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I’m speaking with author Marcus Sedgwick, who wrote the book “Snowflake, AZ,” published in 2019.
The novel focuses on Ash, who travels by Greyhound bus to find their stepbrother Bly, who was last seen in Snowflake, Arizona. It’s a community where many people with Multiple Chemical Sensitivity (MCS) have settled, at an altitude of 6,000 feet in the desert, to get away from chemicals that are all too common in urban environments.
In our conversation, Marcus explores:
● How the character Ash first views so-called canaries, people with MCS who live in Snowflake, and how the character's views shift when they develop the illness.
● His experience visiting the community of Snowflake, AZ, and getting to know people with MCS who reside there.
● How long COVID may be changing the way some authorities in some countries are responding to chronic illnesses.
More about “Snowflake, AZ” and Marcus.
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Aaron Goodman 00:04
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.
This episode features a conversation with Marcus Sedgwick, author of the novel Snowflake, Arizona. Marcus is a highly prolific writer, has published over 40 books. Originally from the UK, he currently lives in France.
The novel "Snowflake, AZ," published in 2019, focuses on Ash, who travels by Greyhound bus to find their stepbrother Bly, who was last seen in Snowflake, Arizona. It's a community where many people with multiple chemical sensitivity have settled at an altitude of 6000 feet in the desert to get away from chemicals that are all too common in urban environments. At first, Ash is intrigued and slightly perplexed by the community they find — people whose illness is widely misunderstood and dismissed by clinicians, and who are often rejected by their own families. It's only when Ash develops MCS that they begin to consider challenges the whole planet is facing. In our conversation, Marcus talks about how the character Ash first views so-called Canaries — people with MCS who live in Snowflake, and how the character's views shift when they too develop the illness.
Marcus talks about his experiences visiting the community of Snowflake and getting to know people with MCS who live there. He also talks about long COVID and how it may be changing the way authorities and some countries are responding to chronic illnesses.
I hope you enjoy the conversation and find it of benefit, we release new episodes twice a month. The best way to never miss one is to 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.
MarkUS Sedgwick, thank you so much for joining me on the Chemical Sensitivity Podcast. It's wonderful to connect with you.
Marcus Sedgwick 02:34
My pleasure. Thank you for inviting me.
Aaron Goodman 02:36
Absolutely. It's my pleasure. I wanted to start perhaps with inviting you to talk with our listeners a little bit about your novel "Snowflake, AZ." When did you write it? When did it come out? And briefly, what's it about? Because not all people will be familiar with snowflake? Some will, but not all so if you could give us your brief summary, that'd be amazing.
Marcus Sedgwick 03:02
Sure. Do you know, I can't remember when it came out. But I think in the States and in Canada, it must have been--I mean, it was right at the start of the pandemic, the timing was either very, very appropriate or, or terrible, or both, given that it's a book about people living in isolation, wearing masks but, you know, for a different reason. This is a book about people with multiple chemical sensitivity specifically, but by extension, anyone with a chronic illness. That's of some disputed nature, and what happens when you have to live with that kind of prejudice and your own confusion over what's happening to so yeah, I think this is a book I didn't actually mean to write, in that it was my own personal journey, trying to find out what was wrong with me, that took me to Snowflake, because I've read a newspaper article about the community of people there. And it seemed either by this point I was already, I don't know, three, four years into my illness and searching for answers everywhere and anywhere. And I was able to take the opportunity to go to Arizona and meet with the guys in Snowflake, really to see if what was happening to them looked anything like what was happening to me. And I really didn't intend to write a novel about it. But I did. In the end, as a writer very often, I don't believe you actually choose what you write about, your subconscious chooses it for you. And by the time your conscious mind gets to know about it, it's way too late. So yeah, eventually I did write a novel about a young person who goes to visit someone else in this community but then realizes that they themselves are also sick.
Aaron Goodman 04:46
Right. And at the time, where were you living, and you had to get on an airplane I'm assuming to get there and a lot of travel involved.
Marcus Sedgwick 04:54
That's right. Yeah. I live in France. When I wrote the book I was living in France in a different region to where I live now. But my, my health was always, in those days, up and down, you know what it's like you, you manage what you can do, you make gambles, and I was promoting a previous novel of mine, a novel called "Saint Death." And my US based publisher wanted to take me around the country, which I did. That in itself was a challenge, I have to say. We managed it, using all the assistance I could get. And I have to say my publisher was amazing, because they would do things--like if I was wiped out, they would like block out a hotel room for the day, not even for the night, just so I could go and crash for the day, they were really supportive. And I can't thank them enough for that. But at the end of that book tour, I jumped on a little plane out to Phoenix, and then on an even smaller plane out to Show Low Arizona and then was picked up and driven out to Snowflake to meet the lovely people there.
Aaron Goodman 05:51
And for listeners, do you have chemical sensitivity? Or do you have a comorbidity? How would you define your illness, just to situate yourself.
Marcus Sedgwick 06:04
Having been out of Snowflake, I don't think I have Multiple Chemical Sensitivity. I think I was close to it at points, I'd started to sense that certain things were affecting me such as bonfire smoke, I'd realized was starting to affect me, perfumes were starting to affect me, but not in a, you know, not in a serious--serious way, like many of your listeners will be all too familiar with.
That is backed off in recent years, I'm fortunate enough to say, you know, broadly speaking, I'm told that what I have is ME/CFS. And again, there's a massive controversy and dispute over who gets to name these illnesses, and what's behind the names of these illnesses, which many of your listeners will be familiar with too. But I do know, you know, for example, my worst periods with ME/CFS, the thing we call hyperacusis, the, you know, the sensitivity to sound and light, which seems to have--seems to me to have quite a large overlap with the MCS story.
So, you know, who knows exactly what's going on, you know, I begin to have some suspicions about it. I don't think I have MCS, although perhaps I should have started with this very thing. When I, even before I'd read about Snowflake, which was my introduction to MCS. And I'd been thinking about the fact that I was ill, and I'm a novelist. And you know, I was really resistant to writing a novel about myself and about being sick, I did not want to do it for a whole bunch of reasons that I won't bore you with. But one of the things I had decided, was that if I ever were to write a novel about being sick, in order to distance it from MECFS, I would create an acronym for this illness that sounded like something tremendously tragic, and decided to use my own initials, which are, in fact, MCS, and then discovered that it's a real thing. So it just felt like one of those little moments of synchronicity, you know, and in the end, as I said, it's a fool's errand to fight against what the gods of writing in your subconscious are telling you to write.
Aaron Goodman 08:08
So for folks who haven't read your novel "Snowflake, AZ," could you talk a little bit about the central character Ash, what is the journey that they embark on? And what do they experience when they arrive in the community?
Marcus Sedgwick 08:21
The central character in my book is a young person called Ash, and Ash goes to visit their stepbrother Bly, who has kind of dropped out of society as you know, people with MCS frequently have to and has just gone to pick up again, and, with Bly, and then very quickly in talking to the local people, the people in the community, and witnessing things that have occurred to they themselves, Ash realizes that they themselves are perhaps becoming sick and they really don't want to give this credit at first, and I think it was important to me to paint that that journey for Ash because I mean, I can't speak for other people but it was my own personal experience of becoming sick is that to start with I just wanted to reject the notion entirely, you know, I could clearly see I was ill and yet I ignored it. And I kept on pushing through and I, you know, kept on with my duties and responsibilities and workload and all of those things until finally it all came crashing down. I couldn't fight that case anymore. So that is Ash's journey of, you know, disbelief and which becomes curiosity, which becomes doubt which becomes acceptance, and it turns into a seven year journey for Ash in this in this community.
Aaron Goodman 09:48
I'd like to invite you to read from an early part of the novel where your central character Ash arrives in Snowflake and begins to observe how people live in the community and it's quite different than what they're used to seeing,
Marcus Sedgwick 10:02
I I will read this passage, I will say that I'm not going to attempt to do the voice that's in my head, because the voice in my head is an indeterminate accent of a mixture of American accents and genders.
"And then she went on and she went on, and she told me that the walls were covered in tin foil to keep all the chemicals inside them just that--inside--and away out of the air. She said how the way we make houses is crazy, what with all the chemicals we put into things. So if you had MCS and you couldn't afford to build a safe house from the ground up, if you had to buy an old house and make it safe, what you did was you painted cornstarch on the walls, and then stuck Reynolds Wrap over it all. And that seals everything bad inside behind the foil and keeps it away from the Canary. And then finally, finally, she told me that Bly had a deal of MCS that was okay with electrics and it was okay if he was careful and stuck to the rules. And I said, like the mask, and she nodded and said, you know, you could crack open a book. wouldn't kill you. I got one or two that explain things. And then she got up and pulled that very book I'd been looking at off the shelf. And that finding was a real coincidence, because there were a million books on that bookcase. Easy. Maybe two. She winked at me and said, you can read right? And I nodded. I'll put a light on outside, she said, on the porch. And maybe it's about time, you need to be outside again. And maybe we could think about eating something. And that sounded good, because I suddenly realized I'd eaten nothing since I could not remember.
So while she started fixing something in the kitchen, I went back out and sat on a red plastic chair with a light overhead of me. I flicked open the book like you do, when you don't really want to read it from the back to the front, and I saw a whole lot of things I didn't understand right off the bat.
By the end, I ended up at the front with the name of the person that wrote it. And that turned out to be Mona. I looked at her through the back door, as she stood staring at the inside of the refrigerator, with her hands on her hips, as if everything inside was misbehaving itself. Then I looked back at the book she wrote, and right under her name, it said, for all my friends who lost their lives to environmental illness, and I thought, huh. I went over to see Mona. Mona, I said. What is it, kid? And I said, Bly is really sick? Uh huh, she said. But he's gonna get better, right? Mona looked away from the mischievous food and peered at me. Sure, she said, depending on what you mean, by better. Then the door swung open, and in came Bly. He'd been taking that fourth box of groceries out somewhere, and he was wet to the skin. And he looked at me on the porch and nodded and said, Snowflake, and grinned. And then looked at Mona and said, What's cooking? And then we ate soup."
Aaron Goodman 12:46
Could you say a little more about how Ash feels about and experiences Snowflake, Arizona, it's their first time there. And people have older cars or cars where the electricity has been removed, or they've put tinfoil on the walls of their homes. Maybe you could tell us a little bit about Ash's, initial observations and feelings in the community.
Marcus Sedgwick 13:10
Yeah, Ash is initially confused, I would say at best and sort of shocked at worse because they've gone to see the stepbrother Bly, as I said, and I wanted to very much--I think it's really important that I took Ash on the same journey that many of us do, both with ourselves, if it's ourselves that have fallen ill to something that we're not understanding what's going on. Because, you know, again, I can only speak for myself, but that absolute confusion and alarm that you don't even understand what's happening inside yourself. And certainly, then, if you witness it happening outside yourself in somebody you love, a member of your family, a friend or someone, it can be really hard to understand. And I think, you know, all too sadly, that's one of the things that many of us who've been on this journey recognize is that absolute mountain of understanding, you know, not just for ourselves, but that our loved ones, our friends and families have to go through too. And so it was important, I think, that I took Ash on this journey of doubting-- disbelieving what was going on, doubting it, that slow, gnawing feeling that oh, God, perhaps actually this is really true. And then finally getting to a place of acceptance.
Aaron Goodman 14:26
Could you talk a little bit about what lengths people in Snowflake go to? We've talked about their homes, and I mentioned the cars, that they buy old cars and let them off gas. But what kind of steps do people take? I mean, just migrating out to the desert is a pretty significant step. But what do they do to stay safe, Marcus?
Marcus Sedgwick 14:46
Yeah, and I think you've hit the nail on the head right there. I mean, the primary thing is that you go away to 6,000 feet up in the desert, away from population centers, away from large centers of pollution, and away from large electrical grids, that in itself is the main thing. And that if you do that you can, you know, and if you're also able to either build or make safe your own house, then you can start to live some kind of normal life in the sense that you're physically not so unwell. But of course, you know, you've had to take this major step of isolating yourself from the world that is making you sick. So that is the primary thing. Having made that huge move, then, of course, yeah, as we say, there are the things you have to do, either, if you're fortunate enough to be able to build a home that's, you know, ei friendly from the ground up, if not to do things such as you know, the tinfoil on the walls to keep chemicals inside. Maybe if you have electromagnetic intolerance, and you need to, you know, do things with your house, such as converting the power system, to safer forms of power.
And I met people who've done all these things, you know, converted their cars, stripped almost all the electrics out, buying old cars, which weren't so stuffed full of electrics, as you know, modern vehicles are now converting the AC DC systems, all of these things, in addition to, you know, the mere fact that you have perhaps isolated yourself, you know, and moved across the continent, to find somewhere safe to live.
Aaron Goodman 16:17
The folks who you met--and I'm also in touch with some of the residents of Snowflake, and they will be speaking on the podcast--but from your perspective, and from your engagement with individuals in the community, have many of them been told that their experiences are not valid, have they been dismissed by medical professionals, misdiagnosed, told that they have mental illness, anxiety disorder, and thrown away by their families?
Marcus Sedgwick 16:45
Absolutely. I mean, I don't think I met one person who hadn't had some version of that story. And, you know, this is where I see the overlap with my own story, because that was very much my own experience. The first two doctors I saw--I was still living in the United Kingdom at this point--the first two doctors I saw told me that, it was literally they used the words ''all in your head,' told me I was a hypochondriac. I met better doctors later. But in a way the kind of damage was done, the seed was sown very early on. And this is exactly the story that I met with.
I think every person that I met in Snowflake, and I think I spent time with 5, 6, 7 people in the short time that I was there, and they'd all had this to a greater or lesser extent. And really tragically, perhaps the most heartbreaking cases are when it's your own family. Doctors dismissing you, gaslighting you, is one thing, and that is really brutal. And we shouldn't underestimate what happens when, you know, if you're not religious, in a, like a strict, you know, traditional sense. And I'm not, I think I'm a spiritual person but, you know, I don't belong to a church. So I don't have like a pastor to turn to. When crisis happens in your life. You know, what we're talking about very largely is your doctor that, you know, these are the times in which you absolutely need someone to be on your side, you turn to the one person that you expect is going to help you and instead, as a bio ethicist I spoke to actually said, what she did was she abused you, because--in the sense that you know, abuse is a strong word. But when you're powerless, and when you turn to someone for help, and that very person turns it around on you and says, 'Oh, you know, you're faking it, you're imagining it. This is just, you know, a mental disorder.' And you try and call them out on what exactly is this mental disorder, and they have no idea what they're talking about. This is a very traumatic thing to happen. And yeah, absolutely. I saw that with every single person that I spoke to in Snowflake.
Aaron Goodman 18:40
I know, in my own reaching out to folks in Snowflake, there is an understandable reticence, reluctance, to speak with people outside of the community, whether they're journalists or podcasters, like myself. I imagine, in your experience and your discussions with people there, they might have had a lot of questions about who you were, why you were interested in going there, because it's not the kind of place where you just want to show up and start poking around. And so could you walk us through a little bit about what that process was like? How did you build trust? And how do you view that reticence? Because they've been--they've been stigmatized frequently by dominant media. And I know that's not what your intention was, and not what you did, of course, but was there some sort of dialogue that had to take place before you arrived?
Marcus Sedgwick 19:34
Yeah, completely. There is a little irony in here in that the place that I first came across the guys in Snowflake was an article in the British newspaper, The Guardian, and I'm not claiming I really had a sense of unease about that article, but there was something that didn't entirely ring true, but it was the thing that introduced me to the Snowflake community. And then, you know, I began doing internet searches. And I found their website and I found that there was a contact email address. So I wrote to them and said, and I was just completely honest, because as I said, you know, I really wasn't intending to write a novel, I was just desperately caught up in, I'm sick. I'm going to be in Austin, I could come and see you, would you be able to talk to me. And it was Susie Molloy who wrote back and she was, you know, beautiful, she was so welcoming, and said, you know, yes. And she explained what she would need me to do in order to go. I think there was some hesitancy there.
But it was more once I actually got out there and spoke to her, you know, she was honest with me about how they have to manage this situation of people coming to talk to them and interview them. And in my case, you know, perhaps it was just because it was a very personal thing I wanted to know about their illness, for my own benefit, not for the point of making a TV documentary or something, maybe that helped. But you know, I totally understand the dilemma that they're in, and Susie is kind of the unofficial spokesperson, because on the one hand, we need more and more people to have knowledge and acceptance of these things.
On the other hand, you never quite know the agenda of a film crew, or a newspaper reporter who's turning up to report on you. And sure enough, you know, don't put this on the record, if she doesn't want it to be on the record. But you know, I subsequently discovered that they were very unhappy with that original article in The Guardian that had taken me out there, because it was someone who wrote to them apparently, in good faith, and then came and wrote a rather sneery article about these, you know, quote, unquote, I mean, I don't know if it's an actual quote, but you know, these people in the--in the desert, and it's so easy to just oh, you know, do the point and stare thing. Why would you run away to the desert?
Well, you know, as it turns out, for very good reason. But absolutely, I did have to, I guess, maybe it was just because it was the personal connection of one sick person to another sick person. And then, you know, I went and, you know, I got on, I think, very well with Susie and made some other friends there, in the brief time that I was there. And at that point, I still wasn't intending, you know, it wasn't my desire to go and research this place, or write a novel about them. In fact, one of the guys I met who you may well know, Steen, said to me, 'Hey, you should write a book about this.' I said, I said, 'No, I don't think anyone wants to read a book about a bunch of sick people in the desert.' I still wasn't, you know, thinking that way at all. But there you are the seed sinks in and eventually these things come out. But yeah, absolutely. It's a really hard thing. Because, as I say, they need the publicity, we need the publicity in general terms of a better understanding of chronic illness, especially so-called contested ones. And yet at the same time, you're the one who gets chewed up in the machine if some TV crew comes and does something really sneery about you.
Aaron Goodman 22:51
We've talked a little bit about the stigmatizing coverage. And there has been quite a lot of media coverage that is--sort of paints the residents of Snowflake as exotic or bizarre, right? Were you conscious of this going into it in writing your novel? And was your intention to do something different?
Marcus Sedgwick 23:13
Having, you know, this thing of when I finally thought, 'Oh, God, I am going to write a book about this even though I didn't want to,' I was super scared, because it's never my intention to hurt anyone. I, you know, it's, it's a very complicated subject. You know, the reason that we're writers is because we feel sensitively about the world, and about people, and about situations. And one of the fundamental principles of being both a reader and I would say, a writer, but also I would say a reader, is that you are able to make these jumps of empathy, these leaps of connection between someone that you are and someone that you are not, but on the basis that we're all humans, ultimately, and so nothing as the Roman Horace once said, is alien to me, nothing human should be alien to us.
The question always, for me, is not what you do, but how you do it. And so it was always uppermost in my mind to do this with as much sensitivity and understanding as I could. All that being said, I was absolutely, of all the books I've ever written, I was the most terrified when I sent, I got the publisher to send the proof copies of this to Susie and a bunch of the other guys down in Snowflake for their feedback. And by and large, they were really, really kind about it and felt that, I think, you know, you can ask them, but what they said to me was they felt that I had done them justice and not, you know, painted them out as these crazies in the desert, which is just all too easy to do. And, you know, you just wish that anyone who throws those kinds of words around would take five minutes to think about what is involved in an illness like this and what is involved in leaving your family or having your family reject you and going to live at 6000 feet high in Arizona desert.
Aaron Goodman 25:01
In Snowflake Arizona your novel, the central character, Ash, has to do a number of things that the community residents ask of them when they arrive. Right. And that's something that you've touched on that you had to go through. What are some of the practical things that new people, who don't live there, when they set foot in the community? What do they have to do in order to ensure folks there are safe?
Marcus Sedgwick 25:24
Yeah, so when I got in touch with Susie, as I said, you know, I think she was very welcoming about having me there. But also, of course, needed me to subscribe to their protocols. And in particular, because I was going to be sleeping on her porch, of what is safe for her. So I'd been doing--and this turned out to be a little bit funny in the end, because as I said, I'd been doing this book tour of the States, and Susie had said to me, 'so before you come to us, I need you to bring an old set of clothes that are you know, well washed, old set of clothes. And then I want you to have washed those clothes and yourself and your hair multiple times with bicarbonate soda', sodium bicarbonate, and infused to the center. And so I thought, well, I can do that. But I'm going to be on book tour, I won't have access to a washing machine. So what I'll do is I'll pack a bag with the clothes I'm going to wear at the end of the book tour, when I get to Texas, to Arizona, and fly from from--from Austin out to Phoenix. And I did that. And I was kind of halfway through the book tour and wondering why every single time I went through airport security, my bag was getting turned over every single time. And then I realized it was because I'd had this big plastic bag full of white powder. The bicarbonate soda that I would then wash my hair and body with three times over before we got out to stay with Susie. Even then, you know, when we--she was picking me up from the airport and driving me back. She needed to have the windows open. Because I was still--there was something perfumey on me that was still giving off something she was sensitive to.
Aaron Goodman 26:53
You'd just come off a plane, right? So that would
Marcus Sedgwick 26:55
Aaron Goodman 26:56
that would make sense. Right?
Marcus Sedgwick 26:57
Marcus Sedgwick 26:58
Yeah. And then yeah, you know, it was May the first or second, I think when I got there. So the days were warm enough that we could sit outside. And that obviously helped the situation too. And I was sleeping on her porch. You know, I tried not to spend time inside the house. But you know, she's very used to being clear with people--at least people who are prepared to listen--about what she needs and doesn't need. So that was fine by me.
Aaron Goodman 27:18
Right. And it sounds very similar to what folks with MCS outside of the community, right, what most of us learn to do, to set very clear boundaries with people, right, about what we can and cannot tolerate. So we've talked a little bit about some of the observations that your central character has, when they arrive in Snowflake, right, everything is a little bit foreign. There's unusual protocols to take to make sure that they're safe, washing with baking soda three times, sleeping on the porch, etc. And I think that would be sort of normal, right? For folks who aren't familiar with chemical sensitivity, to be asking all kinds of questions, what is going on here. But eventually your central character has sort of a moment of change when they start to recognize or really identify on a personal level with--with what's going on, because they too, if I'm not mistaken, have some similar symptoms, right? And I'd like to invite you perhaps to read from your novel again.
Marcus Sedgwick 28:17
Okay. "Life had gone off the tracks. I'd set out into the world to find Bly and I had, but then I'd hit a brick wall, I slept a big chunk of every day. And even when I was up, my legs were stiff and sore. I couldn't walk more than 50 yards at one time. I had headaches, I couldn't feel the ends of my fingers or toes, and sometimes that would spread as far as my elbows and knees. And I had them rashes, like from before I was sick, or as Mona kept reminding me, from before I knew I was sick. And yet I still didn't believe this was happening. I didn't really believe in MCS, I didn't believe it was what was wrong with me, but the Canaries wouldn't hear anything different and neither, in her own way, would Dr. B. She said I was mentally deranged. The Canaries told me I was physically assaulted by chemicals, and no one wanted to talk about anything else. I'd run out of money paying that dumb doctor. I was living in a room that had only two walls, it was coming to the winter, and already the nights were getting cold. Half the time, I still couldn't accept what was happening to me. What they said was happening to me. It just didn't seem possible that one day you could be fine, and the next you were sick for life. And the other half of the time, it was plain that that was exactly what had happened. I mostly got about Mona's house in her wheelchair to use the bathroom, to roll up for supper time, and so on and so forth. And I slept. But there was some good things, too. I know. I knew that even then. One of them was Mona. The other was Bly."
Aaron Goodman 29:44
Thank you, Marcus. So can you please tell me what's happening in this part of the novel? It sounds to me, as a reader, that the character goes through a process of change where at first the community seems a little bit different or unusual, but then does the character fall ill themselves and start to identify with the folks in Snowflake?
Marcus Sedgwick 30:05
Yeah, absolutely. And I mean, there's several different things going on here. One, just in terms of, you know, the way that a narrative arc must work here, it was important to me that Ash represented the outsider who, as you said, comes in and always seems very mystifying, and weird and unbelievable, you know, people will be sick, because there's perfume around or whatever it might be. And then they go through that process of moving from there, to seeing it happen to themselves. And at this moment in the book, Ash is just, you know, finally, in this tipping point to recognizing that these processes are not any real, but are happening to them, too. So there's a whole bunch of questions, you know, in terms of--in society, what we mean by sickness, individually, how do we know when we're ill, when we feel like we're getting better what do we really mean? The moment, personally, that I became ill, which is over eight years ago now, on the one hand, I would say, I'd never been fitter in my life, I was a runner, I was exercising regularly. I thought I was super fit. And yet, I'd probably never been less healthy in my life. This, this accident of ill health was just about to occur to me.
Aaron Goodman 31:12
I want to loop back to your--the character in your novel who falls ill. Is there something in Snowflake that makes them ill or develop chemical sensitivity? Or is it sort of a residual thing that happens, where they're falling ill because of something that happened before?
Marcus Sedgwick 31:28
I left that deliberately opaque because I think there are too many different possibilities here. And I don't want to prescribe any one of them. You know, I mean, I have a personal preference in that it's that basically, Ash has been struggling through to this point, they've already been displaying these rashes and other symptoms. And then it's only when they get to snowflake, that there's suddenly this full flowering of the illness. And as I said, I mean, I think that relates to what I was just saying in that, on the one hand, when I became ill, you know, I was running 10, 15 kilometres a week, I felt like I was super healthy. And yet I could see in retrospect that I'd spent 2, 3, 4, 5 years perhaps going to my doctor saying, 'Why am I breathless all the time? Why do I have heart palpitations all the time? Why is th--this rash?' You know, whatever it might be. And so I think at the same time, you know, you can be holding so much that is waiting to emerge. So I didn't want to be too precise about exactly why and when it is that Ash gets sick, because I was trying to cover a lot of bases here, because anyone who's listened to this podcast, and I don't know, I, again, I can't speak for anyone else. But I do tend to feel that we all have so many different varieties of this journey, even though that, you know, there are many broad similarities, very often we know exactly what we're saying. But there were so many flavors and inflections on this, I didn't want to pin it down to being just one of those stories,
Aaron Goodman 32:51
After having visited Snowflake Arizona, spent some time there, met with the people who live there, do you think that Snowflake and moving there is a solution? For some people with chronic illness?
Marcus Sedgwick 33:05
Well, again, it depends what you mean by solution doesn't it, it can certainly be the way to live some kind of normal life. And if your choice is between being bed bound, at home, wherever that may be, in some, you know, polluted city, for example, or living away from society high up in the desert, but having your physical health restored to you know, that's a personal choice that we each must take.
So, you know, to call it a solution, yes, it can be, but only in the way that to, for example, to expose yourself to something that you know, is bad for you is clearly perhaps foolish. But equally, it's not a solution in the perfect sense of the word of we are filling the world with chemicals that we know about. This is you know, one of the many things, both in the research for the novel, but more widely in my research of trying to find out why I was ill and what I could do about it. The things that I came across and the people I spoke to and the books that I read. At this point, we could name 100 different things. But let's pick one and talk about [redacted] we talk about what that single one pesticide is doing to the world. It's no wonder that there are vast amounts of sick people.
The fact that the reason that the people in Snowflake call themselves the Canaries is because they're the canary in the coal mine they're the tip of the iceberg. They're the people who are more sensitive, but without question, this is a wave that sweeps down to more and more people, and the more and more chemicals that we put into the world, the greater everyone's exposure is and the more these stories are going to become common. And even on a you know, just more anecdotal level. You'll know people who will say things like 'I just can't be around someone wearing perfume'. I know many people like that, and they didn't consider that they have MCS they've never even heard of MCS, but if they spend an afternoon hanging out with someone who's got that kind of strong perfume, they have a migraine and they have to lay down. It's just a question of degree. Because these things are so gray and opaque. It's never as clear as that, you know, a bullet wound to the head. But these things are killing people nonetheless.
Aaron Goodman 35:09
And--thank you. And I ask the question, because there's a lot of sacrifice and a lot of work that's involved in actually moving oneself to a remote community like Snowflake, right? At the end of the day, for folks there who you met, do you think it works for them from what you've seen, in spite of the sacrifices they've made?
Marcus Sedgwick 35:26
Well, I mean, I can't speak for them, I can only say what it felt like looking from the outside. You know, there was a point when I was thinking about maybe trying to move off grid, I live quite remotely in France, it wouldn't be that hard to do. But looking at the guys in Snowflake, it was heartbreaking, in a sense, because I think I'm right in saying that, I only heard of one couple who live there, and everyone else is single. And, you know, this is what chronic illness does. It's so hard to comprehend. It's so hard to live with. But it's also so hard to care for somebody who's living with it, that it destroys relationships. And so I think, from what Susie said, I think we saw them one day, an older couple who were still together. And I know of people who live in kind of cooperative relationships, but not in a couple. You know, that was, to me, the biggest tragedy, that was absolutely heartbreaking, that this is what the real impact of an illness like this can be, when nobody knows exactly what is occurring and why. I can't speak for anyone there. And whether that sacrifice is worth it, I think it's a question you can only ask those people. For me, I know, you know, if it was a choice between being in bed 90, 95, 100% of the time, and being around people you loved or being on your own and being healthy. That's a very tough decision to make.
Aaron Goodman 36:49
In your novel, there is a reflection on whether we are running out of safe spaces. And you've talked about that right, with the growing number of chemicals that we're all exposed to on a daily basis. And when you add climate chaos and industrial pollution, under regulated and increasing varieties of chemicals that we all experience, we all encounter, do you feel that we're running out of safe spaces. is Snowflake, one of the last? And even, maybe I can ask the question, can there be any guarantees that it will remain a safe space?
Marcus Sedgwick 37:29
I mean, it's really hard. To speak specifically about Snowflake, there's a guy there who I didn't have the chance to meet who, I saw his old house, and it was closer into the community. But he's had to abandon it and move even further out to the desert because they've built a power line. And he was really sensitive to electromagnetic radiation. So even in places remote to Snowflake that can happen. And where is there, you know, I mean, we now know that there are microplastics at the North Pole. You know, there really is nowhere that is perfectly pure. And on a very, you know, you, since you mentioned the climate crisis. For a previous novel that I wrote some six, seven years ago, which was set on the Mexican American border. When I was researching that book, I came across the statistic that the United Nations, and as I said, these are old figures now, but they were predicting that by 2050, the middle of the century, there'd be a quarter of a billion people displaced by climate change. And I think I'm right in saying there was a--an article last week, here we are in 2022, saying that figure is already 100 million people displaced by climate change. And these people have to go somewhere. And so there's another level of chaos that is waiting to, and it's, you know, people at certain ends of the political spectrum, like to blame the victim here.
But if you are forced from your home because of a natural disaster, you have to go somewhere. Likewise, if you are forced from your home by, you know, an illness, you're still trying to find somewhere in which you can thrive. And it's not your fault. But these are going to be the--the effects. It's seemingly multiplied on ever larger and larger scales. I don't want to sound too pessimistic about this. But I do think it's important that more of us talk about this while there is still time to change these things. I don't want to bang an anti-American drum here, because I'm European. And I, you know, I have many, many friends who are from the States, these things are complicated. But one of the things that is different between the EU and the United States is the control of certain chemicals. I'm not saying things are perfect here. But to go back to [redacted], for example, you know, the controls on that for domestic use here is strictly forbidden. So there is stuff that we can do, but we can only do it if we know what we're talking about. And that's why conversations like this one are so important.
Aaron Goodman 38:32
We've talked about the misdiagnosis and the denialism, delegitimization of folks with MCS and other illnesses, chronic illnesses, do you have a sense of what impact COVID And long COVID may be having? We know--we see a lot in the media that medical professionals are starting to pay more attention to chronic illnesses that are emanating as a result of the pandemic.
Marcus Sedgwick 40:10
It's really interesting, I think we're at a tipping point. And you know, I've been speaking to a few people over the last couple of years, interviewing various people who know much more about this than I do. But one thing that was obvious to me right at the start of the pandemic, and I think was probably obvious to anyone who've been living with a chronic illness, is that there would be many, many more people who would have, you know, the virus just wouldn't be, you know, here one week and gone the next week issue, that it would trigger chronic illness, in many, many more people. And the question here is--the tipping point is this is, do governments take long COVID seriously, or do they try and sweep it under the carpet? And the reason I'm saying that is this is precisely the story of what's happened with ME/CFS, is it has been in the financial interests of governments to say that this is a psychosomatic disorder. Because if you say that chronic fatigue syndrome is all in your head, as happened to me, it means what your doctor can do is put you down for six weeks of cognitive behavioral therapy, at the end of which they can say, 'I'm so sorry you're not better, go away and deal with it'. Where is if you admit that this is a physical illness, you know, a biological, physiological disorder, then you're obliged as a doctor to then give your patient an endless series of tests, each one of which will probably cost as much as that six weeks of cognitive behavioral therapy.
And in the UK, I mean, things are a bit better, conversely, to what I was saying before, in terms of ME/CFS, things are a bit better in the States now because it's the NIH that they have in America has said, 'No, this is a physiological illness. It's not a psychosomatic illness.' And what that means is, there's an implication in terms of cost, because as a bioethicist that I interviewed explained to me the most expensive patients are people whose illnesses cannot be diagnosed. So the fact therefore, quite encouragingly, and I was, I was really quite fearful that what this would mean would that long COVID would be swept away in the same way. And yet it does seem, in fact, that it's impossible to ignore this. There's too many people, it's--and we know the cause of it, because it's been a distinct, you know, viral pandemic event, to just sweep this away as all these people are suddenly psychosomatically ill, and therefore, I don't know what's happening in the States and Canada, but Canada, but in the UK now, there are some serious research groups looking into long COVID and connecting it directly to ME/CFS, and then we can hope, by extension, into all other forms of, quote, unquote, disputed illnesses.
Aaron Goodman 42:35
Well, that'd be fantastic. Well, I really want to thank you so much for taking time to talk about your novel, and for sharing all of your insights.
Marcus Sedgwick 42:42
It's been a pleasure to be here. Thank you so much for having me. I just can't value enough these conversations. We all need to keep having them. But yeah, thanks very much for having me on the show.
Aaron Goodman 42:52
That brings us to the end of this episode of the Chemical Sensitivity Podcast. Thank you very much to Marcus Sedgwick for speaking with me. The podcast is produced by me Aaron Goodman and Kiana Holland. We release new episodes twice a month. Please subscribe for free wherever you get your podcasts to never miss an episode. Leave a review on Apple Podcasts. It's a great way to help others learn about the podcast. And follow us on Facebook, Twitter, Instagram, and Tik Tok--even YouTube. Just search for the Chemical Sensitivity Podcast, or podcasting MCS. And 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 email@example.com and thanks so much for listening