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 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
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