Episode 123: Snowflake

Well before the early 1500s, when Sir Thomas More 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 raises children collectively.

For a community of people on the outskirts of the small Arizona town of Snowflake, “utopia” is just a place where they won’t be physically sick. That’s because everyone in this community is suffering from Multiple Chemical Sensitivity or MCS.

snowflake road croppedCredit: Delaney Hall

People with MCS suffer from migraines, muscle pain, rashes, nausea, fatigue, and other debilitating symptoms they believe to be caused by low-level exposure to chemicals such as laundry detergent, perfume, and car exhaust.

Most scientific studies have not shown a strong connection between chemical exposure and symptoms, and the American Medical Association does not recognize the illness as an organic, chemical-caused disease. But doctors still disagree about what exactly causes it — whether symptoms are physiological, psychological, or both.  There is a subset of doctors who believe in MCS and treat it, but most mainstream physicians avoid the diagnosis and may recommend therapy to treat the symptoms. A lot of people with the illness take matters into their own hands, designing their diets, habits, and environments make themselves feel better.

The people in this Arizona community might be the closest thing there is to an “MCS think tank” and they’ve developed building techniques to help manage their sensitivities. That means using “safe” materials like ceramic tiles or concrete floors rather than carpeting, which traps chemical odors. Many leave their windows wide open, even in the winter, to keep air flowing through their houses. Some people with MCS also experience sensitivity to electricity, so some houses forgo electricity, or have it routed through a single room which can be completely shut off from the rest of the house.

snowflake croppedCredit: Delaney Hall

There are about three dozen households in the Snowflake community, but the waiting list is long. Susan Molloy, who keeps track of the housing, gets calls every week from “runners,” who are moving from place to place, looking for somewhere that won’t aggravate their sensitivities.

Snowflake isn’t the only community of its kind, but it’s one of the largest and most established. Some local businesses in the larger town of Snowflake have even begun to adapt to the MCS community, at least a little bit. Sierra Dental has tailored their practice to make it friendly to their MCS patients. There’s a real estate agent who helps people find MCS-friendly properties. There’s also an organic food store where the owner will 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.

This MCS utopia is a complicated place. Some doctors would argue it isolates people, pushing them deeper into their illness. But Susan Molloy claims that Snowflake is a necessary refuge, and she guards the place fiercely. “All it takes is one family building a gas station out there on the road, and a lot of us would have to move.”

This story was reported and produced by Delaney Hall. It was adapted from a piece that originally aired on the show State of the Re:Union. Featured image by Ken LundThanks to filmmaker Drew Xanthopoulos who is working on a documentary film, set partly in Snowflake.

Music in this episode: “Boreal Forest Opper” – Caribou; “The Crass” – Flim; “Mori” – Fennesz; “Kae” – Fennesz; “Are you Scared?” – Melodium, “The Unfinished” – Eluvium; “Are You Happy?” – Melodium; “Fire Made of Bones” – Tape; “X Portions of a Whole”- Set in Sand

 

57 thoughts on “Snowflake

  1. Todd Haynes made an excellent fiction film with Julianne Moore titled “Safe” that does a great job grappling with this issue. Definitely worth a watch.

    • Yes, except doesn’t it become pretty judgmental toward the end? If I remember correctly, it starts out sympathetic, and then the ill characters are portrayed as deeply nuts by the ending. Iw as so disappointed.

  2. I’m so disappointed….
    These people have mental issues. There’s no real “debate” about this condition – it’s psychosomatic. Research after research shower there is no relation between what they feel and what chemicals actually exist. They are sensitive to normal vegetables and not to organic – although organic have chemicals as well. Everything is chemicals… It’s done kind of panic from the modern life. And by the way – no one can feel electricity. The human body has no way to feel it.
    This show was mainly encouraging them in their delusions – and that’s not the way to help sick people. Shame on you.

    • The show didn’t encourage the beliefs, it purposefully declined to get into any medical or psychological arguments. 99% invisible is about design, and this episode was how do people organize and build their lives without the slightest trace of modern life (literally). This episode won’t encourage anyone (and to be blunt, I doubt any of the people who this story is about will even listen to this podcast).

      You’re talking about people who were willing to leave their friends, family, jobs, homes, possessions, everything to go and live in the middle of the desert. You literally cannot pay people to do that. this episode is not going to be a deciding factor in the lives of anyone willing to go to those measures.

  3. My heart goes out to these people. They’ve been sold a false diagnosis by naturopaths and other alt-med practitioners, when in fact their illness is psychosomatic. They need talk therapy, help with anxiety issues, antidepressants, or all three. They need actual science, not intuition and anecdotes. Their lives are so limited by this false diagnosis. Psychosomatic illnesses are REAL illness that cause REAL suffering, but the cause is the chemistry of the brain, not the chemistry of the air and water. The stigma against mental health issues (“it’s all in their heads”) forces people to seek more “real” culprits in the environment, whether they exist or not, and the alt-med community only fans the flames. Shame on them. These are good people on pain who deserve real help.

  4. I certainly believe that these people have real pain and real problems. however, that does not mean they have correctly identified the cause of their pain.

    I’ve worked through my own difficult to diagnose medical issues – you must be prepared to be wrong repeatedly before arriving at the correct answer. it can be very very hard to discern signal from noise.

    count me among those disappointed to see this getting attention.

  5. Wow. All these comments are disappointing. There are medical doctors that specialize in Environmental Medicine that diagnose this illness. Those who do not know the reality sufferers face, should educate themselves, not spread their lack of awareness.

  6. I typically enjoy 99 Percent Invisible very much, but this strikes me as a very wrong story idea for the show. It’s not my show and I don’t get a vote, so to speak, but I wanted to mention why I found it inappropriate

    This episode isn’t really about design. It’s about people who most of us see as mentally ill are indulging their mental illness together. I’m very sympathetic to them, because I’m certain they’re hurting and that they believe in the diagnosis they’ve found. But to treat this as a real illness makes no more sense than doing an episode on the design of tinfoil hats.

    This is about mental illness, not about design, IMO, even though that will outrage some people who are willing to believe whatever some well-meaning website says about this alleged illness.

    • I felt like this episode was very much about design. How do you design a society without any of the basics of modern society? (electronics, artificial chemicals, soaps, perfumes, cleaning products, etc). Yes it is about a medical condition, but medical conditions have a huge impact on how you organize spaces conditions

      If you say this episode isn’t about design because it is about a medical condition, you might as well say “Deaf Space” isn’t about design, it’s about Deaf people, or the episode about the handicap symbol was not about design, it was about accessibility, or the toothbrush episode wasn’t about design, it was about dental hygiene.

      And as a note, saying that it is physiological still makes it a real illness, anorexics believe they are fat even when they are skin and bones, but interviewing them about how they view their body is not saying their assessment is accurate. And for me personally, i love public radio because it gives people who would never has a platform in any other medium to talk bout how they experience the world: you don’t have to agree with them.

      Sorry, I’m not picking on you, I just loved this episode and am surprised at the negative reaction.

  7. Wow.. I didn’t actually listen to this or whatever, but you guys have really closed minds (the comments). MCS is not a mental illness. I suffered for a long time before I realized what problems I had – and it was sheer good luck that I realized which chemicals, etc. I had problems with (because someone else pointed out to me that when I was away from various things, I didn’t have various symptoms.)

    So yeah… it makes perfect sense to get away from the crap in order to live a more normal life. Living with migraines and stomach upsets and your throat closing up and skin rashes and lethargy is no picnic, let me assure you.

    Do y’all think that people with coeliacs or lactose intolerance are mentally ill as well?

    • No, celiac disease and lactose intolerance are totally different. There is robust, replicable evidence for these conditions, and the mechanisms for how they work in the body are well understood. Someone with celiac has a vigorously unpleasant gut response to gluten whether they know they are eating it or not, and vice versa. Folks with MCS, wifi allergies, etc, experience symptoms when they BELIEVE they’re around harmful chemicals/signals, even if they’re not. This doesn’t mean they aren’t suffering from a disorder that deserves compassion and medical care – they are and do! But the science points to a psychological cause rather than an environmental cause. This is no less valid an illness, and it deserves help based on careful science, not theories that “make sense” on an intuitive level.

    • I was sympathetic to her story until she said she is sensitive to electricity. No one has on earth has proven to be that. This would be a simple experiment to conduct, having a room wired up and randomly run current through to see the results. The chemical off gassing reactions is plausible though.

  8. Apparently everyone that commented is a self-appointed expert on chemical intolerance.

    It amazes me how those that know nothing about something claim to know everything about anything.

    Homosexuality was once thought to be a mental illness; cigarettes were once claimed to be completely safe, by doctors; and the majority scoffed at the idea that prolonged exposure to x-ray radiation was harmful.

    While much has changed since those misconceptions, one thing that certainly hasn’t is the ignorance and short-sightedness from which they were derived and the arrogance with which they’re asserted.

    Case in point.

    • You’re mixing issues.
      Homosexuality was always a real thing – just wasn’t accepted. We’re talking about a condition that isn’t real. That’s something comletely different.
      There is no mechanism by which a human body can feel electricity. I’ll repeat – there is NO SUCH MECHANISM.
      Case in point.

    • I’m mixing nothing; it’s called an analog.

      Re: EMF Sensitivity, I’m quite curious to know what credentials qualify you to make such a statement.

    • ymoran00: Come to my house; I’ll dunk your hand in water, then shove your fingers in an electrical outlet while you tell me there’s ‘no mechanism by which a human body can feel electricity.’

  9. It is real. There are doctors, MDs that confirm it is real. It is covered by the ADA. Just because you do not understand the condition, does not make it unreal. In fact, your lack of willingness to have compassion or understanding is the very reason why people with this condition or forced to live like this, die from this, lose everything, face homelessness, etc. I hope for your sake, you or anyone you love, never falls ill with this condition and has to live with the horror and exclusion that comes with it. I wouldn’t wish that on anyone, even those that deny and and judge those with this incredibly awful disability.

    • I’m conflicted about the disclaimer in the podcast that its aim wasn’t about whether the illness is “real” or not. It strikes me as weasel words but I trust 99pi and believe they produce podcasts as honestly as they can. I think the big disconnect here for me is that I simple cannot put the true causes of MCS aside to ponder the associated design issues. The injustice of a community of people living in extreme isolation based on an unproven, unscientific diagnosis is a hundred times more important that the logistical challenges of watching TV without getting too close to one. I just can’t put one issue aside to talk about the other.

    • Evidently you haven’t heard of an experiment known as ‘Pavlov’s Dogs.’

      Scientists would feed a set of dogs, and measure their salivation (a reflexive process, not under conscious control). They would then routinely ring a bell, then feed, and make the same measurements.

      Eventually, the dogs in the experiment salivated at the sound of the bell alone.

      By your logic, the food never existed.

    • Ignorance and skepticism are your privilege. Feel lucky you have that privilege. Unless you are trained in the field of Environmental Medicine, or are dealing with the condition you have no knowledge or experience to judge or form opinions. Nor is it your business. In case you do not know, the ADA is the Americans with Disabilities Act. People with MCS are covered under this act and we legally have the right to sue those who discriminate. So keep it up. Say it to someone’s face with the condition or deny someone access. Get to know someone who is facing this and get out of your head. It is real because it is real. Not because it is too hard for you to face the reality. The conversation never ends for those of us who actually deal with reality.

  10. Most doctors are not scientists or researchers. They are essentially body technicians. Just because a doctor decides he or she is going to assert a label on something they cannot measure, does not make the condition real. It’s like fibromyalgia. For the longest time it was a word that meant “you have pain I don’t understand”. Before an established set of mechanisms that define what caused it were found it was just a word that means “you have pain I don’t understand”. MCS is similar. If mechanisms exist, it is real. Until they are found to exist, it is just a word that means “you have symptoms caused by something I don’t understand”.

    • Trollking: I find your remarks to me immensely more reasonable, and your description of doctors accurate. History is full of similar examples. Science is about continually unlearning and relearning.

      Just because a precise mechanism of injury has eluded the mainstream who by admission are dismissive, doesn’t mean that one doesn’t exist.

      Absence of evidence is not evidence of absence.

  11. To what end pain, whether Mental or physical, should be withstood because we can’t understand Everything is a really mystery. The idea that one could consider not wanting to surround ourselves with toxins in ANY WAY pathological is absurd.

    Regardless of root causes, to walk away from something that causes pain is a survival instinct. That is not insanity.

    Pouring poison on food? Clear cutting? Fracking? Debate the causes and since behind disease? Have at.

    Rip people to shreds personally for seeking health? Not ok.

  12. Wikipedia isn’t perfect but follow the first link in the podcast intro above to the Wikipedia page for MCS. You’ll see a long history of lack of evidence for, and good evidence against, MCS being caused by environmental factors. When double blinded placebo controlled trials keep showing MCS sufferers react the same to placebos as the chemicals they blame, you’ve got to take that seriously. To ignore it is to deny these people the best care science can offer.

  13. I get migraines from fabric sheets. Doctors offer me proactive. I don’t use dryer sheets. Where does that make me pathological?
    Science offers psychiatric medication. That’s IT. Reason would suggest that if something makes us feel sick we would avoid it. This is not in any way irresponsible. The brain, neurological elements not psychology or mind, causes dysfunction on many levels which we have yet to come close to understanding. Kids with autism often have sensory issues. Forging them to “get over it” backfires and causes psychological harm. Adaptations include dialing back toxicity and sensory harm. It’s just kind.

  14. 1. This episode had nothing to do with design.
    2. As many have stated, these people clearly have mental, not physiological issues.

  15. I appreciated and enjoyed this episode, and felt that it was relevant to design. Design doesn’t have to be orchestrated through an iterative process or by any other order of development — it can simply come to be from a single seed, through the combined efforts of individuals, as was the case in Snowflake’s community. This was an intentional community, one with set parameters for how these people may remain comfortable in their lives. The major design constraint is their shared illness, and the cause of this illness is beside the point of the show — this is social design. It has allowed these people be comfortable and receptive to each other’s difficulties, whether the issue is psychological or physiological can be left to medical experts.

  16. If this were the first 99 Percent Invisible episode I’d heard, I’d never listen again. So I hope there are no more like it in the pipeline. If you want to tell stories about how people respond to psychosomatic illness without offering a shred of critical thinking, then you’re way off your mission to tell stories about design, and you’re just demonstrating that maybe you can’t be trusted on other matters.

  17. I feel like this was an attempt at putting out an interesting story by the weekly deadline. I’m still a faithful fan, but I call for a return to the basics! Let’s see the everyday design!

  18. I’m a new listener and am frustrated by all these comments debating on whether or not mcs is a mental illness or a real one. This isn’t the space for such a debate. I will say that i enjoyed the episode, in fact i had wished it was longer and i could’ve heard more about how these people had designed their lives accordingly. I was pleased that Delaney (the reporter) was able to be so impartial and treated Susan (the woman she interviewed) in a courteous and respectful manner, as i would hope anyone who is granted an interview would treat their subject. i thought its was well done, interesting, and out of the ordinary. good job gang

  19. I completely agree that theses people are suffering from mental illness and it is disappointing that the show is kinda encouraging their mental illness and wanting to make us feel a certain way with the phone call and how they are talking about it. But it does have to do with design, she designed her home to keep away the things she feels will hurt her

  20. You know what, guys? Even Wikipedia has recently updated its originally dismissive article about MCS with recent clinical trial information.

    Also, skeptics and sufferers alike should read Discover Magazine’s November 2013 article about MCS/TILT. It’s very helpful, and the ensuing discussion among readers is even livelier. With plenty of naysayers to keep the skeptics happy.

    Here’s my contribution from the I-have-MCS camp: I cannot smell most of what I react to. Which is a problem, because there’s nothing to warn me before I start having the symptoms.

    From my personal experience, it’s real, it’s extremely difficult to manage and still have an involved, satisfying life, and this constant scoffing is probably responsible for the fact that I had the problem for 30 years, saw a gazillion doctors, and not one thought to suggest this line of investigation.

    Idiots.

    Good luck to everyone who knows from personal experience that it’s all too real and is taking steps to build a positive, productive life around the many, many limitations.

  21. The same was thought of fibromyalgia, until one day, they discovered its mechanism of injury and confirmed it was NOT imaginary nor psychosomatic.

    http://www.redorbit.com/news/health/1112877149/fibromyalgia-tissue-pain-hands-feet-fatigue-061813/

    The audacity of a such a supposition. To claim that millions of people must be mentally ill simply because YOU don’t fully understand how the dots connect.

    I realize now that most in the comments are speaking out of fear. They are afraid. They beleive that to acknowledge the existence of such a dreadful illness opens themselves up to ‘suddenly’ becoming afflicted. The sad truth is that if they merely educate themselves and fosterd the spread of information rather than disinformation they would know this not to be the case.

    There’s a name for this behavioral deficit. It’s called cognitive dissonance, and I hope that you all seek mental help.

    • Are you being deliberately ironic? Because the last sentence of this post is either the work of a lunatic or a comic genius!

  22. Google “Toxic Induced Loss of Tolerance (TILT)”. What happens is that the total exposure of the body to chemical and electrical toxins produces extreme sensitivity to the same. It is not all in their heads, and, contrary to one of the first posters, research is increasingly showing that the TILT and NCS phenomena are not psychosomatic.

    • Can you please tell me what an ‘electrical toxin’ is? Some links to peer reviewed medical journals would be greatly appreciated.

  23. Yikes. As a person with disabilities who focuses on helping other PWDs who have been conned by the alternative medicine industry, I couldn’t bear to listen to this. This is enabling and creepy, and in really poor taste.

  24. http://www.ncbi.nlm.nih.gov/pubmed/18568800

    There’s a double blind placebo trial on people with MCS. It’s either hypersensitivity that hasn’t been demonstrated for any reason scientifically, or psychological.

    I don’t expect the extra crunchy podcast that I like, 99pi, to handle this objectively, but I wish they would have had some expert talk about the disorder, it felt like a much shorter than usual episode and it was more like a report that Chelsea Clinton would have done, than anyone I have enjoyed at 99pi.

  25. It’s almost definitely the case that the lady in the first instance was psychosomatic. Allergic to electricity? Not a chance that’s a real thing. At the beginning she mentions smelling cigarettes on the interviewee’s blouse. Don’t buy it and it could be tested.

  26. I’m as big a skeptic as anyone, I think, but part of that is critical thinking and I’m not seeing much of that in these comments. I know that I’ll start sneezing if I walk past a perfume counter at a department store. If that’s true, then why not sensitivity to laundry detergent? Or cigarette smoke? Or gas fumes? And if mine is just a minor sensitivity, couldn’t others have something more hard-hitting? Oh, I’m sure some of these folk will be having psychosomatic illnesses; but ALL of them? I think not. I’m keeping an open mind on this one.

    As for sensing electricity, ever stood under a large pylon? Or out in a thunderstorm? Yes, sensitivity to smaller charges sounds unlikely, but I doubt it’s absolutely impossible.

    BTW – I think 99% does a great job of tackling issues like these (the prison SHUs is another that springs to mind) in a thought-provoking way that takes a neutral view yet still makes a point. I think the balance is just right, and don’t ever change it guys!

  27. Chemical free Oakland, California? I have to say, I agree with many comments before me that 99pi treads a tricky line to report on this town without “entering the fray” of discussing the validity of the condition. Especially when you make light of it in your closing credits.

  28. I’ve been listening to 99PI for years & as a suffer of MCS I found this episode especially interesting.

    The quick version of my story:

    When I was in high school, my family was living in a brand new house. After living there a couple years, I started getting migraines every day. I got tested for everything from a brain tumor to thyroid problems, but everything came up negative. I’d had the same doctor since birth and he knew me well and could tell something was wrong with me, but had no idea what it was. Finally a family friend suggested that maybe something in our (new) house was making me sick, and after moving out I felt better almost immediately. I only got migraines when I hung around my family’s house for too long.

    I noticed a trend of getting migraines any time I spend time in new buildings or around construction. Spending more than about 15-20 minutes in IKEA or near a construction site would give me a horrible migraine & I’d start shaking & sometimes throw up and then sleep for sometimes 24 hours straight. But the worst was when I went in to a cadaver lab with a sign warning about formaldehyde on the door—it hit me like a wave & I immediately got sick. It turns out formaldehyde isn’t just used for cadavers but is also used in pretty much all synthetic building materials.

    So for nearly 15 years I’ve been doing everything I can to avoid formaldehyde. I’ve dropped college classes when they were held in too new of buildings. I’ve had to quit jobs when they decided to do building upgrades. I’ve lived in old apartments where I’m glad that no upgrades have been done in years. Etc.

    In the last couple of years, synthetic fragrances have started to really bother me too. I had these sores for about two years on my ears & in my nose that wouldn’t go away no matter what the dermatologist prescribed. And I was sneezing all the time—several times a minute all day long—despite taking allergy medicine daily. As soon as I switched my shampoo, lotion, deodorant, etc. to more natural fragrance free varieties, the sores magically healed & I stopped sneezing.

    Honestly, hearing this episode just made me grateful that I don’t have MCS any worse than I do. I’m still able to live a fairly normal life.

    Think what you will about me & other people with MCS being crazy. I would think the same thing if I hadn’t experienced it firsthand. I’m not much of conspiracy theorist, but I’ve read some things about lobbyists from chemical companies doing everything they can hold back research on MCS & push the psychosomatic angle, and I wouldn’t doubt it. But I know I’m not crazy.

  29. I’m also disappointed that your story didn’t report at greater length on the scepticism surrounding this condition. Whether its symptoms are purely psychosomatically induced, or there is a real chemical sensitivity issue that simply hasn’t been discovered yet, the fact is that its sufferers would be better off being monitored by a physician rather than living in isolation out in the sticks and trying homebrewed recipes like sequestering their electronics and using “aired-out” (!) TVs.

  30. Pingback: EMF Refugee | Truth11

  31. Psychosomatic?? Some of us have endured grueling testing before being diagnosed. Results are completely reproducible. No amount of talking or counseling or positive thinking stops them from happening every single time there is an exposure to the specific chemicals that are a problem.
    No I don’t live in Snowflake and no I am not fixated on the condition, but I do protect myself since there isn’t a known cure YET. In spite of having this hideous condition, and being debilitated by it, I probably lead a more productive life and do more far reaching good in the world, in another subject, than many of the naysayers who are spouting off as if they actually knew something.

  32. To those who think it’s all in our “head!” I just hope you don’t have to go through what so many of us are going through. I developed chemical sensitivities after working in formaldehyde and other horrible chemicals. I was a normal person before this. It has messed up my whole life from my breathing to eating. You should be thankful that you are fine and not like us. Don’t make fun of or accuse until you’ve lived one day like we with chemical sensitivities have to.

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