Saturday, May 22, 2010

MCS and the Search for a Safe Community

As some readers of Digital Doorway may know, my wife and I have been traveling in our mobile home for the last seven months, writing about our experiences on our travel blog.

In honor of MCS Awareness Month, we 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.

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.

---Mary Rives and Keith Carlson
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!

The Commons on the Alameda Cohousing Community in Santa Fe is a relatively MCS-friendly community that has adopted a relatively strict fragrance-free policy in an effort to create a safe haven for residents with environmental illness. A handful of "canaries" live at The Commons at any given time, but some have found it less than ideal on some levels, environmentally speaking. Championed by a 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 the bill when it comes to healthy living as we land in our temporary nest with great hopes for a healthy future for all.
(For more information about MCS, please visit The Canary Report.)
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