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
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.
Light Work photo exhibition
Tuesday 3 May 2011
Light Work photo exhibition examines people living with environmental illness
Most of Randy’s face is hidden in the photograph. A mask covers his nose and mouth, while glasses shield his eyes. With a tight grip on the steering wheel, he is surrounded by bags filled with his belongings in a car that has been his home for years.
After the Danish photographer was diagnosed with MCS in 2003, she made it her mission to shed light on the little known illness.
“Before getting MCS, I had no idea people were living out of cars and tents. It was important to document that,” she says.
Jensen received a Light Work grant in 2006 to pursue her photography project. Light Work is an artist-run nonprofit photography and digital media center, which also presents exhibitions on the Syracuse University campus.
“Canaries” features more than 20 color images of people with MCS she met while living in the Southwest and New York. The title of the exhibition refers to the expression “canary in a coal mine,” meaning an early warning sign of a crisis. Jensen says people with MCS are often called “canaries.”
MCS may occur after a person is exposed to any of a wide range of chemicals, says Jensen, who lives in Truxton. It is often referred to as “sick building syndrome” or “environmental illness.” There is disagreement in the medical community about its classification as a disease.
Symptoms may include headache, dizziness, confusion, difficulty concentrating, earache, congestion, memory problems and skin rash. Tobacco smoke, perfume, exhaust fumes, flame retardants on clothing and furniture, and other man-made materials are common triggers.
Jensen, 39, recalls having a few symptoms while living in New York City before Sept. 11, 2001. But after the terrorist attacks, her symptoms worsened. She experienced prickly skin sensations as well as chronic sinus and ear infections.
“The doctor said, ‘You might just have to live with it,’” Jensen says. “I thought I could just take a pill, but that was not the case.”
Jensen experienced “brain fog,” which she described as the inability to think clearly. She began doing research on the Internet and found this was a common symptom for MCS sufferers. In time, her symptoms increased in number and severity.
“I slowly went from being functional with some aches and pains to not being able to breathe,” she says.
After her diagnosis in 2003, she decided to move from New York City to the Catskill Mountains to escape sensitivity triggers. She refurbished an Airstream trailer with non-synthetic materials that wouldn’t cause adverse reactions. But winters in the Catskills living in a trailer became unbearable, so she moved to Arizona during the colder months. Jensen says Arizona and New Mexico are popular destinations for those with MCS.
Jensen used a respirator for about seven years, including the time she began her photography project. She tried detoxification treatments and vitamin supplements to ease her symptoms but found little relief. After doing more Internet research, she found an experimental neural retraining program to help improve her breathing.
“I read about a woman in Canada with sensitivity ... she figured out that it was the brain that was impaired,” Jensen says. “The part of the brain that is damaged is the limbic system, which controls sensory systems, emotions, and fight or flight.”
Jensen read her brain needed to be retrained, similar to that of a stroke patient. She meditates while doing memory and visualization exercises and now functions without the constant use of a respirator.
This spring Jensen is continuing her mission in Dallas and the Southwest, where she has shot photos previously. “It is important as a photographer to utilize my talent to bring awareness,” she says.
What: “Canaries,” a photography exhibition by Thilde Jensen.
When: Through May 27. 10 a.m. to 6 p.m. Sunday through Friday or by appointment.
Where: Light Work Hallway Gallery, 316 Waverly Ave., Syracuse University campus.
The above originally appeared here.
blog comments powered by Disqus