Episode 34 of The Chemical Sensitivity Podcast is available now!
It’s called “The Sensitives.” Exploring a Film About MCS.
You'll hear a conversation about the 2017 documentary “The Sensitives.” It’s a film about people who live with severe MCS.
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“The Sensitives” – full film on YouTube
Check out The Uncaged Canary — Daniel Waclawi's YouTube channel about his life with MCS and living in a vehicle
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Aaron Goodman 00:12
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 Communications 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. As you know, many people with the condition are dismissed by the 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 podcast available and creating greater awareness about MCS. Thank you so much. This podcast belongs to the community, and the purpose is to advocate for all of us, and your help really means a lot.
This is Episode 34. It's called “The Sensitives: Exploring a film about MCS.” And we're doing something exciting this time we're featuring a conversation I had with three people who live with MCS. We all watched the documentary called “The Sensitives” which came out in 2017 and is directed by Drew Xanthopoulos.
The film explores how three people with severe MCS deal with a condition, how they attempt to continue to contribute to family life, create and find safe housing, and navigate the challenges of this really difficult illness. The film was shot in the US and one of the women featured in the film, who has MCS is Susan Molloy, who lives in Snowflake, Arizona, and you can hear me in conversation with Suzy and fellow Snowflake residents Scott Killingsworth in Episode 20 of this podcast if you're interested. But the sensitive documentary also highlights how these three individuals’ family members who are in the film, including the partners and children, grapple with how their loved ones are impacted by MCS, and their own challenges trying to provide support and care, which can be really complicated.
“The Sensitives” isn't the only film out there about MCS but in my view, it's on the whole quite, pardon the word, sensitive and realistic and its portrayal. And that's why I reached out to three people who live with MCS and invited them to watch it and share their views with me about the film. So you're going to hear our discussion. I'm speaking with Tracy Sue, Daniel Rico, and Melissa Truesdale. Tracy lives in Ottawa, Ontario, Canada. Melissa Truesdale lives in North Carolina, and Daniel is from Maryland. I invite you to watch the film. I'll share a link in the show notes. It's free to watch on YouTube.
You're welcome to share any thoughts you have about the documentary or anything you hear in our conversation or about the film on the podcast social media posts. And thanks for listening. I hope you get a lot out of the conversation, and this episode. We release new episodes twice a month. Please subscribe wherever you get your podcasts. 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. Find the podcast on YouTube, just go to YouTube search for The Chemical Sensitivity podcast and click subscribe. There on YouTube you can read captions in any language you like. Leave a review on Apple podcasts. It's a great way to help others learn about the podcast. And if there's someone you like to hear interviewed on the podcast or a topic you'd like us to explore, just let us know email firstname.lastname@example.org Thanks for listening.
Aaron Goodman 04:50
So welcome, and thanks so much for coming together. This is our first film panel with people with MCS and it's super exciting to come together and I'm really grateful Well for you taking time for taking time to do this. So would you like to just introduce yourselves for the listeners briefly? Tracy, would you like to start us off, please?
Tracy Cu 05:09
Hi. Yes. My name is Tracy. I live in Ottawa, Canada. It's in Ontario. I've had Multiple Chemical Sensitivity I was in it was due to exposure. And that happened in 2017. And it has been quite a ride life altering for sure.
Aaron Goodman 05:32
Thank you. Melissa, would you like to say something about yourself.
Melissa Truesdale 05:36
So I am a North Carolinian born and raised in the South. I've traveled some bit before all of this hit pretty hard. I live at the foothills of the Blue Ridge Mountains. And when I need to escape, I go up to the mountains and in their air. I think I've been sensitive all of my life. And I believe there's a genetic part of it for me, because my father was also sensitive. We didn't have the tools that we have now or the knowledge. But both my mother got migraines, and my father got histamines that would just knock him out for a week and he'd lose pounds and pounds and pounds. And for me, it was handleable until a brain injury hit by a drunk driver hit me and then all my neurological system went down and it's just harder to cope. Also the resources, it takes a lot of resources to have special needs. So I'm I'm 30 years out of the brain injury, which is a part of my life, and I am progressing further. I'm one of the lucky ones that are upbeat and able to survive at the moment. So I'm excited to be here to help out.
Aaron Goodman 06:40
Thank you so much, Melissa. Daniel?
Daniel Waclawiw 06:44
Hey, yeah, I'm Daniel, I'm 27 years old, based out of Maryland, but I'm in Arizona at the moment. I'm actually one of the MCSers that's living out of their vehicle due to the circumstances caused by this condition. For me a big symptom is fatigue. And so to be able to pay all the bills and everything, this is just an it's also my bubble, you know, I can kind of stay safe. And here I am really grateful to be here. I've been having MCF symptoms my whole life, looking back, although it was about when I was 18, when I started when it started getting really bad. And so I'm grateful to be here to share my story, especially when it comes to the mental symptoms, I kind of want to start a conversation about them, and destigmatize them.
Aaron Goodman 07:31
That's amazing. And Daniel I will link to your YouTube channel where you're creating videos related to your experience in life with MCS, and Melissa will share information about your business. And Tracy, if there's any links you'd like us to share, definitely do that. I want to jump into talking about the film, The Sensitives that we've all watched individually. And we're getting together today to unpack this film. And we're going to have more discussions with other key areas going forward about other films and books focused on MCS. And the reason we're doing it is because people with MCS can offer a lot of insights that the ordinary book film reviewer just can't have because they don't have that lived experience.
So maybe I could invite you to start us off with Daniel, what were your overall impressions of the film? And then we'll we'll go around and hear from everyone, your overall impressions of the film, The Sensitives, positive, negative, and how did it make you feel perhaps as someone with MCS?
Daniel Waclawiw 08:43
Well, first of all, I guess I like to live in gratitude when I see things that are representing us. And so I do think that it starts a conversation. You know, overall, I would say my views are fairly positive. Um, I do wish there would have been a little more discussion about the actual science behind MCS, because in the last 10 years, there's been hundreds, if not thousands of studies about this. Um, I am grateful, though, that at the end, it sort of has the man who's suffering, reading about electro-hypersensitivity, which often is associated with MCS reading from a study that shows that there is a biological basis for this from a very reputable Institute. And I think that, you know, the lead up is like, are these people crazy? You know, and I think it kind of just paints the picture, let's you decide. And at the end, it's like, maybe there's some something to actually back this up. So I think there have been much worse representations. I'll put it at that way.
Aaron Goodman 09:54
Yeah, thank you. And that's something that I noticed too. They really don't go into the weeds around the science of MCS. And as a filmmaker myself, I can kind of understand why because it's very complicated, but also just leaving it using words like contested or unexplained, I'd have to look back, it does perhaps, open the opportunity for people to second guess. Right? And unfortunately, in the comments, at least on YouTube, predictably, there are a lot of negative comments. So really great point, Daniel, thanks for starting off this discussion. Melissa, would you like to share any thoughts, overall impressions?
Melissa Truesdale 10:35
I'm, I'm going to piggyback on what you guys are saying because it's so important. You know, one of the hardest things with a, what they call an invisible disability is the well, you know, I'm not wearing fragrance I can't be smelling and even the person with sensitivities, was told by another person with sensitivities, you have fragrance on you, or you have an issue that's dealing, and this is part of the difficulty is these chemicals are so layered. And there's so much that is in the environment. And it's hard to it's not just saying you can't be away from this one thing, it's an entire soup of chemicals. And so to address that, it was just barely touched on and there's this this idea of am I crazy, am I not? And nobody's recognizing it, can't a doctor just acknowledge can't a professional acknowledge it, that that was brought out in the movie also.
I think that was important for people to hear how challenging that is, even for one person who's suffering the same disability as the other. And the one person saying I think she's crazy. I mean, this idea of, we're all Looney Tunes, which we're not the science is out there we are in absolute biological form, having a biological experience, reacting to something that is not compatible with life. I mean, my allergist actually said to me, Melissa, you can't be allergic to these things. Because you can't be allergic to poisons, you're just sensitive to them. You know, and there's this entire conversation, but the whole attitude of how to discuss this. So glad we're opening up the gates, and the documentary does this.
And it delved into a lot of things, I would love to have had it go more in-depth in the process of how to be grateful. Because at the very end, it made me so happy. And I'm gonna let the cat out of the bag for the people who haven't seen it. But if you get tired of the music or the sadness throughout, jump to the end, please. Because you need to see the ending. And the ending is, you know, I've seen people survive this. I've seen people thrive through this a little bit. And what's the common denominator for those? They have community, they have support, they have hope. And they believe in themselves.
I mean, I'm putting words into the filmmaker’s situation, but that you watch the woman who's at she took the bravery to go out and community get on a bus, you could barely breathe. I know what that felt like watching it. I don't know how somebody who's not sensitive. When she covers her mouth with something if they're going, Oh, she's you know, I don't know how they feel. But for me, it's like, oh, my gosh, I can barely breathe thinking about that bus. And she's in a group of people. And she's trying to stand up for this issue. And the person in front says, well, you know, I know her. But he doesn't literally say, let's support this. And she ends up in tears going well, that's a one. It's not enough. And that's what we're all bumping into. This is a good start.
I commend everyone for starting it. I would love for it to be more exciting for people to watch, and more inviting, because it is we are still at the very sad part. We're losing people through suicide in this. I know friends, I've just lost because they've given up hope. And so, this documentary actually leans in towards that sadness. And at the same time, we all come from this grateful standpoint of hey, I'm alive. We've gotten this far. How many tools can we put in the toolbox to help us out if we need to live in live in our car? Well, thank God it's a bubble. And it's my bubble. You know, Daniel just said that it's a bubble right. How grateful can we be for an existing bubble instead of being like, hit with everything so that the film goes in all of this? And it's long, it's in-depth, it touches base with several things. And I'm hoping that for the person who doesn't have this difficulty or, you know, the touch a computer or talk on a phone and your hands are hot in your system, the emotionality of that it's so hard to keep emotions steady.
And just in all fairness, I'll tell your audience, I've had an exposure right before this. So I'm not as stable in my conversation, my speech pattern. I'm kind of dealing with a mold exposure at this moment. And so my emotions are kind of flaring up. And so instead of being like a stable person who can talk very calmly on camera and help you guys out, I'm kind of like, well, here we are. This is what it is that the urgency comes out because the fight or flight, the fight or flight kicks in.
Aaron Goodman 15:42
No, I hear you, I hear you. And you were referring to in the film, Susan Molloy, who is a long-term, longtime activist for people with MCS lives in Snowflake and took a trip to Washington, DC, and expose to was exposed to a lot of chemicals and made her very along the way. So thank you so much for your insights. Tracy, what are your oversight over? Would you like to share your overall impressions?
Tracy Cu 16:07
Sure, sure. Thank you. It was a very extreme view, like they're looking at the most extreme people with the serious symptoms that really forced them to isolate, and they're no longer part of a community, they don't have the same access to supports. And I think the one thing that touched me there were times when the mother dies, when Karen the Ackers gran, the boys, their grandmother and their mom dies as she was the main support. And what do they do? And with Susie as well, at the very beginning, she takes a phone call with a woman that's looking for a miracle for housing. It's, that's our when I think about that, it's like it hits home one of the key points and the extremes that these people that we all go to, to find our bubble, be in a car or a van or a home. And just to keep it safe. They said that Taryn hadn't let anybody into their home, they actually picked up, built this home in Arizona, and no one has entered it because of just the security measures that they need to take.
And I found it a bit frightening, honestly, because I haven't had Multiple Chemical Sensitivity for a long, long time. And because I understand that, as you expose more and more the sensitization occurs, and it can become more severe. So it causes me to be quite worried honestly. And for myself, and because I feel like I am so misunderstood. And I activate hard like I, I do my best to educate people and do advocacy, wherever I can. And even my own family, I hit barriers regularly, and people get tired of hearing about it. So I find that as much as I want to feel grateful that I'm alive. On the other hand, I've been served an N12 eviction notice in April, and I don't know where I'm going to end up. So it becomes very, very real, very, very fast.
And in Ontario, we've already had one woman access MAID medically assisted death because she could not find safe housing. And for me to actually have to think about being grateful for that. It's not a great option, even though we're supposed to have this attitude of gratitude. It really becomes quite fearful. And I see that in, in this documentary.
Melissa Truesdale 19:14
Tracy, I commend you for bringing this up so much. And I'm the first to admit that my emotions go crazy with this. And and it's very difficult when I had this exposure right before this. I've got someone in the house helping me. And I literally said to her now realize my emotions are crazy. And I'm anxious and I'm doing this and it has to do with the mold. When I calm down, please don't let me cause any damage at this moment. Please don't take anything personally. If you're having trouble connecting with the human race, it's hard to stay in the race. And it's just an authentic fact.
Aaron Goodman 20:01
Yeah, thank you. You talked about the extremes, you know, the people in the film have to move to isolated places, they can't have people in their spaces. And I understand that for me, too, that does create a sense of fear or anxiety about what the future could potentially look like. Because it, we know that it is a progressive illness in most cases, right? It can be, it can be anyway, if we just look at a different angle, the people who have MCS in the film need to ask for things. You know, for example, if I think of one of the men in the film, one of the central people in the film who has a wife and an adult daughter, you know, he has to ask them to not use the lights in their home, to not use the electricity to not use electronic devices and, and having to ask people is something that's kind of particular about this illness. And it's never easy to ask people. We see in the film that can be challenging for the people who are well, we'll talk about the caregivers in a moment. But what about this issue of asking, did you identify with that? Or what did you see in the film about having to ask for people ask people to do things? Who would like jump in here? Daniel.
Daniel Waclawiw 21:32
Yes. So as far as that that's definitely something I could identify with. And I tried my best to kind of just pull back and watch it from like an objective viewpoint of somebody who's just like watching this for the first time. And it's definitely one of those things where, you know, you've been brought a little bit of a as somebody with MCS, I can understand where these requests are coming from. And it's one of those things, though, that sometimes I even felt a little bit annoyed myself. And it's one of those things where I think that communication is so important when we are asking people and bringing these things up.
Like you know, I remember a date that I went on not too long ago. And it's one of those things like, making plans is like, you know, oh, let's just go here. And I'm like, I really don't think that we can. And so it was one of those things. I was like, Okay, well, we can try it is like, Yeah, let's try it, you know, and then like, we were going to, I was like we should ride separately. And it's one of those things where I didn't want to ask, it's like, you don't want to interrogate somebody, because then they're gonna be like, you know, this person's bonkers. But as it turns out, they had a air freshener in their vehicle, they're like, Oh, don't worry, it's spent, and they just threw it in the back. And I'm like, I'm reacting to what my nerves are burning. And it's one of those things where I either kind of suffer through it a little bit, or just say, like, I need to go separately, it just kind of gets weird. It's difficult.
And I don't know, MCS is just I think people love to hate it. It's one of the most dislikable conditions unfortunately, just given the fact that we need to, you know, people's hygiene products, they consider that intimate, you know, when I when I was asking somebody about what products, the user, like, I stay clean, I shower, and I'm like, That's not at all what I'm saying to you, you know, but it is one of those things, that it's a constant learning process of how to navigate that.
And last thing I want to say about this is it's one of those things where if some random person that I knew on the street started asking me all these questions that would be difficult for me to handle if I knew them a little more, if I knew that, you know, for lack of a better term, that they're just like a normal person going through a hard time. You know, it'd be easier, but sometimes, you know, if somebody wears like super strong cologne, it's like you like this person, but you just isolate yourself and not don't even try with the connection. Because, you know, you'd have to, you want to get to a point where you feel comfortable sharing it, but to get there you have to suffer. And you might have long term kind of consequences from that. So it's tough.
Aaron Goodman 24:27
I think it is tough asking people. Melissa I see wanted to chime in and then Tracy, please.
Melissa Truesdale 24:34
I mean, how many illnesses, literally, how many illnesses out there or how many life experiences do you have to ask for permission to have clean air? I need to be able to breathe in order to live. The smell that is happening is not because I don't like the smell. It's the interaction of the chemicals with me. So I'm not telling You you stink. But I'm telling you you stink, you know, and how many of this this asking for permission to be just have the freedom to breathe, to be able to breathe the air and to be able to it's not like, I need permission to sit down, I need a chair, please get me a chair is can you give me space so I can breathe? Can you not wear that jacket? Can you please not sit in a car with a cigarette smoke, and by all means, if you have an air freshener in your car, I'll meet you later, maybe, because that doesn't go away for months. I mean, it's amazing.
There’s this part in the film, where the woman was literally going through the dance of its if this person comes into her house with the boom, and the the camera and all that. And she says so there's something on you. And then she's pausing and I can see her body react, because I know what it feels like myself. And I've done this dance many times in my house asking for help or inviting. I haven't gotten to the point where you just can't come in at all, because I really need the physical help at the past and she goes, do you mind if I get closer and smell parts of you? I mean.
Aaron Goodman 26:07
Yeah. We’re talking about Susan Molloy, Susan Molloy was asking a journalist who came into her house.
Melissa Truesdale 26:12
So when Susan goes up, it has to sniff this shoulder. Realize how intimate that is for both people. And on my aspect, Susan is putting herself at risk to breathe more of it and just to find the cause. So the person could put a jacket on. How many times have we all gone through that if you've experienced that you may or may not have but you have to become the detective, the tactician, the politician to to ease their feelings. And then you get to be the the priest who takes their confession that they did wear it even though they said they didn't. And suddenly you're not the one who's at risk. They're the ones that risk and it's a very complicated thing asking is hard. Yeah. Necessary.
Aaron Goodman 26:59
Yeah, that's really amazing. Really well said. In my view, you know, the way Susan asked was different than the way this the man, the male character, the central man in the film asks, you know, I felt I noticed that Susan asks, honestly, you know, without holding anything back, but in a calm, mind voice and maybe with a smile on her face, I'm not sure. Whereas the man when he asks even people in his life, it's very direct, and there's sort of a coldness to it.
And that also has an effect and it made me reflect on the way I ask too, and yeah, it was a lot of there's, there's a lot of learning there for me too, because I put myself in the position of people in my life, and it can sort of feel like you're being grilled. And nobody wants to be grilled, where that's never our intention. And when we're reacting, you know, it feels urgent, and we just need to figure it out. Are you wearing this did you take and yeah, so I just, you know, kudos to the people in my life who are patient enough to not take it personally. Tracy?
Tracy Cu 28:20
Yes, I saw I noticed that as well. Susie, Susie, really exposed herself, like literally to, to advocate and to go out there like she put herself at risk because she feels the need to do so. And I really respect her for that. And I think many of us I can't speak for everybody, but I tend not to I live a pretty reclusive life because of that. I initially when I had my injury, I was more vocal. But if I wanted to go out and have I made it I make an effort to go out to outdoors for one thing, I don't go into enclosed spaces. So outdoors is the place to be so if I want to have some kind of social interaction, that's where I go. And I noticed with Joe the male character that was very, very sensitive, like he literally had to be in an enclosed room that had nothing in it like it was really hard to watch.
Aaron Goodman 29:41
And tinfoil on the walls, yes.
Tracy Cu 29:43
And Joe's wife, Laney, the amount of tolerance and giving and their daughter as well, just to support him and he even was appreciative of their support, but yet they still didn't feel that he truly understood how much support they were giving him. It was a really incredible communication navigation between them. I tried to find that balance and, and it was almost like we need therapists or like a third party communicator. She’d say, Well, I think that they mean this or I think that they will, because it becomes a dance of communication. And it is a tremendous effort to approach asking someone if they're wearing this or if they're wearing that, or could we be here instead of there, or the way the winds blowing? It becomes a lot.
Aaron Goodman 30:53
Hi, just pausing to thank you for listening to The Chemical Sensitivity Podcast, you're listening to Episode 34. It's called “The Sensitives: Exploring a film about MCS.” We're featuring a conversation I have with three people who live with MCS, about the 2017 documentary, The Sensitives. It's a film about folks who live with severe MCS. Thanks so much for listening. I hope you get a lot out of the conversation in this episode. Please Subscribe wherever 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. Thanks so much podcast belongs to the community. The purpose is to advocate for all of us. And your help really means a lot.
Aaron Goodman 31:50
Are there any moments in the film like particular moments that stand out to you that made a lasting impression for you? Not to put you on the spot, I know that question might come like completely out of left field. Does anything come to mind? Or I can ask you a different question, if you’d like.
Melissa Truesdale 32:12
The moment where the person said you know it. It doesn't. The people that she knows that have done fairly decently may not have the most perfect household that there when she said, the most perfect household, the most absolute perfect setting, and they're not getting better. That rang true with me, and also just made my heart bleed, because I know we're all trying so hard. But then she said well, and then there's the people who have the support and community. I keep going back to that community and what you're doing Aaron to bring community together. This is this is really the crux of wellness is to be in it together.
Aaron Goodman 32:59
Right. So the point that the person in the film was making is that, you know, we may still encounter some exposures. But the most important thing is having people who believe us, value us, that we feel cared for and valued. Is that is the most important thing? And is that true for you and your case?
Melissa Truesdale 33:25
Oh, it's absolutely true for me that I can be alone. I love to be with people. And I asked my sister who has supported me and learned how to support because there's been all these educational moments in my years of family. And I said to my sister, Nan, how can I help other people get support from their family? How can we educate the families? And she literally said to me, Melissa, they have to care first. They have to want to do this. This is work.
Aaron Goodman 33:59
Yeah, I want to ask you more all three of you about the caregiving side of things and as it's represented in the film, as well. But Tracy, are there any moment? Is there a moment or moments that stand up for you in the film that you'll remember going forward?
Tracy Cu 34:15
I think mostly identified with Suzy. Susan Molloy, because she really she's independent. She had a life before, she traveled, she was started a career, and then Multiple Chemical Sensitivity, changed everything and she's lives independently Well, she has her lovely dog, and she helps others in her community. She talks a lot about taking care of the community and the people that are in her people who she calls her people are the people that have Multiple Chemical Sensitivity they've become her family and her community and how she works to support that I think is admirable.
Aaron Goodman 35:03
Yeah, thank you, and you're doing some activism in your own life. You know, you look, do you want to talk a little bit about that? And should you like I see Susan Molloy as really, you know, there's so little known about Susan's work. But you know, she, Susan's even been on the podcast, and I didn't even know all that Susan has done but activism advocacy, your own life, what you think?
Tracy Cu 35:31
I work closely with the Quebec Environmental Health Association and doing whatever I can I've helped organize with the Women's College Hospital in Toronto, they're doing research. So I collected people across Canada, just on the boards on Facebook, closed groups to collect them and bring them together, just so that they can, we can organize in such a way to create the documentation and the research needed to support changes in policy for government because the government is being influenced by lobbyists, chemical lobbyists, we talk about ourselves, but we're these chemical companies that are producing all of these chemicals. And because it's on the shelves, on the grocery shelves, people think it's safe. And it's not. Yeah. And we are the Canaries we literally are the Canaries that need to speak up to push for change. And Susie, Susie, Susan is doing that.
Aaron Goodman 36:34
Yeah. And Susan has been doing it for a long time. And you've been you're doing it too, and a lot of us are doing it too.
Tracy Cu 36:39
And yes, this podcast, thank you for very much for doing your part.
Aaron Goodman 36:44
Well, I thank you so much. You're so kind. It's a labor of love. Daniel, any moments that stand up for you from the from the film?
Daniel Waclawiw 36:55
Yeah, well, for me was seeing how Joe really started doing better. After that. It was difficult, and it was tense, but there was a heart to heart where I think it really came through to him that he was needed, that they needed him, that he mattered to them. And that, you know, he was obviously suffering a lot. And I'm certainly not going to judge how he handled it and how he presented himself. I don't know what he been through. I don't know exactly how he was feeling. Although I know this is very difficult disease. But that seemed to really flip something. And it gave him partial improvement in his Chemical Sensitivity symptoms.
For some MCSers, this may be a little controversial, but I think it's super important that it just shows how important that community is. And that that was a very cathartic moment. You know, at one point, she basically he basically just said, like, wow, I've been like super selfish. And a little later, I feel like I think as they were crying and hugging, and there was just like a certain catharsis, almost like a processing of some sort of trauma he sped through.
I think emotional trauma plays a role in MCS, just like, you know, there's something called an ace in medicine and adverse childhood event, diabetes, asthma, cancer, all these things, childhood trauma plays a role in these are also all diseases with a physical basis. But trauma can contribute to it. And I don't think MCS is any different. And so I think for the sake of ourselves, and for healing, that we have to recognize that there is an emotional component to it, that trauma, working through that therapy, close relationships, finding, you know, a passion, something that drives you, these are things that can influence the very real physical things that are going on.
And I think also, you know, it's not only important for us, but for other people. Because, you know, I think that other people can sometimes see, oh, when we're more stressed, we're having more reactions, and they'll think, oh, that's just anxiety. And it's not that simple. It really is not. But it is the fact that when I'm more stressed, you know, my sleep isn't as good, you know, maybe I don't eat as well. And all these things really do contribute.
And so we need to PR the chemical companies are spending millions of dollars on showing us that we're crazy, or showing the world that we're crazy. And so essentially what we need to do is in a sense PR of showing people that we understand that these things can impact them, you know, our needs and sometimes irritability is one of my symptoms, for example. Um, and also to show a level of like, self-awareness. I think that really helps people We'll recognize that we understand that this may seem unusual, but this is also something that's very real. So it's about finding, it's about acknowledging to other people. The understanding that we understand that, you know, this can maybe be difficult for you too while also firmly standing in our truth, and not waver when we're telling people that this is something very real that we're experiencing.
Aaron Goodman 40:28
And thank you so much for all that. And you were referring to Joe, the male figure in the film, who's married and has an adult daughter. And at one point towards the end of the film, he's considering moving to Texas to a community that's ostensibly safe for people with MCS and EHS. And as a family, they make the decision that that's not the right place for him to stay. And so because it would have meant being detached from the family, right, so it comes back to the family. And it's that decision to stay together as a family that I think you're talking about Daniel, and the discussions they have where they share that where they need him.
Brief pause, I just got so emotional just talking about that I don't know why. But I think we just can often feel I know for myself, it's easy to feel really isolated. And that we are navigating this illness alone.
I want to talk about caregivers because there are a lot of caregivers in this film. So Joe's partner, his wife, I don't remember her name. And Lani, I think you said and their daughter, I can't remember her name also. But they do a lot of caregiving for Joe and that creates a lot of strain in the relationship, and they feel underappreciated. You know, and because there's a lot of care that goes goes on, and there's another person in the film, a grandmother, I can't remember her name, who also cares for two grown male grandchildren. And in this
Tracy Cu 42:17
Sam and Nathan,
Aaron Goodman 42:18
Sam and Nathan are the.
Tracy Cu 42:19
Karen, is the mom.
Aaron Goodman 42:21
Thank you so much. Yeah. So Karen, is the the mom or the grandmother? I can't remember.
Tracy Cu 42:25
Daniel Waclawiw 42:31
Grandmother may be Ethel, I think,
Aaron Goodman 42:33
Okay, maybe Ethel. So the grandmother, you know, has spent years and years, you know, picking up supplies driving to the remote location where the family are living and isn't even allowed into, or able to go into their home, or hug and there's this really touching moment where the grandmother is saying goodbye from the outside. And then the grandmother, ultimately, we learned that she dies in the film.
Watching these caregivers, you have any thoughts on how they're represented, or the I want to have an episode with care people who care for people with MCS, but any thoughts you have on this part of this show?
Melissa Truesdale 43:18
Oh, please do have an episode, Aaron, these people who have helped me the people that we saw in the film. I mean, if you can imagine the grandmother wanting to be able to be with the grandchildren and the mother and its people didn't don't understand how amazing it is just to be able to high-five someone or to be in the same space, or to hug or not even to hug but just to be like just close enough that you feel their presence and you know.
There's the person who needs to make the phone call to find out what pesticide has been sprayed, when it was sprayed, isn't going to be aired out? Is the doctor's office do have they put up any air fresheners? I mean, can we walk into this space are we going to have an episode? If you're EMF sensitive, which I am picking up the phone might mess up your entire day. It might feel like it scrambles your brain or you might get irritated or aggravated. The basis of my experience with anyone who has these sensitivities, the over-sensitization of something that's in society and out there brings up that fight or flight. And so of course, anger comes out, of course running away, depression, all of that. I mean, the whole anti-social irritability, laughing at the wrong time, crying when you nobody can figure out why you're crying, or just the baldness of just being curt. And just we need to do that reactions are antisocial because you're trying to survive.
And so what does that do for the caregiver, the caregiver can reach out, reach out, reach out and then feel drained and feel drained. And I think the film did a really good job of showing, somebody has to make phone calls, somebody gets to do the driving, somebody has to find the driver, somebody has to talk, as an advocate to someone else that says, you know, listen, they're trying to tell you, but they're running out of steam. Let me try and help. You know, and God forbid that they interpret that wrong because now you've got an you know, you're you're putting your life in other people's hands.
And as you said earlier, Aaron asking, asking for help. And asking for the absolute basics. It puts a person on edge, and then the caregiver if they're being asked to just survive, just to bring you basics. You know, if if toilet paper was such an issue with our culture a few years ago, imagine what it's been like for all of us. You know, my toilet paper has to sit out in the storage, building and air out for a month before it can be used, you know, because the chemicals. So someone says, I've got you toilet paper, why can't you use it? And, again, helping them understand and letting them acknowledge them that they really, you feel that they're caring about you. But at the same time, they're caring about you just a little bit more, and we'll be over the hump and you can help me better. But I gave you everything I could, says the caregiver and this isn't enough? And it's it's a challenge.
And I think we felt some of that in the film. Yeah, I think that showed the tears in the car between the mother and the daughter, Joe's family, and the actual loss of a grandmother loss of a family member where you really never got that feeling of connection before she left. It's almost like living life unfulfilled. Almost like just because, I see Tracy shaking her head. Yes.
It's like, just because there's chemicals that and excuse my opinion, but I'm going to put this out there. The majority of the chemicals that we are exposed to that are changing people's lives are changing everyone's lives. And they're absolutely unnecessary chemicals for the majority of situations. And so that also brings out a judgment call, you know, if I need two cups of detergent, or if I just need water, to wash out clothes, you know the extremes. So then there's the judgments, and then there's the guilt. And there's the blame and have left, left, left, left Left. And that comes in with the caregivers.
And you know, if you're physically unable to do something and you ask for help, and you bring help in and you don't realize that they brought something in their natural environment in their purse, there's a smelly, or it was sitting in a car with a deodorizer or something or they let us fragrance candle the night before, or they hugged their boyfriend or their husband that smoke just suddenly brings smoke smell in the house. The simple little things of a transfer of chemicals that comes into your house. And then suddenly you say, well, I needed the house cleaned. I needed some help with making the bed. And now I'm exhausted and I'm crying and I'm so wiped out and my voice is going cause you're experiencing that from me today. My voice is not as strong as it usually is. Just because for like 30 seconds something came in the house. I No need to touch it. No nothing but it came in. So when these caregivers come in, and imagine how they feel we're trying to come in and help and I've had people go, I need to leave because I don't want to hurt you. Right. And you're just like, but I know you don't mean to hurt me. I know you're not trying to I still need the help. Yeah, but I can't sleep tonight if I'm hurting you, but I really needed food. But no I'm hurting you. Bye. Left alone again.
Aaron Goodman 49:03
And it's very difficult. Thank you so much, Tracy, on the caregivers.
Tracy Cu 49:11
I think there's a lot of burnout. It's because they're big asks, and I think in the in the case of Joe and Laney, Laney was relied upon heavily and the daughter even made a big effort to and it really was a strain on their relationship. And even Laney at the end she said she doesn't know what kind of emotional baggage she's he's going to be well, and how will I be? She kind of left it at that. And I thought Yeah, it's not. The illness itself has an impact, but there is a ripple effect that goes to the rest of the people that are around you and If you only have limited a number of support people, how much can they manage?
Aaron Goodman 50:06
Yeah, and we haven't even talked about relationships per se. Right? You know, because I, the way I phrased it was caregivers in their on their own. Daniel, you talked about, you know, dating, do you want to maybe talk a little bit about how you see relationships in the film, they have parent with the illness and children, there's siblings with the illness, parent, child, partners, anything at all that comes up for you about how relationships are reflected in this film?
Daniel Waclawiw 50:43
That's actually a fantastic question and something I think about a lot. So the first thing is that relationships just in general, take work. You know, it requires both people to put an effort in to work through disagreements. And in a healthy relationship, you're going to be able to get through the periods when you're feeling annoyed or angry, or disgusted with somebody. And both have the understanding that, you know, I value having this person in my life enough to have the difficult and uncomfortable conversations.
You know, I think there are a lot of MCS, people who really do understand, you know, we go through periods of guilt, you know, are we being too much, but we also have needs. And so finding the balance of how to express that is important. And it's also important to allow to recognize that other people are allowed to feel the way that they feel. People can get irritated, especially if they're trying, you know, it's one of those things where unless you really experiencing MCS, it's really, really hard to understand just how pervasive it is a person is like, well, I got rid of my air freshener, and my detergent, but then they're continuing to use their shampoo, and they're like, am I not doing enough for you?
You know, I've had somebody say, there's no compromise with you. And the fact is, I'm, when it comes to that one thing, there can't be, there can't be no relayed back otherwise, but that is difficult for people. And so acknowledging that is important. allowing people to have the space to vent their frustrations, if that comes up. The best way to avoid that is, you know, I remember, you know, for me, you know, it's the first few things like hey, you know, when you're around me, if you're not where that you're not where that, but then they're still not getting it, it becomes it feels more awkward and difficult for me to continue mentioning it. Yeah, but what I need to do is, say it and then verbalize Hey, I noticed that you seem like you may be a little annoyed, I just want you to understand that, you know, you can tell me, I really would appreciate that open conversation, you know, communication, just like I'm communicating with you because they understand that this can be, but I care about you. And so I'm just stating what my needs are basically.
Aaron Goodman 53:04
Yeah. Well, very articulate. Very well said. I think we're getting close to wrapping up. I have one more question for all three of you. Maybe I can ask you, Daniel, because I think you may have to go to an appointment. Feel free to go or do you have time for this question, Daniel,
Daniel Waclawiw 53:24
I have time for one question. And then I’m gonna leave y’all.
Aaron Goodman 53:28
Thanks for letting me know. So do you think this film "The Sensitives" could be a helpful resource for people who do not have the illness to help do you think it could help people understand it? And or become more compassionate towards people with MCS?
Daniel Waclawiw 53:51
I really think it could go either way. And that ultimately, it's going to be that person's own personality and their own perception of the world that is going to decide that. I do think it creates the opportunity in the sense that, you know, it shows that there's a whole family that is suffering, it sort of lends credence to the idea that there's like a genetic component to it. You know, it does show a certain level of self-awareness.
Like, you know, Joe, I think, honestly, I was getting a little annoyed with him sometimes the way he was handling things. But even I think that what he was saying, oh, you know, just a bunch of crazy people here kind of had a moment of self-awareness of like, yeah, you know, we all have our own different things. And I think he was feeling very self-conscious and defeated, that he was, you know, having to isolate himself so much. And so he's kind of projecting that out. But there's that awareness there.
It's all about I think we just have to be as communicative as possible. And show people that we're just people and I think it was a very human documentary at the end of the day, so I'm glad that it's out there, certainly better than some of the other ones. So I think slowly the tide may be turning about, you know, planting, you know, it's planting the seed. And, you know, I think there's no harm in that.
Aaron Goodman 55:16
Well, thank you so much, Daniel, for being here. And for everything you've shared, I really appreciate it. And I understand if you have to go, by all means, and we'll carry we'll continue on. Tracy, do you think it could help people who don't have the illness, understand it and develop compassion?
Tracy Cu 55:33
Thank you, it opens the door for conversation, I think, partly because it's so extreme, it really pushes people to question what's happening with them. I think I think it's, it opens conversation. And I appreciated the documentary too, because it was it, they let the characters do the talking. There wasn't really background commentary about other ideas or opinion, it was really about these characters, and they spoke up for themselves. And I appreciated that very much. And I, I think it's certainly I'm, again, happy that it's out there as well. And I appreciate the time and effort that they put into it. And I certainly think it, it conveys a lot of emotion. And that's memorable. Where there's emotions, there's memory, and I think that's a very good thing.
Aaron Goodman 56:38
You mentioned that it shows extremes, you know, the people in the film have to really live very isolated, and their illness is very, very severe. In my view, the film is very powerful. I like that it's observational, as you say, Tracy, the filmmaker, allows the people themselves to speak without, you know, narrating, or, you know, but I feel like there is a risk of exoticizing. Or, you know, it may be hard for people to really understand the way the people have to have to lose on the very, on the very margins of society. Whereas, I mean, that wouldn't be as interesting of film, if, you know, there were people who are more kind of, you know, able to go about their lives, you know, that wouldn't make a really interesting film.
Tracy Cu 57:38
It is very dramatic. There's a lot of impact there. And because there's so many of us that are existing within society, in the milieu of our worlds and interacting more with people. And I think I think it's just a spectrum. Some people are on one end, and they're at the other. And if we had maybe an example of each, and I think the thing that I think about most is, no one thinks it's going to happen to them until it does. And no, everyone is at risk. And I think about the kids, the children, and the elderly that are even more vulnerable, and how they don't know it, and the parents with young children, they don't know it. And then when I think about Laney and Joe and their daughter, at least their daughter's getting an education about it, she's going to be informed. And hopefully if she has children, she can pass it on and keep our kids safe, or etcetera. Yeah.
Aaron Goodman 58:44
Melissa Truesdale 58:46
We are seeing in that film, we saw adult children. And can you imagine what the children are experiencing? You know, we speak about getting children involved in their environment and inviting friends over that would be completely impossible. So it's an illness that takes over the family. And it took over the mental stress the mental, if you had a mood about this film, and I said, I'd like you to watch this film. There'd be a little warning that says, make sure you have support during and after. Because it is touching on situations. And there is a little bit of fear that pops up for some of us that you know, first of all, oh my that can't be me. You know, look at these people on the extreme. Or, oh my gosh, this is going down the road. There's no guarantee that we go down the road one way or the other, things get worse or better. The facts are the facts. Just the amount of time spent In the depths of the deep, dark emotions that this causes, I'm curious. I wonder how many people will actually stay with this film? How many people will click it on and click it off? Because this is uncomfortable.
Will this film, which is great, and I commend everyone for doing it. But will this film be something else, it's that people go. They're not going anywhere with this, I'm clicking out, right. Like I said, if that is anyone who wants to watch this film, please go to the end and watch it, you can go back to the middle and watch it. But all of the storm and Dragon and the music that goes with it, I feel that as an empath, I feel that so strongly from the people who are presenting it and that, and I'll be truthful, I doubt that it really showed the full depth of the sadness, and the remorse and all of these wonderful things that our bodies can sense, the dark side, as we call it, or the sadness or the negative aspects of it. It just barely touched the corner.
If we're educating people who don't have an experience of this, hopefully, this is what it's doing. Is it a film that they're willing to watch? Because is it so uncomfortable? Is it comfortable enough? Does it give them enough of an opening that says, okay, there's hope around the corner. I'm not just gonna go to the doctor with somebody and watch them go through the process of this, it does, I will tell you this, the film has enough characters in it that you flip between characters. And in this society where an attention span might be eight seconds, we're spinning to a length of time. And we do get to go to the outside world, we do get to go to Arizona, we do get to go to the window of the bedroom of the two grown men, we do get to go in the car with the adult child, the mother of Joe, the mother of the child and the wife of Joe.
But is this really something? I want to find out, I really want to find out. Is this something that if I show someone, will they watch it? Or they'll say, oh my god, Melissa, you already take so much of our energy just to be with you. We love you. But I don't want to spend this much time being depressed.
Aaron Goodman 1:02:42
Yeah, I hear you. I hear you. It's a very intimate film. And I relate to what you're sharing listen, because I had to watch it in bits and pieces, you know, I would find it very emotional to watch it as someone who lives with MCS But yeah, I really hear you anyway, I really want to thank you for the really thoughtful analysis of this film, and for taking time to speak with each other, with me today, for being part of the first films slash book panel on the Chemical Sensitivity Podcast, which will be something ongoing. And it's been just such a delight. So anything else you'd like to share before we wrap up?
Melissa Truesdale 1:03:33
I want to tell Tracy that I just thought it was amazing that she went right out of the gate sharing her vulnerability and, and the fact that this film did bring things up. And Daniel, I'm, I'm just so amazed. I'm for people who are just listening. I'm in the 60 age range soon to have a birthday I'll be 63 and the youth of Daniel gave me more hope than anything else that he was able to very clearly speak. And that the idea that both Tracy Daniel and also Aaron, of course, that ability to communicate which is the essence of healing this entire situation. I see hope with our youth of Daniel I see hope, because there's someone at a university who can actually do it a podcast. And there's someone who's out there, Tracy, who's doing advocacy, the bravery in the I'm doing my part I'm absolutely encouraging people to come and be a part of my amazing access.
And we're coming together. I think the community in itself as a whole is feeling braver about speaking out. And has they have the individuals are feeling the right that they have to speak out. One of the parts It's about this illness is it sometimes feels like you don't have the right to speak up. And I believe that's going to be an old horse that no longer comes to the barn. We're speaking up. And I thank you, Aaron, for giving us a chance. And that film was great.
Aaron Goodman 1:05:18
Oh, thank you really.
Tracy Cu 1:05:19
Well, thank you, Aaron, very much for giving us a platform. And to spread the message. Maybe we can prevent one or many people from an exposure that kills them completely. And we want to it's prevention. It's a preventable issue, disease and illness.
Aaron Goodman 1:05:42
That brings us to the end of this episode of The Chemical Sensitivity podcast. Thank you very much to Tracy Sue, Melissa Truesdale and Daniel Waclawiw for speaking with me. We release new episodes twice a month. Please subscribe where you get your podcasts. The podcast is produced by me with assistance from Kasey Walstra.
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