Roman Mars: This is 99% Invisible. I’m Roman Mars.
Roman: Since the early 1500s, when Sir Thomas Moore coined the word “Utopia” and probably well before that, people have been thinking about how to design their ideal society. Maybe it’s one that doesn’t use money. Or one that drops the traditional family structure in favor of raising children collectively.
Delaney Hall: One, two check.
Roman: That’s producer Delaney Hall getting ready to visit a sort of utopia. And before she left, she packed her bag, tested her recording equipment, grabbed a few extra packs of AA batteries. And–
Delaney: I’m just gonna fill-up this tub of water.
Roman: And then thoroughly washed every item of clothing that she was bringing with her.
Delaney: I have a box of baking soda. Just dumping some of it in this tub of water. To be more specific, I soaked my clothes in a tub of baking soda for 48 hours and showered with Dr. Bronner’s unscented soap for two weeks before I left. I got an old pair of jeans. I’m putting them in too.
Roman: Delaney reports for the show State of the Re:Union. Every episode is about a different place. So, she travels a lot. But she doesn’t usually go to these kinds of extremes to get ready.
Delaney: But this is an unusual reporting trip I’m about to go on. I’m headed to an isolated community in Eastern Arizona on the outskirts of a small town called Snowflake. And the people who live there, have given me very special instructions for how to get ready.
Roman: Because for some people in Snowflake, utopia just means not being physically sick. A community of people who live just outside this small, rural town have a medical condition called MCS, Multiple Chemical Sensitivity. It means they are seriously intolerant to laundry detergent, perfume, cigarette smoke, car exhaust, commercial cleaning products.
Delaney: And Snowflake is a community designed around keeping that sort of stuff out. People who have MCS can be seriously affected, sometimes disabled by migraines, muscle pain, rashes, nausea, and fatigue.
Roman: But most scientific studies have not shown a strong connection between chemical exposures and symptoms. There’s no real medical consensus about what causes the illness. And doctors disagree about whether the symptoms are physiological, psychological, or both.
Delaney: That means that people with MCS are often dismissed as, well, hypochondriacs. Many find themselves without sympathetic medical care, access to services that people with recognized disabilities might have. There are a subset of doctors who believe in MCS and treat it. But most mainstream physicians avoid the diagnosis. And so a lot of people with the illness fall back on trial and error: designing their diets, habits, and environments to try and make themselves feel better.
Delaney: It’s my first morning in Snowflake. And this is really an incredible landscape, very flat, very dry. You can see a long way in every direction, and the sky is very blue. The houses out here are all built in a really simple style. They look like, they have sheet metal walls, pitched roofs. They’re generally pretty small.
Roman: Delaney didn’t go to Snowflake to find out whether or not MCS was “real”. She went to learn how people have built new lives and homes designed to fit their very particular needs, out there on the remote grassy plateau.
Susan Malloy: I hope you’re Delaney. [laughs]
Delaney: I am. Yeah.
Delaney: Susan Malloy has short, curly hair and a wide grin. It’s below freezing, but all the windows in her small house are open. For people with MCS, their home is the only environment they can really control. I’m suddenly very aware of my smell. I’m worried, I didn’t prepare well enough. Susan offers me a cup of coffee.
Susan: Would you like milk in it?
Delaney: And then just like I worried.
Susan: I smell cigarette.
Delaney: What would you like me to do?
Susan: I’m not quite sure.
Susan: I’m going to get close to you for just a sec, okay?
Susan: It’s the blouse, maybe.
Susan: Do you mind if I give you something else to wear?
Delaney: No. Not at all.
Susan: Okay. I do have guest clothes.
Roman: Delaney is not a smoker. But this is the level of Susan’s sensitivity.
Delaney: Susan is at the heart of this community. People have described her to me as a fairy godmother and the queen. She works with curious outsiders like me. She also attends conferences on disability rights and spends hours each week answering phone calls from people who are sick. She’s healthier than lots of her neighbors. But, that hasn’t always been the case.
Susan: For me, it was just real fast. I felt this just bizarre feeling in my head. And my sinuses and the palette of my mouth and my throat all sort of closed.
Delaney: Susan was living in San Francisco when she first got sick back in the early 90s. Her sensitivities began to cascade which is pretty typical for the illness. Her allergy to chemicals grew into a sensitivity to food and clothing then electricity, telephones, computers, kitchen appliances. Pretty much everything became toxic to her.
Susan: Furniture had to go. The rugs had to go. I had two girlfriends come over and take my clothes. Just got rid of almost everything right way.
Delaney: Susan slept on friend’s porches, in her car, and at her parents. At her sickest, she couldn’t even drink chemically treated tap water. And her Mom put buckets in the yard to gather rain. Then a friend with MCS invited her to visit Snowflake, a rural, high-altitude community with good, clean air. He’d discovered it a few years before, driving around the country, trying to find a place where his symptoms wouldn’t be so severe. And when Susan visited–
Susan: For me, the improvement was so radical. You get out of the car, you feel better. You can walk. You don’t need the oxygen tank. Your speech is clear. I didn’t exactly want to move here, but my body said, “Yes. We’re moving here.” [laughs]
Delaney: For Susan, the move felt like a passage, like a journey between two different worlds.
Susan: Like in the old days, for someone to get on a ship and go to the United States from Ireland. They didn’t really want to leave, it’s they weren’t able to make it anymore. And so they took this huge risk and got on a ship. I think it felt a little bit like that to me.
Roman: Gradually, more people moved to Snowflake. They came from all over; an engineer from Denmark, a marketing director from Toronto, a chef from the Philippines, a teacher from San Francisco. Now, there are about three dozen households scattered across this area, all united by this illness.
Delaney: And they’re not the first people in history to move because of sickness.
Susan: Forever, there have been people who’ve had to relocate because of particular medical problems or health reasons.
Delaney: In fact, the history of medical migration to this part of the country goes back a long ways.
Roman: A hundred years ago, doctors encouraged people with tuberculosis to head west for the same clean, dry air that brought Susan here. So many patients ended up in Arizona, that tent cities sprouted up across the State. And locals gave them a nickname, lungers. Because of the hacking cough that characterize the illness.
Susan: So this is not an uncommon experience for human beings. It’s just right now, it’s our turn for it. We’re the new guys.
Delaney: But the complicated thing about this illness is that it’s so unknown. Some doctors would argue that this place isolates people, pushes them deeper into their sickness. All the talk about diets and remedies and building techniques, only reinforces what might be better treated in other ways. But Susan told me, this place saved her life.
Susan: The kitchen’s the same as the bedroom, which is the same as the living room. I mean, I basically live in one big room.
Delaney: Susan built this house herself with help from friends.
Roman: The people here in Snowflake might be the closest thing there is to a MCS think-tank. And they’ve developed building techniques that helped manage their sensitivities. That means using “safe materials”, like ceramic tile or concrete floors instead of carpeting which traps chemical odors.
Delaney: Susan also used foil-lined Sheetrock which covers her walls giving the whole inside of her house a silver sheen.
Susan: I just couldn’t afford to risk paint. If you get the wrong kind of paint, you’re whole house is unlivable maybe forever or maybe at least for several months or a couple of years.
Delaney: But maybe the most striking thing about this house is the way that Susan has isolated most of her electronics in a separate room which she can completely shut off from the rest of the house. That’s because many people with MCS also experience sensitivity to electricity.
So, you designed it pretty strategically with that room in mind? The room at the front of the house is the one where you–
Susan: All the electricity comes in to one corner of the house. It all comes in right over there. And the rest of the house doesn’t have to be as affected by it.
Delaney: She keeps her television and a VCR in a separate room. And she’s constructed a thick window to watch TV through while keeping the equipment isolated.
Susan: The television is an ancient one, I mean, by today’s standards. And it’s really nothing special other than it’s old. I don’t want to have new chemical emissions in my house from plastics and so forth, if there’s any way around it. This one is old and aired out. This glass sheet in front of it, is to keep the fumes in that room. I can open the front door, and let the fumes go out without contaminating the inside of my house.
Delaney: The house is modest. But you can tell how much it means to Susan. She shows me every corner and every adaptation. It’s her safe haven. And there are lots of people who are desperate to move out here to live in a little place just like this.
Delaney: When Susan’s phone rings, it’s usually not a good sign.
Susan: I don’t get calls from people for whom everything is going great, you know? Hello.
Joan Robinson: Hi, Susan. This is Joan Robinson. How are you?
Joan: Do you know if Carol’s place is unavailable, because I um, could not be doing worse. And I’ve got to get out of here. My skin is literally burning and bleeding from the pollution.
Delaney: Susan gets a few calls like this a week from runners, people who are moving from place to place trying to find somewhere that feels safe. Snowflake isn’t the only community of its kind. But it’s one of the largest and most established. Still, that doesn’t mean there’s room for everyone.
Susan: I’m sorry. But there is someone living there.
Joan: Someone is living there?
Delaney: Susan tracks limited housing in Snowflake. And she breaks the bad news when she can’t help out.
Joan: — weeks? I don’t know. You never know. I’m waiting for a miracle to happen. I need a miracle. Seriously, this is so horrible.
Susan: I don’t have any miracles. I wish I did.
Joan: I need to go. I know you’re not asking me to get off. But I need to go, because I’m too emotional right now.
Susan: I’m afraid that’s what a typical call is like. People who are real sick where they are and need to be in another kind of housing, and there isn’t any.
Roman: Over the years, enough people with MCS have come to Snowflake that the wider community has adapted to them, at least a little bit.
Delaney: There’s a real estate agent who helps people find MCS friendly properties. There’s an organic food store which is kind of unusual for a rural town of 5,000. The owner there will sometimes shop for people with MCS, and leave the groceries outside for them to pick-up, so they don’t have to come in to the store which smells like incense. And then, there’s the dentist.
Melissa: And my EI patients usually come in through the back door. They wait in their cars. And we have a separate entrance right here.
Roman: EI is short for Environmental Illness, another term for Multiple Chemical Sensitivity.
Delaney: Melissa is a hygienist here at Sierra Dental. Sierra Dental regularly sees about 40 patients with MCS. And they’ve adapted their practice to make it friendly to people with sensitivities.
Melissa: And I usually tend to see them at 8:00 in the morning because I haven’t wiped my room down with chemicals, because I did it the night before. So, I don’t have to worry about them smelling the CaviCide Wipes, which is what we use in the dental office.
Delaney: Melissa also shuts down the x-ray machine, opens the windows, and turns off the fluorescent lights if patients request it.
Melissa: As far as polishing teeth, I use plain pumice stone, so they aren’t getting the chemicals. The other thing we do here in the office is, we don’t use fabric softener. I actually use a natural laundry soap we use, a lot of us do. No sprays, no smelly lotions, things like that. So, like I understand it. A lot of them, they’re really sick because of chemicals and electronics and all sorts of things. So–
Delaney: Lots of people are skeptical when they first hear about the illness. But, Melissa just kind of rolled with it. She did research. She believed her patients complaints. She even sympathized a little bit.
Melissa: I remember as a kid, I spent in Vermont. We went to the Yankee Doodle Candle Factory. And it was my only experience with a migraine headache was smelling all of those– the smells. And I don’t have chemical sensitivities but being around all of those smells all day long was the worst headache of my life. So, I equate that with all the time with these poor people.
Delaney: We’re back on Susan’s porch. And she’s looking out over the landscape. She knows that this community depends on the tolerance and accommodation of people like Melissa.
Susan: All it takes is, one family building a gas station out there on the road and a lot of us would have to move.
Delaney: In a little while, Susan has a date with another friend in the community. She’s going to read them a book which means she’ll stand outside his house, hold the book up to his window, and turn the pages. He’s too sensitive to let her or even the book itself inside. It makes life here in Snowflake seem so precarious.
Susan: It is fragile. And I know it. And I treasure it for being here at all. So, I am hyper vigilant about always hoping that nothing is going to happen to us. Always hoping that we’re going to keep getting away with this life that we’ve built here.
Roman: 99% Invisible was produced this week by Delaney Hall from the public radio show, State of the Re:Union. If you like great stories about places and the communities that people create. And I’m guessing you do. SOTRU, is the show for you. Find out more at stateofthereunion.com.
Our show is produced by Sam Greenspan, Katie Mingle, Avery Trufelman, and me, Roman Mars. We are a project of 91.7 local public radio, KALW in San Francisco and produced out of the offices of Arcsine in beautiful downtown, chemical-free, Oakland, California.