99% Invisible - 123- Snowflake

Episode Date: July 15, 2014

Well before the early 1500s, when Sir Thomas Moore first coined the term “Utopia,” people have been thinking about how to design their ideal community. Maybe it’s one that doesn’t use money, or one that drops traditional family structures and … Continue reading →

This is 99% invisible. I'm Roman Mars. Since the early 1500s, when Sir Thomas Moore coined the word utopia, and probably well before then, 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. One, two, check. 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 I'm just gonna fill up the left this tub of water.

And then thoroughly washed every item of clothing that she was bringing with her. 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've got an all pair of jeans, I'm putting them into you. Delaney reports for the show, state of the reunion. 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. 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. 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 there is seriously intolerant to laundry detergent, perfume, cigarette smoke, car exhaust, commercial cleaning products. 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. 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 symptoms

are physiological, psychological, or both. That means that people with MCS are often dismissed as, well, hypokondriacs. Many find themselves without sympathetic medical care or 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.

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, Sheat metal walls, it's truths. They're generally pretty small. Delaney didn't go to snowflake to find out whether or not MCS was quote unquote 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. Hi, I hope you're Delaney. Hi, man. plateau. Susan Maloy 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.

Do you like milk in it? Sure. And then, just like I worried. I smell cigarettes. What would you like me to do? I'm not quite sure. OK. I'm going to get close to you for just a sec, OK?

Sure. It's a blouse, maybe. OK. Do you mind if I give you something else to wear? No, not at all. OK. Like, you have guest clothes. OK.

Delaney is not a smoker, but this is the level of Susan's sensitivity. 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. For me it was just real fast. I felt this just bizarre feeling in my head and my sinuses and the palate of my mouth and my throat also all closed. Susan was living in San Francisco when she first got sick back in the early 90s. Her sensitivity

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. Francher 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 away. Susan slept on friends' 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, for me, the improvement was so radical. You know, 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, yeah, we're moving here. For Susan, the move felt like a passage, like a journey between two different worlds. 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, but just 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.

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. And they're not the first people in history to move because of sickness. For ever, there have been people who have had to relocate because of particular medical problems or health reasons.

In fact, the history of medical migration to this part of the country goes back a long ways. 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 characterized the illness. So this is not an uncommon experience for human beings. It's just right now it's our turn, or yet, or the new guys. 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 to 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. 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. Susan built this house herself with help from friends.

The people here in Snowflake might be the closest thing there is to a MCS think tank, and they've developed building techniques that help manage their sensitivities. That means using quote-unquote safe materials, like ceramic tile or concrete floors instead of carpeting, which traps chemical odors. Susan also used foil-lined sheet rock, which covers her walls, giving the whole inside of her house a silver sheen. I just couldn't afford to risk paint. You know, if you get the wrong kind of paint, your whole house is unlivable, maybe forever or maybe, at least for several months or a couple years.

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. You designed it pretty strategically with that room in mind, but the room at the front of the house is the one where electricity comes into 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. 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. 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, you know, from plastics and so forth. If there's any way around it. And so this one is old and aired out. And this glass sheet in front of it is to keep the fumes in that room and I can open the front door and let the fumes go out without contaminating the inside of my house.

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. When Susan's phone rings, it's usually not a good sign. I don't get calls from people for whom everything is going great. You know? Hello? Hi, Susan. This is young Robinson. How are you?

Hi. Do you know how proud place is available because I could not be doing work. And I've got to get out of here. My skin is literally burning and bleeding from the pollution. 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 ruin for everyone. I'm sorry, but there is some living there. Susan tracks the limited housing in Snowflake, and she breaks the bad news when she can't help out.

I don't know. You never know. I'm waiting for a miracle to happen. I need a miracle. I don't have any miracles. I wish I did. I did go. I know you're not asking me to get off. I need to go. I'm emotional that's what a typical call is like, you know, people who are real sick where they are and need to be in it. Another kind of housing and there isn't any. Over the years enough people with MCS have come to Snowflake that the wider community has adapted to them, at least a little bit.

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 into the store, which smells like incense. And then there's the dentist. And my EI patients usually come in through the back door, they wait in their cars, and we have a separate entrance right here. EI is short for environmental illness, another term for multiple chemical sensitivity.

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. And I usually tend to see them at 8 o'clock in the morning because that's 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 cab aside wipes, which is what we use in the dentist. Melissa also shuts down the X-ray machine, opens the windows, and turns off the fluorescent lights if patients request it. As far as polishing teeth, I use plain pumice stone. So that way 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, you know, like I understand it, a lot of them, they're really sick because of chemicals and electronics and all sorts of things.

So, 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. I remember as a kid, I spent in a Vermont, we went to the Yankee-Doodle candle factory. And it was my only experience with a migraine headache. It 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.

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. All it takes is one family building a gas station out there on the road and a lot of us that have to move. In a little while, Susan has a date with another friend in the community. She's going to read him 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.

It is fragile. side. It makes life here in snowflake seem so precarious. 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's going to happen to us. You know, always hoping that we're going to keep getting away with the slife that we've built here. 99% Invisible was produced this week by Delaney Hall from the public radio show State of the Reunion. If you like great stories about places and the communities that people create, and I'm guessing you do, so true is the show for you. Find out more at stateofthereunion.com. Our show is produced by Sam Greenspan, Katie Mingle, Avery, Truffleman, and me Roman Mars.

We are a project of 91.7 local public radio KALW in San Francisco and produce the offices of Rxign in beautiful downtown chemical free oakland california if you like the stories in this show you can get more and more and more of it on facebook twitter and tumblr but 99 p i h q is at 99pion.org. Radio Tapio from PRX. you