<nettime> Guardian > Mae Ryan > Allergic to life

[nettime's hypoallergenic reader <nettime@kein.org>]

< https://www.theguardian.com/society/2016/jul/11/snowflake-arizona-environmental-illness >

Allergic to life: the Arizona residents 'sensitive to the whole
world'

In Snowflake, people tell Kathleen Hale they have found refuge in
the desert to escape fragrances, electricity, Wi-Fi and other
facets of modern life

by Mae Ryan

Monday 11 July 2016 07.00 EDT Last modified on Tuesday 12 July
2016 09.29 EDT

A lot of things caused Susie pain: scented products, pesticides,
plastic, synthetic fabrics, smoke, electronic radiation -- the list
went on. Back in "the regular world", car exhaust made her feel
sick for days. Perfume gave her seizures.

Then she uprooted to Snowflake, Arizona.

"I got out of the car and didn't need my oxygen tank," she said,
grinning at me in the rearview mirror. "I could walk."

There are about 20 households where she now lives. Like Susie,
most of the residents in Snowflake have what they call
"environmental illness", a controversial diagnosis that attributes
otherwise unexplained symptoms to pollution.

My knees knocked together as she swerved on to another dirt road.
Mae, a Guardian film-maker, was busy shooting scenery from the
front seat. We'd come for four days to find out why dozens of
people chose to make their homes here, and Susie had agreed to
host us only if we did not seek outside opinion from psychiatrists
regarding their condition.

"He's got it bad," she said, nodding at a neighbor's driveway. The
sign out front read: "NO UNINVITEDS".

My eyes darted on barbed wire cattle fences and dead Juniper
trees. White mountains swam in the distance. We stopped, and Susie
motioned for Mae to open a gate decorated in yellow Christmas
tinsel.

The idea that modern conveniences cause pain dates to the mid-19th
century. In 1869, doctor George Beard published several papers
blaming modern civilization and steam power for ailments such as
"drowsiness, cerebral irritation, pain, pressure and heaviness in
the head".

According to him, other indications of chemical sensitivity
included "fear of society, fear of being alone, fear of
contamination ... fear of fears ... fear of everything".

He called the illness neurasthenia. Susie called it being
"sensitive to the whole world".

Susie had warned us that Deb, a sort-of-roommate who lived in her
driveway, was extremely sensitive to scents. In order to protect
her, we'd agreed to various terms: we would not a get rental car
or stay at a motel, because those were places where chemical
cleaners were used. We would wear Susie's clothes, and sleep at
Susie's house. She also made us swear not to get any perms before
we came, which made me think she had been in the desert for a long
time.

For weeks, Mae and I avoided makeup, lotion, perfume, hair
products, scented detergent, fabric softener, dryer sheets. We
used fragrance-free soap and shampoo, as well as a natural
deodorant, which, according to the description on the box, was
basically a rock picked off the ground with a cap on it.

Despite our best efforts, Deb's sensitive nose picked up our body
odors. For her, we reeked like a Bath and Body Works store flooded
with vodka -- or as she put it, "floral, with chemical solvents.
You're fragrant."

Snowflake was not easy to get to. I'd risen at dawn, vomited on a
tiny six-passenger plane, and walked one mile down a busy highway
in a town called Show Low (160 miles from Phoenix) to get to
Susie's car.

"We'll do our best to get you cleaned," Susie promised us. "I got
lots of hydrogen peroxide."

It was decided that the best way to get us straight from the car
into the shower, where we could wash the outside world's chemicals
away, was to enter the house completely naked. So we took off our
clothes and marched without dignity across the gravel driveway.

"You can have first shower," Mae said, wrapping herself in a
towel. We had only known each other for a few hours.

Susie's bathroom, like the rest of her one-room, off-grid house,
was wallpapered in heavy duty Reynolds wrap. Above the toilet, a
small, sealed window looked out at the desert. I scrubbed off with
a bar of olive oil soap and inhaled the metallic scent of hard
water. It was the only thing I could smell.

Someone knocked. Mae reluctantly asked if I wore underwear. "We're
playing dress-up!" Susie shouted from the other room.

I realized what Mae actually meant was, Did I wear Susie's
underwear? I hesitated for a moment, considering the alternative:
going commando in a sandy environment.

"Hey, Kathleen!" Susie yelled. "Do you?"

"I wear underwear," I called.

Later, we gathered in the kitchen. Deb is sensitive to grains, GMO
foods, preservatives and all artificial flavoring and coloring, so
we ate cabbage soup for dinner.

Afterward, Mae and I ducked behind a curtained-off partition to
consider our sleeping arrangements: two metal cots, one broken,
and zero blankets, (because blankets are absorbent and, according
to local logic, our pores were still "off-gassing" dangerous
chemicals). Nighttime in the desert is freezing, and Susie's house
did not have heating. I wanted to be unconscious and regretted my
semi-recent decision to start weaning off sedatives.

Asked whether she might at least have some padding to cover the
iron springs, Susie retreated outside, shouting over her shoulder,
"FYI, the rats here are aggressive." She returned with dirt-caked
bathmats. "There," she said, turning off the lights. "Comfy."

That night Mae and I, who were complete strangers just the day
before, had to hold each other for warmth. I reminded myself that
whatever discomfort we felt paled in comparison to how Susie and
Deb had suffered in the regular world.

Susie grew up in forested northern California, and spent most of
the 1970s in the Bay Area, working odd jobs and traveling with her
boyfriend. As friends started dropping like flies from an illness
nobody could understand, Susie endured respiratory,
gastrointestinal and neurological symptoms. It hurt her feelings
when doctors suggested she might just have anxiety.

While the Aids epidemic kicked into crisis mode, Susie's symptoms
got worse, intensifying whenever she smelled smoke or saw power
lines. Unable to function, she moved back home, where, through an
autodidactic game of trial and error, she identified what
triggered her worst symptoms. She slept on her parents' porch, or
on the bathroom floor, because those were the only places she
could breathe. Her mother collected rain for her to drink.

Now using a wheelchair, she returned to San Francisco to pursue a
master's degree in disability policy. She launched the Reactor, an
environmental illness advocacy newsletter, which circulated via an
underground network of hypersensitive people throughout the
country. An environmentally ill reader told Susie the air where he
lived was "clean enough for him to manage" and in 1994, Susie
followed him to Snowflake, where the tiny community (only a
handful of people at the time) immediately rallied around her.
Within a year, her father and neighbors pooled their resources to
build her a house -- "a little, safe place".

Meanwhile, across the country, Deb's life had never felt more
dangerous.

Like Susie, her initial thought was Aids. After ruling that out,
she juggled endless skepticism. Even those who believed she felt
ill wrote it off, saying she'd bounce back.

Deb had always been strong. As a child living on Lake Michigan,
she sailed and played sports. After attending Michigan
Technological University, she worked for nine years as the only
female metallurgical engineer at Bendix aircraft; her specialty
was failure analysis. Snowflake

When she and her husband became pregnant, Deb kept working,
inhaling zinc and cadmium -- nobody told her not to -- but all she
could smell were her co-worker's cologne and aftershave. Scented
products sent her body into crisis. She vomited a lot.

After giving birth in 1992, Deb left work to parent full time. She
lived in a moldy house with a smoky furnace. Infections
blow-torched her sinuses, turning into migraines that hit her like
an ax. Her weight plummeted to 75lbs. Doctors said she was
anorexic.

Finally, Deb couldn't take it anymore. She left Michigan when her
daughter was 16 and became itinerant, sleeping in her truck,
because unlike plastic or drywall, metal emitted no chemical fumes
and was safe.

The same word-of-mouth network eventually led Deb to Snowflake,
where she performed chores for the environmentally sick in
exchange for food. By the time Susie spotted her boiling out
clothes for a neighbor, Deb had been living in her truck for five
years and needed a place to park. The two women became a domestic
duo. Deb cooked "clean food" for Susie on the hot plate. They made
each other laugh, and protected one another. Susie remained
compassionately straight-faced when Deb finally admitted she
hadn't seen her daughter in seven years.

By the age of 67, Susie had finally put her master's degree to
use, although not in the way she had originally intended. She had
become Snowflake's unofficial welcome wagon, local therapist and
advocate. She sat with men and women who were sick with something
no one else believed in, and she believed them. She fielded at
least five long phone calls a night from the bedridden and lonely,
talking to them for as long as they needed company. She helped
people with the arduous paperwork involved in collecting
government aid. She reassured them that their illness wouldn't
kill them -- it would only "hurt, a lot".

Everyone we met loved her, and got tears in their eyes when they
said so.

Historically speaking, settlers' reasons for uprooting typically
establish the hierarchy of wherever they resettle. Puritans
relocated for religious reasons, so the devout became popular.
Forty-niners rushed in search of gold, and those that struck it
gained status.

But people came to Snowflake to nurture disease, and so, here,
illness acts like a social currency. Being "normies"- a mostly
derogative term meaning that chemical fragrances and electricity
didn't (yet) cause us debilitating pain -- not only dropped Mae and
I into a category of people who had historically hurt, abandoned,
and misdiagnosed everyone we were about to meet, it also ranked us
as lepers.

Luckily, I was about to become very sick.

On day two, I woke with a headache, and Mae's hair in my mouth. My
headache was snowballing into nausea. I was starting to feel
familiar, flu-like symptoms which pave the way for emotional
darkness.

I had begged to write about Snowflake because I identified with
the idea of sick people retreating to the middle of nowhere to
find peace. Almost two years earlier, I had a mental breakdown and
retreated to a psychiatric hospital for two weeks. Medication and
therapy brought me back to reality. I felt I recognized the urge
to leave everything behind.

In the almost two years since my mental breakdown, sticking to the
to-do list they gave us at the psychiatric hospital (sleep; eat;
take medication) had, at the very least, made me feel in control.

Now, each item had been compromised thanks to our sleeping
arrangements, the unsatisfying house staple (cabbage), and my
personal desire to, at some point, become pregnant with a baby
that did not resemble an octopus.

"I'm starting to think now might not have been the best time to
start tapering off psychotropic drugs," I said to Mae, who barely
heard me.

"There's a situation," she replied.

In the kitchen, Susie and Deb revealed that trust issues had
developed between us. The night before, Mae and I decided to
charge her camera battery, and apparently it had kept Susie awake.

"But we could hear her snoring," I said.

"You hurt her," Deb said.

They wanted to know how they could be sure that we weren't just
another pair of journalists here to play games -- to test their
disease with shenanigans, and make fun of them?

Deb said we couldn't fool her.

As proof, she relayed a story about how, once, when her daughter
was "10 or 12" they'd gone together to the grocery store.

"I lost track of her and her friend," Deb said, smirking proudly,
"and then I found them, and I could smell it. They claimed, `No,
no, no,' but I knew they'd gone and done perfume samples. So,
we're in the car, and they're giggling to themselves, and I told
them to get out."

That was the end of the story.

"Did you make them get out of the car?" I said

"Well, yeah," she said, looking confused. "We were only about
three miles from home." She turned the car around "eventually".
But I couldn't help seeing it from the daughter's point of view: a
friend had come over, they'd been left on the highway.

I worried we were about to get kicked out, too.

Deb said, in order to trust us going forward, we had to promise we
weren't going to write anything but a positive piece that would
clearly inform readers of the clinical validity of environmental
illness.

"We can't promise that," Mae said.

A general silence fell over the aluminum foil room. Deb, who had
been pretty emotionless up until now, looked like she might cry.
Our chance at writing a story seemed to be disintegrating. So I
cleared my throat and prepared to overshare in order to hopefully
diffuse things.

"I'll tell you a secret," I said.

I told Susie and Deb that I knew how it felt, at least a little
bit, "to be sick, and have nobody believe you", I explained how,
four or five years earlier, my hair started falling out, and I had
this awful, burning sensation on the back of my scalp that was so
intense I used a bag of ice as a pillow, and how I felt nauseous
all the time, and tired, and cried a lot. The word "diarrhea" had
already been introduced a number of times by Susie and Deb to
describe their own symptoms, so I plugged that in, too.

They softened. When I got to the part about how every other doctor
I saw that year said I was fine, physically speaking, and had
referred me to a psychiatrist, they scoffed knowingly and
protectively. They asked what my environment had been like; I
thought they meant emotionally so I told them how I moved to New
York for this guy, James, and we signed a lease together, broke up
after one month -- then I lost my job, and had no savings -
"la-la-la".

Susie cut me short: "No, your physical environment." I remembered,
with a lurch, that our apartment had been downwind from a dry
cleaners. I used to go stand next to its vents because the
detergent smelled great compared to the chicken slaughter plant
down the street.

Susie and Deb looked like they wanted to high-five. My depression
had been a symptom of environmental illness.

"They use all sorts of chemical agents to clean slaughterhouses,"
Deb said excitedly. "When you left, did the symptoms go away?"

"No, but they started to, a little, when this doctor friend of
mine said to try eliminating gluten."

"The gluten, that's what happened with me!" Susie said. "That's
one of the things I found I was sensitive to. It's commoner than
people think."

"For me, personally, it was a placebo," I said carefully, clocking
their disappointed looks. They cringed even more when I used the
word "psychosomatic".

"The gluten-free thing helped for a long time, especially with the
shitting my pants problem -- I think just controlling my
environment probably helped. But the scalp burning didn't go away
until a dermatologist prescribed me antidepressants."

"That's not me saying the symptoms weren't real," I continued -
and in my nervousness that I'd once again offended them, I then
farted so shrilly that Mae laughed in shock.

Susie just shrugged and Deb remained completely impassive, as if
maybe she hadn't heard, which was not possible. Chemicals bothered
them, but bodily functions were fine.

Given the progress made by discussing my medical history, I
publicized my current headache. Susie scrambled to get me Tylenol,
and Deb graciously explained that this was yet another sign my
body was dumping toxins from the regular world.

My illness had immediately elevated my status in the household.
"Here you go," Deb said, handing me a mug. Susie tapped pills into
my palm.

After almost 24 hours of being told I stank and generally being
treated like a contagious freak, I was so grateful for these
ministrations that I went to hug them. Susie acquiesced, but Deb
said I was still too fragrant for us to embrace.

"But I changed my mind," she said to Mae. "I'll let you film me,
if you want."

Susie and Deb, like most of their neighbors, receive disability
checks. But welfare has not made them complacent. It isn't easy to
apply for disability when you suffer from an illness that most
refuse to recognize. And even if you do receive some aid, the
checks could stop at any moment. All it takes is one Arizona
bureaucrat looking at your file and deciding that your sickness is
made up.

Over and over again, residents emphasized to me that they wanted
to work, they missed working -- they had no identity now, they
said, no sense of self worth. Many, like Deb, were former chemical
engineers. They were smart, easily bored, and embarrassed by what
they worried some might misconstrue as laziness, or mooching. I
believed them when they said they wanted jobs. I also believed
that they were far too sick to work. Many spent entire days in
bed, eyes cinched against the blinding pain caused by their
illness.

"People here suicide themselves," Susie said, as we trudged around
the desert, collecting rocks. Our boots crunched on petrified
rabbit shit. Susie told us about a friend with environmental
illness who had killed himself a few months prior.

Related: Green Bank: the town that banned Wi-Fi

"He wasn't depressed or anything, he just couldn't take it
anymore, so he starved himself," she said. Apparently it was
common, around Snowflake, for people to kill themselves. Susie
estimated that it happened around twice a year, which, given the
shifting population, I pointed out as an epidemic.

"We bury our own dead," she said.

"I'm so sorry," I said.

Many of the people we met had finally found doctors who believed
them. Before, in the regular world, after enduring years of
humiliating check-ups and stints in the emergency room, they
relegated the medical profession to enemy status. Now, they spoke
adoringly of their physicians, most of whom practiced integrative
health -- a blend of western science, holistic healing and
one-on-one therapy. As long as I framed environmental illness as a
physical phenomenon, Snowflakers were happy, even eager, to
communicate. But they got angry if I broached their illness, even
obliquely, as a psychological phenomenon. They had spent years
feeling sick and battling skeptics. The last thing they wanted was
to be told by an outsider, who had just met them, that they were
crazy.

I didn't blame them. Later, breathing through another stomachache,
I scanned my notes, rereading scrawled concerns based on various
conversations about the potential that everyone we met had some
form of extreme PTSD, either from being sick, witnessing a
nationwide health crisis, or -- as had cropped up in one or two of
the conversations -- from being sexually assaulted.

When I asked Susie whether she took any medications for her
environmental illness, she cackled, at first, like a little girl,
and said, "None of your business!"

"I do, though," she continued after a pause. "For seizures."

Certain psychiatric drugs double as anti-seizure medications, so I
rattled off a few familiar brand names. Susie nodded at one I
took. I wondered if we had the same thing, whatever that was.

On our last morning in town, Deb intercepted me in the driveway to
explain how fragile I was. She had been thinking about my symptoms
- the headache, my history of so-called depression and my
menstrual cycle which started two weeks early on our second day
there.

"My therapist says it's just stress," I said. "I feel like maybe
we recognize something in each other. We just want to call it
different things."

She shook her head. "You have environmental illness, I can sense
it."

In a quiet, tentative voice, she explained to me that there was,
in fact, an objective, scientific way to test me for environmental
illness; she could do it right then and there.

The procedure would be relatively painless, but I couldn't mention
the specifics in my piece.

"I feel like this will sound more ominous than it is if I leave
out the details," I said as we went through with it.

"People will think we're crazy," she said.

"I am crazy," I said.

"No," she said.

After we finished, I lingered in the doorway while Deb searched
the dark house for her glasses. I was no longer permitted indoors
because I had changed back into my own clothes, and the scents
emanating from my regular world apparel had already caused Deb's
ears to swell, making it hard for her to hear. It was time to go,
but Deb said the apparatus she used to diagnose environmental
illness wasn't working, so she would have to be in touch. I wrote
down my phone number and email address.

"Can I give you a hug goodbye?" I said.

"Not in those clothes," she said.

As Susie ferried us back into society, beef cattle glared at us
from the ditches, and calves stumbled in the road. Susie told us
she didn't see any overlap between mental and environmental
illness. Certain substances were physically poisonous, and that
was the end of it.

"If someone is reckless or careless about exposures that will
cause issues for you, that is, to some measure, assaultive," Susie
said.

"Assault, that's a strong word," Mae said.

"Yep," Susie said. "That's why I say it."

At the airport gate, I remembered the emergency Valium in my bag,
and all of my stress went away. But it wore off on the flight, and
by the time I got home, I felt the sadness in my blood. I almost
hoped Deb's test would work -- that she would find something
scientific to substantiate how shitty I sometimes felt.

A few days later, Deb and Susie put me on speakerphone, because
holding the receiver to their head triggered neurological
problems. Once again, they wanted me to tell them exactly what I
would write about them. They worried I might make fun of them. I
told them that wasn't my intention, but that I tended to tell the
truth, at which point Deb told me that my test results had shown
her that I was sick.

"But I can help you."

"We can help you shave off a couple years of fruitless effort,"
Susie added.

"What's wrong with me?" I said.

Deb promised she would tell me, eventually. But only after she
read this piece.

"Isn't that, like, blackmail?" I said.

Susie and Deb started to laugh, softly and shrewdly.

I'm still waiting for my results.

* This article was amended on 12 July 2016 to reflect that the
Arizona town of Show Low is formatted as two words, not one, and
is pronounced phonetically.

© 2016 Guardian News and Media Limited or its affiliated
companies. All rights reserved.

#  distributed via <nettime>: no commercial use without permission
#  <nettime>  is a moderated mailing list for net criticism,
#  collaborative text filtering and cultural politics of the nets
#  more info: http://mx.kein.org/mailman/listinfo/nettime-l
#  archive: http://www.nettime.org contact: nettime@kein.org
#  @nettime_bot tweets mail w/ sender unless #ANON is in Subject: