MCS Would Be Bad Enough 
Without Derisive Attacks From Skeptical Ignorami

By Charles W. Moore

In Franz Kafka's novella, "The Metamorphosis," the protagonist, Gregor Samsa, wakes up one morning to discover that he has been somehow transformed into a giant cockroach.  Gregor's parents, whom he financially supports, become
irritated when he won't open his locked bedroom door and go to work. His employer is summoned, and admonishes Gregor: "I thought you were a quiet, dependable person, and now all at once you seem bent on making a disgraceful exhibition of
yourself." Everyone insists that Gregor come out and perform as usual. Gregor doesn't know what to say.

Eventually a locksmith is called. However, when Gregor's family and boss see his condition, they are repulsed. The boss screams in horror and flees. His mother collapses in a paroxysm of self-pity. His father attacks him. Driven back behind his closed door. Gregor is shattered. "I'm in great difficulties, but I'll get out of them again," he pleads.  "Don't make things any worse for me than they are."

Only Gregor's beloved sister is compassionate, but even she soon grows impatient with his chronic condition. Eventually Gregor dies, much to the relief of his family. His dried-up cockroach body is tossed unceremoniously into the trash by a
malicious old cleaning woman who had enjoyed tormenting Gregor by poking at him with a stick.

I'm nuts, at least according to columnists Leah McLaren of the Globe & Mail, and Sandra Porteous and Nancy Radcliffe of the Halifax Daily News. I am a long-term sufferer of the controversial affliction, Multiple Chemical Sensitivity (MCS), which all three of these ladies have recently declared to be an imaginary illness. I wish!

Ms. Radcliffe's two recent columns purporting to "debunk" Environmental Illness, puts me in mind of Kafka's cleaning woman. Nancy seems to take perverse delight in taunting and ridiculing people who struggle with an affliction that would be bad enough for its symptoms alone, let alone having to fend off derisive attacks from skeptical ignorami -- lay and professional.

Ms. Radcliffe declaims that Multiple Chemical Sensitivity (MCS) is a "psychosomatic condition," based on the fulminations of chemical industry advocate Michael Fumento, and a couple of obscure U.S. researchers. She might also have included allergist Dr. Arthur Leznoff of University of Toronto, whose sub-specialty is touting a bizarre theory that MCS symptoms are induced by "panic attacks" and "hyperventilation" when the subject encounters a chemical odour. I've read Dr. Leznoff's published "research." It's a hoot -- at least to anyone who lives with MCS.

One "expert" cited by Ms. Radcliffe asserts that most MCS sufferers are "middle-class white women, financially able to exit the environment that's making them sick" -- another sweeping generalization typical of MCS-deniers.

I've battled MCS for nearly 30 years, since I was a young white male. I'm now a middle-aged white male, and largely because of this illness, my income has hovered around or sometimes well below the poverty line for the past fifteen years.

The Globe's Ms. McLaren, who interviewed me for, and quoted me (somewhat out of context) in her April 29 piece entitled "Halifax Hysteria," hews to the "it's all in their heads" line, pulled the sophomoric stunt during her Halifax visit of dousing herself in a potpourri of perfumes and plunking herself down in a waiting room at the scent-free Grace Health Centre. She got (politely) kicked out.

Obviously, the fact that 10 percent of adults and five percent of children have asthma, which can be life-threatening and has been proven to be aggravated by
proprietary scents, cuts no ice with Ms. McLaren, who apparently occupies the same mental space as schoolkids who deliberately sprayed their chemically-sensitive teachers' desks with perfume in at least two cases I know of. Then there is the 17 percent of the population that suffers from migraines, with perfumes also a proven trigger. And we haven't even touched the MCS issue yet.

In her May 2 Daily News column, subtly titled "Stop The Nuttiness," Ms. Porteous equates MCS reactions to the pollen and dust allergies she personally suffers from,
declaring stoicly: "I do not call in sick to work, I do not hide in my room and I do not stop living."

Well Ms. Porteous, I happen to suffer from both pollen allergies and MCS, and your comparison is analogous to suggesting that a head cold and pneumonia are roughly the same thing. Right now I've been in the throes of a pollen allergy attack for several days. My sinuses stream; my nose is stuffed and runny, and unlike you, I'm unable to take allergy medication, because that can cause other problems.

However, the reactions I get to chemicals are something entirely different. The principal symptom, for me, is pain and inflammation. I can also get headaches so severe that I vomit, have diarrhea, and become incapacitated. I break out in hives and sometimes open sores. I have a photograph of my forearms swollen up like Popeye's -- the fingers of one hand so bloated that they would not bend.

I'm not a pain wimp. I live with it literally every day, pretty much all over my body. When I visit the dentist, I forego anaesthetic, and I assure you that the dentist's
drill hitting the odd nerve is small beer in the pain department compared with what I've experienced from reactions to chemicals. While tooth drilling pain subsides
quickly, the pain from chemical reactions can last for days -- even weeks.

However, while I am obliged to "hide in my room" as Ms. Porteous puts it, some of the time, in self-defense against the sort of stuff I just described, I have not "stopped
living." I am a full-time freelance journalist, and a news editor/writer for a major computer news Website in New York (I cybercommute). I produce 30 news stories plus eight feature-length columns per week for a variety of publications, plus several monthly gigs, and incidental assignments like magazine articles. Since I took the
news-editing job 16 months ago, I have not missed a day or a deadline, but some days I've met those deadlines with one eye closed and typing one handed while the other held my splitting head, or while so dizzy that I felt like I might fall off my chair.

My first MCS symptoms developedwhile working at a TV station in the early '70s. I began reacting to the chlorofluorocarbon solvents used to clean electronic equipment. Over the next fifteen years, I experienced a sort of gradual falling-domino progression, where more and more chemical substances began causing problems. One day I would be fine; the next a few minutes exposure would make me quite ill.

During this time I pursued livelihoods and hobbies that routinely exposed me to environmental chemicals -- around cars, boats, photographic darkrooms, and wood finishing.  By the mid-'80s, I was obliged to wind down and liquidate two businesses I owned and operated -- no longer able to tolerate necessary chemical exposures.

The dominos continued to fall, and by 1989, I was so sensitive to common environmental chemicals that any semblance of a normal lifestyle became impossible. Exposure to automobile exhaust, scented personal care products,
incidental encounters with fresh paint or cleaning chemicals, even in very small doses, would result in four or five days of severe pain -- sometimes so bad that moving any muscle was agonizing. I would break out in hives and open, weeping sores; I have a photograph of my forearms swollen up like Popeye's. For a while my knees and ankles were so painful that I could barely walk downstairs.

I have to wear a gas mask in the car, not only because of exhaust fumes, but also because I react to plastics in the upholstery. Ditto for virtually all homes, stores, malls, offices, and so on.

The laptop computer I'm typing on now is inside a glass case with an extraction fan venting fumes outside. If I try to use it normally, within ten minutes I am in serious pain.  I can't smell anything, but I react to some chemical vapor it emits. This does not happen with my older laptop, which I tolerate fine.

Nancy Radcliffe would probably try to tell me that this is "all in my head" too, and frankly, I have spent sleepless nights wondering myself whether some psychological factor might be in play. However, I have been blindsided too many
times by reactions to things I couldn't smell, to give credence to the notion that my symptoms are being caused by some sort of anticipation or anxiety attack.

I don't pretend to know exactly what physiological mechanism is at work here. Blood work sent to the U.S. by the Environmental Health Centre indicated that I have
significant red blood cell damage, and that certain mineral nutrient levels were off the bottom of the scale, despite a normally adequate intake. My immune system seems seriously dysfunctional, and I have been struggling with a chronic
systemic yeast/fungal infection in my sinuses and elsewhere for five years.

To my shame, I used to say some of the same things Nancy, Leah, and Sandra do. Even after I was experiencing MCS reactions myself, I was in deep denial. I really did not want to believe this was happening to me, and consequently I continued to push the tolerance envelope farther and longer than I should have. I have fought this disease hard every step of the way.

Our culture does not cope gracefully with chronic illness, especially if it demands long-term inconvenience or behavioral change in others. Most people are quite willing to visit your bedside during an acute illness, with sincere good wishes for a speedy recovery. It's when you can't manage to either get better or die with decent haste that empathy falters. Death before one's time is romantic; lingering in poor health for years as a graphic reminder of everyone's morbid fears is bad form.

The government and the medical establishment have been banefully slow to respond with research initiatives addressing chemical sensitivities, and the chemical
companies that fund much medical research have a vested interest in promoting the belief that MCS is psychiatric in nature rather than a response to poisoning by their
products. A 1991 Chemical Manufacturer's Association briefing paper stated that "The primary impact on society would be the huge cost associated with legitimization of environmental illness."

Denial is the operative word. Nobody wants to face the implications of it being "true" that our comfortable, affluent, convenient way of life is making people sick. They don't want to give up "living better through chemistry." The very suggestion that we might have to scares the living daylights out of people. It makes them feel threatened and angry, and  reflexively resent the messenger of this dreadful news -- the environmentally ill person.

Much better to drive the loathsome cockroach back behind closed doors and wait for him to expire quietly and conveniently out of sight and mind.