Aaron Goodman  00:06

Welcome to the Chemical Sensitivity Podcast. It's a podcast that amplifies the voices of people with multiple chemical sensitivity or MCS, also known as environmental illness, chemical intolerance, and toxicant induced loss of tolerance or TILT. 

The podcast also highlights emerging research about the illness. If you like the podcast, you could support our work to help us continue creating greater awareness about MCS find a link in the episode descriptions at chemicalsensitivitypodcast.org.

This episode features a conversation with Susan Abod Susan. Susan is a filmmaker and singer-songwriter based in Santa Fe, New Mexico in the United States. She's lived with MCS for a long time and focuses on the illness in her filmmaking and music.

In our conversation, Susan explores her singing and songwriting about MCS. We talk about her film "Homesick," which focuses on a journey she took exploring how people with MCS try to find and build healthy and safe housing. A brief trigger warning, Susan talks about how people with MCS who struggle to find housing experience disproportionately high rates of suicide. 

I hope you enjoy the conversation and find it of benefit. We release new episodes twice a month. Subscribe for free wherever you get your podcasts. Leave a review on Apple Podcasts. It's a great way to help others learn about the podcast. And thanks so much for listening.

Aaron Goodman  01:41

Susan, you've been a musician, a filmmaker, for a long time. How about we start with your music? One of the most powerful songs, in my view, in your catalogue is a song called 'Homesong'.

Susan Abod (song excerpt)  01:55

Where is my home? Where on Earth is my home? Is there a home for me? Just a safe place to nest, maybe away from the rest, where the air is nothing but clean.

Aaron Goodman  02:36

Could you talk a little bit about 'Homesong' please?

Susan Abod  02:39

The film 'Homesick' was almost edited, and I actually needed to write a song for the film. I think that was really how it happened. And it always--it starts with a question, you know, where where is my home? That's kind of how that happened. Because even when we were editing the film, it wasn't clear where I was going to land, physically, in my own life. And it's interesting that that is a song--I'll do a lot of jazz, and I'll do a lot of other things. But if they know that song, they ask me to sing it. And it really kind of blows me away, because I thought it was just very particular to people with chemical sensitivities but it actually isn't, you know, it's a very universal theme

Aaron Goodman  03:31

That--that line from that song. "Where is my home? Where on earth is my home? Is there a home for me?" That really resonated with me, and I'm sure you've heard from a lot of folks with chemical sensitivities. Is that a line that people resonate with? What do people with chemical sensitivities tell you about that song?

Susan Abod  03:52

Actually, what's interesting--I mean, they really resonate, and some--some people were crying, but there were a lot--like at the CD release party. What I was really surprised by was how many people came up to me who were not chemically sensitive, might have had it, someone, a child or, or something, and cried about it. And then there were also people who just related to it universally, which kind of shocked me, but it is a universal theme of finding one's home. But ours was a very physical. It's very physical, I mean I think one of the lyrics is "can I find the shelter I seek" and, "but in my home, there's a warning and I know that I'm going to have to leave" and "I hope I can find the safe shelter that I need" and you know, it can be interpreted separate ways.

Aaron Goodman  05:01

There's a sense of foreboding in the song, there's a knowing that the home isn't working, right? And whatever is that--that contaminant in that home, is making it very hard for you to stay in that home. That's how I saw it. And I think a lot of people with chemical sensitivity relate because we often struggle to find homes that work for us. So we search and search and search and search, we try one, we try another, and that's something that has been a theme throughout your life too, right?

Susan Abod  05:31

Absolutely. It seems to be the number one issue for people with chemical sensitivities, is to find a safe environment that they're not going to be bombarded by anything, you know, and that they can just kind of--their body can just kind of rest. That's what's talked about, is accessibility.

Aaron Goodman  05:53

I'd love to turn to your wonderful film 'Homesick'.

Susan Abod (film excerpt)  05:57

What's happening here on Earth? It seems that our bodies can no longer handle living in such an industrialized world. More and more, people like me are developing an illness called Multiple Chemical Sensitivities, or MCS, I wanted to find out: How did others get sick? Did safer housing get people with MCS well? Was one area of the country safer to live in than another? And so, the journey began.

Susan Abod (film excerpt)  06:29

Were you able to find housing here, I mean, after you,

Interviewee (film excerpt)  06:32

No, housing is--housing is the crisis of our lives. 

Aaron Goodman  06:37

You originally filmed in 1997, if I'm not mistaken, and there was a great scene of you using a payphone, which is fantastic. And, and the clothing of the time--it really looks like it's from 1997, and the film was released in 2013. And all filmmakers will appreciate the hard work and patience, and your determination to get the film out there, while you're dealing with a chronic illness. I want to ask you about your motivation for making the film. You say in the film, 'I wanted to meet others who were affected by MCS, and maybe find my own safe haven. I hired a camera woman and transformed my van into a new chemically safe home, I wanted to find out--how did others get sick? How were they coping with an often overwhelming and isolating condition?' You interview a woman in the film with MCS, and she says 'Housing is the crisis of our lives.' So you talked about this being an issue that remains so critical for folks with MCS. What was your motivation when you came up with this idea, I'm going to make this film?

Susan Abod  07:48

I made a film, the first documentary I made. called "Funny, You Don't Look Sick: An Autobiography of an Illness" was basically about the, you know, having this illness. And--and I took people on a tour through my house and said, 'Well, it looks like a normal place. But you know, there's no carpeting, there's radiant heat, there's no gas stove, there's no paint, nobody smokes in the building. So when I was done with that film, and you know, this was before email, it showed in 1995. And we-- it wound up going to a lot of support groups. And it was by word of mouth or newsletter or something like that. Then it dawned on me that I had this access to--in Boston, there was the American with Disabilities Act, had an arts mini grant available, and I was starting to have trouble with my housing. So I decided, I came up with the idea, how to meet others. I mean, simply what you said. And the--a film would be a great way to do it since I didn't have the resources, if I could get money in order to make my van accessible, money to hire a camera woman. So that's what I did. And we only had paper newsletters. And that's how I did it, from phone contact to phone contact to build up a tour of people to talk to. And that's how I did it.

Aaron Goodman  09:33

So you traveled quite a distance. Where did you travel to in this film?

Susan Abod  09:38

We started in Wimberley, Texas, which--there was--there was a community out there of people with chemical sensitivity starting to build a very casual community of people who were building from--they came from other places, and building alternative housing. So I started there, I went to Texas.

Aaron Goodman  10:01

And at the time, Susan, you mentioned people were raising awareness and communicating with flyers in the mail. People were still using pay phones, email was just coming on or not even yet. Was one of your goals to create awareness about this condition. One of the people you interviewed said she had met with a doctor who told her 'you're not crazy, you were poisoned.' But at the time you were making this film, were you trying to challenge some of the stigma that unfortunately, still exists to this day? Were you trying to show that exactly that--we're not crazy, that we have a real illness?

Susan Abod  11:31

I think that comes with the territory of just interviewing these people. I mean, I think the film had many goals. I mean, one was really for me to find other people that had MCS and to break my own isolation around it. I knew some people in Massachusetts, but I didn't know if it was everywhere. So I was curious if this has been going on for a longer time, or if I--if I'm one of the first generation I didn't, I just didn't know. So whatever connections I could get I grabbed, and just followed the line, you know, followed the path that led me through New Mexico and Colorado and Arizona. That seemed to be where people were migrating to get cleaner air, less mold, they just kind of naturally gathered in places. So by word of mouth, that's how I found it. So my focus was that if I am the narrator, and people can identify with me, and I can be pleasant enough, and have some humor, and all of that, they can identify with a regular person who has this issue and then meets others who tell their story, and they look pretty normal too, but they're telling these stories of what it was like for them, and their housing difficulties, and neighbors who spray pesticide, and how do they deal with that? And, yeah, it's to make it more part of the culture. You know, I mean, we're still on the fringe, people don't quite see it as a disability. Some people do. A lot of agencies do. And, you know, it's--this film was made in 2013, and filmed in 1997. And the story is the same. Yeah, we've got a payphone in there. But it's the same situation. I get a lot of calls about housing, and people are always looking for safe places to stay.

Aaron Goodman  13:47

A lot of people really searching and struggling to find housing that enables them to be safe, to be healthy. When you think back to the film, 'Homesick'. What do you think a lot of people had in common, who you met? A lot of them--was it that they had to leave urban areas and go into the countryside because you went to some pretty remote areas. Would you say that's one of the tactics that people used to--to get healthy, or to get away from chemicals?

Susan Abod  14:19

Yeah, I think there were a lot of similarities. Even though people had varying degrees of reactivity to different products. You know, one of the first houses we went to, there was a sign on the door that said, 'No perfumes, no pesticides, no, you know, lotions, or hairspray or smelling laundry detergent, you cannot enter this house' or something like that. And I thought, oh, that's a great idea to have that on your house, you know, so that people don't just walk in. And so there are a lot of general similarities of what people were looking for in housing. But there were some things that people could tolerate that I couldn't tolerate when I went to visit them. One woman made a house out of a particular kind of wood that was not toxic to her and was not processed in any way. And we did okay in the house. But we did better on the screened-in porch that totally surrounded it. So not all of the houses were. like. okay for me, but they were okay for them--what their level of tolerance was. But generally it was no carpet, no chemicals, no smoking, no new building materials, being away from the city where you just have more possibility of fresh air, as opposed to in the city where there's diesel exhaust, car exhaust, people doing all kinds of repairs and things right next to you in a really densely populated area. And I think most of us started, the ones that I know, that I interviewed, people were living in the cities or large urban areas, got sick, and had to leave, because they were getting sick from their environment. So they just kept looking. A lot of people moved out. But there were some people that were able to stay, especially if you had money, you know, you could make it happen.

Aaron Goodman  16:39

Yeah, speaking of money, it takes a lot of money to move, doesn't it--to move once, to move more than once, and also to move to the countryside and build, although people in your, in your film, build all kinds of homes, some that I suspect cost a lot of money and others that didn't cost as much. But do you think it requires financial resources to move into the countryside to get away from chemicals in urban environments?

Susan Abod  17:06

Yeah, it does. It takes money to move, whether you're chemically sensitive or not. I think that when people with chemical sensitivity are forced to move, they're usually in a crisis situation, that they have to leave immediately, because their house is really making them sick. So a lot of them go to places where they've heard that other people are being okay, you know, like they'll--outside where little communities had been made in, like in Snowflake, Arizona, or outside of Tucson, and Prescott, is, you know, outside of Texas, outside of Dallas, Texas, and they just go in their cars, and they build tents. And you know, they look for rentals, and then sleep in their cars and sleep in the driveway of the place if they can't find a safe place. And some of them never do. And you know, I know several people who've been permanently living in their cars. So yeah, I think money is really important. It's a very expensive disability to have.

Aaron Goodman  18:20

Susan, in the film, you interview a doctor, Dr. Elliot is her name, in New Mexico, who talked about quote, 'turning this disaster into helping others.' So a doctor who has chemical sensitivity herself. I wanted to see if there's a parallel there with your filmmaking. Did you feel that by exploring your own illness and going on this journey to interview folks who have had to move or trying to find all kinds of housing--were you trying to help others?

Susan Abod  18:55

Absolutely. After I talked with her, there's a section in the film where I check in with the camera and say, how moved I was because she asked these questions at a general talk. You know, how many of you have unexplained headaches? How many of you have fatigue--four or five basic questions. They're in the film. And by the time she was asked five questions, everybody had their hand up. And she was able to say, look, this is your--you are being affected by your environment, you know, your body is being affected. So her--she wrote a book with an architect called 'prescriptions for a healthy house.' And I thought that was so cool, you know, a doctor and an architect. And I interviewed both of them in the film.

Aaron Goodman  19:56

When you think back to the time you started making this film in the 90s. How do you view the way MCS has unfolded? I mean, we know that millions of people are continuing to develop the illness and trying to be--get acceptance from the families and get help from doctors and get proper housing. How do you view the way the illness has unfolded? And the way it's perceived since you made the film?

Susan Abod  20:27

Well, in some ways, I--only because I've had it for 40 years now that it seems like more people know about it. I live in a city in Santa Fe that they do have more awarenesses. There are more doctor's offices that have a fragrance free policy here. There are, you know, even hospitals that are doing that. And I think that that is shifting. And since I got sick, there's been a trend of products, having things free and clear, which, it was very hard to find products in the early days, back in the 90s. And it's still kind of challenging to find a shampoo that I can tolerate. But for the most part, there's been a large swing in terms of consumerism, around the trend for less chemicals, because everybody's thinking, 'that's a good idea.' They don't necessarily equate less chemicals with less fragrance. And green doesn't necessarily mean safe either, for people with chemical sensitivity, but it's a help. So I say, yeah, there's been a shift. But I would also say that a lot of the publications that came out about 20, 30 years ago, a lot of them are no longer around. Like the Toxic Times or other--Heat the Heal magazine, and I don't know of other people who've, you know, picked up the torch, but there sure are a lot of people that are ill. And the reason why I know that is because my friend who's a MCS consultant gets calls every day from people all ages, mostly, she said 20s 30s 40s 50s that have chemical sensitivities. What are they gonna do?

Aaron Goodman  22:39

If we go back to the film, the focus of the film is on that search that many people who have this illness undertake to find housing that is safe for them. And that still happens, right? And it's very tragic. You explore in your film that some people with chemical sensitivity end up choosing to end their own lives, because they just can't find it. And we know that that still happens, tragically. How do you see that situation, Susan?

Susan Abod  23:08

Well, I do. I do understand it. When we made the first film, we found statistics of people who ended their lives due to MCS. Then we--when we filmed the second film, and even the, in the process from 97, to the film's finish in 2013, there were more deaths. And I understand it, I had to deal with it myself. And it's a question of, if you can get enough support and not be isolated. I think that the people who stay in touch with others who have MCS, who can maintain their support mentally, in any way they can. There's this wonderful group called MCS friends, which is a phone support group that's a monthly thing. And they also have a lot of Facebook groups that are around chemical sensitivity. So--and I, I was in--and you know, part of a 12 step program that really helped me. There's actually a 12 step program around living with pain and chronic illness. And that has been extremely helpful for me. And there are a lot of people there that actually do have chemical sensitivities. In terms of being able to relate to the constant stress that can be MCS, if you're--especially if you're in a crisis.

Aaron Goodman  25:01

When it comes to housing, and your film 'Homesick' explores people's searche for safe and healthy housing, would you say that if people have that in place, housing that works, that allows people to be healthy, does that make all the difference? In other words, without safe and healthy housing, without a safe and healthy place to live, it's very hard to go on. Right? Would you say? So is that housing piece just fundamental? And when people have it, does it make a huge difference in their lives?

Susan Abod  25:36

Oh, of course it does. Yeah. I mean, this, I moved into the place where I'm in in 2018. And it took about maybe two or three months to make it safer for me, but it was a pretty safe place. So I have the stability of being in a community. Unfortunately, sometimes the community wants to do some scary things like use things that aren't necessarily safe, but for the most part, they have an eco friendly way. It's a non-pesticide community. So the relief that I felt, and still feel, allows me to just be, you know, to just be and do my life, and to not have to deal with a landlord, who's going to tell me 'I'm painting the building next week,' or, you know, something like that, 'we're redoing the streets with, you know, tar', and you know, 'we're doing the roof' and you know, just, where you just have to bolt, you just have to bolt so that you don't get really sick. And so it gives me a lot of peace of mind. I feel very, very lucky. Very, very lucky.

Aaron Goodman  27:02

And you say it allows you to just be, right? Just to be. And that's very powerful to hear that. And I wonder, as we perhaps move towards wrapping up our chat, if you have any thoughts on do you think it's the role of government or others to do more to provide safe and healthy housing for people with chemical sensitivities? Because we know there are probably countless folks, some of whom may be listening, who are struggling to find housing that works for them, and maybe they don't know how they're going to get it. In your view, as someone who's explored this issue in depth for a long time, it's been on your mind, you've lived it. Is it government's role to step in and do more to help, would you say?

Susan Abod  27:48

Well, I do actually think it is part of the government's responsibility to help people with disabilities, you know, to--when you're talking about accessibility and ADA, you know, they're building ramps, they are making, you know, technical things available to aid people with disabilities. And for this to be seen as a disability. And that low VOCs. And, you know, safe building materials to be seen--have that be seen as a part of what makes a place accessible for people with chemical sensitivities would be a start. Ecology house in Marin County got its funding in the late 1990s, around that time, and they built a 17 unit place, and they got local, federal and housing funds. But there haven't been very many places like that. And the way our governments are right now, we are so low on the totem pole of needs right now that we really, the tragedy is we have to fend for ourselves, you know, there really isn't, I mean, in an ideal utopian world, sure. Yeah. The government help would be great, the power of the many helping, you know, people that are disadvantaged. But I think it's more falling on the people that are sick, that are having the hardest time being able to function, they have to find their own place within so many barriers of money, and if you're on a section eight, and you know, how in the United States, that's a government housing subsidy, and they have all sorts of rules and regulations. And anybody who's even collecting disability from the government, there are all these rules and regulations about how much you can work. 

It's so challenging. But to know that there are resources. I think that's the whole point of the film. Originally, the film, my first film, came with a little booklet of resources. But now, because we have the internet, there are places where there are resources, and I'm so grateful to have found your podcast, and I'm grateful to be able to connect with you and share my resources with you where people with MCS can help other people with housing, because that's how we're doing it. So I'm very grateful for Zoom. And it's opened up my world, as a person with MCS, I can have more connection to the world. 

So I hope that answers your question. I mean, ideally, yeah, I do think it's the government's role to deal with people with disability and access, just like any other disability. But we're still at the education level. We're really at the education level, like people just don't know about it. So it's got to get out there more. We need to get the film out there more and more podcasts like this, so that it becomes part of the culture, in a larger sense. That there are options, just more options for people,

Aaron Goodman  31:32

I really appreciate you taking time to speak with me, Susan, and for all the work you do, and for the films that you've made. And I'll share links for folks and information about how people can download your films and listen to your music. And was there anything else you'd like to add? Before we close, Susan?

Susan Abod  31:53

Well, I'm thrilled that, Aaron, that you're doing this podcast, I'm just so happy. And I'm gonna do whatever I can in terms of my resources to help get your podcast out there more. Because what we need to do is get the word out and get help to those who need it, even if it's just support and brainstorming, on housing alternatives. If you--you know, what to look for, what to get--take out of your house, you know, how to mitigate the situation--you know, apartments that really aren't accessible, but how can you make them accessible? You know, just a lot of help nee--is needed. So I'm, I'm glad that you found the film, that you found me. And we'll get it out there as much as we can.

Aaron Goodman  32:52

I wanted to say that I feel that this podcast is sort of building on the work that you and others have done, you know, in terms of the communication and the education about MCS, and the filmmaking, so super grateful for what you did. And this is sort of just a 2022 version of the film. And as you mentioned, those online groups and the Zoom calls, you were reaching out to people, you were driving your car, using pay phones, at a time when--and following leads in printed flyers to find folks. So you're really, I see you as really a pioneer in this field, creating awareness, connecting people. If you hadn't done that, I probably wouldn't be doing this podcast, you know. So you really laid a really incredible foundation. That's really quite moving for me to look at. So I'm so grateful that you're able to be part of this podcast. Again, I'll be sharing links to your music and your films. Thank you so much, Susan, for everything.

Susan Abod  34:03

Oh, you're so very welcome.

Aaron Goodman  34:05

That brings us to the end of this episode of the Chemical Sensitivity Podcast. Thank you very much to Susan Abod for speaking with me. The podcast is produced by me Aaron Goodman and Kiana Holland. 

We release new episodes twice a month. Subscribe for free wherever you get your podcasts. Leave a review on Apple Podcasts. It's a great way to help others find the podcast. Follow us on social media. Just search for the Chemical Sensitivity Podcast or Podcasting MCS. If there's someone you'd like to hear interviewed on the podcast or a topic you'd like us to explore, just let me know. Email me at info @ chemical sensitivity podcast.com and thanks so much for listening.