The Sensitives: The Rise of Environmental Illness and the Search for America's Last Pure Place - Couverture rigide

Broudy, Oliver

Couverture rigide

ISBN 10 : 198212850X ISBN 13 : 9781982128500

Editeur : Simon & Schuster, 2020

Synopsis

A compelling exploration of the mysteries of environmental toxicity and the community of “sensitives”—people with powerful, puzzling symptoms resulting from exposure to chemicals, fragrances, and cell phone signals, that have no effect on “normals.”

They call themselves “sensitives.” Over fifty million Americans endure a mysterious environmental illness that renders them allergic to chemicals. Innocuous staples from deodorant to garbage bags wreak havoc on sensitives. For them, the enemy is modernity itself.

No one is born with EI. It often starts with a single toxic exposure. Then the symptoms hit: extreme fatigue, brain fog, muscle aches, inability to tolerate certain foods. With over 85,000 chemicals in the environment, danger lurks around every corner. Largely ignored by the medical establishment and dismissed by family and friends, sensitives often resort to odd ersatz remedies, like lining their walls with aluminum foil or hanging mail on a clothesline for days so it can “off-gas” before they open it.

Broudy encounters Brian Welsh, a prominent figure in the EI community, and quickly becomes fascinated by his plight. When Brian goes missing, Broudy travels with James, an eager, trusting sensitive to find Brian, investigate this disease, and delve into the intricate, ardent subculture that surrounds it. Their destination: Snowflake, the capital of the EI world. Located in eastern Arizona, it is a haven where sensitives can live openly without fear of toxins or the judgment of insensitive “normals.”

While Broudy’s book is wry, pacey, and down-to-earth, it also dives deeply into compelling corners of medical and American history. He finds telling parallels between sensitives and their cultural forebears, from the Puritans to those refugees and dreamers who settled the West. Ousted from mainstream society, these latter-day exiles nonetheless shed bright light on the anxious, noxious world we all inhabit now.

A propos du livre

À propos de l'auteur

Oliver Broudy is a freelance journalist living in western Massachusetts. He has written for Men’s Health, The New York Times, Mother Jones, and many other publications. His work has taken him to China, Afghanistan, New Zealand, and elsewhere. He has written about pop stars, sports stars, kung-fu, anarchy, and lots of weird medical conditions. He’s been a finalist for the National Magazine Award and his Amazon singles have twice been named best single of the year.

Extrait. © Reproduit sur autorisation. Tous droits réservés.

Chapter 1: The Disappearance of Brian Welsh

CHAPTER 1 The Disappearance of Brian Welsh

Brian Welsh was not acclaimed in any of the usual ways. He was no football star or academic prodigy. He was no senator’s son. In fact his dad was a verbally abusive factory worker who, thankfully perhaps, died young from emphysema.

Growing up in Michigan, Brian was well liked by his peers, one of those good-natured extroverts for whom clowning and raillery came easy. After high school, he studied journalism at the local community college, drove a forklift at a lumberyard to pay the bills, and eventually got married. When the lumberyard job disappeared he trained to become a respiratory therapist. For a boy from Muskegon, life wasn’t looking half-bad.

And then, within the space of a few years, Brian found himself cast out of his own life—excommunicated by friends and family, unable to work, divorced by his wife.

It was the kind of theatrical downfall that, in a different era, would sometimes follow the breaking of some dire taboo, like getting pregnant out of wedlock, or advocating communism at the neighborhood potluck. Only in this case it was because Brian had gotten sick, and the kind of sick he got made sense to no one. Because of this he was thrust past sick to some farther margin of society’s firelight, an outer dark where order and reason gave way to uncertainty and confusion.

When it began he had no idea what was wrong with him, only that he felt tired, and could no longer tolerate certain foods. But within months he found himself too fatigued to go out at night or play sports. Then he began reacting to specific triggers in his environment. Perfume set his heart racing. Paint fumes fogged his brain. Meanwhile the list of foods he could tolerate grew ever shorter.

He tried everything he could think of—acupuncture, chiropractors, supplements, methylation, even a fecal transplant courtesy of his wife—a final favor before the divorce. Nothing worked. Eventually he reached a point where he could no longer even stand to be indoors.

The last thread parted in the fall of 2014 when the Polar Vortex swept down from Canada, rousting Brian from where he was sheltering on his aunt’s back porch. With that he was adrift, without anchor or direction.

The swiftness, the methodical thoroughness, of Brian’s unmaking carried a certain Jobean trauma. A merciless humbling that stripped away everything, from material assets like clothes and housing to conceptual assets like threat awareness and body knowledge—as well as all the relationships that gave his life meaning.

His one solace was years in coming. But eventually he figured out that he was not the only one. There were others. Thousands. Millions.

They called themselves “sensitives,” because that is what they were. Environmental factors that to others were undetectable or benign—hair spray, for instance—were to them noxious or intolerable. Almost any chemical or toxin could be a trigger, but also cell phone radiation and some types of mold. Even the slightest exposure to the most ordinary products could be debilitating. A whiff of flavored coffee could shut them down for a week. So could a scented dog poo bag, a Wi-Fi router, ice cream with preservatives. In the beginning, the list of triggers tended to be very limited and specific, but as time went on the list could grow much longer.

The most common symptoms were fatigue, brain fog, muscle aches, and memory difficulties, but could include almost anything. And efforts to avoid them could lead to strikingly aberrant behavior. Hanging mail from a clothesline for a week to “off-gas” before daring to read it, for instance. Shaving facial hair to reduce susceptibility to airborne pesticides. Yanking out teeth. One sensitive, leery of chemically saturated waiting rooms, convinced her gynecologist to conduct his examination in the backseat of her car. Another, leery of laundry detergent, went nine years without clean sheets.

The phenomenon went by many names, including Multiple Chemical Sensitivity, Idiopathic Environmental Intolerance, and Total Allergy Syndrome, but among them all I had found Environmental Illness, or EI, to be the most impartial and inclusive. First recognized in 1962, EI was believed to afflict as many as 42 million people nationwide. Over the last decade alone the prevalence had increased over 300 percent, with as much as 30 percent of the population experiencing some level of hypersensitivity.

No one was born with EI. Usually it commenced with a single massive toxic exposure, like a chemical spill, or else years of low-level exposures, as with a job at a plastics factory. Then came a bewildering period in which the victim struggled to make sense of a world where peril lurked around every corner. In the more extreme cases, this often involved exhausting their life savings on desperate treatments ranging from nutritional supplements to exorcism. Eventually, however, the attempt to cure the EI would be abandoned and the focus would shift to finding someplace in the world they could catch their breath and try to remember who they were. Some ended up in houses wallpapered in tinfoil, driving thirty-year-old Benzes with gutted electrical systems and solar panels on the roofs. Others didn’t leave their homes for years, or would only venture out wearing an industrial-grade respirator.

The endless search for refuge took its own toll. One sensitive I talked to had bought and sold four houses, losing $20,000 to $30,000 each time—and never got to live in any of them. Another said his EI had cost him $850,000. Those who had been financially shattered by the disease could be found living out of tents in national parks, or cars in Walmart parking lots, fleeing from one oasis to the next as the seasons changed—or even the winds, which often carried pollutants from nearby factories or farms.

“Sensitives,” they called themselves—but also “the new refugees,” or “runners”—this last a nod to the imperative that consumed the lives of so many as they fled one toxic exposure after another. One guy I’d spoken to claimed to have slept in 240 places in eight years. Another told me the only place he felt like his pre-EI self was halfway up Mount McKinley.

“A glacier on the side of a mountain is for me like paradise,” he said. “It’s about the only place in the world where my symptoms are gone completely.”

Talking with these folks you got the sense of a vast struggle invisibly underway all across the nation. A steady, Atlas-like exertion just to maintain hope.

“It’s almost like being a pregnant woman,” a sensitive named David Reeves told me. “A pregnant woman has all these crazy symptoms and she’s always kinda sick, and that’s what it’s like. Except, after nine months, man, it just keeps going.”

Worst of all was that no one could agree on what EI was—or whether it even existed. The mechanism of action had been theorized to include everything from immunological dysregulation to schizophrenia, but no one really had any idea. It was often associated with anxiety and depression—but whether it was a result of these disorders or a cause was unclear; nor whether the association was any greater than could be found in other chronic diseases. It appeared to be limited to Western industrialized countries—or the reporting of it was, anyway—but the epidemiology suggested no obvious pattern: radiologists in New Zealand and sheep dippers in Great Britain; log cabin dwellers in Germany and hospital workers in Nova Scotia. It was even found among employees of the Environmental Protection Agency itself, after their headquarters was renovated and new carpeting installed.

It seemed like it could happen to anyone. In fact, David, the sensitive who cited the pregnancy comparison, could very easily have been me. David was a New York publishing guy whose life fell apart after his apartment got sprayed for bedbugs. The next thing he knew he was living out of a $30 tent at the southern end of the Rincon Mountains, passing his days reading Trollope on a cracked iPad and listening to Gila monsters hump in the driveway.

“You have no possessions,” he told me, “you have the clothes on your back and a five-gallon plastic jug for carrying water. Like, that’s it. And an iPad. And that’s your life.”

The syndrome’s only other distinguishing points were that it was more prevalent among adults, less among youth and seniors; and more prevalent among women. But then the same could be said of a host of other elusive ailments, like myalgic encephalomyelitis, fibromyalgia, rheumatoid arthritis, and chronic Lyme disease.

Consequently, neither the American Medical Association nor the Centers for Disease Control and Prevention accorded EI clinical validity. As far as the entire medical establishment was concerned, it was at best quasi-real.

For sensitives, this itself was a constant source of anguish, because at the end of the day their suffering was not considered legit. Laughed at by strangers, dismissed by medical professionals, renounced as “crazy” by their own friends and family, they were rendered unpersons, denied the right to tell their own story.

One sensitive referred to EI as “the divorce disease.” Another, a former psychotherapist, told me that he often wished he’d gotten cancer instead.

“At least then people believe you,” he said.

Given the institutional conservatism of organizations like the AMA and the CDC, I was inclined to give sensitives the benefit of the doubt. The threat of chemicals and toxins was hardly unfounded, after all. Our world was awash with them. Even the AMA quietly admitted that EI could not be dismissed as merely “psychogenic.” The CDC had made no such admission, but they did make a point of forbidding air fresheners, perfumes, scented hand lotion, even urinal pucks in the workplace due to their “detrimental effects on the health of chemically sensitive co-workers.”

But even if the AMA and CDC weren’t deserving of a little skepticism I had no wish to contribute to the pain of sensitives by dismissing their experience out of hand. On the contrary, the deep, existential tenor of their suffering filled me with something like awe. It was an awe they often felt themselves.

“At times you find yourself left with only the moment you’re in,” Brian told me.

At that point suicide came to seem like a relatively trivial matter, like stubbing out the remains of a bonfire that had already dwindled to a spark. Brian had told me exactly how he would do it, gunning his pickup off a certain stretch of road just north of Phoenix. The road there was conveniently devoid of guardrails and the drop was over three hundred feet. With all his earthly belongings packed in the truck bed behind him, he said, there’d be nothing for anyone to clean up. The thoughtfulness of this detail was typical of Brian, and very much in keeping with the code of the National Parks where he had often sought refuge: take nothing but memories, leave nothing but footprints.

Maybe it was this closeness to extinction that endowed Brian with his uncanny transparency. In losing his place in society he had also lost all the affectation and obfuscation that went with it. With this stuff out of the way, talking to Brian could sometimes be disorienting as he favored you with what felt like unearned trust. If you could accept it at face value the effect was oddly elating—like a gift. But it could also be a little disturbing, as if you’d just entered a room in which the usual rules of physics no longer applied.

In one of our few phone conversations Brian had told me a story about being menaced by some local hunters who didn’t like the idea of him camping in the middle of their woods. They rolled up in their pickups cursing and threatening, and later took to stalking him at night. Yet Brian was weirdly unafraid. In fact, whenever the hunters appeared he would walk right up and engage them in polite conversation, like the forest’s own maître d’. This exasperated the hunters even more. But for Brian the animosity never registered. In embracing his own vulnerability, fear had somehow ceased to be relevant. This, too, had been taken from him—like everything else. Everything but the moment. He had become like a creature of cellophane. Not empty but translucent.

It was this same translucency that had made Brian a prominent figure in the underground EI communities flourishing online. From the extremity of his circumstance, dipping in and out of lucidity and sharing stories of his own travails—crisscrossing the country, regularly being mistaken for a vagrant, a pederast, a meth dealer, a thief—he captured and validated what everyone was feeling. That frazzled, half-mad desperation. That shattered spirit pushed way past its limits but still hanging on.

In this, Brian had become an emotional conduit for the community as a whole, modeling his translucency for a people who had become tragically obscure to themselves. His stories bespoke a collective trauma—even as he struggled every day to find and voice new reasons to stay alive. Taken together, his countless Facebook posts amounted to a running commentary on the nature of suffering itself.

“It’s not about finally finding out who you are,” he would say, “it’s about finding out what it feels like to truly be in need. To need desperately. That’s what truly changes a person.”

It was for this that he was so often called “courageous,” “an inspiration,” “a treasure,” even “a mystic.” It was for this that he was told, over and over again, to “write a book.” But then every so often when I talked with Brian he would say something so… difficult to accommodate that skepticism became impossible to suppress. Like when he spoke of moving his sleeping bag every night to avoid the ground he had polluted simply by lying on it. It was no longer a question of avoiding the contaminant, in other words. In his mind, he had become the contaminant. Or the contaminant had become him. It sounded like a story of possession. Thus the exorcism, I suppose.

It happened over and over again, this peculiar, baffled moment—and not just with Brian. Something about it was endemic to the condition. One sensitive described passing out cold when a woman walked past him at the airport trailing a cloud of perfume. Another claimed, in all seriousness, that newsprint made her ass itch. Most memorable of all was the woman convinced that a spasm in her toe was caused by a passing blimp.

The anecdotes carried a whiff of madness. Yet the distress the sensitives expressed was clearly real. In these moments they seemed to me both mad and not mad at the same time, like a particle that is also a wave—depending on how you looked at it. The effect on the mind was wrenching, like those shifts in perspective when the young woman suddenly turned into a crone, or the rabbit into a duck. Except worse because everything that went along with each perspective—how you felt about chemicals and pollution, how you felt about mainstream medicine, about government regulation, about suffering itself, not to mention the actual human being you were talking to—got wrenched with it. How you looked at them also changed how you looked at you.

Such was the riddle that had begun to preoccupy me when I learned one day that Brian had gone missing. The last anyone had heard he was somewhere on the North Rim of the Grand Canyon, $40,000 in debt, and maxing out the last of his credit cards to buy supplements from Amazon. Now, after days of silence and mounting concern from his online community, it seemed that he, like so many others of his kind, had finally succumbed to that outer dark where he had been thrust.

The wisest choice was to ignore this development—avert the eyes and carry on. But I had done that. Somehow it felt like I was always doing that.

I would not avert my eyes from Brian. I would find him, if he could possibly be found.

Détails de l'édition

• Éditeur: Simon & Schuster
• Date d'édition: 2020
• Langue: anglais
• ISBN 10: 198212850X
• ISBN 13: 9781982128500
• Reliure: Relié
• Nombre de pages: 352
• Coordonnées du fabricant: non disponible
• Personne responsable: non disponible