ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
North Terrace House,
19 North Terrace,
Hackney, SA, 5069
1300 128 339
Closed over Christmas
(reopened 1 February 2017)
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Rare disorder drives woman to document industrial Canaries
Sunday 8 July 2012
Rare Disorder Drives Woman to Document Industrial Canaries
Back in 2003, photographer Thilde Jensen started getting sick. She had problems with her sinuses, flu-like symptoms, a weird tingling in parts of her body and at times felt drunk and foggy.
“I felt like my blood was running backwards,” she said.
The weirdest part was what set if off. First she noticed that the symptoms would appear whenever she was around a lot of car exhaust. Then she experienced similar symptoms whenever she was around books. Then it was cigarette smoke and perfume.
“It just kept getting worse and worse,” says Jensen, 40, who at the time was living in New York City. “It actually became kind of surreal. It was like being in a Hitchcock movie, like everything was out to get me.”
Finally, Jensen says, it got the point where there were so many triggers that she became totally disoriented and completely non-functional. By that point certain foods were also making her sick, as were electronics that emitted radiation, like phones and computers.
Faced with constant irritation, Jensen made the difficult decision to permanently move to upstate New York and live outside in a tent, away from almost all the amenities of modern life. It was the only thing, she realized, that would make her feel normal again.
She was married at the time, but about a year into her stay near Syracuse the marriage ended – in part because she couldn’t move back to NYC and her husband couldn’t move out to the country. Jensen says she’s doesn’t hold the breakup against her former husband.
“Most people would probably do what he did because it was such an extreme life change, I wasn’t the same person anymore,” she says. “I used to be this fun-loving person and suddenly I couldn’t do anything, and in certain ways I really needed to do it by myself.”
Having left everything behind, Jensen needed something to help her cope with her new life in the woods. Before her illness she had been a photographer with a budding career and making photos of her experiences seemed like a natural way to help her navigate the changes.
“I needed something to keep my sanity within this experience,” she says.
Jensen didn’t know it when she first got sick, but she was suffering from what many people call Multiple Chemical Sensitivity (MCS), or more broadly Environmental Illness (EI). Neither MCS nor EI exist in the International Classification of Diseases or ICD, and neither has an official diagnosis, but they are now commonly used to refer to people who, like Jensen, have a heightened sensitivity to synthetic chemicals and/or other things such as food and electromagnetic waves.
In Syracuse, Jensen began making self-portraits. She soon met other people who were also suffering from EI, including her neighbor Anna. Because it can be brutally cold in upstate New York, Jensen spent her winters in Arizona, just outside of Tucson, where she met and started documenting an entire community of people who were living in the desert away from the same kinds of triggers that had made her sick. The photo project is titled Canaries because Jensen believes her and her fellow EI sufferers are an early warning sign for our industrial society as a whole.
Photographing first on 35mm film but eventually moving to medium format, her photos became a mix of documentary and portraiture work. In some images she shows people as they navigate the “normal” world shrouded in masks and respirators. In others she captures the barren, mostly outdoor lifestyle that she had become accustomed to.
There is a stark beauty to many of the images, but also a sense of pain and loneliness. Jensen says she wasn’t cognizant of it at the time, but her photos began to develop a specific aesthetic that depends a lot on a certain quality of light.
“Going through this experience I became much more connected to nature and natural light,” she says. “I hear from a lot of people that the subject matter is stark and scary and my way of framing and lighting give it a form of beauty. Looking back, that became important for the outsider to make it more digestible.”
Because the designation of these illnesses aren’t official, they carry a certain a stigma with them and often times people who claim to have MCS or EI aren’t taken seriously.
“We just don’t have any evidence other than patient reports that the symptoms can be attributed to chemicals,” says Nancy Fiedler, a professor in the Department of Environmental and Occupational Medicine at the Robert Wood Johnson Medical School. “That said, this is a very difficult issue and I do think these patients are suffering. I don’t think we know enough about it.”
Jensen says she is aware of the stigma but says it doesn’t matter because for her, it was intensely and immediately clear that something was really wrong.
“Here’s how I think about it,” she says. “Leaving everything behind doesn’t seem like a choice you would make unless you really have to.”
For six years Jensen lived away from everything that made her sick and photographed her world as a way to understand it. Then, about a year and a half ago, Jensen started to feel better. The improvement, she says, is due in large part to a “neuro-retraining” workshop taught by Annie Hopper.
“When you get injured like [you do with MCS] it’s partly a brain injury and your brain often gets stuck in that injury,” she says. “Through neuro-retraining you have to help your brain understand that these small amounts of chemicals are not life threatening.”
Over the course of the four-day workshop, Jensen learned the neuro-retraining techniques that she then practiced and implemented for an hour each day for six months.
Dr. Fielder says that some medical studies have shown a fairly high rate of psychiatric disorders among people who claim to have chemical sensitivity, but that they are far from conclusive.
“There is a school of though that thinks [EI and MCS] might be similar to other anxiety disorders,” she says.
Jensen and other sufferers argue adamantly against that association, insisting that neuro-retraining isn’t about psychology but instead about neurology and the physiology of the brain.
Dr. William Rea, a doctor who runs a well-known clinic in Dallas that specializes in EI and MCS, says that just like a nerve in other parts of your body that might get injured, physical aspects of the brain are often affected by EI and MCS and neuro-retraining is like physical therapy for those injuries.
“Most informed people don’t buy into the idea that it is psychological anymore,” Rea says.
Jensen and Dr. Rea take it one step further and says that not only do to they object to linking EI and MCS to psychological disorders, but also think that this analysis might serve as a scapegoat for the industrial manufactures who want to avoid responsibility.
“People want to hang it on psychological disorders because they don’t want to expose the chemical industry,” he says.
Today, even with the help from neuro-retraining, Jensen says she’s still careful about her lifestyle choices. Nowadays she lives in an energy-efficient, straw-bale house instead of a tent. She’s able to use a computer and talk on the phone — things that she had to stay away from when she was at her worst. That said, she still drives an old truck that doesn’t have all the electronic gadgetry of a modern sedan and knows she can probably never live in NYC again.
In terms of her photography, she’s still shooting and hopes the have a book out early next year.
“I’ve been in exile for so many years and it’s thrilling to be back in the world,” she says. “There is such a sense of freedom to life again and a sense of adventure. I’m really looking forward to seeing where things will take me from here.”
The above, with comments and more of Thilde's photos, originally appeared here.
See also our earlier news item featuring Thilde Jensen's work:
blog comments powered by Disqus