Living life cursed by technology

Living life cursed by technology

By Aaron Sankin on July 26th, 2015

One afternoon in 1993, Mark Donohue laid down for a nap and woke up in crippling pain. His head throbbed, his heart raced, his fatigue was bone-crushing. He figured whatever was wrong with him would eventually pass.

Twenty-two years later, Donohue’s life remains one of constant agony.

At first, Donohue suffered endlessly, powerlessly. “Imagine when you have the flu, a bad really flu,” he said. “I’m not talking about a cold. You’re sick in bed. You’re freezing, you hurt all over, and you have to figure some complicated situation out. Your brain doesn’t work. It shuts down.”

Doctor after doctor suggested a litany of possible diagnoses: chronic fatigue syndrome, fibromyalgia, Lyme disease. Nothing helped.

All he could do was track what caused his pain. The list grew: perfumes, soaps, fresh paint, newly laid carpet, pesticides, even an air freshener plugged into his auto mechanic’s bathroom. Within two years, he moved 16 times, each relocation an act of hope. By the time he found a home where he could live without pain, he’d lost his job. He was effectively disabled.

“I thought I had it bad back then,” Donohue reflected. “But I didn’t realize just how good I had it.”

About a year and a half ago, his illness evolved. The same things that had sent him into a downward spiral for decades were still there, but something else began affecting his health—the electromagnetic signals upon which virtually all modern technology is built. From cellphones to Wi-Fi, most consumer technology rests on an invisible foundation of electrical signals wafting through the air.

The stories of those suffering from EHS are worth telling. Their pain is a corollary for the unease we all feel living in a world so radically and inextricably transformed by technology.

This energy, Donohue insists, is destroying his life. A student at the University of Washington, with degrees in electronics, broadcasting, and telecommunications already under his belt, Donohue has been teaching himself chemistry, biochemistry, anatomy, and physiology through independent studies with professors, looking for insight into the neuro-immune disorders plaguing him. The school has been a refuge for him, a place he can feel productive, but the proliferation of Wi-Fi may force him out.

“You can always get away from the crowds of people and all their loud noise, smells, and energy. It’s a pain in the ass, but you can do it. I’ve been doing it for years,” he said. “When I became sensitive [to electromagnetic radiation], there’s nowhere to go. You can’t get away from it… and it’s growing and spreading. And now I seem to have a constant, pounding, stabbing headache with a God-awful tingling in my mouth.”

He’s not alone. Surveys have estimated the prevalence of people reporting a degree of self-reported electromagnetic hypersensitivity (EHS) at 1.5 percent in Sweden, 3.2 in California, 4 in the U.K., and up to 10 percent in Germany.

The condition is controversial. Within the mainstream medical and scientific communities, the list of symptoms experienced by people like Donohue haven’t been directly linked to exposure to electromagnetic radiation, and therefore EHS is not accepted as a legitimate diagnosis. In the public consciousness, the condition is still obscure. Michael McKean’s character Chuck McGill in the AMC drama Better Call Saul has EHS, and there too, it’s presented with significant skepticism. Other than that, there are few direct references to the condition in pop culture.

I interviewed Donohue over the phone. I asked him about his life and his illness, about the years of research into his condition he’s done at the University of Washington. I asked him about his hopes for the future and how those hopes have been shattered, rebuilt, and shattered again. In a way, our talk seemed cathartic. Living with EHS is profoundly isolating, and I think Donohue enjoyed the connection.

But he paid for it. Using a cellphone is difficult for Donohue. Signals from the device give him a headache, sending his brain into a funk. He’s developed a system to cope. He uses a headset to keep the phone a few feet away, creating enough of a buffer for the radiation to dissipate. Even so, Donohue was struck with a bout of extreme pain for a half hour after we hung up.

Donohue warned me ahead of time he has good days and bad days with the phone. I think he knew what the consequences would be for sharing his story with me from halfway across the country. Like many others with his condition, Donohue is marginalized by the powerful technologies you’re using to read this article right now. That’s likely why he felt it was important to take the risk.

“When I became sensitive [to electromagnetic radiation], there’s nowhere to go. You can’t get away from it.”

Even if the condition is, as many scientists believe, the result of something happening inside people’s heads rather than something bombarding their bodies from the outside, the stories of those suffering from EHS are worth telling. Their pain is a corollary for the unease we all feel living in a world so radically and inextricably transformed by technology.

The ‘nocebo effect’

The proliferation of cellphones has triggered some of the most profound sociocultural changes in history. It’s important to pause and think about that for a second. It’s something almost universally taken for granted. It is now possible to get in touch with almost anyone instantly and to pull up every piece of arcane trivia imaginable. Such possibilities were barely conceivable a quarter-century ago.

In 1996, the World Health Organization embarked on a project to discover whether the technology making it all possible is also killing us. The effort is called the International Electromagnetic Fields Project. Its annual reports aim to do for nonionizing electromagnetic radiation what the W.H.O. did for agents like tobacco and tanning beds: take a broad survey of the scientific literature, talk to as many experts as possible, and provide guidance on the issue to health ministries across the globe.

Michael McKean as Chuck ThurberMichael McKean as Chuck Thurber in Better Call Saul | Photo via AMC

While there’s been a considerable amount of research conducted on electromagnetic hypersensitivity since the project started, Dr. Emilie van Deventer, team leader of the WHO’s Radiation Program in Geneva, Switzerland, said the overall conclusions have remained largely the same. “We recognize a number of people have certain symptoms they relate to their exposure to electromagnetic fields,” said Dr. van Deventer. “The question is if the people who exhibit these symptoms really are related to their [electromagnetic radiation] exposure. This is where the research has not been able to show this link.”

She explained that studies over the years have placed both electromagnetic hypersensitives and people who don’t have the condition in double-blind situations where they may or not be in contact with an electromagnetic field to see if they can tell when they’re actually being exposed. “Very few people have a response that is similar to the actual exposure scenario,” said Dr. van Deventer. A similar experiment gets played out in a hospital scene in Better Call Saul.

In a 2012 report on the topic to the Swiss government, Dr. Martin Röösli, head of the Environmental Exposures and Health Unit at the Swiss Tropical and Public Health Institute, wrote that the “nocebo effect” was likely at work. “The ‘nocebo effect’, i.e. the fact that the anticipation of an effect on health or wellbeing can already trigger or intensify such symptoms, probably plays at least a partial role,” he wrote. “No clear differences in the constitution of people with and without electro-sensitivity have been identified which could form the basis for diagnostic criteria, and very few reports on therapeutic options or successes can be found in related scientific literature.”

Dr. van Deventer added that, in the 1970s and ’80s, people who had many of these same symptoms blamed them on other devices emitting low-frequency radiation, like video display terminals. In the ’90s, their concern began to change focus from power lines and electrical appliances to other technologies, like computers, laptops, mobile phones, base stations, and Wi-Fi. The complaints haven’t been constant over the past 20 to 30 years; they change with the technology.

Michael McKean’s character Chuck McGill in the AMC drama Better Call Saul has EHS, and there too, it’s presented with significant skepticism.

Even so, Dr. van Deventer insisted these symptoms must be taken seriously by doctors because the negative health effects of EHS are both very real and physically measurable. Also, the link between radiation and these symptoms shouldn’t be permanently discounted just because scientists haven’t found the evidence. Determining someone’s level of long-term exposure to different frequencies of radiation is extremely tricky, and most EHS patients are loath to strap themselves into an MRI and knowingly get bombarded with more radiation just to see what happens.

As such, the medical community is largely at a loss on how to deal with patients asking for help. Most doctors haven’t heard of EHS, and those who have largely aren’t helpful—leaving patients patching together treatment on their own. For his part, Donohue has tried everything from sleeping with a grounding strap around his wrist to taking magnesium supplements that supposedly block calcium channels inside of his cells.

Discussion about the merits of these remedies is rampant on online forums for people with EHS. Ironically, the need to access these virtual spaces through a computer makes these connections physically difficult for many with EHS. Nevertheless, the Internet is an essential tool for those with this condition. They go online trade tips and tricks, talking about what works for them and what’s pure quackery. In a private Facebook group for electro-sensitives, recent posts have users debating the merits of a wall-plugged unit that filters out “dirty” electricity, a homeopathic remedy for EHS, and the merits of simply placing a wooden board under a laptop to cut down on exposure. Nearly every post finds someone asking for help, and in nearly every case, there are comments offering personal experience as a guide.

However, there’s only one surefire cure for EHS: avoiding exposure entirely. In 2015, that’s nearly impossible.

The ‘white zone’

In 1998, Melissa Chalmers landed her dream job captaining planes for a major airline. She had grown up inspired by stories of her grandfather, who trained fighter pilots during World War II, and had battled sexism throughout her time in aviation school, graduating as the only woman in her class. After years of struggle, she finally felt like she was doing what she was meant to do.

Around that time, her mom bought her a cellphone. Chalmers was skeptical of it from the start. She didn’t like anyone being able to get a hold of her at a moment’s notice. If she talked on the phone for a long time, her ear would heat up and her head would go funny. When she lost the phone after a couple months, she didn’t bother getting a new one until 2006.

“I would just pick up all my messages once a week and call everybody back on my drive home from work,” she recalled. “The last time I used it, I was on vacation, I had gone out to my car and used it for like a minute. My face went numb and it stayed numb for two weeks.”

She went to the doctor in an effort to try to figure out what was wrong. The MRI wasn’t conclusive. She spent the next two days dizzy and nauseous.

The complaints haven’t been constant over the past 20 or 30 years; they change with the technology.

Chalmers ditched the phone, but suddenly radiation was inescapable. A mold problem had forced Chalmers and her husband out of their house and into an apartment in London, Ontario. The apartment was near a radio-TV antenna and a cellphone tower. Chalmers had trouble sleeping. She began having negative reactions to her makeup and hair products. She started gaining weight, and her face became puffy and swollen. She developed welts across her body.

As Chalmers got her chemical reactions under control by doing things like not wearing makeup, her electromagnetic sensitivity worsened. She began to feel bad when the electric stove was on or when she stood too close to the refrigerator. For a few months, her symptoms got completely out of control. She’d turn off all the electricity unless there was a specific appliance she needed.

Chalmers actually felt better at work than she did at home. She flew for over a year after getting sick. The plane itself wasn’t a problem. At the time, Wi-Fi was banned on airplanes in Canada, and most of the instruments in the cockpit were shielded from leakage. The main difficulty was finding hotel rooms without strong Wi-Fi to stay in during overnight layovers. “It became apparent I was going to be put into a position sometime soon that I was going to be messed up from having to sleep in a Wi-Fi room,” she said. “I’d have to cancel the flight, and the company wouldn’t like that. At no point would I want to put anybody in danger.”

When the radar on certain planes also started bothering her, the combination was too much. Chalmers went on disability and gave up flying for good. In 2011, she moved to a new home in Grand Bend, a small town on the southern shore of Lake Huron, a few years ago. There weren’t many cell sites there, at least at first, but the towering edifices that had been the bane of Chalmers’s existence in London soon followed her to Grand Band.

She joined with other local residents to fight the towers but to no avail. In a meeting with officials from Industry Canada, the government’s telecommunications regulator, Chalmers was informed that creating a so-called “white zone” free from cellular communication wasn’t an option. Chalmers felt helpless. There was nothing she could do, no place she could go—at least not in Canada.

With a dish big enough to comfortably fit a football field, the Robert C. Byrd Green Bank Telescope, operated by the National Radio Astronomy Observatory in Green Bank, West Virginia, is the largest movable land-based object in the world. More importantly for Chalmers, this radio telescope, one of the most powerful on the planet, is extremely sensitive to electromagnetic radiation. Astronomers there can’t use microwaves to heat up their lunches. In fact, the facility had to stop selling battery-operated fans in the gift shop when scientists discovered the items were throwing off their measurements.

The telescope sits at the heart of the National Radio Quiet Zone, a rectangle of land straddling West Virginia, Virginia, and a tiny corner of Maryland. The Federal Communications Commission established the region in the 1950s to keep the radio spectrum clear for the telescopes at both the observatory and the Navy’s Sugar Grove facility. Within the quiet zone’s confines, devices emitting electromagnetic radiation are tightly restricted. For electro-sensitives like Chalmers, Green Bank, population under 200, has become a rare safe haven.

Dr. van Deventer insisted these symptoms must be taken seriously by doctors because the negative health effects of EHS are both very real and physically measurable.

After locating a cabin through a friend who also has EHS, Chalmers made the 12-hour drive south to Green Bank. She could feel the difference the moment she crossed into the quiet zone. The tingling feeling that had been on her skin for years switched off. Her whole body could finally relax. Within two days of being there, her tinnitus stopped. The headache that dogged her for years went away. Her digestion got better, her vision improved.

Chalmers now splits her time evenly between Grand Bend and Green Bank, even though her situation in the latter location isn’t ideal. A farm next to the cabin where she stayed installed Wi-Fi, so she had to leave. Certain things, like Wi-Fi, are allowed in homes and businesses in Green Bank, as long as they don’t interfere with the astronomy. It’s not a protected zone for people, just the telescopes.

Chalmers now spends her time in Green Bank camping on the property of an observatory scientist who lets her use his shower and washing machine. She knows other electro-sensitives there who are living in their cars.

Places like Green Bank are few and far between. Locations where electro-sensitives can live without fear of being triggered, by real or perceived radiation—while still less than a half-hour drive from the nearest Starbucks—only exist through government actions not undertaken with electro-sensitives in mind. In fact, Sweden’s regulation recognizing EHS as a disability is one of the few laws on the books anywhere the world crafted with electro-sensitives in mind.

Spending time in Green Bank increases Chalmers’s tolerance when she’s back in Canada. Things don’t quite bother her as much. “I was used to traveling extensively—kayaking, biking, hiking… Going to Green Bank made it possible to be outside without being sick, the first time in three and a half years,” she continued. “This was a very emotional experience for me. I felt like I had some part of my life back, that I could enjoy something without suffering.”

An uphill political battle

About a decade ago, Liz Barris started getting a buzzing sensation in her head while talking on a cellphone. A New York native, Barris had moved to the West Coast years earlier to become an actress. She did commercials, live theater, and some low-budget movies. She wrote scripts and adapted a book into a screenplay. Meanwhile, that buzzing soon grew into a thumping and painful itching inside her ear.

“Let me tell you, the difference between that [life] and what’s going on with me now that I’m electro-sensitive,” she said. “The life that I had is absolutely over.”

Virtually all of Barris’s prior existence has been cut off from her. She used to spend her days writing in coffee shops and hanging out with friends. Now, she wears shielding over her head when she drives, for fear she’ll fall asleep. If she goes into a Starbucks for a cup of coffee and stays there for more than a few minutes, her entire day is shot. She slept in her car for eight months because being in her house caused her too much pain.

A grassroots political organizer who found some success coordinating signature drives for California’s statewide ballot initiatives, Barris decided to try and take action. In 2008, she went to Washington, D.C., with some legislation she drafted herself. If, as she believed, cellphones were doing so much damage to her life, they had to be having negative health effects for a lot of other people too. “I went to Washington totally by myself,” she said. “I didn’t know what I was doing. I booked about 15 appointments prior to going. While I was there I got a lot more appointments.”

“The life that I had is absolutely over.”

Barris’s bill was ambitious. It prohibited cellphone towers near schools, had restrictions on Wi-Fi, and required radiation emissions warning labels on the packaging of cellphones sold in stores. In her meetings with lawmakers and regulators, they all homed in on the warning label part. The warning labels would be difficult get passed, but they were small and could be feasibly enacted if she did everything right and got very lucky. Even so, she didn’t get any takers. Barris went home, wrote a guide for lawmakers about putting warning labels on cellphones, and posted it online.

About a year later, she got a call. A state-level lawmaker in Maine, Rep. Andrea Boland, had been inspired by Barris’s warning-label bill and wanted to pass something in her home state. Over the next five years, Barris worked with Boland to get the bill passed.

Boland brought the bill up for a vote again and again, yet each time it was rebuffed. In 2014, the Maine House of Representatives on second reading gave its initial stamp of approval to the Children’s Wireless Protection Act by a 83-56 vote. Change was finally happening. Cellphones sold in the state were going to come with a label warning people about the dangers of radiation and how that radiation may cause brain cancer. Barris was ecstatic. The World Health Organization does list cellphone radiation as “possibly carcinogenic,” but that category is immensely broad and also includes items like coffee and pickled vegetables. The label is far more useful to scientists than to the general public, but it was important to Barris that people know even the theoretical risks of what they’re using.

The bill, however, was killed in a legislative maneuver a few days later. Around the same time, a class-action lawsuit she had filed in Los Angeles against the wireless industry was scrapped. Barris had found she couldn’t win in taking on the wireless industry. It has one of the most powerful lobbying arms in America, and she could barely drive a car on her own.

“I got very depressed when I got back and our lawsuits were thrown out,” she said. “I wanted to kill myself. I just thought there was going to be no hope. I completely dropped the ball on everything. I couldn’t even do anything. I was just totally depressed.”

Thankfully, Barris was able to shake off her funk by refocusing her efforts on a documentary about the collusion between politicians and the wireless industry. She’d been working on it for the better part of a decade. As some of her other efforts fell through, it seemed like a good time to focus on what brought her to Southern California in the first place—making art.

Barris hasn’t settled on a title yet, but she hopes to have the film done by the end of the year. At the very least, she can tell her story. For now, for people like Mark Donohue, Melissa Chalmers, and countless other electro-sensitives dismissed by the medical community, maybe that’s enough.

Illustration by J. Longo

– See more at: http://kernelmag.dailydot.com/issue-sections/headline-story/13782/ehs-electromagnetic-hypersensitivity-real/#sthash.3avCJXjN.dpuf

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