Updated: 3/16/05; 11:51:53 PM
Shelter
    Documenting a personal quest for non-toxic housing.

What Is Environmental Illness?

In 1990 the CBS television series Northern Exposure introduced America to a little known community of disabled people through the character of Mike Monroe, a lawyer afflicted by an illness known as MCS (Multiple Chemical Sensitivity) who sought refuge in a peculiar geodesic dome home on the outskirts of the eclectic Alaskan community featured in the series. Mike was 'allergic to the 20th Century' and suffered a variety of symptoms in response to the most minor exposures to chemicals. Though writers of this series took much liberty with the facts of this ailment, the essential social condition of people with this illness was well portrayed, in particular the alienation and social anxiety associated with having an illness that no one really comprehended, least of all those in the medical community who would normally be relied on for understanding and compassion.

It is unclear precisely when MCS first emerged because misdiagnosis and politically motivated denial have consistently accompanied it to the present day. But over the 1980s physicians throughout the industrialized nations of the world began reporting a steadily growing number of cases of people developing a host of chronic symptoms, sometimes vague, sometimes plain, and sometimes dramatically life-threatening, which seemed to have no obvious pathology other than an association with the presence of common household industrial products or pollution. Symptoms ranged from things one might normally associate with conventional flu or allergy -such as asthmatic, skin, and gastrointestinal reactions- to neurological effects both subtle and dramatic -such as cognitive difficulty, numbness, trembling, twitching and spasms, and partial to total paralysis. Some patients claimed sensitivity to things well beyond the conventional clinical sphere, such as electromagnetic fields produced by appliances and electrical wiring. And there were few symptoms any patients had consistently in common other than a general progressive malaise dubbed 'chronic fatigue' and a vague chronic muscle or joint pain labeled Fibromyalgia. Many could trace the onset of their illness to a trigger exposure to some specific chemical product which resulted in a sudden flu-like illness and rapid break-down, though therafter their reactions would come in response to exposures to a vast assortment of things, including foods and sometimes natural contaminants like pollen, fungal spores, dusts, and natural fragrances.

Most MCS suffers tended to succumb to the condition in mid adult-hood and are often female with middle-class backgrounds. In the US there is a preponderance of them from northern and eastern urban/suburban regions, suggesting an association with general environmental pollution levels. Male cases were rarer and more often associated with specific industrial chemical contamination or industy-related pre-cursor illnesses such as the Systemic Candidiasis which is common among brewery workers. (GWS suffers, as noted below, are veterans and mostly male, their trigger exposure related to whatever they were subjected to in the Gulf War) Children were the rarest group but also a rapidly growing one, due perhaps to an increasingly sedentary and sequestered lifestyle that keeps children exposed to more indoor air pollution coupled to a steadily decreasing quality of diet for children in industrialized countries.

These cases proved immediately politically controversial because of the implication that they could be related to ubiquitous consumer products. These 'human canaries', as some physicians had dubbed them, were a potential threat to corporate interests and the government agencies charged with establishing safety and health standards. Thus there was a tendency by the medical establishment to at first dismiss the growing number of reports and then to promote a psychosomatic explanation that effectively blamed the patient -or the influence of their physicians suggestions- for his illness -a neat solution to the issue of potential liability. This was supported by the preponderance of women among MCS patients, which suited the misogynist attitudes of a medical establishment that still tended to regard women as prone to 'hysteria.' However, the steadily accumulating body of facts eventually belied this notion, as far as the vast majority of cases were concerned, but despite being generally discredited this psychosomatic 'excuse' has persisted, particularly among government bureaucrats and the contract medical mouthpieces of major corporations. But then, it's not all that hard to find physicians in the US today who still insist that even conventional allergies are all psychosomatic.

Faced with skepticism and ridicule by the establishment, many general practitioners attempting to understand and treat MCS sought support through coalition and thus was born a community of practitioners calling themselves Clinical Ecologists. But with conventional medicine proving ineffective as treatment many of these Clinical Ecologists began experimenting with alternative treatments, sometimes bringing partial relief to their patients but at the same time earning further disdain from the establishment. There was also a problem with outright quackery as physicians of dubious background jumped on the Clinical Ecology bandwagon, attracted by a very desperate and disillusioned predominantly middle-class patient 'market' ready to be bled dry. The problem of quackery in Clinical Ecology remains to this day as alternative medicine makes continued inroads into the sphere of general health care. This has often hurt the public perception of MCS sufferers who frequently find themselves turning to the dubious science or deliberate anti-science of alternative medicine practitioners and their sometimes bizarre methods of treatment for relief when none can be found from conventional medicine.

With the end of the Gulf War in 1991 the 'family' of MCS sufferers was joined by a new community of veterans suffering from what came to be known as Gulf War Syndrome. GWS appeared to have much in common with MCS and it has often been suggested that they are one in the same. But its sufferers were commonly subject to symptoms seen only in the most extreme MCS cases. And it exhibited a peculiar ability to migrate from solders to their families when they returned home, as if whatever was causing the illness was being brought home with them. GWS proved far more controversial than MCS simply because of the political impact of veterans coming home disabled for unexplainable reasons. There were implications that the illness might be a side-effect of the already controversial military use of innoculation cocktails and other drugs unapproved for use by the general public as well as emerging accounts of blundering in the handling of suspected chemical weapons. Miltary brass from all countries involved in the Gulf War took on a unified stance in denial of the existence of GWS, the most adamant being the British military, that nation already notorious for having taken children afflicted with MCS from their homes, locking them up in insane asylums, and sending their parents to prison when they complained. To date GWS remains an unresolved issue throughout the world, leaving thousands of disabled veterans in limbo.

By the end of the 20th century MCS, GWS, and the related conditions of Chronic Fatigue Syndrome and Fibromyalgia had come to be known under the generalized non-clinical term of Environmental Illness. EI had become generally accepted as a 'real' health problem in most industrialized nations except for the US, Canada, Britain, and Australia where the concerted lobbying of vested interests and the political bickering of physicians have insured a perpetual debate over its legitimacy and a fracturing of recognition among government agencies. Most MCS patients totally disabled by the illness in the US can successfully obtain Supplemental Security Income like other disabled people but typically only after extended legal battles. Housing assistance through the HUD Section 8 program is available but inconsistently from one state to another, and often moot in any case as non-toxic public housing is non-existent. Many theories now compete as to the cause of this illness but research funding remains poor, the MCS patient community itself being the primary source of research funding. Treatment is a process of trial and error with no definitive methods. Only one strategy has proven effective in halting or reversing the illness for the majority of patients; total avoidance. This is where an EI sufferer seeks to completely isolate himself from all sources of potential chemical or pollution exposure, hence the peculiar lifestyle illustrated by the Mike Monroe character. The numbers of MCS patients is unknown due to the problem of misdiagnosis, though the number of individuals disabled by it has been roughly estimated in the area of a million with, according to an estimate by a recent Connecticut state study, some 57% of these people currently or at one time homeless due to the lack of available non-toxic housing and the scarcity of low pollution regions.

The life of the typical EI sufferer is a rough one. In most cases they have been impoverished by the health care system by the time they obtain any definitive diagnosis, thanks to the fact that doctors and psychiatrists don't give refunds when they make mistakes or have no answers. (imagine if your auto repairmen returned your car unrepaired and just shrugged his shoulders then handed you a bill for his labor...) This pattern of impoverishment through diagnosis chasing is one of the chief causes for homelessness among EI sufferers, and something patients of many other 'orphan' medical conditions also face. This impoverishment is, understandably, a great cause of resentment for the EI patient toward the medical establishment and is one of the key motivators for the exploration of alternative medicine, a situation which even EI-friendly conventional physicians are generally in denial about.

The degree of disability imposed by EI varies greatly, as does its duration. Many patients remain relatively functional despite their chronic health problems and, if lucky, go into a kind of remission with a simple change of lifestyle, usually involving the reduction in pollution in their environment. Others are totally disabled for life, unable to work, confined to a home stripped bare of all possible sources of chemical exposure, and limited to a diet of exclusively organic foods. A sense of alienation and isolation is virtually ubiquitous among EI sufferers, the logical consequence of being impoverished, frequently lied to, chronically fatigued, and unable to freely participate in a society with ubiquitous cosmetics use, pollution, and chemical-laden foods. Families are commonly destroyed by this illness, spouses and children unable to cope with the lifestyle changes or the illness and poverty induced stress imposed on their households. Not surprisingly, a number of the infamous Dr. Kavorkian's patients were EIs. Those who contracted the illness in childhood have perhaps the toughest time of all, being subject to great abuse by their peers because of their inability to keep-up physically as well as their peculiar habits and lifestyle, hampered in their access to education, and subject to the physical and emotional side-effects of incorrect medical treatment and the indignity and dehumanization of struggle with bureaucracy at an early age.

With total avoidance the only nominally effective treatment strategy, the predominant issue for the EI community is non-toxic housing, due to the combined problems of poverty, a scarcity of low pollution regions that aren't in complete wilderness, and the generally primitive and toxic nature of mainstream housing. Creating non-toxic housing is not terribly complicated and, as this journal demonstrates, there are a great many ways to do it. But in general it is difficult because of the high cost and scarcity of clean chemical-free building materials and the very primitive skill base among general contractors. All non-toxic housing is 'custom' and a typical home can cost twice to several times as much as one of the same size built conventionally. Even stripped-down second-hand trailers adapted to EI needs can cost as much as $2000 per line foot. There are perhaps only a half dozen builders and architects in the entire American continent routinely building these kinds of homes, primarily for an upper-class market which has adopted the current fashion of 'organic living.'

Contrary to the impression given by Northern Exposure, Alaska is not a popular place of refuge for people with EI due to the fact that many sufferers experience a poor tolerance for temperature extremes. The most popular refuge -some would say dumping ground- for EIs is North/Central Arizona whose mild dry climate is coupled with relatively low levels of pollution, easier access to organic food and EI-specialist health care, cheap rural land, and less hassle over housing standards. There you will find EIs who have fled polluted regions and toxic housing with little in the way of preperation, roughing it in the desert as they wait years on HUD voucher waiting lists and wandering from place to place in search of the rare unadulterated adobe or concrete block home rental with some prospect of being cleaned of its toxic interior. They live in tents, stripped-down trailers, and sometimes just their cars, the colder months shared by as many as a dozen people in the unused garages of the few EIs lucky enough to afford safe homes of their own. And these are the lucky ones. Consider the plight of those already confined to toxic conventional housing in heavily polluted regions, isolated, too sick to work, too poor to escape, and unlikely to survive roughing it in the desert even if they could. Their existence is a lonely painful wait for the inevitable collapse of their finances and death on the street. We only know statistically about the EIs who have survived this. What about those who didn't? Make no mistake, this is as potentially as terminal a disease as AIDS and we don't know how many people have been lost because they died forgotten and alone. The homeless only have two official causes of death; violence or 'natural causes.'

Copyright 2005 © Eric Hunting.