The Canary Report

This is why justice is rare in court cases involving Multiple Chemical Sensitivity

Posted on Aug 13, 2010 by Susie Collins in Blog, Law, MCS, Susie Collins

In the 2008 case of O’Brien v Citizens Insurance Company of America, the court managed to silence Ms. Delora O’Brien’s argument about her Multiple Chemical Sensitivity before she even started, by prohibiting her from providing expert testimony at trial in support of her claims.

Justice is all too rare in court cases involving Multiple Chemical Sensitivity.

In Oct. 2008, the Supreme Court in Suffolk County, NY., rendered a decision in a case where a woman sued her homeowner’s insurance company because of toxic remediation treatments to her home following a clothes dryer fire. The plaintiff claimed that the treatments, which included degreasers, furniture polish and window cleaners followed by an ozone treatment*, initiated her Multiple Chemical Sensitivity.

In O’Brien v Citizens Insurance Company of America, the court managed to silence Ms. Delora O’Brien’s argument before she even started, by prohibiting her from providing expert testimony at trial in support of her claims of Multiple Chemical Sensitivity. After listening to the Defendant’s argument discrediting MCS as an illness initiated by toxic chemical exposure, the court said, “There is nothing in the record that identifies a diagnostic test for MCS (IEI), nor are there any studies submitted which identify a mechanism or cause for MCS.” This conclusion was reached after the defendant, who refers to MCS as Idiopathic Environmental Intolerance or IEI, argued that there was no proof that MCS is a recognized illness due to the absence of “proof in the form of controlled studies, clinical data, medical literature, or peer review indicating the expert’s conclusions are generally accepted in the relevant scientific community.”

(By the way, always red flag any statement you see with Idiopathic Environmental Intolerance or IEI given as the name of MCS because it is designed to discredit MCS as a physiological illness.)

The court took a look at the Defendant’s argument and decided, “There is no evidence submitted to establish a causal relationship between any of the chemicals that are known to have been utilized during the remediation process at the O’Brien home and MCS (IEI). The Court concludes therefore that there is insufficient evidence to show general causation.” The final decision: Any opinions/conclusions on Multiple Chemical Sensitivity as an illness initiated by toxic chemicals must be omitted from the case.

Ms. O’Brien’s credibility was further compromised by the fact that the first doctor she visited after becoming ill with “headaches, fatigue and nausea,” diagnosed her as depressed and prescribed xanax and zoloft. Can you see where this is going?

Those of us with MCS know differently than the argument presented by the Defendant and the decision reached by the court. We know that current research, peer reviewed and published, clearly shows a causal relationship between exposure to a minimum of seven classes of toxic chemicals and the initiation of Multiple Chemical Sensitivity.

MCS researcher Martin Pall is at the forefront of this current research. His peer reviewed research is now published as chapter 92, “Multiple Chemical Sensitivity: Toxicological Questions and Mechanisms,” in the international reference manual General and Applied Toxicology, 3rd Edition (2009, John Wiley and Sons). “While the majority of this paper comes from my earlier publications on MCS,” says Pall, “it also contains several very important sections that are largely novel.” Here are three of his main points germane to our discussion about this court case:

1. There are seven classes of chemicals implicated in MCS and all seven of these can indirectly produce a common response in the body, increased NMDA activity. Furthermore, animal studies have shown that members of all seven of these classes of chemicals can have their toxic responses lowered by using an NMDA antagonist. This clearly demonstrates not only that they produce such increased NMDA activity but those increases play an important role in producing the toxic responses to these chemicals. Given that we previously had six types of evidence implicating excessive NMDA activity in MCS, we now have compelling evidence that this common response plays a key role in MCS.

2. The role of these chemicals acting as toxicants in MCS has been confirmed by four genetic studies, showing that genes that determine the rate of metabolism of these chemicals, influence susceptibility to MCS (only three were available when the review was written). These studies implicate six genes as determining such susceptibility, all of which have roles in the metabolism of chemicals otherwise implicated in initiating cases of MCS. It follows that the roles of chemicals in initiating cases of MCS is undeniable.

3. There have been a series of published studies reporting objectively measurable responses to low level chemical exposure among MCS cases that are distinct from any responses in normals. At least three of these should be practical specific biomarker tests that can be applied in clinical settings. All of these studies are consistent with the NO/ONOO- cycle mechanism as it is thought to play out in MCS and all provide, therefore, evidence supporting this mechanism. We have been in great need for such specific biomarker tests for MCS and these and other approaches to developing such tests must be further studied and may provide recognized specific biomarker tests in the near future, in my judgment.

I have heard argued on other MCS forums that the problem is the name of our illness, Multiple Chemical Sensitivity. Use that name in the courts, people argue, and you are immediately discredited. I disagree. I think no matter the name, we would still run up against this problem in the courts. Although I think a Plaintiff may have more success if he or she has other more easily measurable co-morbid illnesses along with the MCS; a physician and attorney may be able to build stronger medical evidence through those measurable illnesses than the MCS. But what about the people who only suffer the currently difficult to measure symptoms like “brain fog”? I say keep the name as it is found in most of the scientific literature, Multiple Chemical Sensitivity, and back up the arguments with the peer reviewed research. When asthma was once though of as a psychological illness, did you hear people clamoring to change the name? No, you saw the research and the body of literature grow to the point that the illness could no longer be seen as psychosomatic.

Read the court’s decision and weep for Ms. O’Brien. But know that one day– I hope soon– Multiple Chemical Sensitivity will be added to the long list of illnesses that were once thought to be “idiopathic” such as asthma, autism, Parkinson’s disease, ulcers, multiple sclerosis, lupus, interstitial cystitis, migraine and ulcerative colitis, all of which have been claimed at one time to be generated by a psychological mechanism. How long it will take for the courts to catch up with the current body of literature clearly showing a causal relationship between toxic chemical exposure and Multiple Chemical Sensitivity is anyone’s guess. But I think we may see more of this debate in the news as the recent BP oil well blow out in the Gulf and the subsequent health issues play out in the courts.

*Read more more about the dangers of ozone treatments here.

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Tags: Home, Law, MCS, Multiple Chemical Sensitivity, Toxic

The aftermath of the fire in Ookala

Posted on Jul 20, 2010 by Susie Collins in Susie Collins, Susie's Secret Garden

In the days following my neighbor’s house fire, I have discovered gems of protection and compassion from unexpected places.

The charred bamboo that protected my home from the heat and flames of my neighbor's house fire. That's my red roof in the background.

On Saturday, I blogged about my neighbor Dr. Tawn Keeny’s house burning down on Thursday. Since then, I’ve spent a lot of time processing what happened.

As I described in my post, while the tragic event unfolded before my eyes, several helpers and I were manning hoses on my fence line. We had a two-fold mission: keep the fire from encroaching my property on the ground where it was creeping along in the grass, and hose down my house itself as well as the foliage in my gardens that run along the fence line. I wrote about the tall bamboo that took most of the heat during the worst of the fire, even going up in flames at one point, which in turn incinerated the top of the 40-foot palm at right in the photo above.

That half hour of fighting the fire was definitely one of the more intense half hours of my life! Time got very contorted, although I believe only about 15-20 minutes went by before firefighters arrived and beat the flames back for good. I am extremely grateful for my helpers for all their hard work in protecting my home, and I’m also extremely grateful for the firefighters who brought the fire under control– they arrived just in time; I just don’t know how much more we could have done with our little hoses as the fire grew and grew.

Over the days following the fire, we watched as more of the bamboo leaves on the fence line turned brown and died. Our avocado tree is located a bit further up the fence line, above a wood pile that stubbornly burned long after the house fire was extinguished. That avo tree also showed more brown leaves each day. Here’s how it looks today looking up the hill toward the avocado tree:

Looking up the fence line with bamboo at right and my avocado tree at the far end.

The burned site in its totality is sobering, and it feels a bit like sacred ground. I took many photos this morning of the burned home itself, but I don’t feel comfortable publishing them since it’s not my property. The home is owned by my friend and family physician Dr. Tawn Keeney, and I know this tragedy has affected him deeply. I don’t want to add to that sorrow.

I am feeling very grateful for these beautiful bamboos. The fire inspector told us that he rarely sees adjacent homes catch fire when there is foliage between the houses. I can’t even describe to you how hot the fire was. The wood pile you see above spontaneously erupted in flames simply from the heat coming from the flames originating in the house. That entire space you see there above was a wall of fire at least 25 feet high and reaching all the way from the burning house at left to the hedge at right. Trees located much farther away from the fire up in the back were fried. So I know that were it not for this thick bamboo hedge, the gardens closest to my home would have been overwhelmed with heat, and who knows what would have happened to my house. There were two propane tanks against the house less than 30 feet from this hedge.

But look at the inside gardens on my side of the bamboos:

My secret garden would have been fried, and possibly my house, were it not for this magnificent bamboo and my helpers who kept everything wet during the fire.

We called the nursery where we bought the bamboo, Quindembo, to find out if they thought the fire damage was fatal. Quindembo owners Susan Ruskin and Peter Berg thought not and told us to look at the base to find the new shoots. Sure enough, there at the base are the new shoots already emerging– how’s that for timing? And we learned something else very interesting. Because bamboo stems are full of water, Susan and Peter said they don’t catch fire. So while the leaves of the tall blow pipe bamboo ignited in a roaring flame, the stems did not catch like a tree probably would have under that intense heat. Those bamboos shielded my gardens and my home from that wall of fire. They were the guardians of Susie’s Secret Garden.

In the days following the fire, I also have discovered gems of compassion from unexpected places. Because of my Multiple Chemical Sensitivity, I started to get sick from the fumes of the charred rubble from the burned house. It rained Saturday night and Sunday morning, but when the sun hit the rubble on Sunday afternoon, the evaporation released something from the ash that hit me like diesel fumes. It was as if a diesel truck was idling outside the window. I started feeling nauseous, dizzy, fatigued, and my eyes became irritated. When the good doctor found out, he contacted the demolition company that’s scheduled to raze and haul away the rubble, telling them that I have a medical condition and asking if they could move up the date of the job because I was getting ill from the fumes of the ash. The owner of the company said yes, he could rearrange their schedule and come sooner, starting tomorrow morning. How incredible is that?

I think this extraordinary act shows so much about who Dr. Keeney is. He’s my family physician as well as a friend and neighbor, and in his time of loss, he cared enough to pick up the phone to see if the date of demolition could be moved up because I was becoming ill. It also says a lot about the company owner, Louis Nobriga of D & D Trucking, who was flexible and responsive to a client’s request. It also shows the kind of magic that can happen when you live in a small, tight-knit community.

I’ll be vacating my home during the demolition and removal of debris. We know that dust control will be implemented, and we’ll take measures to seal up the house just in case some particulate matter becomes airborne.

Meanwhile, Dr. Keeney is already making plans for building a new home, a bit further up the hill where he will have a spectacular view of the ocean.

Susie's Secret Garden, my sanctuary.

©2010 Susie Collins

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Tags: Air, Chemicals, Environment, Garden, Home, MCS, Multiple Chemical Sensitivity, Toxic

Fire in Ookala!

Posted on Jul 17, 2010 by Susie Collins in Susie Collins, Susie's Secret Garden

My neighbor’s house caught fire Thursday evening, shooting flames about 20-30 feet high, reaching out in the breeze in the direction of my home less than 40 feet away. Talk about an adrenaline rush.

Before firefighters arrived, flames engulfed this whole area, shooting up about 20-30 feet, sending some of the foliage in my gardens up in flames.

Just beyond my fence, the neighbor's house is engulfed in flames.

Our neighbor’s house burned down Thursday evening. While struggling in real time to comprehend the tragedy of my dear neighbor’s loss, I spent about a half-hour in thick smoke, spraying down my own house and surrounding foliage so it wouldn’t catch fire. My husband was in Hilo some 45 minutes away. But four people came by to help, two of them I didn’t even know– they were driving by and stopped to see if they could help. Good Samaritans!

Smoke going up into the back gardens. Later, when things were under control, I worried about my chickens, rushed up into the back and found them huddled together in a fairly safe place and just fine!

At one point, there was a wall of 30-foot flames about 20 feet from my house, and four of us worked the hoses until the fire department arrived. The smoke was really thick. My friend Cathy, who came to help, knows about my Multiple Chemical Sensitivity and kept encouraging me to leave the area. I had to make a decision in real time: worry about breathing toxic smoke or protect my house. I opted for protecting my house until firefighters arrived.

I feel okay today, by the way. I was very tired with a sore throat and burning eyes on Friday, and am doing better this morning. I hate to think about what’s in my lungs but I’m doing a lot better than I thought I would be.

I feel so bad for my friend and neighbor, Dr. Tawn Keeney, who lost his house. Tawn owns the historical Honokaa People’s Theatre and is a long-serving physician at the Hamakua Health Center. He’s my family physician, a real life country doctor and such a dear. He was not home when the fire started. The fire was out of control fairly quickly and there was nothing we could do to help.

My house. One of my helpers positioned a ladder in case embers reached the roof, we could douse it with the hose.

Tawn is a pillar of our community here in Ookala. Our hearts are so saddened by this loss. He loves that house so much, and is always talking about how much he loves it and truly appreciates its history. The houses here were built circa 1920s as part of the sugar plantation that existed here in our village of Ookala. Tawn had recently replaced the roof and the floors.

The fire started at around 4:30 pm. It’s really hard for me to say when the fire department got here because I lost all track of time; maybe 15 minutes from the time I called 911. It seemed like an eternity. The flames grew so fast! Within minutes flames were so high and so hot, less than 30 feet from my house.

At one point, the worst two or three minutes of the ordeal before the fire department arrived, we were literally staring at a 20- to 30-foot wall of flames less than 15 feet away from us. The sound was so loud that we had to shout to hear each other. I must have yelled, “Watch for embers!” 100 times. We all stopped what we were doing and watched to see what the flames were going to do. They roared up and caught our tallest bamboo on fire. The flame swooshed up in a nanno second and caught the top of a 40-foot palm. One of my helpers exclaimed, “Here we go!” I literally dropped down on my knees and prayed. But then the miracle happened: because the bamboo stems are not readily burnable, coupled with the fact that we had doused as much of the plant as we could as high as we could, the fire on the bamboo (and the palm) burned out quickly– and then the breeze let up and the high flames pulled back a bit.

It was a big smokey mess and I do worry a bit about what we were breathing. For one thing, these old houses all have layers of lead paint encapsulated under renovations.

One of the good Samaritans was a young man whose arm was burned because he was reaching out over my fence so bravely to keep the flames down on the grass and away from that bamboo. He barely left his post when that wall of fire encroached. The other good Samaritan kept spraying a wood pile that had caught fire bit further up the fence line– that fire was threatening to draw flames into my huge avocado tree.  Two of my helpers were my friends Ross and Cathy Perrins. Cathy had a hose at the fence line and Ross set up a ladder on my house in case we had to access the roof. My job was to keep the house itself hosed down. I credit these four people for protecting my house until the fire department arrived. I could not have done any of it alone. If that bamboo had caught fire and fallen, our house may have caught fire. My appreciation can’t be put into words.

The photos are taken after the fire department arrived. The first thing they did was send fire fighters with hoses to the main fire, but they also stationed one on my fence line by that bamboo and the wood pile. It wasn’t until then that I thought to get the camera. Meanwhile Dr. Keeney’s house was engulfed.

The fire department stayed until 7:30 p.m.. The fire inspector said the cause of the fire is undetermined.

This is shot from the front of the property that burned. You can see how the flames traveled on the grass from the burning house on the left toward my property on the right. My helpers were stationed with hoses on my fence line inside that bamboo hedge at right and kept the grass wet in that green section you see.

Fireman dousing wood pile that threatened to lead flames into my property. One of my helpers had kept flames from this pile away from my property by spraying it with the hose. I don't know how he withstood the heat.

Firemen could not get the wood pile to stop burning even though they'd flooded it with water. So this fireman doused it with chemicals. I was not mad about this use of chems at all, I just wanted the fire out! Those are my wilted plants in the foreground.

Now we can see the rubble as the smoke calms down. This is a tragic story: my friend and neighbor Dr. Tawn Keeney, lost his house.

©2010 Susie Collins

P.S. I’ve had some comments on Facebook that the prayer is what saved my house. I don’t want to get all religious here, but I had no intention of inferring that. One of my favorite sayings is “Trust in God but tether your camel.” The bamboo didn’t catch fire for several practical reasons: bamboo stems don’t readily burn like wood, we’d sprayed most of the plant down with water, and the wind shifted slightly away from my house just as the flames licked in and up. But you better believe I’ll throw a good prayer up there just for good measure when standing between a 30-foot wall of fire and my house.

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Tags: Air, Chemicals, Environment, Garden, Home, MCS, Multiple Chemical Sensitivity, Photography, Toxic

The myth of a “safe place”

Posted on Jun 16, 2010 by Susie Collins in Blog, Healthy Living, Kimberly Shaw, MCS

I have come to a personal conclusion through research, interviewing others with MCS, and my own personal experience, that there is no such thing as a totally “safe place.”

By contributor Kimberly Shaw.

In this modern age, a "safe" area of the world has basically become an illusion.

Having lived and/or visited eighteen states and seven countries since I was diagnosed with Multiple Chemical Sensitivity, I know quite a bit about searching for a safe place to live. I have come to a personal conclusion through research, interviewing others with MCS, and my own personal experience, that there is no such thing as a totally “safe place.”

Even when we have found a “safer” area to live, circumstances can change around us. These circumstances can be situations we have no control over like a wildfire, an oil spill, a new road being put in, a neighbor spraying pesticide or volcanic smog.

In this modern age, a “safe” area of the world has basically become an illusion. Not trying to burst anyone’s bubble, but it saddens me when I meet people who believe if they could just move to utopia they would finally heal. When they may find the tools for their healing process right where they currently live.

Several months after I was first diagnosed with MCS, I was able (through nothing short of a miracle) to move to a “safer” house. The house was just a city over from the previous home, but it had hardwood floors, no new construction or paint, a whole house water system and a detached garage. We had the ducts cleaned and bought some air purifiers and it became my healing place. It also became my “safe bubble” from which I was first unable and later afraid to leave.

About that time I read a quote from Helen Keller, “Life is either a daring adventure or nothing. Security does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than exposure.” While the quote does not apply to those with MCS in the sense that we can (and should) avoid many exposures and dangers, it did show me that my feeling of security was just that, a feeling. I would eventually need to risk and leave the house. That there are no guarantees of safety. All I can do is make the wisest decisions I can make, have the safest house possible and try to plan for the unexpected. In the meantime, I also need to live! Which means sometimes I’ll be at risk when I leave my home. Then again, just staying at home could become risky. One summer in my “safer” house wildfire smoke came into the area and I had to leave my home for several weeks.

Since that first “safer” house, I have moved many times and traveled more than I ever dreamed possible. I have come to realize that the safest place for me is one I create. While I have found there is no “safe place” in terms of an area of the world, there are certainly areas that are far “safer” than others. I feel we need to pick the safest area possible for our situation (taking into account jobs, family, friends, finances, medical care, transportation, etc.) Then we need to find the “safest” place in that area. At that point we can create a “safe” haven in that place.

We can largely control what goes into our house and our bodies. I have found much of my healing has come from being able to control those areas. Most of us with MCS spend a lot of time in our homes, so our homes need to become the safest place possible.

I have had the wonderful opportunity to meet many with MCS during my travels and interviews to make a documentary film about MCS. One thing that has become very clear is that we are all so very different. What works well for one person may or may not work well for another. However, those with “safer” homes regardless of where they live seem to do better than those living in homes that have chemical or mold issues. It seems to better to have a safer home in a more polluted area than live in a less polluted area in a home with issues.

For me, the question has become, “How can I make where I live the safest place possible?” Rather than, “Where is the safest place to live?”

Disclaimer: I am not suggesting anyone ever stay in a bad situation or area. Some places cannot be made better. If you are in a high risk place, leave as soon as possible. I am only suggesting that there is no “utopia.” Some places do seem to work better for most than others though.

Learn more about my documentary film on Multiple Chemical Sensitivity at Adventurous Canary Productions. Come visit me at my blogs Adventurous Canary and Serendipity.

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Tags: Environment, Healthy Living, Home, MCS, Multiple Chemical Sensitivity

Open tabs

Posted on Jun 07, 2010 by Susie Collins in Blog, News, Susie Collins

Here are some websites and stories I’ve been reading this week.

The National Children’s Study is a multi-year research study that will examine the effects of environmental influences on the health and development of more than 100,000 children across the United States, following them from before birth until age 21.

I highly recommend everyone become familiar with the National Children’s Study.

Excellent article on Air Filters: Choosing Portable Equipment.

The New York Times reports on Domestic Detox: Extreme Home Cleaning.

Adrien Bledstein’s I Can Breathe! Masks.

Annie Leonard, The Story of Stuff creator, talks about polyvinyl chloride (PVC).

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Tags: Children's Health, Healthy Living, Home, Products, Toxic

CNN investigative report Toxic America with Dr. Sanjay Gupta to rebroadcast tonight and tomorrow

Posted on Jun 05, 2010 by Susie Collins in Blog, Environment, Government Regulation, Media/Videos, Products, Susie Collins

The two-part CNN investigation “Toxic America” with Dr. Sanjay Gupta will rebroadcast tonight and tomorrow night, Sat & Sun, June 5 & 6, at 8 p.m. Eastern Standard Time. Check listings in your area to confirm times. Don’t miss it!

I was hesitant to recommend the CNN special Toxic America with Dr. Sanjay Gupta until I saw the first airing. It’s pretty good actually, although if you look at it through the lens of Multiple Chemical Sensitivity you may feel that it falls short in many areas. Still, it’s heartening to see this topic and type of investigative reporting on mainstream media. Dr. Gupta does a good job of presenting the problems of toxic chemicals in our environment and our homes, and he shows genuine concern, repeating over and over the fact that out of the 80,000 chemicals put into consumer goods, only 200 have been tested for safety.

Click here for dates and times of ONLINE replays June 7, 8, & 9.

Also, for those of you so inclined, CNN is inviting you to “Share Your Story” through video or photos:

Put yourself on video and document conditions in your area, or take photos of what’s around you. Tell us what industrial or chemical pollution may be contributing to health problems for you and those you love, and be sure not to put yourself in a dangerous situation.

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Tags: Air, Asthma, Children's Health, Environment, EPA, Home, Indoor Pollution, Policy, Products, Research, Sick Building, Toxic, Video

MCS and the search for a safe community

Posted on May 24, 2010 by Susie Collins in Blog, Healthy Living, Keith Carlson, MCS

Based on our research and experience thus far, our conclusion is that intentional communities are not a safe bet for those with MCS and environmental illnesses, and the learning curve remains steep even for those who claim to be living a sustainable and healthy lifestyle.

By contributor Keith Carlson, RN, and Mary Rives.

Keith

In honor of MCS Awareness Month, my wife, Mary Rives, and I are posting this co-written article in order to share more deeply regarding one of the most significant reasons that we undertook our current journey around the country.

Because we both live with Multiple Chemical Sensitivity (MCS), finding a safe place to call home is paramount to us, and those who have MCS understand what it’s like to live like a “canary in the coal mine” in a world saturated with substances that undermine our health and impair our ability to function effectively.

Mary

With recent reports showing that even ADHD may be linked to pesticide use, there is a crucial necessity for us to be more public about our MCS, our search for safe housing, and the need for greater awareness about the effects of chemicals, pesticides, and manufactured fragrances on the health of humans and the environment. That said, many hospitals and other health care facilities are now becoming fragrance-free in an effort to support the health of patients, thus awareness is indeed growing about this important public (and personal) health issue.

We offer this article as a missive of support and hope to other canaries, as well as a plea to those without MCS—especially intentional communities—to more deeply understand our plight.

~Keith Carlson and Mary Rives

~~~

When it comes to finding safe housing, everyone with Multiple Chemical Sensitivity (MCS) will agree that this is one of the most daunting challenges of living with this most highly inconvenient and disheartening medical condition.

After living in New England for 20 years and becoming chemically injured in the process (most likely due to hidden mold in our home), it was no longer safe for us to live in our beloved neighborhood or continue to work in our meaningful jobs.

Our lovely arboreal homeowners’ association provided what at first appeared to be a healthy sanctuary for our family of three, but our blissful existence was often impeded by the imposition of a variety of common household toxins, including the fumes of lighter fluid, charcoal, dryer sheets, and lawnmower and vehicle exhaust. Lying in hammocks or eating home-cooked meals on our custom-made screened-in porch, we were often driven indoors by clouds of the aforementioned toxins filtering through the forest and onto our property.

When exposed to various chemicals and environmental toxins, we each experience a similar yet somewhat different constellation of symptoms, including headache, confusion, sore throat, irritability, asthma, hives, joint pain, muscle pain, and burning eyes. When mold was discovered in our attic after our house was put on the market, the potential culprit of our mutual MCS only added to our intense desire and need for a safe refuge.

In our workplaces which had fragrance-free policies, we were both exposed to environmental insults that exacerbated our condition and underscored the need to radically change our lives. Policies are virtually ineffective without enforcement, often driving wedges between people of varying cultures and levels of acceptance, support and awareness. The commitment to educating others can be exhausting, and workplace exposures impair job performance and strain professional relationships. Thus, we canaries often find ourselves frequently leaving otherwise satisfying and meaningful jobs in order to preserve our health and sanity.

Having lived in an intentional community early in our relationship, we decided that ecologically-minded intentional communities with a focus and commitment to sustainability would offer the greatest potential for finding a safe home. We hoped that this form of community would use earth-friendly, biodegradable and non-toxic products in keeping with that vision of sustainable living, and provide for us a safe place to live our lives in peace and health.

Hitting the proverbial road in a 29-foot mobile home, we began to scour the country for an intentional community or eco-village that offered an opportunity for healthy living. Traversing the East Coast, Deep South, Gulf Coast and Southwestern United States, we visited over two-dozen intentional communities in more than twenty states over the course of seven months.

Many of these communities profess to live close to the earth by using sustainable building and permaculture techniques, renewable energy sources, organic gardening, and other well-meaning practices. In our naivete, we did indeed assume that “sustainable living” would include the use of earth-friendly and non-toxic products, but we’ve sadly found that many such communities simply reach for the cheapest common denominator, with Tide, Bounce, Palmolive, Cascade and other products being the easy mainstream fix.

Our disappointment and disillusionment were great when many visits to such communities revealed that people were often unwilling to “walk the talk” when it came to using safe and healthy products. As to the issue of being fragrance-free and MCS-friendly, most communities appeared oblivious at best, much to our dismay.

Earthaven Ecovillage in Asheville, North Carolina, Sunflower River Community in Albuquerque, New Mexico and The Commons on the Alameda Cohousing Community in Santa Fe, New Mexico are the three communities that we have found in our travels to best embody earth-friendliness and consideration for those living with MCS.

While people at Earthaven do indeed burn a great deal of wood for winter heat and state that they are not well-equipped to have people with severe MCS join them, many of the residents appear to embrace true sustainability. Sunflower River has no openings for new members at this time but they are a growing community that truly walks their talk. Twins Oaks and Acorn communities in Southern Virginia are runners up, but they use lavender scented natural detergent which neither of us can tolerate without becoming symptomatic.

Although the numbers are few (and we have only visited a fraction of the intentional communities in the United States), we are grateful to have found a few that seem to understand how important it is to use biodegradable products that are healthy and earth-friendly. And of these few, the Commons on the Alameda is the only one who uses all fragrance-free products!

We are planning to live at The Commons this summer in order to test the waters and see how their experiment in MCS-friendly community is going. The Commons is an established cohousing community with 28 homes and a common house located in Santa Fe, New Mexico.

The Commons on the Alameda Cohousing Community in Santa Fe is an extremely MCS-friendly community that has adopted a strict fragrance-free policy in an effort to create a safe haven for residents with environmental illness. Championed by an medical doctor specializing in environmental medicine who lives at the community, the shared spaces at The Commons are for all intents and purposes fragrance-free, and guests and residents are urged to comply with the policies. We are actually planning to live at The Commons this summer in order to test the waters and see how their experiment in MCS-friendly community is going, bringing with us great hopes that we will find it to be a safe haven where we can, at long last, feel comfortable and at peace.

For canaries considering looking into intentional community as a possible source of safe housing, we would like to warn those with MCS that even eco-villages and communities that espouse sustainable living as a way of life so often overlook the very products that people put on their bodies, into the water, and onto the ground. As many of us already know, mainstream products are often cheap, readily accessible, and have brand recognition that even the most alternative individuals cannot resist. The tendency (can we even say addiction?) to purchase such products is rampant, and even those who live in intentional communities often choose to drive to Wal-Mart and buy whatever cleaning products are on sale. We understand that communitarians also have to make ends meet, but when one’s habits as a consumer fly in the face of one’s proclaimed ecological lifestyle, questions are raised as to whether that community or individual is truly thinking clearly about their choices as a consumer and their commitment to the earth (and their health).

Based on our research and experience thus far, our conclusion is that intentional communities are not a safe bet for those with MCS and environmental illnesses, and the learning curve remains steep even for those who claim to be living a sustainable and healthy lifestyle.

Meanwhile, many of our fellow canaries live with severe MCS which prevents them from exploratory adventures like the one we’ve undertaken. They are unable to risk the dangers–and expenses–of the unknown, despite the fact that they have so much to contribute. Living with MCS sadly often necessitates social isolation in order to minimize symptoms which only worsen with subsequent exposures to the most basic of chemicals. Adding to the isolation are the common financial hardships caused by the medical need to let go of jobs in toxic work places. Employees with MCS are also frequently discriminated against by employers who are unwilling to make reasonable accommodations, despite the fact that MCS is recognized as a disability by the Americans with Disabilities Act.

Having MCS inconveniently interrupted our careers and engendered enormous out-of-pocket medical expenses in order to prevent our illness from worsening. Even with good health insurance, access to treatment has been very expensive and limited, and the fact that the AMA refuses to recognize MCS as a physiological illness makes finding sympathetic medical providers an additional challenge. Avoidance is the best medicine, thus our radical lifestyle change and quest for safe community living.

Our hope for the future is that more and more intentional communities will realize the importance of the need for safe housing, including across-the-board use of fragrance-free, environmentally friendly products. May they become safe havens for canaries of the coal-mine while taking their commitment to the earth and her inhabitants even further. Meanwhile, perhaps a few MCS communities will even be born from our collective desire for a safe place to rest our weary heads!

We remain hopeful that we will find a place to call home for the long-term where we can live safely and in better health. We also remain realistic that uphill battles and further education will be needed for those with whom we share living and breathing space, perhaps for the rest of our lives. For now, the two of us will continue to explore whether intentional community will fit thebill when it comes to healthy living as we land in our temporary nest with great hopes for a healthy future for all.

~~~

This post was originally published on my blog Digital Doorway, a digital venue for creative expression, nursing adventures, reflections, thoughtful reverie, thoughtless repose, and other flotsam and jetsam. You can also visit me at Mary and Keith’s Excellent Adventure, where my wife and I blog about living full-time in our new RV, traveling the highways and byways of America, visiting intentional communities, and bringing Laughter Yoga and the benefits of health and wellness coaching to new and old friends along the way! ~Keith

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Tags: Environmental Health, Environmental Illness, Healthy Living, Home, MCS, Multiple Chemical Sensitivity

Multiple Chemical Sensitivity again featured on popular TV show in Spain

Posted on May 15, 2010 by Susie Collins in Blog, Eva Caballé, MCS, Media/Videos

Here’s another Multiple Chemical Sensitivity report done by Telecinco, one of the most important national TV channels in Spain. This report includes English subtitles.

By contributor Eva Caballé, Spain.

A few days ago, I shared with you the video of a report about Multiple Chemical Sensitivity featured on Telecinco, one of the most important national TV channels in Spain. The report aired during the news. It was in Spanish and some of you asked me if there would be an English version.

Last weekend, a longer version of this report was aired and will be repeated every day until next Sunday. I decided to add subtitles in English to this longer version because it’s even better than the first one. During the video, you can see Dr. Ramón Orriols explaining his study “Brain dysfunction in Multiple Chemical Sensitivity.”

I want to share with all of you the video in Spanish with English subtitles. And I want to thank Susie Collins for her corrections. I hope you like it!

Hugs,
Eva

Here’s the transcript:

MCS TV REPORT

Telecinco: If we do a blood test, we realize that more than 200 chemical substances are present in our body. It’s impossible to live without toxics in a city. There are chemical substances in our shampoos, cosmetics, perfumes, air fresheners and in the cleaning products that hospitals, public transport and malls use. There are chemicals everywhere threatening the health of people with Multiple Chemical Sensitivity. Here lives a 37-year-old woman who has lived isolated for three years because of her MCS. If she smells a perfume, she suffocates. Living isolated without having contact with anybody is the only choice she has in order to survive. The world is toxic for her.

Eva Caballé: Hello, my name is Eva Caballé. I’m an economist from Barcelona and I’ve lived with Multiple Chemical Sensitivity for four years. My husband, David, is my contact with the outside world.

Telecinco: David has recorded the images because nobody can come into their house because it would be too dangerous for her.

David Palma: This is our main door and it’s sealed to avoid odors. We have several air purifiers in strategic places. For example, this one at the main door and this other that controls the door of Eva’s room.

Eva Caballé: When I’m exposed to any chemical product, my first symptom is that I can’t breathe. After the dyspnea, I have tachycardia, my skin burns and I have extreme fatigue and my legs become paralyzed.

Telecinco: They have already spent 30.000€ to adapt their house to MCS. She has lived with Multiple Chemical Sensitivity for four years and she will suffer it the rest of her life.

David Palma: The furniture is made of stainless steel. We had to throw out our wood furniture because they emitted toxic VOCs (volatile organic compounds).

Telecinco: David has to take a bath when he comes home and he follows the same daily routine for Eva in order not to poison her.

David Palma: This is a water filter. We use these ecological and perfume free products. Our toothbrush is made of natural bristles instead of nylon bristles. Our shower head has a carbon cartridge inside to filter the water. We use these salts to clean our teeth. We had to block the air vent to avoid the chemicals that our neighbors use (shampoos, deodorants, laundry detergent, etc.).

Eva Caballé: I developed MCS because of an air freshener that they started to use in the office where I used to work. One day, when I came into the office, I suffocated. In that moment this nightmare started.

Telecinco: Not only chemicals are a problem for her. She’s also sensitive to sounds, changes of pressure, vibrations and lights.

David Palma: This is the cable of our router. We don’t have WiFi to avoid electromagnetic radiation.

Dr. Ramón Orriols: All their senses are ultrasensitive. MCS sufferers have such an exaggerated response that makes all unbearable for them.

Telecinco: They have converted their home into a bunker to survive. Eva can’t even go to hospital in an emergency or take an ambulance.

David Palma: Doctors can’t make house calls because MCS is not recognized in Spain. There are no hospital protocols for this illness. If she takes an ambulance, she will be exposed to disinfectants and cleaners, perfumes used by other patients or medical staff. All these chemical products could possibly cause a medical crisis and she could even loose her life.

Telecinco: David seals the kitchen door every time he cooks. Eva doesn’t tolerate preservatives and artificial colourings. She can only eat five different foods.

David Palma: Lettuce, carrots, veal, egg and corn. We buy organic corn and we make our own flour. We are waiting until her health improves to reintroduce lentils, which she can no longer tolerate because of food poisoning that she suffered a few months ago.

Telecinco: But most frustrating for them is that MCS is not recognized as an illness. Eva Caballé spent two years and one month to find the right diagnosis after she visited more than 22 doctors who labeled her as delicate.

David Palma: I think that MCS is not recognized because of economic interests. The chemical and pharmaceutical industries don’t want it known that normal everyday chemicals, like shaving foam or nappies, are toxic. They are afraid to have people realize that normal everyday chemicals cause diseases.

Dr. Ramón Orriols: The real truth is that MCS exists. The MCS sufferers exist and we must give them a solution.

Telecinco: Dr. Orriols is a pneumologist who has studied the brain of MCS patients and his study has proved that MCS is a real illness.

Dr. Ramón Orriols: The important thing is that this illuminated part disappears right here. This doesn’t happen with healthy people. MCS suffers have an alteration just in this center which controls the olfactory stimulus.

David Palma: And here is where Eva lives.

Telecinco: Eva is totally disabled because of MCS, CFS, Fibromyalgia and Hashimoto’s Thyroiditis. Her body is broken but her mind is very active. She authors a blog where she spreads information about MCS and she has written a book that she can’t even read.

Eva Caballé: I can’t touch my book because the paper and the ink are toxic for me and they would cause me a crisis. This is the reason why my book is wrapped.

David Palma: She worked, she went daily to the gym, and we used to spend the weekends going to rock concerts and we also had a rock band. We had an active and full life.

Telecinco: Do you feel lonely any time?

David Palma: No, because I’m with her.

Telecinco: They will keep on fighting together until MCS is recognized as an illness.

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Tags: Chemicals, Environment, Fragrance, Home, MCS, Multiple Chemical Sensitivity, Products, Toxic, Video

This is progress!

Posted on May 12, 2010 by Susie Collins in Blog, Guest Bloggers, Healthy Living, MCS

I am about to talk about the most hotly debated and taboo topic in the MCS crowd– and that is about healing and possibly being cured. Since I am always on a steady upswing and will never give up, I thought I would just jot down the things I felt were helpful to me– no matter how controversial they may be.

By guestblogger Leslie Richard.

I am trying to learn to drive a car again after five years of being house bound!

People who have never experienced a chemical injury or some kind of health breakdown that causes a person to get Multiple Chemical Sensitivities may find this post a little weird… So be forewarned, let your judgments and confusion take a nap while ya keep on reading.

For those of you who have MCS, ya might have to let your judgments go, too, cause I am about to talk about the most hotly debated and taboo topic in the MCS crowd– and that is about healing & possibly being cured. Yeah, I said the “C” word, and now I am gonna tell you what I really think…

Some of us who developed MCS know exactly what happened, you might have been exposed to chemical in your workplace and then watched your health take a spiral into a housebound hell, you may have been renovating your home and didn’t recover, you may have been a Gulf War veteran who was lied to until recently about pills you were administered, or a 911 victim… or maybe an average person like me who was exposed to various things over time and happen to have an auto immune disease that caused enough damage to make the normal body functions take a dive six feet under.

However you got to the stage of MCS, no matter how hard you had to fight to be understood and never truly were by everyone… there is also this point of acceptance and letting go– letting the label of being “sensitive” be as big a deal as having brown hair.

Over the years, my symptoms of MCS kinda took up and down dives, with being only generally sick when going into K-mart (who isn’t sick in that place?), or when exposed directly to fresh paint, or loud amounts of perfume. These things bordered on normal, and didn’t stop me from at least hanging out at thrift stores. But nearly five years ago I got pregnant, and very sick– when I lost the baby my mild MCS turned into raging impossible to deal with every smell makes me wanna pass out and kill people so I must hide in the woods MCS. It was so intolerable that I could no longer drive without having seizures, I could not stand for my X-boyfriend to come home from the store and get near me with his smelly clothes, I could not hang out with or visit any other humans, or go anywhere in public. After nearly a year of this kind of hell-ish reclusive life, I ventured out…

I didn’t go sticking my head inside of paint cans or huff glue, but I decided if the world was going to kill me, then Fuck It! Let it kill me while I am living my life and doing what I want–

This is the healthier me AT A PARTY recently that included a lot of people, bonfire, some people smoking.

I started off slow and made small goals. Each time I reached a small goal (like buy a lottery ticket at a gas station two blocks away), I would set the bar higher and further ’til I was working on a more functional level. Four years later… look at the picture, that is me AT A PARTY that included a lot of people, bonfire, some people smoking, etc…

Two things I noticed over these years:

1. MCS is not in your head, people react to nasty shit in our environment as a natural part of our body’s function.

2. I (my body) was so used to reacting, there was some auto-anxiety involved… not “in my head” but anxiety that was learned and out of control. Anxiety bad enough to be confused – like was it a symptom or anxiety causes me discomfort?

The reason I bring this up is ’cause there are a few things I have done over the years that I believe have helped me improve. I am not cured, but since I am always on a steady upswing and will never give up, I thought I would just jot down the things I felt were helpful to me– no matter how controversial they may be (and knowing everyone’s body will need their own personal combo of things to heal!)

1. I got on the macrobiotic diet. I did not eat bad before that, in fact I have eaten all organic & whole foods long before health problems, but this diet has some really helpful ways to keep your foods appropriate for your ailments, the seasons, your body temperature, and healing in general. Over time I branched out and added back in some whole foods not strictly on this diet, but ones that help improve my energy and give me a greater variety of nutrients.

2. I got outta my head. This one will undoubtedly make some people with MCS upset ’cause it’s not a head disease, but with any health problems sometimes the best thing we can do is get the heck outta our own way and STOP for da’ love of gawd thinking about sickness, what causes sickness, how we got sick, being mad we got sick, blaming the world we got sick… etc. (you know the thoughts I am talking about!). I had to start thinking about life and my dreams, and not about “sickness” stopping my life.

3. Risks. I am not recommending anyone with MCS do anything to put themselves in harms way, but for me I had to take some risks to find out what my real limits were. With all the other helpful things I was doing for my health (clean house, clean diet, homeopathic detox, being nice to myself) there would come a time when new limits needed to be tested if I was to ever be able to branch out and do anything beyond my own backyard. Each time I took a successful risk (no matter how many were unsuccessful) I was able to do that much more and that did wonders for my mental health, too.

4. Homeopathic/Medicinal stuff. I tried about a billion things, but the only stuff I used that worked for helping detox my body in a gentle way were homeopathic pills for kids (Newton brand) and eating shiitake mushrooms (takes out heavy metal and junk real gentle, easy and tastes good, too!). I don’t like taking pills of any kind, and I did best when I stopped taking all the pills recommended to me and just took the one homeopathic or nothing at all.

5. I got a therapist! Hell yeah I did, because being sick is not easy to deal with and it turned out I learned amazing skills and coping methods that reduced tons of stress in my life and I only had to go for a short period of time before I learned to support myself emotionally and forgive and live again. What I learned in therapy about how to deal with being sick, rolled over into every relationship for the better.

6. Exercise!! No matter what, even if it’s hard and makes ya fatigued. I did this even when bed ridden and at my worst, getting the body moving and the blood circulating is your ticket to wellness.

7. Nice Home Environment. It never needed to be the Taj Mahal for MCSers, just had to not be freshly painted or super disgusting– I moved around more times than I can count on two hands and generally my house plants cleaned the air good enough each time. The really important part for me was not living right in a city (too much pollution), to have fresh air outside, to open my windows, to walk in the woods, to grow my own food, and have animals around me.

8. Brain re-training. I KNOW, this is the one people in the MCS community have been either seething with hate over, praising, arguing, or banning… but I tried it. Let me just tell ya’ll, I didn’t even watch all the CD’s for the Gupta Program but only up until the specific exercise to re-train your brain and I started doing the exercise immediately everyday. Did I do it like 20 times a day like he suggests? NO way maybe like once a day… nor did I do any of his meditations and all those suggestions on how to breathe ’cause I already had enough self help like that in my bag of tricks. But when I had a majorly bad thought about being sick, or bad symptoms, I did the exercise and then moved on. Brain re-training helped me, I can’t put my finger on it but once I started thinking in a positive direction and got my brain outta auto-sick mind, my bravery and ability to do things doubled up ten fold times 100!

This method has helped me tons with my newest challenge, and that is I am trying to learn to drive a car again after five years of being house bound! (See pic at top!)

I remember when I could not breathe in a small enclosed space with any other human unless they were totally decontaminated, chem free … but this picture below is me and my dad recently in my bathroom hanging a mirror together and the only reason my face looks like it does is cause he was calling the mirror a “f-en bastard” and scaring me with his perfectionism.

My Dad and me hanging a mirror together.

I am not in perfect health, I still have trouble breathing in certain places, I still feel ill to smell the fragrance detergents, I still know I am not reliable or well enough to go out and get a regular job… BUT I am much more functional. Functional enough to begin enjoying my life again and I wanted to put this out into the world– for those with MCS or any disease do not give up, ever! The body always is working towards healing itself, the body always wants to get better and so do you… do not give up on the miracle of healing– even if it’s slow and takes many years. Just know none of ya’ll are alone, I am over here at my little cabin in the woods believing everyday that we all can be healthy– no matter what anyone says!

Xoxoxo

~~~

This post was originally published at The Oko Box, where Leslie blogs an eco-friendly interactive commentary on organic clothing, DIY, environment, pollution, health, organic food, organic farming and wildlife adventures.

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Tags: Environmental Health, Health, Healthy Living, Home, Support

Celebrating new life and healthy choices

Posted on May 12, 2010 by Susie Collins in Blog, Franny Armstrong, Healthy Living

I’m much too young to be a grandmother, so I am Nanny Franny. And with it comes responsibility to life and good health.

By contributor Franny Armstrong.

Me with my new grandson Brock William Daniel, born April 22.

For the first time since I became ill with Multiple Chemical Sensitivity, I feel there is light at the end of the tunnel and it’s not a train barreling towards me. Keep up the faith and WILL yourself to be well. I, for one, envision myself celebrating good health and happiness. This has begun with the birth of my grandson. I’m now Nanny Franny (because of course I’m much too young to be a grandmother at 39).

My daugher Christina with Brock just moments after he was born.

Pepsi or Coke? I get asked that question a lot as an author. It’s just one of the interview questions people like to ask. I have been drinking Pepsi for decades and sometimes Coke when the other isn’t available. My hubby always says, “It’s bad for you.” Yet, he doesn’t think twice about eating chicken wings while drinking beer. Hmmm…high cholesterol and high blood pressure mixed with toxins?

We all make choices to better or harm our health. I believe it’s called “free will.” I’ve decided once again to give up pop and any alcohol then keep working one day at a time to continue on the road to wellness.

I’m happy to say that I’ve begun to react less harshly to fragrances and other contaminants after nearly ten years of “avoidance” and eating healthy. I live in the country next to a golf course but hubby doesn’t want to move. After calling the clubhouse to ask for a warning a day or two in advance of when they spray the FUNGICIDES to keep their lawns beautiful, I never received a reply.

Brock with his sister Alexis.

The first time I became ill, I dropped like a rock into poor health and could barely talk, shook like a leaf all the time, and slept nearly TWENTY HOURS A DAY! I was diagnosed as Bipolar II, yet my psychiatrist, who by the way says I’m NOT crazy (whew), agreed that moving away from pesticides that affect the brain neurologically, not to mention cause cancer, was a great idea in improving my health.

Alas, if you have an “alpha male” like I do, it’s like trying to move the Rock Of Gibraltar with a toothpick. Most of the time I stay indoors typing on my beloved laptop, pouring out the stories from my overactive imagination in the world of paranormal romantic suspense. I even write about environmental illness but those particular books are taking a long time to create. It’s difficult to write what you live, while at the same time also writing about what other people with Multiple Chemical Sensitivity live, too.

Joy goes a long way in promoting good health. My daughter is thoughtful to make sure the baby and I are not exposed to toxic chemicals. No baby powder, no Ivory Snow, no other fragrances either. She’s a gem.

TO YOUR GOOD HEALTH!

NEVER SURRENDER! NEVER GIVE UP!

Hugs,
Franny Armstrong-ParaNovelGirl

Come visit me at ParaNovelGirls and my website.

~~~

Franny Armstrong is a writer of “paranormal romantic suspense” novels filled with private investigators, police, and even Royal Canadian Mounted Police who use their amazing psychic abilities to catch the villains. Franny also uses her technical and journalistic skills to create helpful, upbeat stories and articles to enlighten and motivate people.

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Tags: Children's Health, Healthy Living, Home, MCS, Multiple Chemical Sensitivity

Setting the record straight about Linda Sepp’s housing situation

Posted on May 09, 2010 by Susie Collins in Blog, Disability Rights, MCS, Susie Collins

A recent article in The Toronto Star is full of misinformation and inaccuracies about Linda Sepp’s housing problems. I’d like to clear things up.

Linda Sepp

The Star reports on Linda Sepp’s house hunting and eviction in an article by Theresa Boyle entitled Can Linda Sepp possibly be helped? The article is full of inaccuracies about Linda’s situation that I’d like to clear up.

Before I pick apart the points, I’d like to make clear that I am a friend of Linda’s. No, we have never met, but we have emailed with each other daily for almost two years. We’ve laughed together, cried together, spent New Year’s Eve together, helped many people with MCS together, hunted for informational materials together, and built The Canary Report together into what it is today. She’s been my research assistant, and truth be told, she’s been my mentor as I learned the ropes about Multiple Chemical Sensitivity and the problem of toxic chemicals in the marketplace and the environment. Linda is very smart. The information that she shares with others is solid; I never have to worry about checking her sources, she always backs up her claims with data and reports, and she’s thorough with her critical thinking.

But Linda is also very ill and completely disabled by chemical sensitivities, fibromyalgia, and electro hypersensitivity. The old house she was living in prior to eviction on May 5, her home of 19 years, was full of mold, and she also was frequently exposed to toxic fumes wafting in from the outside. She was living in a precarious, unsafe housing situation. And as her eviction date neared, she was becoming more and more ill in my opinion, as her emails became less frequest, less engaged and sometimes merely fragments of thoughts peppered with uncertainty about her future.

The process of house hunting for Linda as her eviction date of April 4 loomed was complicated and fraught with difficulty. She is what is known in the world of Multiple Chemical Sensitivity as a universal reactor, meaning she is uber sensitive to toxic chemicals, and the smallest quantity of exposure to VOCs, pesticides, laundry products and modern fragrance (which contains known toxic chemicals), among myriad other chemicals, make her very ill very quickly. Recovery is difficult. This health problem complicates house hunting, complicates finding a safe place to live. Housing opportunities that might seem a godsend to someone who is healthy or has a less serious case of MCS, cannot work for someone as ill as Linda.

So let’s look at the article written in The Star by Ms. Boyle. First up, Ms. Boyle’s description of what Linda was asking for, which the reporter couched in an incredulous tone that says to the reader “Look at what this woman is demanding!”:

The woman, who survives on an Ontario disability cheque, said she would like a “modest” three-bedroom house on three acres of land, surrounded by trees and fresh air. It should include a sauna and a sunroom, porch, patio or gazebo for reading and artwork. There should be a small barn for chicken, goats and an animal rescue. And for guests, a bunkie and detox shower.

Except that is NOT and never was Linda’s criteria for finding safe housing. That was Linda’s dream house list (every person with MCS has a dream house in mind, am I right?), that list was never the working list that her landlord nor her housing team was using as criteria, it never was what Linda was asking for. Basically, Linda was asking for a nontoxic two bedroom with clean water and fresh outside air. Period.

Next:

But skeptics question the existence of MCS. They acknowledge that people can have chemical sensitivities and allergies, but wonder if it is a stretch to say these can be a debilitating syndrome. A June 2008 article in the Journal of Environmental Science notes that there is “considerable doubt” about the condition “from the scientific community, political leadership and many in the general public who claim that it is psychological.” The U.S. Centers for Disease Control and Prevention do not recognize it, the article notes. But it goes on to say that it would be irresponsible of public health officials not to explore the possibility of MCS.

Who cares what the “the scientific community,” politicians or the general public think about MCS? What kind of reporting is that? Linda has sent Ms. Boyle copies of the current peer reviewed research on Multiple Chemical Sensitivity, which clearly shows that MCS is a physiological illness of toxicological origin. Linda is not pulling that info out of her hat, this is the peer reviewed research of Martin Pall recently published as Chapter 92 in the prestigious international reference work for professional toxicologists,  General and Applied Toxicology, 3rd Edition (2009, John Wiley & Sons).  Further, and just for the record, here’s a list of research on Multiple Chemical Sensitivity compiled by Professor Anne C. Steinemann and Amy L. Davis at University of Washington Seattle; this document lists about 100 citations for peer-reviewed journal articles that support a physiological basis for MCS. And I will note, the Centers for Disease Control just issued a chemical- and fragrance-free policy in all their offices nationwide because of the negative effect of those products on the health of their employees– the very products that make people with MCS ill.

Next:

Before forcing her out, W.J. [Linda's landlord] made the unheard of offer of buying a $200,000 house anywhere in the province and renting it to her for $500 a month. Her wish-list to the landlord was more reasonable than what she had provided to the city. She asked for wood floors, few stairs and access to a source of organic food. A house fitting the bill was found in Lindsay in February 2008, but after visiting it Sepp turned it down. It smelled of baby powder and made her feel sick.

W.J. proposed other homes, one in Huntsville and another in Lanark. The landlord offered to buy a Solo home, a prefabricated building that could be adapted to someone with allergies. All offers were nixed.

Although such an offer can seem above and beyond anything due Linda by her landlord, and although it can seem that Linda was unreasonable in refusing all offers, anyone with MCS knows that this deal is fraught with peril. At the most basic of levels, we all know the perils involved with a house that has been contaminated with products made from toxic chemicals like air fresheners and personal care products. I know dozens of cases of people with MCS renting homes that they thought they could decontaminate, only to be made sick for a year or longer until their lease ran out.

But Linda’s situation is more complicated than even people with MCS seem to understand. Linda was living in Toronto, unable to leave her house, and had people to shop for her. Part of her decision on taking the houses offered by the landlord was that she had to gamble that she would be able to move to the house and recover enough very quickly to be able to drive at least once a week, perhaps an hour away, to do her own shopping at organic markets. If she moved to a rural place in Ontario, not only would she have to be able to shop for herself, but also she would have to be able to handle the winters in Ontario alone in a rural setting. These are both huge responsibilities to take on if you are housebound and have been depending on people doing your errands for you. You can’t just “get it delivered.” The truth is that Linda had to take under consideration whether or not she could manage living alone rurally. That is a legitimate concern. Who knows if there would have been people locally that could help her after the move?

Next:

Friends and staff from the city’s shelter support office pored over real estate listings and thought they found the perfect solution: a $200,000 home in Bobcaygeon that had been built for someone with MCS. But Sepp turned it down because W.J. refused to pay an extra $45,000 to have a couple of extra walls installed. Besides, it had bad feng shui, she said.

This is by far the most egregious of errors in the article because it makes Linda look very bad when in fact Linda did no such thing as stated.  The landlord refused to purchase that house based on it being LISTED at $245,000, which was over the landlord’s cap of $200,000. The extra $45,000 had NOTHING to do with Linda asking for any walls to be built. The comment about the “bad feng shui” had NOTHING to do with Linda refusing an offer; at the most it was an off-handed remark made by Linda way after this house was discussed and rejected BY THE LANDLORD. In fact, had the landlord said okay to buying that house, Linda would have accepted it– I have the emails from her saying that she was ready to accept that house before she heard the landlord’s refusal to buy it.

I have received many negative emails and comments on both my blog and Linda’s blog (for which I am the admin) from people who think Linda is acting unreasonable. All the comments were generated because of this article by Theresa Boyle. I have not released any of them because I can’t see how they add anything valuable to the discussion, given that they were generated by misinformation.

To Ms. Boyle: Please be very careful about how you report on this story. Check your facts. Be open to exploring current research on MCS. Cross reference your information on Linda’s situation from two primary sources, as is your responsibility. This is a drama playing out in public about a woman whose housing problem represents the housing problems of thousands of people with Multiple Chemical Sensitivity. Please do not add to the din of misinformation that hurts our community and adds to our struggle for full recognition, full health care, and full social services.

And to those of you getting mad at Linda for her not accepting so many offers of housing: Please try to use this as an opportunity for practicing love and compassion. Judge not lest you be judged. Linda is a member of our community, a valuable member, and this is a time when we can open our hearts and do nothing but love each other. Anger serves no purpose whatsoever. Our job, as human beings on this blessed Earth, is to be kind and to love. Just do it.

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Tags: Chemicals, Environmental Illness, Home, Indoor Pollution, Law, MCS, Multiple Chemical Sensitivity, Research, Support, Toxic