These four (4) posts -- The Lambs and
the Lions Series -- were posted
to a several internet newsgroups in early September 1999.
2/4 THE LAMBS AND THE LIONS:
The SBU "Questions of the Heart" PETITION and BOYCOTT
PART 2: Cindy Duehring: Held Captive in Her Own Home
Held Captive in Her Own Home But Locked to a Mission
DEENA WINTER, For the Bismark Tribune
Sunday, November 9, 1997
Cindy Duehring hasn't been outside for eight years.
She hasn't been in a vehicle for nine years.
She hasn't watched a television for seven years.
She hasn't used the telephone since this spring.
Slowly, Cindy Duehring has had to abandon such devices, because they could kill her.
She is confined to her house along Lake Sakakawea 23 miles from Williston, unable to leave because her body has steadily deteriorated since pesticides nearly killed her 12 years ago. Her immune, respiratory and central nervous systems were irrevocably chemically damaged, and she is now one of tens of thousands of people in the United States who have disabling multiple chemical sensitivities, or MCS.
But Cindy's situation is far more severe than most. Even seemingly harmless things like air, drinking water, noise, and sunlight make Cindy sick. She is a prisoner inside her own home, but rather than nurse her many wounds, she devotes herself to her work, and has become widely respected as an expert on chemical injury issues -- so respected that she was recently one of five people in the world selected to receive the Right Livelihood Award. The award came with $60,000 to use toward her work -- work that is done despite incredible obstacles and painstaking procedures that must be performed every day, just to keep her alive.
Life as she knew it
Hardly a sickly child, Cindy's parents say she was an active, athletic, intelligent girl.
'I don't think she even had a problem of any kind, health-wise,' said her father, Don Froechle, a 71-year-old retired commercial contractor who lives in Bismarck, where Cindy was born and raised.
He said she had a sunny disposition, even when she was hurting.
'As a child, you wanted to hug her all the time,' he said.
As a teen-ager, Cindy was 'an all around person with a whirlwind of activities,' Don said.
He proudly recalls how she quickly learned to ski and operate a pontoon boat. The 5-foot-11 girl enjoyed tennis, church activities, singing in choirs, skiing, swimming and people.
'She needed to be around intellectuals because her mind was always going 60 per (miles an hour),' Don said.
Cindy wanted to be a doctor -- and there was no reason to believe she wouldn't: In 1980, she was a valedictorian and the top student in Bismarck High School's graduating class of 423. Four years later, she had one year left of pre-med studies at Pacific Lutheran University in Tacoma, Wash., when fleas invaded her apartment.
The bank she was working at in downtown Seattle also had a chronic flea problem, and over the course of a year, she used 20 flea bombs before calling an exterminator. He sprayed her apartment twice in two months, but the fleas persisted. When the exterminator returned, he decided Cindy was bringing the fleas home from work with her, so he sprayed and fogged all of her clothes.
'I'll make sure you never have another flea in here as long as you live,' he assured her.
He killed the fleas alright. And he almost killed Cindy.
Cindy was suffering flu-like symptoms and neurological problems (numbness, tingling, tics), but didn't connect her problems with the pesticides. Eventually, an occupational physician specializing in chemical poisonings figured out what was making her sick: She absorbed the pesticides through her skin, and they accumulated in her tissues, damaging her immune, respiratory and nervous systems.
The pesticide residue on her belongings was triggering the convulsions and neurological problems, so she got rid of everything she owned and moved out of the apartment.
She later learned the exterminator illegally combined two pesticides, one of which wasn't even registered for indoor use. (She never sought legal recourse.)
Toxicologists and researchers told Cindy the amount of pesticides she absorbed -- the highest her doctor had ever seen -- should have killed her. Five years after the pesticide incident, Cindy's blood tests still showed extraordinarily high levels of extremely toxic industrial solvents and propellants commonly used in pesticide formulations and jet fuels. Several doctors who regularly treat occupationally exposed industrial workers told Cindy her levels were what they'd expect to see after an industrial accident. Those levels are down now, but the permanent, extensive organ system damage they caused led to further complications.
As a result, Cindy is extremely sensitive to even low levels of chemicals. MCS involves physiologic damage and has no cure. This, according to her doctor, is a list of the ailments she suffers as a result of chemical exposures:
Reactive airways disease.
Autoimmunity against her internal organs -- the body's immune system mistakenly identifies its own cells and tissues as foreign and creates destructive antibodies against them as it would against a foreign virus.
Peripheral nerve damage (damage to the nerves in her hands, feet, arms and legs) and central nervous system damage resulting in a seizure disorder.
Porphyrinopathy, a severe metabolic disorder in which heme production is impaired. Heme is essential to numerous metabolic and hormonal processes and is the primary component of hemoglobin, which is necessary to carry oxygen to the body's cells.
Many insecticides and herbicides, disinfectants, solvents and other chemicals such as chlorine and ammonia trigger attacks, during which Cindy suffers extreme pain, nausea and vomiting. If not managed, the attacks can quickly become life-threatening, causing seizures and kidney or respiratory failure. During the attacks, her stomach sometimes swells about 12 inches.
Exposure to chemicals causes Cindy to have tremors or seizures and bronchial restriction requiring oxygen support. Exposure to common products like perfume, detergents or cleaners can cause severe bronchial reactions or neurological seizures that leave her in unbearable pain. Herbicides, insecticides and fungicides are the biggest threat to her, so she gets much sicker in the summer.
Cindy has survived serious episodes of temporary kidney failure and has been repeatedly revived from anaphylactic shock, once even after her respiration had stopped after she tried an anti-seizure medication.
A change in plans
Cindy did not die the day she was drenched in pesticides, but her dreams did. The promising young student was forced to abandon her studies and return home to Bismarck to try to recuperate. While there, Cindy was introduced in 1986 to Jim Duehring, who was an intern at her aunt's church. Cindy still had high hopes and plans to return to college, but by the time she married Jim in June 1988, her body was ordering otherwise.
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.'
Despite the lengths she must go to just to get through a day, Cindy has maintained her trademark sense of humor, Jim and her parents say, even though it literally hurts when she laughs.
'Her personality, I don't think, has changed at all,' said her mother, Jan Froechle. 'She still has that sparkling wit. It's just amazing that she can keep her sense of humor. I marvel at that.'
It helps to have a supportive husband and family (she regularly corresponds with her sister in California) who have adapted to a lifestyle that is unusual, to say the least.
When Cindy and Jim first married, they were able to live in the same house, although they had separate bedrooms. Jim was a Lutheran minister for five years, and during that time Cindy became more and more sensitive to everything, including him. He had to stay away from her on Sundays, because of all the perfume he brought home from church.
Now, Jim can no longer even sleep in the house during the week because Cindy gets sick from the perfumes and detergents that cling to him after a day at Trinity Christian School, where he has taught in Williston for two years. So he rents a cabin-like building about a block down the hill from his house. During the week, Jim works and sleeps in the cabin, which is also the place Cindy receives faxes and mail. He is only able to visit Cindy on weekends, and they have to communicate by writing notes to each other because the sound of his voice causes seizures. But Jim said he's comfortable with the balance he has struck between work and his wife.
'I'm pretty happy teaching, and given her health, we just can't expect more right now. At least I get to see her and we can interact. That might be hard for people to understand -- (but) you have to walk in my shoes and realize what we've gone through over the past 10 years.'
What they've gone through is lots of laughs, but also lots of losses.
'It's something you grow into,' Jim said. 'It didn't happen overnight. If all these things happened overnight, it'd be even more overwhelming.'
He said the toughest adjustment is feeling like he lives in two different worlds.
'Another hard thing is feeling like things are out of your control. I mean, your wife is sick and you can't really help her. Another really hard thing is if I come into the house and unknowingly cause a seizure. And then I have to leave because I'm making her sick.'
And what do their friends and neighbors think? 'Some people understand it and some people, it's hard to understand,' he said. 'A lot of times people feel uncomfortable even talking about it... I think for some people it's a big mystery.'
Up until recently, Cindy could have visitors only if they followed an extensive list of instructions. But now she's so sick that it would take a total lifestyle change for several months for most people to be 'clean' enough to enter her house, so her only visitors are Jim and her parents, who regularly use special hair and personal care products. It makes for a lonely life.
'Much in my life is extremely hard and painful,' Cindy said. 'But that doesn't mean there aren't good things, too. I make every effort to look for, focus on, and enjoy those good things no matter how small. Making the continual choice to be thankful for what I do have, rather than focusing on my losses, is extremely important for me to keep from being depressed.'
Cindy tries not to allow herself time to dwell on her illness by busying herself with her work, even though it takes a heavy toll on her health.
In 1986, she founded the nonprofit Environmental Access Research Network, which is now the research arm of the Chemical Injury Information Network. EARN, which is largely run by Cindy, the director, is considered the world's leading support advocacy organization for the chemically injured, serving members in 34 different countries.
Cindy has built an extensive private library on chemical injuries, and she provides copies of studies and government reports to laymen and professionals. Every month, her organization is contacted by at least 150 new people looking for information on chemical sensitivities and chemical injury issues; some of them referred there by government agencies.
Every other month, Duehring publishes Medical & Legal Briefs: A Referenced Compendium of Chemical Injury, a newsletter in which she summarizes some of the most pertinent studies, government reports, legal cases and peer-reviewed studies from conservative medical literature relating to chemical sensitivities.
She also writes a monthly profile on studies and government reports for a monthly newsletter published by the Chemical Injury Information Network.
In 1993, Cindy and the CIIN director were commissioned to write a white paper -- an authoritative, detailed report prepared at the request of a government body -- called 'The Human Consequences of the Chemical Problem.' It was presented to Vice President Al Gore and First Lady Hillary Rodham Clinton.
So how does she do it all? Especially when she can't use a telephone, fax machine, typewriter or computer?
In longhand, Cindy writes all her stories, letters and directions for several people she has hired to do her typing, copying, faxing, computer work and leg work. She also relies on volunteers, including her family (her mother frequently gets articles from the medical library in Bismarck). Her husband stops by the house once or twice a day with her mail, faxes and phone messages that pile up in his cabin/office.
But it's not as simple as that. Her toxicology books, medical and legal journals, government reports and medical studies must be stored in large, walk-in closets with carbon air filters. Aluminum-lined banker's boxes and tin canisters serve as file cabinets, reducing her exposure to paper, ink and copy fumes.
She tracks medical literature and relies on volunteers and contract workers to track legal cases and send her the tables of contents from medical journals in medical libraries around the country. Every month, she searches the electronic library of the U.S. National Library of Medicine through a contract worker.
And for all this, she gets paid exactly nothing. CIIN's bylaws forbid her from receiving a salary, as an officer of a nonprofit corporation.
Her lack of distractions (like a ringing phone, wailing radio or tempting television show) and inability to leave the house has been beneficial in at least one way: 'Many clinicians have told me they envy the time I have to continue studying and digging in the medical literature,' she said, 'and researchers have told me they especially appreciate my work because I have the time and freedom to pursue and track a large number of issues rather than being locked into one discipline.'
Her 'breaks' usually involve reading the many news magazines she subscribes to (and devours from front to back); rereading cards and letters; reading novels 'that are fairly certain to have happy endings' or reading the Bible and praying.
What the doctor says
Of the thousands of patients Gunnar Heuser treats at his private practice north of Los Angeles, most of them either think they're crazy, have been told they're crazy, or actually are a little bit crazy.
But, he says, almost all of them are genuinely sick.
'I've come across very few people who are trying to put me on,' said Heuser, a practicing physician and fellow of the American College of Physicians and assistant clinical professor of medicine at the UCLA School of Medicine.
They come to him to find out whether they're chemically sensitive or chemically injured. His 'work-up' includes immune function tests, blood tests, skin biopsies and brain scans -- tests he says most physicians neglect to do.
'They aren't easily persuaded,' that the people are ill, Heuser said.
He said he sees highly successful people -- lawyers and doctors -- become chemically sensitive, fall apart and come to him for help.
'Then you believe,' he said.
Of all the patients he's seen, he estimated about 100 are as sick as Cindy, living in total isolation.
'Some people take to the mountains,' he said, or go to a 'safe' community. 'People become hermits.'
But not Cindy.
'Most people give up and become disabled... there are very few I can think of who are that sick and are that productive.'
Heuser said often chemically sensitive patients 'come across as crazy people' because the chemicals have affected their brains and the medical profession sometimes reinforces that assertion. But he said Cindy has a 'very superior mind.'
'I have known so many people with chemical sensitivities give up and stop doing things and ... they are like going into a place where there are mirrors all around them. They become totally self-centered. They don't reach out and they don't do anything. Of all the people I know -- and by now I know thousands -- she has not talked about her chemical sensitivity. She talks about science and scientific methods... She is a resource for thousands of people. She is totally unique as far as I'm concerned. She has a warm, wonderful laughter, melodious voice; she makes sense every time she talks to you. She's not crazy. She's rational, she's critical. She has enormous qualities as a human being.'
In fact, Cindy was reluctant to talk about her illness, because she didn't want to tarnish the joy of winning the award, which, she noted, she won for her accomplishments, not because she is sick. Although she has been interviewed as an expert on chemical injuries many times, this is the first time she has agreed to a 'personal interview' since 1990.
How extensive is her knowledge of chemical injuries? 'I would trust her to write a medical article in a medical journal,' he said. 'I think she could probably outshine some of my colleagues. ... She gives you a better answer than anybody else I've ever dealt with.'
Heuser often turns to Cindy when he's looking for research or information on specific topics. He said her personal library on chemical injury and sensitivities is the most extensive he knows of.
That's why he nominated Cindy for the Right Livelihood Award, which was introduced in 1980 to honor and support people working on holistic solutions to world problems. Every year the awards are presented the day before the Nobel Prize presentations.
Cindy said she was 'stunned, excited and extremely grateful' when she was selected to receive the award and hopes it will help call attention to chemical injuries.
She must go on
Up until early spring of this year, Cindy relied heavily on the telephone to work. Then she began having audio-induced seizures and had to stop, which was the hardest adjustment she's had to make. For this interview, Cindy answered a faxed list of questions by writing out her answers. Jim faxed the answers.
'I am a very verbal, people person and I love to laugh and find the humor in things,' she said. 'Talking and working on the phone was a tremendous outlet, escape and coping mechanism for me. This latest step downward in my health ripped an unbelievable hole in my life.'
She had devoted three days per week to telephone work, and during those business hours she said her phone rang nonstop.
'I was utterly devastated,' she said. 'It's the closest I've ever come to saying, 'This is impossible, I give up.' Yet the letters were still pouring in, the phone messages were piling up, and the tremendous need was still there, and I knew if I quit I would go into unbearable depression.'
So she revised her brochures and made new order forms that would allow her to continue providing the same services entirely through mail order.
Cindy's work not only helps others who are sick, (some people with severe MCS become homeless or live in tents or shacks) but also helps her.
'I do my level best to concentrate on other things to distract myself from the pain and to keep going,' she said. 'The work I do is one of the essential ways that I cope.'
She also relies on her religious faith. 'I am continually praying to the Lord for strength, as I am well aware of my weaknesses and my health situation far surpassed my ability to cope long ago,' she said.
Although she knows her sickness has enabled her to help many others who are similarly stricken, she says, 'I don't believe I'll be able to see the good in the sheer extremeness of my health condition and the senseless pain I must cope with until I die and gain the perspective of eternity. I am thankful for the good that has come of this in my ability to help others, but I am well aware that I could have done even more ... if my poisoning had only been less severe.'
Jim said his religious faith has been strengthened, too.
'I think you become more and more reliant upon Him because you can't rely on your own strength, you really can't. Because it really is overwhelming.'
Cindy said she often thinks of Martin Luther's wife's last words on her death bed: 'I shall cling to Christ like a burr.'
'When I am tempted to feel sorry for myself, I think of those who are suffering unspeakable deprivations and tortures in prisons in other countries for their faith or political ideals, and I feel ashamed,' she said. 'If my home is my prison, and my body is the master jailer, I still have tremendous freedom and comparable luxuries only dreamed of by them.'
And so she continues to silently toil away, every day. Dec. 8 will be no different, as she goes about her daily routine -- except for one: Jim won't be there to deliver her mail: He'll be in the Swedish Parliament in Stockholm, accepting Cindy's award for her.
This material is available online from the
Bismark Tribune Website at:
Original Source: http://www.ndonline.com/TribWebPage/nov1997/11119754757.html
THE LAMBS AND THE LIONS SERIES
~~Part 1~~ * ~~Part 2~~ * ~~Part 3~~ * ~~Part 4~~
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