So given all this (and I suggest reading far far more about the dismal state of where we really are environmentally in Stanford biology professor Paul Ehrlich's excellent new book, The Betrayal of Science and Reason), why should it be any surprise that human beings, with the most complex endocrinological, neurological, and immununologic systems on the planet, are similarly affected? And why shouldn't there be a wide range of individual variation and susceptibility to petrochemical pathogens? I always tell folks that it's not as if the stuff I react to is good for anyone; I simply react to it at lower doses than they.
PROOF. I consider myself a pretty good double-blind EI/MCS case-study: I cannot tell recount the number of times I have walked into someone's house, and within minutes (sometimes it takes as long as 30 of them) I'll ask, "Are there new electronics in here?" And the host will look at me as if I were an Old Testament halfmad been too long in the desert bringer of bummer bad news, and say, "Why, yes, I did just buy that answering machine yesterday. Why yes, we did purchase a new VCR last week. How can you tell?" Because I am beginning to feel like hell in that horrid way I have come to recognize and there is that Bad Taste in my mouth, and either it or I are going to have to leave now. And no, there were no empty Compaq boxes nor any giveaway smell to act as cues. I simply feel it.
Just to focus on one of my immuno-supressed symptoms, I have, as one dentist termed it, the mouth of a chemotherapy patient. It's not been unusual for me to rack up 1015 cavities between four-month visitsand I floss. And I won't even get into how dental anesthesia puts me on my hands and knees on the floor with dry heaves. I would to curious to know when Wolk started classifying dental caries as a psychosomatic symptom.
What I have found in the last few years since I have been forced to be more out about my EI/MCS is the number of people I run into who say, "Yeah, I can't tolerate being in new cars either" or "I've stopped going to the symphony because all the perfume makes me sick" or "My sister/sister-in-law/fiancé also seems bothered by new carpets" etcetera etcetera ad infinitum ad nauseum.
I don't think we are all victims of mass hysteria or hypnosis.
And let's talk further about a kind of objective data. Any of my intimates who are around me for any length of time come to be able to tell when I have had a bad exposure: my visage becomes puffy and sallow, deep circles under my eyes, I look 10 years older than my present-day 42 years, and simply ill. Anyone on the street to look at me would say, "That woman is sick. I don't know if it's cancer or hepatitis or AIDS, but something is very wrong." And since I have been getting better through my move to Santa Cruz, there are weeks when there is color in my cheeks and the pallor is gone and I routinely get mistaken for 30-something. I would have to have the mind-body powers of a Yogic adept to control such externally visible markers of where I am in an imaginary illness' cycle purely through neurotic whim.
DOCS. And then there's my practitioners: my internist of 20 years (undergraduate, Amherst; medical school, Georgetown) who practices thoughtful but very traditional medicine. He doesn't have any doubt about the existence of EI/MCS, counts a coupla dozen of patients in his practice as sufferers from itand knows he can do little to helpno quack making money off a credulous female. He has, however, recommended me to reputable MDs into alternative healing modalities such as homeopathy, for this is just the sort of ailment Western medicine can do nothing for, so that alternative means have to be tried. He has seen me walk in a couple different times over the years at my stripped sick weight of 15 pounds under my Eastern European peasant genotypic set-point, shaking with the Parkinsons'-like symptoms I get when I am acutely ill. He doesn't doubt the very-present symptoms I present. He has been practicing medicine long enough to know that people have all kinds of intolerances and reactions and susceptibilities; and he has no problem accepting mine. Same same with trusting that I know the difference between when I am stressed out (the six-month period when I had minor surgery, my father died, my cat died, my car blew up, I was involved in a vicious menage-a-trois, my boss was trying to fire me before I departed for grad school and the uncertainty of freelancingbut my EI wasn't acting up) and when I am sick (as when I moved to Charleston, SC with my POSSLQ of the time: downwind from a paper mill, downriver from a plastics factory, and my fellah then bought a new car. Within a month I was incapicitated and housebound). Most folks can similarly tell the difference between having the flu, as opposed to having the jumpy belly/nervous stomach attendant on a bad job.
My gynecologist (UC-Berkeley undergrad; Harvard for medical school), who also doesn't treat EI, reports that there are other women like me in is caseload. There are a few, he's told me, that vaguely whine about the environment because yes they are kinda hypochondriacal or neuresthenic; but most, he feels, are like me. Genuinely beset by an annoying enraging depressing chronic ailment that only each sufferer will be able to know how to manage. He did, however, try to help me ameliorate some ongoing female complaints that are the result of being immunosupressed; and when I went in for this year's check up, he could clearly see how my health had improved, in his area of expertise, from my year in Santa Cruz.
Any physician is familiar with unpredictable drug, food, and inhalant intolerances; with problems with latex or gasoline fumes or cosmetics. Why shouldn't there be people who simply have more of these reactions, and more acutely? Whose tolerance for a total antigen load is lower than average?
FRAUDULENCE. The issue of quacks is in itself interesting: I am sure there are some, just as I am sure there are folks vaguely generally overall phobic who think they might have EI. But these people aside, the issue of experimental treatments needs to be discussed. Last time I looked, no one had any reliable means for healing any immune-system disorder (think diabetes, lupus, MS, cancer, AIDS) so all anyone can do is to try at different things and see what works. Which is how progress is made in medicine, science, anything. That so many of the patients who showed at Rea's Houston clinic were diagnosed with EI may have more to do with self-selection than anything else: you aren't led there until you have exhausted all other more traditional remedies. If whatever ailed these people could be fixed with tetracycline or Valium wouldn't it have been tried? Or that if they weren't desperate to not be considered crazy because they have precisely the kind of systemic, single-silver-bullet-won-cure-it, no-single-cause-with-no-single-effect (even oncologists consider cancer to multifactoral these days) malady that Western medicince barely knows how to think about, much less cure, that they would have showed up there?
I personally don't know any of Wolk's wannabe EI victims: the EI patients I know desperately want their lives and work and livelihoods and social lives and mobility back. There is, for example, a friend of mine from high school, whose lifelong dream was to be a geologist. Which she became, and as a groundwater hydrologist, was one of the first people sent to inspect the wells contaminated by IBM's manufacture of semiconductors in Silicon Valley. Within the year, she had to give up her job, sell her wonderful California bungalow in Oakland, and move to the Mother Lode country of the Sierra foothills. This was not her idea of a hobby, of a good time. Then there's the favorite chemistry TA of another childhood friend. She ended up at Cal Tech for graduate school, where this same smart good guy had become a young professor with a promising career. He too was stricken by EI, had to give up his career as an academic, and move to rural Idaho, nothing that had been on his life's gameplan, no twisted kicks there. And my friend, herself later tenured as a physical chemistry professor by the time she was 30a logical positivist of the first rankhas no trouble believing in her former colleague's or my disability. She herself notices increasing reactivities with ageand in part gave up being a lab bench chemist because she did not like how prolonged exposures left her feeling.
And there's me, about whom I will only say, do you think I wanted to be a sickly frail involuntary vegan for three years? Not be able to drive? Or buy new shoes, because I react/absorb through the skin to the chemicals involved in tanning leather? And I am a Jewish American Princess, and I love shoes! It's grim and mundane, looking at my ever dwindling stack of shoes that were broken in before I got sick, and wondering how long I can keep patching them. I gingerly break in new shoes for only one half an hour at a time, on days when I am feeling OK and don't have to be anywhere but home.
PSYCHE. To cite only one example where the question has to be raised: if I were putting on an act and this were all in my head and it's totally a neurotic fantasy, what is the payoff? Or, more precisely, what kind of a pervert/invert self-thwarting wacko would I have to be? Back in my housebound days of a few years ago, the brother of my roommate was to star in a new George Coates performance piece, and my roommate and I were to attend the opening night. I thought it would be a blast to know someone in the cast and go to the party afterwards and I was really looking forward to this outing, not the least of which was because it was accessible by the mass transit of electric trolleys, and not solely through sitting in cars, whose plastics and heaters were making me so sick. So I arrivedand woe is me, between the sets and carpet that had been freshly painted and the new electronics (new plastic sets me off very badly), I began to react within minutes of walking within the door; I had to excuse myself before the curtain went up, stumble onto the J Church Muni to take me home, crawl out of my clothes and take a long showerand lie on the couch and tremble and hyperventilate, furious at myself for being so feeble and such a spazz and so unable to participate in the life of the world, and the things that could give me pleasure. I felt impotent rage at my wacked-out immune system, and at the world that so constructs itself around compounds that aren't good for any living things.
Which brings me to another point: in my playgroup, folks are not ashamed to take Prozac or other psychoactive drugs; seek out therapy when they feel they need it; talk to their friends about what's troubling their spirits. I don't know what universe Wolk walked in from where mental illness carries a stigma such that folks will feign an illness mainstream medicine scoffs at in order to get sympathy? attention? I don't really know.
Yet the accusation is often made that EI/MCS sufferers are much more likely to have been in therapy. This to me is support, not damage, for the existence of EI/MCS. Suppose you are someone who, through nature or nurture, is more vulnerable to the environment than most: why wouldn't a heightened sensitivity to the same things that say, are causing soaring rates of emphysema and lowered sperm counts worldwide be the response of certain susceptible individuals? Folks who have gone through some Bad Kharma very often windup with strange allergies, eczema that won't heal, chronic illness of various kinds. The lifelong struggles with asthma suffered by the poet Elizabeth Bishop (dad dead before she died, mom soon carted off to the insane asylum) is just the most obvious example of the organism traumatized at one leveland reacting at another.
It's a Cartesian error of the most reactionary kind to set up these false dichotomies between mind and body: they are two aspects of the same thing and indeed, the nervous system controls the immune system. And yes, most pesticides in use are neurotoxic. One doctor I saw started laughing when I detailed some of my medical history because to him it seemed such a classic setup for EI/MCS: strong cancer history on my mother's side, strong traditional allergy (hay fever, hives) history on both sides of my family, strong history of brains that don't regulate themselves well (epilepsy, mood disorders) on my father's side. And then, I was shot in the head with a .45 when I was 14and no, I don't gibber and drool, and no, that's not when my EI/MCS startedbut yes, the subtle neurologic damage I suffered it was one more contributory factor to the genetic predisposition I already had (as a kid growing up in L.A., I was violently allergic to smoglungs hurting, I spent my summers lying around in torpor + lassitude; nasty hives and breathing problems from conventional soaps and shampoos and, well, you get the picture.)
SAFE. I feel about the movie Safe about what I have heard some black folks say about Mississippi Burning: sorta glad there's been a movie on the topic, but horrified at how it distorts thing (in that case, it was not noble white FBI agents who brought about the Civil Rights movements). In the case of Safe, EI/MCS is a tidy but disingenuous metaphor for suburban anomie and having no distinct sense of self. Amusing, but dangerously off message. And the movie also perpetuates the horrid backward-looking meme of women as histrionic pseudo-sickos who will do anything for attention, inflicting von Munchausen syndrome on themselves out of boredom. Which to me is the subtext of Wolk's articlebut the ways in which mostly men try to say that this disease doesn't existbecause mostly women get itis the subject for another day.
ENVOI. Finally, I have to inquire why Wolk has such a stake in denying the existence of EI. There is always the tragedy of what I call the privacy of pain: the lack of empathic imagination for what others think and feel and experience different from one's own direct experience that is the deep cause of so many human sorrows. Hey Doug, if you were red/green colorblind, would you deny the existence of a difference between magenta and chartreuse? </end>