Held Captive in Her Own Home
Two days after the wedding, she sought refuge in an Arkansas safe haven she'd seen advertised in a magazine for people with chemical sensitivities. While Jim and her father rushed to build her a special house near Williston, Cindy found out she was the victim of false advertising: the place was a dump, with raw sewage, mildew and chemicals that made her sicker, too sick to even get in a car because the fumes from the vinyl and upholstery triggered seizures and bronchial reactions.
So she spent the winter wrapped in foil and layers of cotton clothing in an unheated trailer, waiting alone 10 months for her house to be built. The foil forms a vapor barrier and does not allow volatile chemicals to pass through. The chemicals the foil protects her from are as common as the formaldehyde used in the manufacturing process of many synthetics like paper.
When the house was ready, her family drove her home in a steel foil-lined van, frequently stopping because the jostling caused a respiratory reaction in Cindy.
When they arrived, Cindy retreated to the safety of her "dream house" -- a house she calls her iron lung. Her home was specially built for a chemically sensitive person, with ceramic tile floors, hardwood cabinets with a special low toxicity sealer, metal or hardwood furniture, stainless steel kitchen counters and glass tables. The house has a "whole-house capacity" carbon and high-efficiency particulate air filter in every room, and an area separate from the airflow of the house for the washer, fridge and freezer.
Even in her ultra-pure house, Cindy has reactions, triggered by anything from roadwork being done nearby to the scent of a skunk drifting through the house. During particularly bad reactions, Cindy can take refuge in her large, heavily filtered, steel and glass-lined bedroom, the safest room in the house. It consists of metal furniture, a metal cot and her cotton clothing.
In order to feel better, Cindy eventually learned she had to stay away from things like shampoo, soap, makeup, deodorant, perfume and hairspray. The list has grown longer and longer over the years, to the point where even Cindy says her condition has become "utterly bizarre".
She cannot use a telephone, fax machine, typewriter, refrigerator, television or computer. Using such devices can cause life-threatening reactions because Cindy has severe respiratory reactions from the chemical fumes (from the motors, synthetic components and inks) and grand mal seizures from the noise. The only kitchen appliance she uses is a glass-top stove.
Cindy is sickened by even the simplest, seemingly harmless, pure things, like outside air, drinking water, noise, and sunlight. The normal particulates found in unfiltered air cause a bronchial shutdown in Cindy -- face filters and respirators aren't sufficient, and even if they were, she would react to the materials they're made of.
A splash of sunlight -- even indirect sunlight -- could send her into seizures. In 1989, Cindy realized she wouldn't be able to go outside anymore. The last time she tried, she said, "I couldn't even get out the door before I collapsed and Jim had to drag me back in and get me on oxygen," she said.
Her drinking water must be heavily filtered through a whole-house carbon filter and fine particulate filter, then distilled and boiled to remove the remaining traces of chlorine. Otherwise the water would cause her to have convulsions and vomit.
She can only eat food that is grown under the strictest of nonchemical organic food standards, and she takes a complex myriad of supplements and medications every day.
Even everyday sounds in a typical house cause Cindy to have seizures, so she lives and works in silence. When she's washing dishes, she uses glass marbles as earplugs (plastic or rubber ones cause severe rashes). Several of her doctors have diagnosed a focal brain lesion which causes progressive brain damage, resulting in a slow, but steady decrease of the threshold for seizures from various neurological stimuli such as sound and visual movement.
Every 30 to 60 minutes during the day and every two or three hours at night, Cindy gulps down water (up to three gallons per day) to counteract the effects of the high levels of ammonia in her system -- which her doctors say are the most likely cause of seizures she has in her sleep.
Synthetic and dyed clothing cause severe rashes, so Cindy wears undyed, unbleached organic cotton clothing. New clothes must be washed 100 times in baking soda before she can safely wear them.
Every day, Cindy wakes up in intense pain, feeling nauseated and exhausted, shaking with tremors and suffering blurred vision. She feels "beat up," and she often is. It's not unusual for her to wake up with new bruises from the seizures she has while sleeping. She bruises easily and heals slowly. After drinking lots of water and organic juice, the tremors and blurred vision usually stop, but they continue to come and go throughout the day.
Her armpits are ulcerated and her back is scarred from the toxins in her sweat. Large lumps of fluid fluctuate in her kidney area and lower back and can take months to drain. She has to concentrate on breathing in her upper lungs and it hurts to breathe.
Cindy can't even read a book or magazine without airing it out first or using a glass reading box to filter ink fumes.
In a 1989 interview, Cindy said: "I am at the mercy of whatever the world has to offer me... that's the scariest thing," she said.
But back then, she was in much better health than she is today. Despite all the precautions Cindy takes, her health has continued to decline every year, partly due to unavoidable exposure to pesticides in the ambient North Dakota air each summer.
Clearly, Cindy is dying.
"Quite frankly, I've come to the conclusion that I'll be alive just as long as God wishes to keep me alive," she said. "However, we will always continue to do everything within our power to try to prolong and improve my health and I am always hoping to improve."
She plans to try a new anti-seizure medication soon that is not porphyrinogenic and has helped reduce symptoms for many people with MCS. Although her doctor is trying to obtain it in a pure form without additives, that process could take years, and Cindy doesn't want to wait. If the medication works, and doesn't cause a reaction, it could make life much easier for Cindy.
And now, the good news
Those are the details of Cindy's unconventional life, but they don't say much about the woman who lives it. Ironically, and perhaps cruelly, she is an extrovert -- a "people person" who has a long Christmas card list that includes names of friends dating back to grade school.
"She's full of life and loves life," her husband, Jim, said. "She's a very bright person with a witty sense of humor. (She's) very curious and inquisitive; likes to learn new things. She's not satisfied with learning things on a surface level. She likes to understand things thoroughly."
He said she's the same person he fell in love with, although she's developed a deeper appreciation for everything about life.
"She really is a strong person," Jim said. "I really see it. I put myself in her shoes and I think boy, would I be able to do this? She's an amazing person."
Continue: Part 3