Episode 31 of The Chemical Sensitivity Podcast is available now!
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This episode is called “Podcasting, MCS and Community-Building.”
It features a conversation with me, Aaron Goodman, founder and host of the podcast.
I answer some listeners' questions about why I started The Chemical Sensitivity Podcast, my experiences with the illness, community-building, and more.
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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 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. And as you know, many people with the condition are dismissed by healthcare workers, employers, friends and even family. Countless people with MCS struggle to find healthy housing and get a commendation of work in school. We suffer in all kinds of ways. The purpose of the Chemical Sensitivity Podcast is to help raise awareness about MCS, and what it's like for people live with it.We featured interviews with some of the world's leading experts and researchers on MCS, and lots of people with the condition and we're just getting started.
Aaron Goodman 01:04
This is Episode 31 and the title is "Podcasting MCS and Community Building." It's a different kind of episode in that we've decided to answer some of your questions and provide some information about me about who I am, some of my experiences with MCS and why I started the podcast. I'm not planning to talk about myself in great depth again, or on an ongoing basis. So this is kind of a one-time episode. And the idea is just to give you the listener a bit of a sense of who's behind the podcast. So you'll hear me speaking with Raynee Novak who helps produce the podcast and kindly took time to speak with me. I hope you enjoy the conversation and find it a benefit.
Aaron Goodman 01:47
If you like the podcast, you can support the project and help us continue making it available and creating greater awareness but MCS find links on the website ChemicalSensitivityPodcast.org and the show notes and many of you are already generously supporting the podcast and I really appreciate it. Thank you very much. We release new episodes twice a month. Subscribe wherever you get your podcasts, find the podcast on YouTube. Just go to YouTube and search for the Chemical Sensitivity Podcast. Click subscribe. Find us on social media just search for the Chemical Sensitivity Podcast or Podcasting MCS. Please leave your comments about anything you hear and please share the podcast with others. If you'd like to read transcripts of the podcast, go to the podcast website chemicalsensitivitypodcast.org. Click on any episode you want. And then click on transcripts. Or on YouTube. You can read captions in any language as I said. So leave a review on Apple podcasts. It's a great way to help others learn about the podcast. And if someone you'd like to hear interviewed on the podcast, or a topic you'd like us to explore, just let me know, email email@example.com. Thank you for listening.
Aaron Goodman 03:02
Well, thanks Raynee for doing this with me.
Raynee Novak 03:06
Oh, thank you, Aaron for taking the time to talk about yourself on the podcast.
Aaron Goodman 03:11
For sure. It's not something that I ever planned to do. You know, I've never really wanted to center myself and I'm not going to center myself in this podcast. But you know, we're doing this because some listeners have shared that it might be helpful to know a little bit about me and, you know, obviously I have MCS, but it's an opportunity just to share a bit more information with folks to know who's behind the podcast.
Raynee Novak 03:35
I want to ask you how long have you had MCS?
Aaron Goodman 03:39
Yeah, so I think I've had MCS, basically my whole life. I mean, going back as far as I can remember, I have two young children and I've been married for some time. And so I'm not I'm not young anymore, but I've had MCS probably since I don't know if since I was born, but it's possible, but definitely in my childhood. And how do I know? Well, I know like a lot of people. I just felt unwell a lot of the time, and I didn't really I never knew why did I know that I was being triggered by household chemicals? No, because, you know, as a young person, nobody puts that together and even adults don't necessarily put that together because did people even know about Multiple Chemical Sensitivity back then?
Aaron Goodman 04:34
You know, I grew up in the 70s and 80s so so no, no, I didn't know. But you know, my parents were smoking in the house and you know using chemical cleaning products that I'm sure we're not making me feel good and I think the food that we were eating although they made an effort to provide and cook healthy meals. It certainly wasn't on our on an organic diet, you know, so I'm sure there were things in the food that were making me feel unwell. And I think if you know, maybe we can talk about those if there were TILT events, right, so we talked about TILT. It's the term that was defined by Dr. Claudia Miller and colleagues, which really reflects either a gradual or exposure over multiple times to low dose chemicals or schools and gold exposure to high dose, I think I had exposures to a lot of smaller doses in the form of like a lot of people. And I'm not special in any way. So I just want to emphasize that as much as well as my case is not special or unique. Everyone's case is different. But so in my case, I had a lot of ear infections as a child. And I just remember my parents dragging me to the doctor's office again and again and again.
Aaron Goodman 05:54
And as was probably the practice at that time in North America, the doctor gave models of antibiotics. And I recall reading that that can be a factor, right? We know a lot of people develop MCS after having antibiotics, and then add my tonsils out as a lot of people do and had general anaesthetic. And then I had my wisdom teeth out in my teenage years. And I remember waking up from a general anaesthetic, because I had four wisdom teeth taken out, I had a really bad reaction to the anesthetic, or one of the medications that they had given me, my reaction was, was really strong.
Aaron Goodman 06:36
And then throughout my 20s, and 30s, and even 40s. So now I'm giving me my age, more or less, I was working as a freelance journalist and documentary filmmaker. And so I worked a lot in Asia, and basically across Southeast South Asia. And from the time I was basically 17, I was getting a lot of vaccines. And I know there's a lot of debate and I'm not talking about vaccines in order to, you know, open a can of worms or, you know, debated though, whether vaccines cause injury or not, that's not my intention, it's just to say that the accumulation of medication that I received, in my mind probably contributed to my what is now a really severe form of chemical sensitivity, where I'm hypersensitive,
Aaron Goodman 07:28
Oh, and before I forget, and I don't want this to be like an exhaustive autobiography. But when I was living in Thailand, about 15 years ago, as the practice where I was living in Bangkok, in a condominium building, the or there was repeated pesticide spray, basically, every two weeks inside my unit and throughout the building. So termites caused a lot of problems for buildings in that part of the world. And so, pesticide spray is really commonly used as a lot of people listening will know, and for a lot of people, for most people, you know, I was in meetings where, you know, someone would come in someone who was working would come in, and, you know, holding like a big silver canister, and start pumping the stuff into the pesticide, the air, and I'd be like, I got to get out of here, I'm sorry, I gotta leave. And they'd be like, Look at me, like, I was crazy.
Aaron Goodman 08:20
Because most people just, it's part of the day to day, they're in that part of the world where people don't really ever think about it. But I remember coming home, you know, I'd be working and I'd come back to my, the condominium that I was renting in Bangkok. And again, and it's interesting that you know, having this conversation Raynee, because I can just talking about it, connect some of the dots, you know, so I had the same kind of outburst out of control reaction to the pesticide that I did to the antibiotic, not to the antibiotic that I had to the anesthetic, or the medication from my wisdom teeth surgery removal.
Aaron Goodman 09:04
So long story short, it got to the point where I could no longer live in Bangkok. And you know, I, you know, a lot of people, everyone's aware of the high high level of pollution, air pollution, industry pollution there. And I never really thought about until I could no longer live there, because that was my TILT event. So I had managed my condition up until that point, not knowing what I had, just knowing that I felt unwell a lot of the time until that TILT event because that was from one day to the next, you know, after that. So there were a lot of pesticide exposure but one day I was outside and someone who was working in you know, using that spray dumped a lot of that or sprayed a lot of it over the side of the building and it rained down on me. So I remember feeling it, the moisture of it, the taste of it. So I inhaled it was in my mouth. And that was my TILT event. So I was never I've never been the same after that date.
Aaron Goodman 10:15
Yeah. And so I after that I couldn't go outside without reacting to chemicals, perfume, laundry, detergents, chemical products, all that kind of stuff.
Raynee Novak 10:26
Great. So you've told me about your TILT event, which is something I was gonna ask. So with all of this, how were you able? Or were you able to get a diagnosis? How was that process look like for you?
Aaron Goodman 10:37
Yeah. So I was fortunate at the time, living in Bangkok. You know, I was teaching at a university teaching journalism and working as a freelance journalist and making films. And when I had my TILT event, I was fortunate that I was able to go to clinic where there was a doctor who was a functional medicine doctor, Doctor Torsack, and I feel quite emotional, just talking about it. Because the way circumstances lined up, I was really lucky that I landed in that particular doctor's office, because there have been a number like many of us, like most of us with MCS, there have been many times where I have been met with denialism and been dismissed and told by doctors that I have anxiety disorder, when I do not know so that I'm very familiar with, but that particular doctor understood the condition recognized it and diagnosed me, gave me a clear diagnosis of Multiple Chemical Sensitivity.
Aaron Goodman 11:44
So that was that was really fortunate. He also provided me with a form of treatment in the form of antioxidant supplements, which provided some limited relief for a time, but not really, I haven't ever found anything that has helped me, you know, to be to recover from this condition. It's one that I continue to live with.
Raynee Novak 12:12
Right, of course. So going forward, how has MCS affected your relationships?
Aaron Goodman 12:19
Well, it's like, you know, anyone, everyone listening will know that it's, you know, when you have this condition, it affects everything. So I was fortunate, again, that my partner, the woman I married, we weren't yet married in Thailand, but we met in Thailand, and her name is Bea, was, is a very compassionate person. And she's also trained in biology. So she has a scientific mind, and can understand, although even you know, experts don't exactly know, but because she has a scientific scientific foundation, she can understand that it's plausible, you know, she can understand that I'm not making this up.
Aaron Goodman 13:01
And there were a couple difficult moments, for example, when we were we were dating, and we were at performance in a theater. And it was in the earliest part of our relationship. And, and she was wearing a perfume, and I couldn't be in the theater, I couldn't sit next to her. And so that was, that was very difficult. And so there was a period of adjustment. And on, you know, for her, she made the decision to use all unscented products, cosmetics, you know, hair, laundry, everything. And so, thank goodness, because we know, not everyone is willing to, you know, be compassionate and understand.
Aaron Goodman 13:48
And so fast forward to we've been together for 16 years, and we have two children who are six and eight. And they're wonderful, too, because they really look out for me, and we don't use any scented products in the home. And the only, I mean, there are a lot of challenges just being out and about in the world with them because I you know, I'm fully engaged in their lives, but one of the challenges is when they go to school, so they go to elementary school, and it's very, very fragrant. It's coming from the cleaning products that the school uses, or I think some teachers may be using air fresheners and we know during COVID, there was a lot of air, you know, sanitizing products so and I'll probably the laundry products that other students wear, I'm guessing they come home and you know, it's in their hair and on their clothes. So we have learned like many do when they come home, they just change clothes right away and they go into the bath and they don't like it but I'm still washing them because it's important that they they can't get it out on their own. So that's just our family has had to make make that adjustment where, but they're really kind, you know.
Aaron Goodman 15:04
So for example, we live in a condo here. And we live in the west coast of Canada in a city called White Rock, which is near Vancouver, we live in a condominium building. And sometimes the elevator can be really fragrant. A lot of time. It's it's not, but I generally take the stairs. But sometimes when we take the elevator, they're like, you know, they suss it out for me, they go in, and if it's really dirty, and we can't, it's so they're really, really sweet and very thoughtful. And I think it's probably good in the sense that, I mean, they can make their own decisions as they grew up, but I'd be inclined to think that they probably will choose unscented and healthy products as they grow older too.
Aaron Goodman 15:51
Hi, it's Aaron, just pausing briefly to say thanks for listening to the chemical sensitivity podcast, you're listening to Episode 31. This episode is called Podcasting, MCS and Community Building. It's a different kind of episode, we've decided to answer some of your questions and provide some information about who I am. But some of my experiences with MCS and why started the Chemical Sensitivity Podcast, you're hearing me speak with producer Raynee Novak. And thanks so much for listening, subscribe wherever you get your podcasts. And if you'd like the podcast and still want to support the project, please find links on the website. And in the shownotes just go to chemicalsensitivitypodcast.org Your help allows us to continue making the podcast and create greater awareness of it MCS. Thank you very much.
Raynee Novak 16:41
Well, it sounds like your family is very respectful and understanding which is wonderful. Not a lot of people have that of course as you know, they think it's just an anxiety disorder. You've talked about your family, what about friends? Did you have any negative experiences with friends?
Aaron Goodman 16:56
When it comes to friends, I would say now, most of my social interactions are with people online. So I remember it's just hard like a It's hard making friends as an adult to begin with, I find but it's also hard to you know, for example, I've been becoming friends with another child's father at the school where our kids go, because we're there in the playground almost every day, you know, as our kids are playing after school. And, you know, we've become, I think we call ourselves friends. You know, we don't hang out on weekends or anything. But you know, we the way we talk with one of the I'd say we're we're on the way to becoming friends. And I've been fully transparent about my MCS with this particular individual. And they came to our daughter's birthday, about a month ago. And he came wearing Axe deodorant, or something really, really fragrant. And so I was really surprised by that.
Aaron Goodman 18:00
But maybe not that surprised at the end of the day, because, well, it just symbolizes to me that it's going to be really hard to make friends with people who don't have the condition. I remember just another story we were was becoming friends with another fellow who also happened to be the father of one of the children that our children were playing with at that time, a couple years ago, and we had a family get together and his spouse, his wife came wearing a really, really strong fragrance. You know, it's one of those cases where you could probably smell it down the block. And I said, not at the time. But after I said, you know, be great to get together again. But would you be willing to ask your partner to refrain from using and I didn't hear from that person again.
Aaron Goodman 18:53
So I think some, it's hard, it's really, it's really hard to be in the world and develop friendships with this illness. So I've kind of resigned myself to, like 99% having relationships with people online. And it's really wonderful. You know, through this podcast, I've met a lot of people and like a lot of people I'm on, you know, social media sites, Facebook, etc. And we don't have to explain it to anyone, right? We don't have to explain it because it's really difficult to you know, I could just share one more story.
Aaron Goodman 19:34
For example, I don't go to a particular extended family member's house anymore because of the laundry products they use that are really, really toxic. And so And yet they continue to invite us over and I just can't You know, I just prioritize my health now, because it's not worth it being in that environment and just feeling ill because as a parent with young kids and with a lot of responsibilities, I just can't afford to not feel well anymore. And I think that's the great thing, but having a diagnosis and just knowing like, and as I'm getting older too, like, I realize there isn't as much time left. So with the time that I have, I want to feel good. I don't want to be in environments where my health is compromised. Because if I look back on my life, a lot of time, it wasn't great, you know, and so I just want to really be feel good.
Raynee Novak 20:31
Well, it sounds like you found a good kinship with people online. And they understand you and understand what you're going through, which is great. How has having MCS affected your work life?
Aaron Goodman 20:42
Right. So, you know, I've been working as an educator, as a university instructor for, you know, full time for for over a decade. And it didn't really dawn on me to ask for accommodation up until a couple of years ago, you know, even though I had a diagnosis, but got to the point, I think with the potency of the laundry products, and, you know, the fragrance products that are there in the classroom, that it just became impossible, and I think my illness progressed to so I just couldn't be in, they just couldn't be there anymore.
Aaron Goodman 21:21
So I put in a request for accommodation. And fortunately, it was, it was granted. So I'm able to teach all online, and I do Communication Studies Research Online, as well. And you know, so that's been great. Is it forever, it may not be you know, it's one of those things that needs to be renewed. I'm fortunate that I have a doctor who doesn't argue with me about the condition. You know, my doctor has signed the accommodation request letters, my doctor is leaving her practice. So we'll see what the future looks like. But for now, I'm consider myself very fortunate. If I had to go back into the classroom, like a lot of people who are, you know, work in education, it would be really tough, it would be really tough, but I thought about what I would do.
Aaron Goodman 22:19
So I could probably wear, you know, wearing a respirator like a half mask respirator is difficult, because no one can see your mouth, your face. And it's hard to be heard. Could I wear a full face respirator? Possibly, you know, we're, we're talking about I'm going to be talking with a couple of people on the podcast who happen to be educators who do wear them, or did it for a time, but then left teaching, so it's possible. But ideally, I'll be able to continue to teach online. And I think the pandemic showed us that online work and online teaching is it's not a bad thing. It's a really great thing you know, so I really hope I can continue to do it. And the podcast is done online too. So so that's really, really great, too.
Raynee Novak 23:09
So you mentioned masks, do you typically wear a mask when you're out?
Aaron Goodman 23:13
Yeah, so like a lot of people I've tried a number of masks over the years, I've used like a charcoal insert in a cotton fabric mask. I won't say the name of the company, but it no longer provides adequate protection for me because my illness has progressed. So what I knew do wear now I was looking behind me to see if I have it. But I will say the name of this one, I use a 3M half respirator with a 60926 filter, which is the clunky, gray and pink filters. And I don't leave the house without it anymore.
Aaron Goodman 23:49
What I do is rather than wearing it all the time, I hold it in my hand and I took the straps off it so I just cup, cup it over my mouth literally with every breath I take when I'm outside, you know we have a dog and I I take it every time I walk the dog because I can encounter dryer sheets in the neighborhood where we live or you know, exhaust from cars that sometimes throws me off or fragrances so that's been really a learning curve for me and really just giving myself permission to do that. Do I get a lot of stares? Yeah, yeah, like a lot of people.
Aaron Goodman 24:30
So during the pandemic, you know, the whole mask thing, as we know, got really politicized when I was walking my children to school one day and a young child I'd say about six came out of their house and started yelling at me, "My parents want to know why you're wearing that mask." And I just, it was really disheartening. You know, it was really disheartening, you know, because, well at the time I was wearing the 3M half resparator covered with a scarf. So it looked really big. And so now I don't do that, because it just makes it more it makes it show even more, it makes it look even more awkward.
Aaron Goodman 25:14
So yeah, so I get away with cupping it, I'm going to be taking an international flight with my family in the summer, I'm probably going to have to wear the whole time. And am I looking forward to that in airports and on flights? No, not at all. Not at all. And the whole travel thing, by the way, is really, really, really challenging. Maybe we can talk about that. It's, as we know, it's really complicated. But on the mattter, on the note of masks, as someone recently wrote on on the one of the Facebook groups, it's basically it allows me to be in the world again. And it's really it's allowed me to regain a lot of my life, you know, so I'm really grateful that I have it, we're going to have an episode with people who wear masks, big mask respirators to talk and full face masks to talk about the kind of the inner strength and the guts it takes to do that day in and day out.
Aaron Goodman 26:07
Because, you know, as someone one of the guests said to me, as we prepare to have this conversation is i I'm now that person and nobody wants to be that person. But you know what Raynee, like, I have learned through this illness and having to use a mask every, all the time that, you know, we're othered were made to feel like we're, we're freaks, there's something wrong with us. We're stared at, you know, I wear it in the schoolyard every day to drop off and pick up my kids. And there was like an 800 Children in there and adults and teachers, and I'm the only one. And you know what, that really sucks. It really sucks. My kids don't care. Now, you know, they don't care. But I get a lot of stares.
Aaron Goodman 26:57
And there are a lot of parents of children in my children's class who would not talk to me because of it. And I take my kids to their Judo class. And a lot of people don't talk to me because I'm cupping a mask to my mouth. And maybe they think I'm you know, have a mental illness. And I'm paranoid about COVID. But we know that people in wheelchairs or who have other disabilities, this is how that what they experience, you know, multiplied all the time. So. So that's what I learned that as someone who feels othered every time I leave the house, it's really not easy. It doesn't really get easier, but I just pushed through it.
Raynee Novak 27:44
Right. Well, you touched on the topic of traveling, since you are going to be taking quite the flight in the summer time. What sort of difficulties do you foresee with traveling?
Aaron Goodman 27:55
Yeah, well, traveling is super difficult because hotels are out of the question, I basically stopped I used to travel a lot with my work, then I basically stopped it. And I've been like a real homebody for a number of years. But you know, we want to take a family trip. So and I'm also doing some work in there as well related to my teaching and research. So it involves trying to find accommodation, get this where what's likely gonna happen is I'm going to sleep in a tent, our own tent, which is a chemical free tent in the yard of the Airbnb owners, and I'm going to probably wear my respirator in the house, you know, when I'm making meals or with my family or even having a shower, you know, but that's just what it takes to do this.
Aaron Goodman 28:52
Because that's just what we have to do. It is it is what it is. Yeah, so mask in, in Ubers, on trains on planes, sleeping outside. And that just takes a lot of coordination. You know, it's a lot, a lot of planning a lot, a lot of planning, but that's it is what it is.
Raynee Novak 29:14
Right. So with all your experience with MCS, did you decide to do the podcast to share information? Like is that what brought about the podcast?
Aaron Goodman 29:25
Yeah, I think it really is. I mean, like a lot of people, because I've had lived with MCS for quite some time. You know, a lot of us can remember when, you know, let's say back in the 90s there were like a couple of websites and there just wasn't a lot of information. You know, we had to do a lot of searching, a lot of digging to find out what this is and what to do about it. You know how to adapt. So, so there's still you know, with social media, there's there's more information available to us.
Aaron Goodman 30:00
And you know, the level of support that people provide to one another is is incredible. There have been some podcasts made by people with MCS. And I recently learned about one that was done like way, way back. But what we want what I want to do with this podcast, that Chemical Sensitivity Podcast is a couple things, just to provide another opportunity for people with the illness to voice their experiences to talk about their lives and how it's impacted them. And there is some research being done. So you know, we're talking to physicians who know about the illness and researchers.
Aaron Goodman 30:44
And yeah, so we're trying to do like educational, informative, and also hopefully engaging and sometimes fun and interesting. So it's been a lot of work, I won't deny it. We just finished marking celebrating the first year of the podcast, and it's just getting going. So the reception has been phenomenal. There are 1000s of listeners across North America, Europe, EU, UK, Australia, New Zealand, across Asia. So our goal is really to reach people, wherever you are. You know, one thing that's really exciting is that the podcast is now available on YouTube. Thanks to your help, Raynee. So podcast is on YouTube. And there, it's available in any language. So captions are available in any language. And the podcast is available on most platforms, virtually all platforms. It's free to subscribe. We have new episodes every twice a month, perhaps as we move to wrapping up could discuss how having MCS has changed your life.
Aaron Goodman 31:55
Yeah, it's continues to challenge me. It's also shown me you know what's important in life, the quality time when I'm healthy, unhealthy environment, with my family doing work that I you know, believe in, that is such a gift that I can that I can do that so, and I get a lot of satisfaction by talking with other people who live with this illness. So that's been really gratifying, too. So super grateful for all the support from people who listen and subscribe and support the podcast. We hope you continue to listen, I hope it's been helpful, maybe thank you for bearing with me as I kind of share this part of part of my life with you. Thank you, Raynee for all the work you do on the podcasts and for taking time to speak with me.
Aaron Goodman 32:47
That brings us to the end of this episode of the Chemical Sensitivity Podcast. Thank you very much to producer Raynee Novak for speaking with me. We release new episodes twice a month, subscribe wherever you get your podcasts. If you like the podcast, you can support the project and help us continue making the podcast available and creating greater awareness about MCS. Please find links on the website, chemicalsensitivitypodcast.org. And in the show notes, many of you are generously supporting the podcast and I really appreciate it. Thank you so much.
Aaron Goodman 33:20
Please find the podcast on YouTube. Go to YouTube and search for the Chemical Sensitivity Podcast. Click subscribe. Find us on social media just search for the Chemical Sensitivity Podcast or Podcasting MCS. Leave your comments about anything you hear on podcasts and please share the podcast with others. If you prefer to read transcripts of the podcasts, you can go to the podcast website chemicalsensitivitypodcast org, click on the episode you want and then click on transcript. Or you can read captions on YouTube. leave a review on Apple podcasts a great way to help others learn about the podcast. And if there's someone you'd like to hear interviewed on the podcast or topic you'd like us to explore, just let me know email firstname.lastname@example.org and thanks for listening.