|July 11, 2016|
Allergic to life: the Arizona residents 'sensitive to the whole world'
|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 Showlow (pronounced YOLO, 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.
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.
"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.