today, on one of my YouTube videos, I was talking about how, at this point, if I could just be like, a cashier at like, a 711, or something, something simple to just find some sort of stability, you know, this condition is, certainly it's humbled me a lot, you know, and I would really like to just be able to do something basic, you know, I don't know that. I'd like to set up a life where I don't have to work 40 hours a week, but right now I need to, to make the money, but I just I really can't.
So it definitely has encouraged me to kind of look at the inner journey, you know, try to find meaning and all of this, trying to, you know, learn about myself and the world and sort of how I relate to it in the context of this condition, because you know, it you know, if you're, if you're looking at life as a video game, you know, I'm, I'm playing an expert mode, and I certainly didn't choose this, but just day to day basic things are very difficult. And so at this point, I am feeling pretty lost as to what the future holds. Because right now, I'm just trying to figure out you know, I've barely worked in a month because I haven't had the energy like I don't know how to at this point, I'm having a hard time even just meeting my basic needs. So it's very difficult, you know,
I'm, I was self-sufficient, but my illness has gotten worse and the financial burden of essentially with the market the way it is paying more for a used car than it would have cost new. And the lost wages while dealing with the search for the car, which I looked at 500 vehicles before realizing that I had to go way way out of my price range to get the rental car that It was in. And yeah, I feel like I'm in over my head and there's the added difficulty of the cognitive symptoms that I deal with. Those are actually the main issues I deal with their neuro psych neuro psychiatric, so I do get kind of a sensation that I'm kind of burning both my nerves and my body and my brain. skin crawling but like down to the bones like it just wanting to just crawl out of my skin and that's a huge mold, one severe irritability, memory issues, emotional dysregulation, I can be you know, more or less fine having exposure During my ability to like socialize or think clearly make good decisions, like it kind of goes out the window. And it's, it's very difficult for that reason to even figure it out, like a remote job or something.
And of course, you know, entry level positions now I want you to have five years of experience. There's also just the added logistics of when you're homeless, it's like, it's difficult to figure out like, it's, you're, you're, you're kind of in survival mode. So it's hard to get to think about applications and finding a job and who can I ask, you know, to use their address for like, the, the tax forms and all that? And do you just figure all that out? While you basically aren't even in a headspace to interview? And then go and find a place? Or do you try to find a place, but you can't find a place because you can't afford it, because you don't have a job. And so it's really given me a lot of empathy for other people who, for whatever reason, are homeless, because it's a lot easier to fall into it than to get out of it. And that's, that's been a, that's kind of one of the big things that I'm kind of thinking about these days.
Aaron Goodman 31:20
If you were to talk with someone who, let's say knows very little about MCS, what would you tell them about the condition and how it manifests for you? Would you attribute it to the toxins? You mentioned toxins that you lived with? As a child? Household Products? What do you attribute it to? And, again, how could you How do you explain this to people?
Daniel Waclawiw 31:52
Okay, so when I was a child, I was put on over 50 rounds of antibiotics. Um, I had recurrent ear and throat infections. And looking back, you know, my mother, she, I think, at least has at least eight mercury fillings. The firstborn child gets two-thirds of the mother's mercury. So I think that that was a huge disadvantage for my developing immune system, you know. That was a huge one, I think. And I don't want to I know that there's, you know, a whole controversy here. But I do believe that the amount of vaccinations that I got, in the short period of time based on my father being working at NIH, and it's a very big thing for him, to kind of, you know, be very mainstream about that kind of thing. I personally believe that that is something that has contributed to my conditions.
I also believe that my diet, you know, my parents were a little better than others, when it comes to kind of healthy eating, but still a lot of gluten and dairy and stuff. I stopped growing from nine to 11. And when I stopped eating gluten, that I was diagnosed with celiac disease, and that went away. I started growing again, but it's one of those things that, you know, there's people that say that the, you know, way that we produce things in this country. Sometimes, you know, even the pesticides and things that things are, that our crops are grown with, that it can kind of have a synergistic effect. So the gluten in and of itself may not be terrible. But when combined with certain pesticides, it has been shown that it can cause dysfunction in the immune system and in the gut. And so it is one of those things where I really think it's multi factorial. You know, I can't really pin it down to one thing, I just do know that we live in a world that has becoming increasingly more toxic. And I heard this somewhere, that we're exposed to more manmade chemicals every 15 minutes that our great grandparents were in their entire lifetime.
Aaron Goodman 34:34
Yep. Yeah, no, most of them have been made since World War Two. And what do you think about that?
Daniel Waclawiw 34:43
I think that people largely put profits and get profits in front of people and that I think people sometimes can get kind of swept up in the whole idea of, you know, progress and can kind of bristle you know, oh, you're chemo phobic, you know, water is a chemical salts a chemical, there's some wonderful chemicals, you know, antibiotics can save lives. You know, I believe that vaccines have saved many lives, you know, I believe that, you know, there are certain uses for pesticides, you know, it's but it's one of those things where I think that people get very polarized, and that when you kind of try to bring up that the way that the world is today and the things that we're doing could be contributing, hurting us, you know,
I think that people are very quick to kind of jump that, like, you know, you're in anti science, you know, but the fact is, a lot of these chemicals, you know, when you look at a lot of the animal studies that have been done, the, I think that there are some very well constructed studies that go multiple generations of these animals, and sometimes the first generation, second generation Third generation The animals are fine, but when you go farther, there starts being issues with their immune system cancer, you know, fertility issues. So I really just think that we're a little short sighted, to be able to definitively say that, like, you know, we did a study, you know, for three months, this chemical appears to be safe. I think that I just wish that people were more willing to have nuanced discussions about these things. Because, you know, there are many useful chemicals. And everything is a chemical that is true, but it's all about, are we really using them in a safe and balanced way that balances, you know, progress with, you know, the health of people and the planet?
Aaron Goodman 37:13
And when you think of science, when it comes to Multiple Chemical Sensitivity, you know, because there isn't a lot of it. There's some but but not a lot. Do you feel that it kind of leads you and others to, to do this, that, you know, like, I don't know about you, but I'm not trained as a scientist, but we have to sort of navigate this and try and figure it out. And it's really complicated. Right, so we're, we're using our best guesses. We're making best guesses. But is it your hope that there'll be more research, so it could kind of take some of the pressure off of us to do this work?
Daniel Waclawiw 37:54
Are you talking about on MCS, particularly? Yeah, just on?
Aaron Goodman 38:01
Yeah. I mean, you, you, you talk about the research about the harms of chemicals. So on that front, too, but also about research about this illness? In particular, there isn't a lot out there. There's some but not very much. Do you wish there were more?
Daniel Waclawiw 38:20
I'm going to argue that there is a lot of research that shows that these chemicals are dangerous chemicals that we continue to use, there really isn't a whole lot of sense. In the way I think that regulations are set for these things. I mean, it basically it kind of It feels to me sometimes, like if it doesn't make you drop dead, then, you know, there can be like 50 independent scientists and even several universities that have done multiple studies on something. But it's one of those things where it's like, well, you know, we're looking for a certain standard of evidence, but the standard of evidence they're looking for are multimillion dollar studies, that really the only people who have that type of money to fund those things are like the big corporations like chemical companies.
And interestingly enough, a lot of times, you know, they find that their, their their products are safe. And so I think that we really need to have a discussion about what we consider a standard of evidence. And if there really has to be this certain, you know, standard evidence, if that's some sort of objective thing, then these things absolutely need to be funded more, because more and more people are suffering with these types of issues.
Um, personally, I think Multiple Chemical Sensitivity does involve mast cells, mast cell activation, there's multiple studies that have shown that that is something that's involved. I guess the one silver lining of COVID is that there are people dealing with these long COVID symptoms that are causing some people to have Multiple Chemical Sensitivity. Maybe not necessarily to the extent that severe people have it. But there does seem to be more validation coming out about this stuff. And so I am hopeful that it'll at least be more accepted. But I do hope that the, the studies focus on the root cause rather than like, Oh, this is dysfunctional in the body, so let's, you know, find this medication to kind of like, suppress it, I really think that it's important to attack things from all angles, including like, hey, what can we do to sort of help, maybe prevent these things in the first place?
Aaron Goodman 41:02
Yeah, Daniel, thank you so much. For all your thoughts on this, I wanted to just loop back and ask you how you deal with the isolation. And do you find any comfort connecting with others who have MCS, either in person or online? And then I really want to talk with you about your YouTube project.
Daniel Waclawiw 41:27
Yeah, honestly, I would say a lot of my closest connections these days are people with MCS. Um, because you know, as humans, we need our tribe we need people we can relate to. And I think that, you know, I've reached a certain level of chronic illness where it is difficult to relate to people who aren't dealing with it. And there's just, it feels important for me to be kind of, like, seen and heard and to feel safe. And it's so hard when you are constantly on alert, trying to avoid reaction. So the interesting thing is, you know, you can, yes, we can connect over the illness, but then we can also just be ourselves the parts that aren't our illness.
Because, you know, we will be like, Hey, your soap bothers me. Okay, hey, yeah, could you take that hoodie off? Sure. And then we're hanging out, and then we can be safe, you know, both physically and also just mentally, emotionally, knowing that this is a person I can be safe with. This is a person that, you know, I went out to eat with a with a very close friend of mine the other day, we literally move tables three times. Eventually, we stopped even asking, we just, you know, we're hopping, you know, to different tables in the house, because people were wearing perfume in the restaurant. And that's one of those things that if I were that would have been incredibly awkward and possibly, you know, make somebody questioned whether they want to, you know, if it's worth the hassle of being my friend if they didn't understand it, so it's a huge blessing. Really?
Aaron Goodman 43:05
Yeah, we get each other. Absolutely. So please talk with me about the uncaged Canary. What is the project and when did you start it? And what is the goal Daniel?
Daniel Waclawiw 43:19
Yeah, so my YouTube channel is called the Canaries Uncaged. And I decided to start it in the middle of my car search. Um, you know, it's one thing to say, you know, I looked at 500 vehicles, that's not an exaggeration, I went to dozens of dealerships in multiple cities, try to find a car that didn't have mold, which is even harder than it is to find a car that doesn't have detailing chemicals or air freshener or lingering like perfume or cologne, or just the smell of the car itself. And I would like to note, it's not just the smell, you know, sometimes there is no smell, you know, I'm reacting to the chemical smell is your first indicator of it.
And I really realized that I had had a safe car before. And I hadn't realized how bad my illness had progressed until I had to look for another one. It felt like something I could do a way to just a tiny part I could play in raising more awareness about this condition. And something to focus on that wasn't just survival mode. You know, I really wanted something that I could do that could even if it's just a small difference, you know, let people know they're not alone. And it also allowed me to find some community as well. You know, I have a couple of people who really seem to value the channel and we communicate sometimes and it's been a way to connect with people.
And another thing, I'm not sure this is something that everybody with this illness deals with, and something that everybody necessarily can relate to, but I I don't want to have this condition, I know I'm, I'm positive that nobody else wants it. But it's one of those things where sometimes I have trouble accepting it, you know, I don't want to be that guy. You know, I don't want to have this. As much as some people might accuse MCS of just wanting attention, it's the last thing I want, I want to just be able to just, you know, hang out a little bit, have a little fun. And then just, for the most part, just, you know, my, my own business and everything. And keep to myself, I'm definitely an introvert.
But I am angry about this. And I have a hard time accepting that this is my life, you know, and it's vulnerable talking about this, you know, because I want to come off, like, I'm strong, you know, but I try to make my channel as real as possible. You know, I'm scared. I'm angry. I don't want this, but this is what I am dealing with right now. So in a way, I think it's been a way for me to explore my emotions around it and to accept it and realize that I'm not alone. And that maybe this isn't the way what am I like to go, but I can to play a small part in helping people who are dealing with the same thing. And at the same time, kind of help myself come to terms with it.
Aaron Goodman 46:57
Yeah,and when you say, come to terms with it.
Daniel Waclawiw 47:00
I know, for me, it's been a progressive condition. For me, it's been getting worse. And it's getting to the point where there really is no escape, you know, there's days where I'll just react to the vehicle I'm in because it's actually got contaminated and it's not really a safe place for me right now. So to not have a safe home, that's a very difficult thing. It's, I use the phrase of this is an impossible illness a lot. Because it, it makes like, you know, having a home having, you know, being able to eat, and technically, you know, you could say that my need for a home is met because I have like shelter at the end of the day, but it's not safe.
And I I know there are people that have found a level of healing from MCS that that really requires avoidance of these toxins to allow your body to heal and slowly detoxify. And I know some people think the whole idea of you know, the body detoxifies itself, you know, you don't need to detox or whatever. Ultimately, I am not huge on like forced detoxes. But as far as the logic that goes, I will say that the body does detoxify itself. But if the level of toxins coming in is faster than what it can process, then it will start building up in your system. And then you do need to have detoxing in mind, even if that just means getting to a place where you're away from the toxins to allow yourself to heal. So.
Aaron Goodman 48:42
Yeah, Daniel, one of the questions I have about your project the Canaries Uncaged is are you hoping to reach people who are not familiar with Multiple Chemical Sensitivity?
Daniel Waclawiw 48:55
It’s one of those things that yeah, it is this is a niche topic to have as a content creator. And a lot of people have people in their lives be it friends or former friends you know, or or family really don't take them seriously gaslighting can be a serious issue. Sometimes it's there's already a messed up family dynamic. Sometimes it's I think it's threatening or just difficult for a person to really wrap their head around invisible threats being dangerous. You know? My goal is to kind of just humanize the condition to show myself as like a regular person. I'm trying to do some just regular just travel channel, you know, aspects to some of my videos, and religious show myself as a whole person, not just a stereotype of like, oh, this person is like scared of chemicals smells because it's so much more than that. I'm so much more than
Aaron Goodman 49:59
that. That brings us to the end of this episode of The Chemical Sensitivity Podcast. Thanks so much to Daniel Waclawiw for speaking with me. We release new episodes twice a month. Please subscribe wherever you get your podcasts. The podcast is produced by me with assistance from Kasey Walstra. really grateful to 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 helps us continue making the podcast available and creating greater awareness but MCS thanks so much podcast belongs to the community. And the purpose is to advocate for all of us and your help means a lot.
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