[00:00:00] Aaron Goodman: Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a longtime 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 chemical intolerance, Toxicant Induced Loss of Tolerance or TILT and Idiopathic Environmental Illness.

The illness affects millions around the world and the number of people with MCS is rising just about everywhere. Living with MCS means dealing with a range of overlapping symptoms including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes, and more.

Small amounts of chemicals and synthetic fragrances in household and personal care products, paint, construction materials, along with pesticides, cigarette smoke, carpets, plants, and more can spark a cascade of debilitating symptoms. Dismissed by healthcare providers, employers, even loved ones, many feel misunderstood, isolated, and invisible.

This podcast aims to change that. We delve into the latest research. and speak with all kinds of people impacted by MCS. You'll gain important knowledge, a sense of validation, and learn about navigating the realities of MCS. We also explore wider issues connected to toxic chemical pollution, and how individuals and communities are pushing back against it and the harms it causes.

This is a special episode and part of the Chemical Sensitivity Podcast's ongoing Book Club and Film Club series that we aim to bring you from time to time. If you have any suggestions for books or films focused on MCS that you'd like me to explore, just let me know. Today, we're talking about Safe, the 1995 film directed by Todd Haynes.

It stars actor Julianne Moore, who plays Carol, an affluent woman with MCS who lives with her husband and stepson in San Fernando Valley in California, and like many people with MCS, she struggles to find a doctor who doesn't dismiss her and tell her that the MCS is all in her head. The illness complicates Carol's relationship with her husband, her friendships, and virtually all areas of her life, and she's essentially alone. 

I've invited two podcast listeners with MCS to speak with me about the film and share their thoughts. Kae Donais is a public servant who lives in Toronto. Chantelle Kirk worked as a school teacher and was an avid trail runner before she developed a chemical injury in 2018. Chantelle lives in Georgia and actively advocates for environmental health through independent research and community outreach. 

I'm really grateful for both Kae and Chantelle for watching the film, which isn't necessarily an easy watch, and for listeners it can be triggering because it's filmed in a semi horror style and its depiction of MCS could be seen as unsympathetic, which is what you'll hear Kae, Chantelle, and I discuss.

[00:03:25] I wanted to invite you to dive into the film a little bit and have the overall impressions you'd like to share with folks. Kae?

[00:03:34] Kae: Yeah, I'm still grappling with viewing it as a film, as a story, and as somebody who doesn't know what Multiple Chemical Sensitivity or environmental illness is, as they're describing it in that film, you would view it through one set of eyes.

And as somebody who does experience and reactivity to the products that are highlighted in this film and the process and the experience of the lead character, I view it very differently from somebody who experiences, you know, reactivity in the way that character does. It's very hard not to watch that film and not feel the threat of some of the things that she's experiencing.

I think they actually create almost a PTSD response in me watching it. 

But then as I go back and look at what critics had said about the film when it was released, this is, it's this mysterious illness. It's, she's paranoid and there's a very disheartening feeling that comes along with recognizing that the filmmaker himself intended it as a metaphor and an allegory, and isn't even really identifying a film about MCS or about environmental illness. 

[00:04:44] Aaron Goodman: Yeah, so about the allegory, do you want to just talk a little bit about what kind of allegory you think is intended? 

[00:04:49] Kae: You know, I, this is one of Todd Haynes, it's one of his first films. He's finding his voice with this film and he's done subsequent films that are very similar in theme and materials. It's extraordinary to me that this film is almost 30 years old.

So many people would still view this as, you know, the allegory of a paranoid housewife in a gated community. He's really making commentary on society and the industrial conflicts that we have as people trying to live inside of this industrialized world environment that we all find ourselves in. I think that this film also comes, around the time of the first AIDS epidemic in North America.

And I was alive for that and so it resonates for me in terms of some of the things that he's giving voice to with that epidemic and what the experience of that created both for the individuals, their families and for everyone in society. So there's a lot of commentary, I think that's woven through that, that isn't necessarily about that particular environmental illness.

[00:06:06] Aaron Goodman: Well, thank you so much. And the central character is played by Julianne Moore, and the character's name is, is Carol White, and she lives with her husband and stepson in the San Fernando Valley in California. And Chantelle, what would you like to share your initial impressions of the film?

[00:06:25] Chantelle: Yeah, with the title being so plain, you know, just one word safe, you know, that, that was interesting to me of how the intro to the movie was the gated community and the house with the, that's supposed to be ideally what safe is having those boundaries and then go to the end of the movie and you know, where she was safe, her, was actually out in the open away from all of that. And so even the title of the movie Safe, that has to be defined in different ways based on what's going on in your life.

[00:07:01] Aaron Goodman: This film Safe was made or released in 1995 and that's already quite some time ago. Kae, you have some thoughts about that. Do you want to let us know what you're thinking?

[00:07:13] Kae: Yeah, well, you can't help but wonder how has this stayed under the radar so long, you know, there's millions of people that are impacted by MCS, environmental illness around the world, and yet 30 years have gone by and so many people will still watch this film and not realize that it's speaking about a very real problem.

Experience a very real and studied and researched condition. So it's disheartening as someone who actually suffers from the debilitating effect of MCS. To see that it's still considered psychosomatic by so many people, but it's still considered a mysterious, or not real, affliction.

[00:08:04] Aaron Goodman: Right, and I think that's one of the major themes from the film. Time and time again, Carol White goes to a doctor and the doctor tells her she's in perfect health and that it is all in her head and, and it creates sort of a sense of doubt within the character, you know, she says, well, maybe I'm just stressed or it was caused by a detox diet I was trying. 

But it's an experience that many of us have had, right, with healthcare professionals telling us this is in our heads. There's a moment quite early on in the film when Carol is sitting still in her home and the camera zooms in on her and Carol doesn't have much expression, but I get the sense that Carol is trying to figure out what's going on in her body.

And there's a reckoning with the magnitude of having Multiple Chemical Sensitivity. I mean, I've often sort of found myself in moments where I do that similar kind of reckoning. Wow, how am I going to deal with this? What is life going to look like now? And I know for you, Kae, you mentioned, you know, you've had Chemical Sensitivity for some time, but fairly recently it became much more challenging.

What did you think of that moment in the film where Carol seems to be sort of considering the weight of this condition?

[00:09:26] Kae: I think that there's actually several moments like that. My sense and also was that she's struggling perhaps with brain fog. So I thought Julianne Moore gave a very understated performance in terms of that dilemma of meeting the fight or flight thing.

I thought that was one place where the film failed a little bit to give the extreme response that a fight or flight reaction that many of us would would know and understand the outburst that can happen if we are exposed to something that inflames the brain. 

For example, and can, can really be dramatic, but the, the slow demise of her, her marriage, for example, her inability to interact with society, um, there's many subsequent scenes where it gets quite serious and she ends up in hospital.

And I think that, that all of those earlier moments are foreshadowing that, that point where she recognizes she needs more help than. Her husband can give her, then her doctors can give her, and she reaches out to that group that, that ends up where she goes next. You know, there's a grieving process inside of that experience as well, which I think, um, or the film managed to touch on with her performance.

[00:10:48] Aaron Goodman: Yeah, there can be, a real challenge of going to doctors and being misdiagnosed, you know, being told it's all in your head and a real difficulty there that many of us go through. And you mentioned at the end of the film, Carol goes to, like a residential haven for people with MCS, um, but it's only until then that she keeps confronting the misdiagnosis and the being told it's in her head. 

You mentioned Carol's marriage with her husband and there's a lot of tension and at one point the husband is quite angry and frustrated and he said, who gets a headache? And I don't want to hear about it - and she sort of apologizes, I know it's not normal, but I can't help it. So again, the sort of, sense of insecurity I read from her. Chantelle, what did you make of the challenges that Carol goes through in terms of her relationship with her husband?

[00:11:45] Chantelle: I did kind of feel for the husband because, you know, it's like, you know, what was he supposed to do?

[00:11:52] Kae: Yeah, it was hard because he didn't, he was just as badly informed. He was also lacking. any useful information to understand and have a more empathetic response to what his wife was experiencing. It was very sad. 

[00:12:05] Chantelle: I like how Kay was saying that she didn't have the information. She didn't have the knowledge and it's so important when you are experiencing this that you, I mean, I'm reading books, you know, I'm listening to podcasts. I'm, you know, it's not just something that you can just look at a website. Or just look at one article. I mean, you really have to throw yourself into learning so much in order to know how you can thrive with the flares, with the hits, with the exposures.

[00:12:42] Aaron Goodman: Again, the film came out in 1995, and there wasn't a lot of Uh, readily available information back then and there's still not enough.

[00:12:50] Kae: Yeah, I think there's this element of dismissal that the, the marriage represents in this film that, that very well. And, and it's something that anyone with this condition watching that film will recognize immediately.

Is that level of dismissal to the point that the person begins to doubt themselves. In certain cases, you know, am I just being overreacting? Am I being overreactive? And there will come a time though, and has happened to me, where you're, you are so extremely impacted that you can no longer pretend that you can manage this without some kind of intervention, which is what Julianne Moore or Carol White finally came to.

And it, and it's ironic that what she ended up in was a haven for, you know, positive self talk, and that was very popular in the late 80s and 90s. There was a real surge of that type of healing. But this isn't a condition that you can talk yourself out of. And now, now there's a lot of scientific and medical research to help explain what's going on with, you know, the receptor cells and the way that the vagus nerve gets, and the trigeminal nerves get impacted. So there's a lot more information that we're dealing with. However, the level of dismissal for any of us at any time is still very high. 

[00:14:11] Aaron Goodman: And I just want to give a shout out to all the partners and friends and supporters of people with MCS who may be listening, who do take us at our word that this is, this is a true illness and we are seriously impacted.

The character Carol White is, you know, described and is portrayed as someone, affluent lives in a gated community, as you said, Chantelle. I wonder what you made of that? You know, at the time, it was common to refer to MCS as a yuppie illness or a wealthy women's illness. But we know, in fact, people who have less financial means, Black, Indigenous, women of colour are impacted disproportionately by this illness. What did you make of, of how Todd Haynes chose to focus on a Caucasian who has, has a relative amount of privilege?

[00:15:07] Chantelle: In a way it shows that even with that privilege, people are vulnerable. You know, it's like their lives change drastically. Because they were able to do all of these things and and then all of a sudden it's taken away where, you know, there's things that I can't do, but I'm thankful for all the things I've done in the past and I'm okay, you know, but if I had a certain lifestyle that was just yanked from me. That would be wild. 

[00:15:36] Aaron Goodman: Kae, any thoughts on Todd Haynes decision to focus on a woman with privilege or affluence?

[00:15:45] Kae: Yeah, I think that's another one, you know, sort of of the time and his way of making social commentary. You know, one of the films that Todd made later was the film Dark Waters.

Which is the story of 3M's involvement in the Teflon, scandal. He has this way of creating environments of, you know, threat and, and someone rising through it. And anyways, I find the fact that Carol is in a gated community in a film called Safe - as Chantelle pointed out at the beginning - very revealing about where his narrative is leading us.

Carol is anything but safe in that gated community. And I think that's a big part of the statement that he's making. People with MCS resonate very well with the phrase, nowhere to run, nowhere to hide. And I think that there's an element of that in his commentary. So economic, socioeconomic status is irrelevant when it comes to these issues.

[00:16:49] Aaron Goodman: You know, we talked a little bit about how the reactions that Carol experiences are portrayed and, and often it's quite subtle. There are a couple moments when Carol reacts and her nose bleeds and she has difficulty breathing and it seems to induce panic for Carol and there's dramatic music and at one point it felt like to me, as a viewer, that she was falling deep into water, after she got a perm and to me that was quite a dramatic moment and you mentioned, Kae, that Todd Haynes focuses on specific products that cause harm, right?

There's a close up on the hair and curlers and the chemical being applied and we talked about the hairspray in the home. What did you make of that depiction of in those rather dramatic moments because those may not be fairly typical. I know for myself, my nose doesn't bleed when I have a chemical reaction. I don't go into anaphylaxis. I wonder why Todd Haynes chose to dramatize it in that way. Do you think that's helpful?

[00:17:57] Kae: He chose things that had a very strong visual impact. You know, his entire cinematography has a very haunting, threatening element to it. My symptoms aren't extreme enough that I go into anaphylactic shock or, or seizures.

But there are people like us with our condition who do, and I'm aware of that, and I'm sensitive to that. I felt very threatened by those products and those scenes in a way that I might not have even watching the film in 1995. But my symptoms have worsened to the point where I felt very uncomfortable with those scenes.

And how aware Todd Haynes and the people that made this film were about that issue when they were making it, perhaps to a degree, I think that there is an element of where this film is informed by actual experience. People actually experiencing this, that he then dramatized. Those scenes are just very uncomfortable to watch. So, you know, almost a trigger warning for people with MCS that are watching this film.

[00:19:05] Aaron Goodman: Yeah, no, it's a really good question that you raise about. I wonder how much research, or how many, if you talk to people with MCS, if he has any experience with it. Those are interesting questions that I'd like to know.

Chantelle, anything you'd like to share about the hair salon scene getting the perm the very dramatic reactions Carol has?

[00:19:27] Chantelle: When I'm seeing the those particular things, I'm like, oh, can people be informed to make better decisions because until you have some of the even mild symptoms compared to Carol, then you don't know, you're not going to change your behaviour.

I guess, you know, you're not going to kind of make that connection of that these products are causing these reactions when we have a health system that's all about, okay, here's your symptom. Let's fix this symptom, but don't go to the cause. We're just not going to be well.

[00:20:04] Aaron Goodman: Another thing that resonated with me was when Carol finally sees a doctor and the doctor may be an allergist and they do sort of a traditional allergy panel on her arm, but for chemicals too, and she has a deep reaction to a chemical.

So there's sort of a sense of recognition or validation from the doctor and the nurse that yes, you are reacting to chemicals and when we, when I have had the opportunity to speak with doctors who validate me, um, It's really like nothing else, you know, it's really like, Oh, I've been waiting for this. What did you make of that, Kae?

[00:20:45] Kae: You can't underestimate it. There is so much resistance. The person is suffering physically and to sort of climb that mountain every day and then have someone sort of greet and acknowledge you or confirm that suffering is extremely powerful. It can't be underestimated. I've had that experience Aaron, and one person can make a huge difference in someone's life.

I think Carol is looking for that, and never really finds it, but there's an interesting moment where she goes to heal in that group that she's with. They're having a group session at one point. Everyone's trying to sort of rise above their negative feelings, except one person who's extremely angry about what they've been subjected to, and it's another one of those moments that kind of goes by, but if you've been inside the experience of being dismissed or feeling assaulted by, you know, products and, and, um, ingredients in your environment that you didn't consent to being exposed to, there's a real resonance, I think, with that person that has an angry response, that felt very honest.

[00:22:04] Aaron Goodman: I'm really glad you raised this, and also at the haven at the centre, Carol has an emotional release and a woman who works there tells her it's completely understandable. You might feel angry, feel fearful or lonely. There's a release. There's a comfort. I felt that Carol experiences a joy from being with others, others who get it.

And it's interesting, you know, doing this podcast, I often hear from people with MCS that they haven't ever really been in community or talked with others with MCS. It's kind of shocking to me. And it's my experience too, before I started this, even though we may be up to 35 percent of the population in the US and similar in other countries, it's kind of rare to have dialogue with other people who have MCS.

So what about the moment of joy or understanding or solidarity coming together with others? Is that something you've ever had a moment of experiencing Chantelle?

[00:23:00] Chantelle: Yeah, I've done some, Zoom meets with other people with Multiple Chemical Sensitivity and I try to be a part of the social media groups when I've gotten back on social media. It's good stuff.

[00:23:16] Aaron Goodman: How about you, Kae? What did you make of those moments when Carol is with others?

[00:23:22] Kae: It felt so helpful and hopeful when she first arrived at that healing haven. Where she went to try to address her symptoms, it was so hopeful and then something shifted. You know, she ended up more isolated in some ways. I don't want to, you know, give away too much about what happens after that. 

I think that, we really aren't in this alone and anyone I think who is struggling with this condition on a daily basis is aware that we represent others, when we make choices, when we take a stand, when we ask for things, when we take a moment for an educational component. 

The educational component of this condition is, is it's continuous. It just goes with the territory. We are having to inform and at first I felt very exhausted by all of that. But, but there's been a shift recently where because I've had a few people who actually are listening, it is a one person at a time educational campaign. 

Every win is a win for all of those people, including those children who are coming up behind us, who are also not asking to be exposed to these kinds of harmful chemicals. And so any progress we can make in terms of awareness, in terms of better protections and those kinds of things is worthwhile. So there is a community, but there is also a sort of a need for the village to come together around the issues of safety and accessibility.

[00:25:10] Chantelle: And this was kind of refreshing that it was, you know, a filmmaker that, that was bringing this story out and this information out.

[00:25:21] Aaron Goodman: Absolutely. And, I'm curious to see how other filmmakers will address Multiple Chemical Sensitivity, chemical intolerance, Toxic and Induced Loss of Tolerance going forward.

So, thank you so much for joining me and sharing your thoughts and for listening, doing all the homework to watch and consider these issues with such depth. I appreciate it. 

You've been listening to the Chemical Sensitivity Podcast. I'm the host and podcast creator, Aaron Goodman. The Chemical Sensitivity Podcast is by and for the MCS community. The podcast is supported by the Marilyn Brockman Hoffman Foundation and listeners like you. 

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The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman and made possible with funds from the Marilyn Brockman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about Multiple Chemical Sensitivity. 

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