Stanford woman living with multiple chemical sensitivity
By EMILY TOADVINE
Staff Writer
I have washed my clothes in baking soda and rinsed them with white vinegar as per Mary Burdette's requests for our interview. We're meeting at Big Valley Coffee, one of the few places the 31-year-old Stanford woman can go without wearing a mask to filter out harmful fumes.
I can smell my deodorant, which also has baking soda in it, but I hope she can't. After I greet Mary and her husband, Scott, she almost immediately puts her mask on. Is it me, I wonder? But never fear: This rosy-cheeked, blue-eyed woman tells me she thinks that one of the customers must have been wearing cologne.
Soon, she can take the mask back off.
Since her multiple chemical sensitivity was diagnosed, this is her life. Oh, and to top it off, she also has fibromyalgia.
She first noticed that she had a problem about age 14, whenever she was around cigarette smoke. Some of her illness may be genetic, because her mother also suffered.
"My mother especially was affected. She would lose her voice. I would feel like I had a wire brush stuck down my throat."
Mary began to realize what was going on in spring 2001 when she had an exposure to cooking gas while visiting friends.
"I had never been so sick in my life," she says of the event that damaged her kidneys.
In December 2001, she had another attack, which affected her liver. She was helping with remodeling and was exposed to chemical vapors all day.
"The first time, it just made me sick to my stomach. That time, I was sick all night long. It affected my central nervous system and cardiovascular mostly, but it has affected all parts of my body."
Mary says her health started to go downhill. She had seen a book about living with chemical sensitivity at the Harvey Helm Library in Stanford, but didn't immediately read it. After the second exposure, she started reading "Multiple Chemical Sensitivity: A Survival Guide."
"I thought, 'That's what's going on,'" she says of the information in the book that's printed in soy ink, making it OK for her to touch.
Her sensitivity to chemicals heightened to the point that she couldn't even shop in a grocery.
"The cleaners that had been used, I just couldn't handle it."
In 2003, her illness was diagnosed as lifelong exposure to multiple chemicals resulting in chemical sensitivity.
Mary isn't sure what triggered her illness. Maybe it was the first two years of her life when she slept on the chest of her dad, a steel mill worker for 30 years. Maybe it was the time she spent cleaning mobile homes.
"One doctor told me, 'You might as well have opened your arm and injected the chemicals in you.'"
What she does know is that to cope, she needs to avoid chemicals as much as possible.
"If you're at a point where you can function in society, stop using chemicals because you'll get to where you can't."
Clothes next to her skin must be 100 percent cotton
The clothes she puts next to her skin must be 100 percent cotton, preferably naturally grown. She also wears natural fibers, such as hemp or silk. The couple uses organic cotton bedding. Their mattress came from Lifekind and it's organic.
"They specially wrap it so it doesn't get contaminated in the shipping and made in an organically-safe factory."
To wash clothes, she uses 1/3 to 1/2 cup of baking soda and about the same amount of white vinegar as a fabric softener.
To wash dishes, she and Scott buy Seventh Generation Free and Clear dish soap.
"He gets it as Wild Oats because I can't go in there," she says of the Lexington grocery devoted to organic items.
They had to search for a dish soap that lived up to the free and clear label.
"Other brands are supposed to be free and clear, but they leave a soapy residue."
Nature's Gate makes a winterfresh deodorant she can use. She uses a trial and error approach to find products for her hair and skin.
"It's hard to find soaps and shampoos that won't itch me or that the smell won't bother me."
Currently, she uses products by Avalon Organics, which is sold by Good Foods Co-op, one of the other few businesses that Mary can enter without her mask.
"It has a bit of an odor that bothers me."
A third place she can go without a mask is Happy Meadows Nutrition Center in Berea.
"I have to wear a mask to get in there because there's a Laundromat next door, but I can go in there."
Buying all organic foods
In addition to watching the products she uses, she must pay strict attention to her diet. She buys all organic foods.
"If I eat foods with chemicals, I have a reaction," she says, noting that her body might react with tremors or quakes. Before this interview, she had a salad of kale, carrots, spinach, olive oil, flax seed and sea salt for breakfast. For lunch, she had packed tofu, zucchini and mung bean noodles.
At one time, olives, potatoes and grapefruit were staples in her diet.
"Now I can't have potatoes because of the fibromyalgia. I can't have olives because of the vinegar. I can't have the grapefruit because I'm sensitive to that and because it's citrus."
They purify their water and use only certain cooking containers.
"I can't use plastic for cooking. It has to be stainless steel or glass. I can use cast iron only with olive oil."
Eating vegetables and fruits isn't always satisfying and Burdette admits that she has a weakness for some fast food.
"If I do cheat and get french fries, I get sick."
She must keep changing her diet
Her second attack left her unable to digest most meats. She could eat fish, but now is able to have organic buffalo and chicken. Eating organic foods is not cheap. The couple spends $500 a month on food for two.
She has learned that if she eats anything for a long period, her body begins to reject it.
"It's constantly changing. Even my diet, I have to rotate it."
Any reading material she has usually is not current. She has to wait for the material to "off gas."
"We set them in the corner and let them air," she says, but notes that a new product from Nutritional Ecological Environmental Delivery System (NEEDS) is changing that. She buys reading bags of a corn-based plastic to cover the reading material.
Most of the literature she wants to read is from her church, Jehovah's Witnesses. She says that despite her suffering, she has faith that one day her pain will end.
"What I look forward to is Jehovah's new kingdom. My strength in Jehovah and my husband is what has got me through this."
A witness to his wife's violent reactions
Scott, who has shown his concern during the interview, almost unconsciously, rubbing his fingers down his wife's long ponytail, has witnessed his wife's violent reactions many times.
"It's almost like her joints lock up," he says.
Mary used to go with her husband to Wal-Mart to buy toilet paper, but no more.
"It got to everywhere I went into Wal-Mart, he had to bring me out in a wheelchair."
Mary says this problem may stem from the fibromyalgia, which she knew she had because she had many of the symptoms, including a sensitivity to touch.
"If I got touched, it would hurt really bad."
A trip to town has its consequences, despite the fact that she travels with an air purifier.
"Basically every time I go out I have some type of exposure. It's not as bad with having some type of air purifier in the vehicle."
Despite the risks, it's nice to get out of the house. She doesn't drive because of the affect the chemicals have on her reaction time and thinking ability.
Adept at holding her breath
While in town, inhaling more pollutants than she is accustomed to, she does her best to cope.
"I have become really adept at holding my breath. If I can't get my mask on, I just hold my breath."
Mostly, she stays at her Stanford home, which is 500 feet off the main highway, but still close enough for the gas fumes to bother her.
"The wind blows it over to us," she says.
While at home, she usually has to rest or read until late morning. She rests in bed or at the table before tackling her chores.
"I do housework as I'm able and read the Bible or cross stitch."
One of her cross stitch works that contained symbols of her family heritage earned a grand champion ribbon at the Lincoln County fair.
"That was a real pick-me-up," she says.
Difficult to get medical treatment
Getting medical treatment for her illness is difficult.
"A roadblock to even getting chiropractic care and eye exams is finding a health-care provider's office that is safe enough for me to go in. I have called and made appointments and had Scott go in and check it for me and I had to cancel and go somewhere else. If they're in a brand new building or if someone has colognes on them, I can't go in."
Another setback is that most healthcare providers who treat chemical sensitivity don't accept insurance.
Because of her body's reaction to chemicals, the couple has traveled to many herbal doctors. Mary has tried many natural remedies. Some would help for awhile before making her feel ill.
Scott says, "Her body is just cantankerous. Right now, it says, 'I've had enough.'"Copyright The Advocate-Messenger 2005