Supergirls

Today's post features some special invited guest authors and might be titled "Everything I ever needed to know I learned in kindergarten and was able to fully articulate by the second grade." Jessica and Rachel are self-chosen pen names for a pair of twins it has been my great good fortune to know since their birth, which was not so very long ago. They and their exceedingly generous parents took me in for several weeks last spring when I was at my wit's end with my Multiple Chemical Sensitivities and my own home seemed to be making me sick. I hope you find their sweetness and fresh perspectives as healing for whatever ails you as I have.

Who is the the Masked Avenger?
Rachel: The Masked Avenger is my friend. She has an illness that she's very sensitive to smells.
Jessica: The Masked Avenger is my friend actually. She is allergic to many things, like spices and more stuff.

Why did she come stay at your house?
Jessica: She came to stay at our house because her friend gave her a computer. She opened it and it smelled. She was allergic to the smell.
Rachel: She came to our house because she was visiting us.

Where in your house did she stay?
Rachel: She slept on the cement floor because the rug in the guest bed had a smell she was allergic to.
Jessica: She was also in the backyard a lot because she needed fresh air so that she wouldn't have to stay in the house too long because the house had new paint and she is allergic to new paint.

How was she feeling?
Jessica: She was feeling bad; that's why she came to our house. But we made her sort of feel better while she was at our house.
Rachel: She was feeling bad.

Did she wear anything strange? (I had on a charcoal face mask much of the time, but loving eyes...)
Rachel: No, she just wore jeans and a sweatshirt.
Jessica: No, she just wore regular clothes.

What do you understand about her sensitivities?
Jessica: She's sensitive about new things because new things smell because they are new.
Rachel: She's very sensitive to a lot of smells.

How did you have to change things when she came?
Rachel: We had to take all of our soaps out of our bathrooms.
Jessica: First let me tell you a story. One day we went to a store and there was an aisle and we were looking for soap and the Masked Avenger was with us. She said I can't go in that aisle; I'm allergic.

Were you ever sensitive to anything?
Jessica: I'm sensitive to Good Earth Tea. What happens when I drink Good Earth Tea is I have a rash all the way around my mouth.
Rachel: My sister is my twin and I'm allergic to that tea too.

How did your family help the Masked Avenger?
Rachel: We were at a friend's house and we brought the Masked Avenger some uncooked sweet peas and she said she felt better. (M.A.: It's true, certain tender sweet peas act almost as a magic potion.)
Jessica: We let her stay outside for a lot of the day and gave her good dinners and we just helped her.

What else do you remember about her visit?
Rachel: I was really happy to see her when she came.

What would you tell someone else who had a sick friend?
Rachel: I bet you're a really good friend and I bet that person really likes that you're helping her.
Jessica: Would you like me to help? If they said yes, I would just help the person.

Movie Teaser

Check out the trailer for a new documentary film called The Tomato Effect. It's showing at very, very select locales. I joked on this blog a few months back about seeing what activism could bring by watching the movie Silkwood, which is about a whistle-blower at a nuclear power plant who died mysteriously. (I thought it was well done, if disturbing. The image of Meryl Streep's terrified face in the scenes in which her character sets off the contamination alarms at the plant will stay with me for life.) Little did I know that those of us with Multiple Chemical Sensitivities (MCS) have our own mysteriously fallen champion. I can't vouch for the documentary now, but when it comes someplace within driving distance of me I'll let you know what I think.

Also, if you haven't seen Safe, with Julianne Moore playing a woman with MCS, I highly recommend it. I first saw it, with ill-considered bravado, on day four of my illness, when it happened to be showing in theaters after its original release. I experienced it then as a horror movie, but upon reflection think it's as good a disease movie as we, the afflicted, could possibly hope for.

P.S. Check out the links in the comments to this post for something way more interesting than what's above. Still, I would defend Safe from critics who think it doesn't make a social critique. I think it's widely misinterpreted and that it makes nothing but blistering social critique in every frame.

How the Avenger Got her Bionic Nose

In the ancient personal history of many superheroes is the story of how they acquired their remarkable powers. While I am something of a self-styled crusader against evil, in this regard I am no exception. I couldn't always smell perfume from a distance the length of a tall building or escape it as fast as a speeding bullet and I will tell you how I came by these talents.

I was thirty-six when I came down with Multiple Chemical Sensitivities (MCS) eleven years ago. I'd been in ill health already with bronchitis and unusual fatigue. I started noticing that I was bothered by things like scents in the cleaning supplies aisle at the grocery store. Imagine swimming in a vat of Pine Sol. It didn't smell "clean" or "fresh" anymore. It smelled poisonous.

When I told my doctor she looked at me sharply and said, "you know such things can be serious." I felt warned and somehow reprimanded, yet her only suggestion was that I drink a lot of water. A few weeks later results were back from tests she'd ordered and she announced that I had an Epstein-Barr viral infection, which I later learned, God help me, was a controversial diagnosis--for me, controversial diagnosis number one. She didn't suggest any treatment, other than rest, and, again, the water.

I went to the beach for a week and headed home feeling generally better. In my absence my roommate had decided to spray Raid Flea Killer on the rugs in our apartment, intending well by doing it while I was away. Given my reaction when I set foot through the door it might as well have been nerve gas. I spent the next days and weeks feeling as if I had some strange variant of Alzheimer's disease. I was having intense reactions to all kinds of things: my shampoo, cigarette smoke, perfume, dishwashing liquid, hand soap. They seemed to go straight to my brain, as if I was smoking something on which 13-year-olds try to get high.

Even when I wasn't feeling acutely poisoned by formerly innocuous odors I felt foggy and disoriented. I was losing my bearings, losing my keys, losing the words I wanted. In a related move, my roommate was losing her patience; she wanted the stove off and the door locked when I left the apartment. The short-term reactions--during which I really couldn't think straight--began lasting longer and longer. I became afraid I was incurring permanent brain damage.

After the flea killer episode I wasn't able to tolerate the air at my day job for a minute. One of my co-workers elicited general amusement with, "Yeah sure, we're all allergic to this place." In fact a number of people had made earlier complaints about the air quality in the high-rise. The windows weren't the opening kind and there had been constant remodeling as the company had grown. We had new computers, new carpeting, and new paint. We had new fabric-covered cubicles squeezed into the minimal amount of space that would hold them. Management had dismissed the concerns with a number. I seem to remember the figure 16, but not the units, something relating to fresh air intake, something that felt irrelevant to me as I was descending into dementia. I quit and applied for disability.

At home I had piled the insecticide-sprayed rugs and other items that failed a sniff test in the living room, provoking glares from my alarmed roommate who was now clearly finding my behavior bizarre in addition to insupportable. Once my bedroom had been stripped of immediately-offending contents I blindly thought of it as a safe place. I wore a carbon-coated dust mask on the street--despite the stares--to protect myself from car exhaust and thought I'd done all I could. Then in dawned on me that the black mold that grew readily on the walls of our dank apartment was a health hazard. I committed myself to a new rental sight unseen and, before moving, discarded my mattress and upholstered living room furniture. With grief I parted with my books, all of which smelled of mold.

The first real check on my free fall came when I took another trip out of town. I stayed inland this time, at a rustic cabin that served as a way station in my move. Upon arrival the first day I felt a visceral, almost mystical, connection to the trees--big oaks and redwoods--which I had never felt before and haven't since. Lest anyone get misty-eyed, let me say I'm now allergic to any number of trees. That day, though, when I stepped out of the car, I was breathing, drinking, absorbing the trees. I felt distinctly better every subsequent day of the week I was away. There was less around to provoke reactions, my baseline state improved, and the reactions I did have were less devastating. I wasn't out of the nightmare, I still was avoiding much of the world, but I had tasted relief.

On my way back to the city I visited a specialist referred by my doctor, an "environmental medicine" specialist--controversial doctor number one for me. He officially gave me controversial diagnosis number two, Multiple Chemical Sensitivity (MCS), then commonly known as Environmental Illness (EI), not that this was news to me at this point in the game. At my impatiently-awaited first visit he talked to me in a friendly way, at a leisurely pace, about measures for curtailing mold growth in the home. Among other things he suggested that potted plants and wicker baskets might no longer be good decorating ideas for me.

I couldn't understand his nonchalance. I tried futilely to impress upon him that I was in crisis and in need of immediate intervention. Perhaps he thought it was reassuring to act unconcerned, but to someone trying to put out a fire he seemed hopelessly out of touch with my reality. He sold me a sackful of expensive nutritional supplements, tablets of blue-green algae and the like, and said he thought I would get better. I stumbled out of his office, looped from something I'd inhaled while inside, and not believing that was it, all for which I'd been waiting. I thought another hour with the trees would have been a smarter bet.

When I reflect on that initial crisis what strikes me most about it was how alone I felt, and how abandoned by my society. I did get better. I got much better for long periods of time (although not to any degree approaching normal), and I am grateful for the help I got in my recovery. I did have a few friends who did what they could and came through for me in crucial ways--leaving off the hair gel, understanding and believing me, putting their needs aside for awhile. I had a chemically-sensitive acquaintance who sold me his old air filter, told me where to buy unscented shampoo, and shared other survival tips. I wouldn't have given up his counsel before that of any M.D. I saw. In the longer term I had an acupuncturist who seemed to understand something important about what was going on, even if she talked about it in terms like "chi" and "wind" that meant little to me, and I thought she was able to affect some change.

Despite all this, nine tenths of what had to be done I did myself, sick as I was, and felt no choice about it. I got better largely through making lifestyle changes far more drastic than giving up wicker. I remember countless trips to futon and bedding stores for sniff tests and custom orders. I carted a series of mattresses in and out of my new place until trial and error yielded one I could tolerate. I remember sitting on the floor and crying over an all-organic-cotton futon that had required a doctor's prescription to be custom-made without flame retardant. It stayed in my bedroom only long enough for me to shed and dry my tears. It turned out that certain cotton fibers used in batting, cotton linters, were a common allergen.

Getting better involved some luck, such as my new place chancing to be environmentally hospitable, and also a certain ruthlessness of which I'm not entirely proud. A man I was seeing at the time didn't rise to the occasion, or even seem to grasp that there was an occasion that called for rising. I witnessed his response with icy clarity and eliminated him from my life with as little ado as I could arrange.

Doctors of Medicine, with few exceptions, only proved helpful because they were in a position of power. They, and only they, could corroborate my story for government agencies. Even if they believed me they often resented this role--a role that it seemed to me they as a group had secured for themselves and jealously guarded. While they may have felt that recording my misery for third parties was beneath them, they ate up a lot of my financial resources with little other result. My health insurance did not cover most of my medical expenses (certainly not controversial treatments one through five) and I couldn't afford the big name doctors.

About a year ago I relived a version of my original collapse. Life since then has impressed upon me how little has changed in the spheres of medicine, law, and government for those with MCS, particularly if a sufferer doesn't have a lot of money. I still feel abandoned, if less stunned by finding myself so. There are still no accepted ways to diagnose or treat the disease, nor is there even acceptance that it exists. There are no hospital environmental units in this country, no accessible hospice beds. There are precisely eleven affordable housing units built for MCS access (Ecology House) and the waiting list for them is a mile long.

I know my outrage and sense of entitlement to something better reflect the relative privilege in which I grew up. There are many people abandoned by our society in worse shape who complain less of their fate. Still, I claim the right to outrage on my behalf as well as theirs. No one should have to go through what was preventable of my ordeal, and much, arguably all, of it was.

Big News on Biomarkers?

Tune in here folks for news and views on Multiple Chemical Sensitivity (MCS) that are secular, civilian, and, I'm afraid, stale. This week I learned from an organization called Share, Care and Prayer that $7.2 million spent by the Department of Defense for study of Gulf War Syndrome has netted evidence of specific biochemical differences MCS patients have from the general population. Researchers at Wright State University Medical School in Dayton, Ohio reported differences involving levels of certain enzymes which detoxify harmful substances in the body. Across the page from a poem about Jesus I read:

"We were able to clearly discriminate between normal and sensitive groups," said Gerald Alter, who did much of the enzyme research. Just by analyzing blood samples, colleague Steven Berberich said, he could tell a sensitive patient from someone else.

S.C. & P. had reprinted an article by Kevin Lamb in the Dayton Daily News from last October. I was excited, but also baffled. If the article was accurate it reported big news in my world, but I felt as if I was learning it from a line of first graders playing a game of telephone. Why was this seemingly marvelous breakthrough being reported only in a local Ohio paper? Why was it reaching me only now despite my every effort to keep my ear to the ground? Was it really such big news?

As I write I am in hot pursuit of the answers to these and other questions. The most pressing to me is the question of whether both researchers cited above are quoted correctly, because they are saying quite different things. Discriminating between groups of people isn't such a breathtaking accomplishment (although many have failed in the case of MCS). You can distinguish a group of Sumo wrestlers from a group of randomly chosen Japanese men by weighing them. However, knowing the weight of any given Japanese man won't allow you to determine if he is or is not a Sumo wrestler. It helps you determine the likelihood one way or the other, but it proves nothing. Moreover, the differences between the MCS patient group and the normal group might be far less dramatic than my example--as if, say, there were only a few pounds difference between the average wrestler and the average citizen.

It would make my day to know a blood sample could be used to prove that a particular person had MCS, even to 90% certainty, even if that person wasn't me, and even if the development of a clinically available diagnostic test was years away. Just the knowledge would be a comfort to me after I get told by some lawyer that if I want Social Security benefits and I can't come up with proof of my MCS I may have to "accept" a psychiatric diagnosis. However, if MCS people fall within a "normal range" on some measure 90% of the time my enthusiasm is dampened. Either way, of course, I'm endlessly grateful to researchers who take the condition seriously enough to study it.

When I called, the official spokespeople at Wright State University were friendly and generous with their time, but they were backing away from the more exciting claims and not tipping their cards beyond their already published press release. They said there was nothing scientific to read yet. The results hadn't been replicated, hadn't been published, or perhaps hadn't even been submitted for publication. A progress report had been submitted to the D.O.D. but might be secret from the public. They had only notified the local paper because the surrounding community had a lot of sick vets and was following the fate of the $7.2 million that had come into its midst. Both of the people I reached spoke earnestly of raising false hopes as the worst sin they could commit.

The air of mystery only whets my appetite for the hard facts. You'll see them here as soon as I get them, probably last.

The Psychiatrist

Spitting mad. Fuming mad. Rumpelstiltskin mad. Yes, I am one angry girl. I met yesterday with a psychiatrist at my HMO, hoping it might bolster my disability claim. I'm not saying this man was unattractive, but if I found myself alone on a desert island with him I would view him as food. Yes, cannibalistically mad. But we weren't alone on a desert island; we were in a situation out of an Edith Wharton novel, one in which deviations from social protocol were fraught with devastating consequences. Various interconnected bureaucracies which controlled my fate were to be moved by what he wrote down after we spoke. So I strove for absolute decorum. For deference. For compliance. Judge me if you like, but haven't you felt this way toward a boss at some time in your life?

There was irony in the means by which the psychiatrist was provoking my fury. In an obvious, ham-handed way, he was painting a picture of me as a timid person who was projecting my fears onto a benign environment, believing it to be filled with imagined chemical threats. As I was struggling to conceal my rage he was saying, with exaggerated sympathy, " you must experience the world as a very frightening place." I assume he is of the school positing that all patients who believe they have Multiple Chemical Sensitivities are operating under a delusion. I could have told him that I did have a terrible fear of letting slip snide remarks that would provoke him to retaliate against me in his chart notes, but I mumbled something vague that could be taken as an assent.

Before I go on, I should say I went into this appointment with quite specific goals for the psychiatrist's larger decisions, all of which were met. He gave me the diagnosis I wanted, saying I had a low-grade depression, which is true enough. He didn't try to prescribe medication, and, mercifully, he didn't schedule a return appointment. As an unexpected bonus, he let me know of a meditation class I might actually be interested in taking. So, I must have been doing something right, but I was aware that I was leaking hostility at various times.

"Do you have friends?" he asked out of the blue at one point.

"Yes, I have friends," I replied evenly. The tone of my voice said, "You inquire into people's social support a dozen times a day and this is the tactful phrasing you've perfected? Why not ask if I have any friends at all?"

After discussing the meditation class, he asked, "So, how do you feel about what I think?"

"I don't know what you think," I shot back brightly. Between the lines any astute observer would have heard, "Don't imagine I can't guess well enough what you think, you transparent fool."

He handed me a brochure listing the "behavioral medicine" classes offered by the HMO and asked if I'd seen it before. I said, "I can't tell. It looks so generic." I meant, but quickly wished to God I hadn't managed to communicate, "You are indistinguishable from every corporate clone I've ever met."

Yeah, I screwed up, but I wasn't the only one who lapsed a little from the social norm. As I was leaving I commented on a potted plant with leaves that looked like parsley, but that turned out to be something of which I'd never heard. I asked if it was also an edible plant. "We don't eat the aralia, because then it won't grow, " he said, as if issuing a warning instruction, but, strangely, in baby talk. Did he fear his shrinking violet of a patient was going to savagely destroy a living being right there in his office? Only in fantasy, sir (and not the pretty herb). Per the doctor's orders, we don't need to react just because we are aware of a noxious stimulus.

Resting without Laurels

Recently my chief coping strategy for psychically surviving the rigors of an acute phase of Multiple Chemical Sensitivities has been an aggressive one, but this last week a reminder of an entirely different approach arrived in my mailbox. Lately, I have been engaged in bulldogging minor bureaucrats at social service agencies, attempting to read the scientific literature--all of it--on MCS, and battling my HMO for recognition and treatment of the illness. Taking the struggle further, I have joined groups, fired off letters to the editor, started a blog, and manned an information booth in my respirator. My fantasies about my future effectiveness as a crusader against the chemical industry reached such proportions that I put the movie Silkwood (about a whistle-blower at a nuclear power plant who died mysteriously) on my Netflix list so that I could see what I might be up against. Granted, some of this activity has been necessary to my physical and financial well-being. My effort has made me feel less powerless, less isolated, and less irrelevant to my society, but some of it has been on the compulsive side and harmful to my health.

I don't want to reproach myself; it's not always possible to keep one's footing in an earthquake. Still, I was glad to be able to latch onto a newsletter article that seemed to be steering me toward a change of tactics. It invited me to just quietly experience the truth of my situation and acknowledge myself simply for bearing it. In it, Malka Weitman, a local psychotherapist, talks about our culture's standard response to those sick and in pain and how poorly it meets their real needs of other people. She indicts the professionals--handily represented in caricature by Dr. Phil--who institutionalize this response and outlines a course of action based on an essentially opposite set of assumptions. As I read, I realized how much I had put an internal version of Dr. Phil in charge.

Weitman observes that most people are made uncomfortable witnessing pain and vulnerability. This is particularly true because when other people succumb to illness and disability our illusions about our own security in our bodies is threatened. The response often becomes a negative judgment about the patient unable to overcome illness and injury or to do so on a given time table. She writes: "...the tendency to assume people are dwelling on their physical limitations, and overidentifying with their pain instead of focusing on the positives in life, is a way of making ourselves--not necessarily them--more comfortable."

Weitman labels Dr. Phil's approach as the "get over it, get on with it" attitude. I feel exposed to it on nearly a daily basis. An old acquaintance learns I've relapsed and asks cheerily what else is going on. Friends pressure me into activities that make me worse, thinking my problems stem from lying around the house. Any improvement is seized upon and any downturn ignored. Doctors warn against letting my condition interfere with a "normal life," seemingly in the dark about the definition of disability. At times I've bitterly decided that inquiries into my health were most safely answered with the word "better," delivered in a considered, upbeat manner. (It's true in some sense, unless I'm worse than I've ever been.)

Weitman suggests that those who are sick and in pain need time and empathy in coping with their experience, which is of a traumatic nature. She points out that judgment and denial exacerbate pain. I know I have an urge to try to force someone to "get it" when I meet with encouragement to move on or focus elsewhere. This can be a vicious cycle in which the other person then renews the effort to get me off the griping and onto something more "productive." Real empathy, on the other hand, can move me quickly to tears and even make me want to change the subject.

Now it feels as if I should know all this, being a therapist myself, but there was another, more novel, angle in Weitman's piece. She speaks movingly of the dignity and value of enduring suffering as a part of life. She offers the radical perspective that illness and pain have inherently equal worth in comparison with other life experiences. They are not something to be ignored, or conquered and then forgotten as quickly as possible. You are not stuck, or dwelling on the negative, if you take time to acknowledge their enormity and wrestle with finding meaning in them. Awful experience is something to be lived as much as anything else, and, hopefully, to be lived well.

As I'm relating it, her points seem open to misinterpretation. I'm sure she is not giving a trite lesson about collecting a take-home message for future use (you know, as long as you are going through hell). I have a colleague who is always right on the job of interpreting the universe's cryptic educational directives in any misfortune. If your car were stolen she would be sure mysterious forces were leading you to spend more time at home. Nine times in ten sickness can be boiled down to a pointed moral lesson about self-care. But Weitman isn't boiling things down; she's opening them up in all their richness and complexity.

Similarly, it's clear she's not holding up the model disabled person as an example to us all. As I read I felt no pressure to be stoic, grateful, or self-sufficient. On the contrary, I felt that I was doing something of value just in being present and alive to the reality of life with MCS. Now I can't claim that I've ever erred in the direction of stoicism, but it seems that on some level I have been measuring my worth in terms of productivity, determined to behave as if I were healthy. Since I read Weitman's respectful and compassionate words I've been softer with myself, taking time to meditate and let fearful feelings arise and pass. I've been more aware of underlying shame and guilt about being sick, unemployed, and dependent, and I've tried to embrace the vision that finds dignity in such a life.

Malka Weitman's article, entitled Working with Physical Pain and Illness in Psychotherapy, was originally published in the January/February 2006 issue of The East Bay Therapist.

Two Safe Rooms in Chicago

Until yesterday I was not aware of a room in the United States--outside my apartment--in which I could stay with any reasonable confidence that I wouldn't be made sick by things in the air. I think there is an environmental medical unit in Canada used for patients with Multiple Chemical Sensitivities, and maybe one in Japan. I suspect that some rare books and museum pieces in my country enjoy air quality of which I can only dream. I believe that inventors have created technology in nearby Silicone Valley that would dramatically improve my health; but it is squandered on insensible computer chips, which are not grateful, the little louses, for clean rooms with ten times better ventilation than I've ever known. Two days ago I thought that unless I renewed my passport my genuinely low-risk habitation alternatives were limited to my bedroom, my kitchen, and my bathroom. I can hardly talk about the fears raised by the possibility of hospitalization.

So, who do you think I discovered is a U.S. pioneer in healthy human environments? It's not anybody funded by the National Institutes of Health. (Sorry, but no surprise there.) It's Hilton Hotels. Yes, the revolutionary move has come from an industry generally hell bent on saturating their possessions and air space with chemical deodorizers. The managers have retro-fitted two rooms at the O'Hare Airport Hilton to cater to patrons with allergies and the like. (Press Release) There, in what has to be one of the world's worst concentrations of jet exhaust, they have boldly braved liability nightmares and announced that travelers can now book superior air quality with assurance. May Zeus, Thor, and all the gods of sky, wind, and air rain down blessings upon them.

I can't speak from first-hand knowledge to vouch for the folks at Hilton living up to their promises, but they sound as if they are in earnest. They continuously monitor levels not only of carbon dioxide and carbon monoxide, but of volatile organic compounds (VOCs). They laid hardwood flooring. They clean with fragrance-free products and stock their bathrooms with them. With impressive attention to detail they even purchased wallpaper with perforations designed to prevent mold from growing under it.

My remaining doubts after reading the Hilton spec sheet focus on bedding, which can be the undoing of the most meticulous air quality scheme. With one king size bed the Hilton designers are facing not just one princess likely to detect a pea, but a steady stream of delicate royalty with their many and varied intolerances. Hilton has decided upon natural cotton bedding. Most people with Multiple Chemical Sensitivities will be glad to hear it. I personally once had an unpleasant lesson on the allergenic properties of a particular type of cotton fiber that is often used in batting, cotton linters. Also, I've heard cotton production is particularly pesticide intensive, and the bedding isn't described as organic. Still, the publicists at Hilton have convinced me that the hotel knows what it's doing.

I can't say the O'Hare Airport is an appealing vacation destination, particularly in January, and the price is a little beyond my reach at $249 per night for a single occupant. However, I'm excited. I can fantasize about a trip not ruined by anxiety about accommodations. Hopefully the idea will spread--maybe one day even to my local hospital.

To a Fellow MCS Sufferer

There you stand, with or without your protective face mask, explaining yourself. You are telling some man as nicely as you can that the way he smells makes you sick; or, you are letting some woman know as politely as possible that you are reacting violently to her perfume. Are you hoping this is going to go well? Do you imagine that this time the poor soul in front of you will pause and reflect on the implications of what you are telling him? Are you thinking she will consider what conclusions might be reached if she entertained the hypothesis that your perceptions are entirely accurate?

Perhaps he will turn to you as a source of information about the toxic effects of his fabric softener. Maybe she will be inspired to research the governmental regulation of perfume ingredients. (That's a short project after all.) He will become a radical environmentalist. She will develop a career as a consumer safety advocate. At your next encounter you will breathe in only his or her musky human odor and be irresistibly drawn into a passionate embrace.

As you know, back in reality, it is more likely that your fragranced friend will feel the need, perhaps unconsciously, to take a verbal shot at you, the proverbial bearer of bad news. People who think they've been told they stink may not connect all the dots right off the bat. I am sorry for the many word bullets you have had to dodge, in addition to the chemical assaults, being a victim of Multiple Chemical Sensitivities. However, you are a uniquely challenging messenger, carrying a message with unwelcome depths, and should expect to take some fire.

It's true there are an abundance of other messengers bringing similar ominous warning: dead fish washing up on beaches, kids sucking at inhalers, unlucky towns with far more than their share of cancer patients. Yet you are different. Unlike the doubly silent fish messengers, although they are eloquent in their way, you can talk. Further, it is harder for a healthy person, try as he may, to regard himself as being so vastly different from you as he regards himself as being from a fish. If I may digress, let me say that if you look at yourself through others' eyes I know you may feel at times like a talking fish. You may feel like a talking fish from another planet who is wearing a protective face mask. I am so very sorry and even if this illness has driven you completely crazy I still recognize your humanity. Anyway, my point was, fish present less of a challenge to the comfortable assumptions of your fellow humans than you do.

The asthmatic child tugs more at the human heart than fish, but still she is relatively voiceless and easy to ignore. Artificial fragrances may affect her breathing, but she's got her inhaler after all. (Thank God for modern chemistry.) She's also more likely to live in a poor neighborhood than an affluent one, contributing to the illusion that her message is not for those with means.

What about others affected by environmentally-induced or environmentally-exacerbated diseases? Often there isn't anything we are asked to do about them directly, in the immediate present. The cancer victim can account for himself without implying that an unaffected person could work on getting the local factory shut down before they meet again. The listener is not confronted with being part of the problem.

But there you stand with your MCS, declaring that you have been stricken ill by the collective hand of man, and that you would like the person in front of you to recognize it and take corrective action--action they might prefer not to take. You may not relish this role. If you are the type who really hates to be a bother you may ask only that she not take offense at your desire to keep a healthy distance. If such is your nature I hope you are not living quietly and invisibly in isolation. I hope you can band together with like-minded souls and form a fragrance-free, non-toxic haven. (I envision a sort of secular Amish community.)

However, if you have a greater sense of entitlement it also seems to me a noble path to continue as a thorn in the side of the general public--not that you necessarily have a choice. Your participation in society is arguably more valuable than people's right to exude toxic chemicals, and, certainly, in my book, to profit from their sale. You have an urgent stake in reordering the consumer society's priorities. So, truly, does that person smelling sweetly of benzyl acetate. You can consider yourself chosen to let her know. Plant a little seed as you are ducking for cover.

The Neuropsychological Evaluation

Being referred by a doctor for a neuropsychological evaluation can't ever be a happy occasion. In my case there were layers of confusing unpleasantness. First of all, having my IQ pinned down was something I'd escaped for 46 years. My family, that supremely formative influence, was not in accord with the late Duchess of Windsor when she voiced an opinion on the impossibility of being too rich or too thin. (If asked they'd say I was always too thin, the Duchess of Windsor undoubtedly too rich for her own good.) What you could never be, in my family, was too smart. If you hadn't won a Nobel Prize or a MacArthur Genius Award you were in one of two categories: a) still showing potential, or b) failing. I knew my IQ had never been what was hoped for and now I had to face directly the possibility of brain damage.

On the other hand, if I couldn't demonstrate some cognitive incapacity my options for financial survival looked grim. Eight months ago my chemical sensitivities had gone nuclear--shooting squarely into the "good luck getting anyone to believe you" range--and I hadn't worked since. The aforementioned family doesn't value sanity, sobriety, or happiness as much as it values intelligence and I dreaded turning to them. My boyfriend's generosity, strained as it must be by the ordeal that had become ours, was the thread by which I hung. I had applied for disability payments through Social Security, but I knew my case would be difficult to prove. My primary symptom was a frightening and debilitating brain fog that wasn't likely to be imaged by a scan. Nothing in my blood or urine suggested crippling impairment. A favorable neuropsych, that is, one guaranteed to shake my self-esteem, was my greatest hope.

My primary care physician, Dr. R., has been something of an agnostic on my diagnosis, Multiple Chemical Sensitivities (MCS). After years of playing her cards close to her lab coat she finally wrote all three words together, in order--after being backed into a corner by a form demanding a diagnosis. It was the first time she had capitalized anything and then only the word "Multiple." She stipulated, on the form, that I might be able to get back to work at any time. Privately she let me know that she was only going by my account, implying that she didn't necessarily believe a bit of it. This is not the doctor you want on your side when facing the Social Security Administration, which takes your word for nothing. Still, at my HMO, she's the best I've encountered. As an institution, it has no use for controversial diagnoses.

Aside from internal conflict as to whether I wanted to be found smart or dumb, there was the issue of judgments being made about my mental health and those judgments being entered into my medical records. Dr. R., when pressed for a rationale for the testing, had mumbled vaguely about finding out what role depression or anxiety might have in my symptoms. The big chief of Allergy had tactlessly thrown out some hypotheses closer to the psychotic end of the emotional-disturbance spectrum. I knew they were both just shooting in the dark, and perhaps hoping I'd become someone else's problem. From a survival standpoint my greatest fears were that I would get formally labeled as a malingerer, or, more likely--given my reflexive, tedious, kamikaze honesty--as a hypochondriac. Either could be the kiss of death for a Social Security application. From the personal vulnerability angle I knew that things might be written about my personality that would have sufficient truth and authority to sting. I had been given some training in conducting neuropsych assessments and hadn't liked the whole endeavor from that side either. If felt intrusive, impersonal, authoritarian, and, surprisingly unscientific.

Given the fears and risks I decided to hire myself a sympathetic psychologist for my assessment--or, more accurately, ask my boyfriend to hire me one, the price tag being $1800. No one is ever neutral on the question of MCS, unless they are ignorant about it, and I wanted neither a naif nor a skeptic probing around my psyche, determining my fate. I chose an examiner with impeccable credentials, one who was also a champion of MCS patients. She turned out to be a charming, diminutive, sweetheart of a woman. She palpably disliked the prying portion of her job and kept it as brief as possible. Her natural warmth overcame any restraint in which she may have been schooled, which suited me completely.

Major problems remained, however. Whatever permanent brain damage I might have incurred, as painful as it might be to confront, it wasn't what prevented me from working. The disabling part of the problem occurred temporarily when I was exposed to things (perfume, mold, magic markers, Xerox copies, etc., etc.), especially when I was exposed consistently over time, when it got a little less temporary. Since the catastrophe eight months back, through making lifestyle changes bordering on the absurd, I had gradually put together hours and then entire days of clear-headedness. The near-normal use of my brain and a semblance of well-being were my most precious possessions. The last thing I wanted to do was run myself back into the ground toward the end of proving I had a problem. Avoiding any further permanent brain damage had to remain the prime objective, however inconvenient it might be.

I had the impression through the grapevine that the psychologist did provocation testing--deliberately impairing people with inhalants to which they reacted and then putting them through the drills. When I asked about it, she said that she had twice allowed people to try this on their own volition. The second time a woman had inadvertently given herself an epileptic seizure by spritzing some perfume. That was the end of provocation testing, or at least the psychologist's endorsement of it. I was relieved to hear it.

However, as the testing progressed I feared she didn't have any other magic for teasing out the complexities. I deteriorated while in her office and thus scored lower on tests given late in our sessions, regardless of the functions and and skills they were designed to measure. How could there be any accuracy to the results, I wondered, if there was no way to track or quantify this shifting variable? Also, it seemed that even while feeling drugged and struggling to keep track of which test item I was on I might still be pulling down at least average scores. I mean the highest office in the land was held by a man who seemed barely able to navigate his way to a podium; could I really claim on the basis of my performance on these tests that I couldn't work? I feared that short of falling into a coma I might test too well.

Despite my worries, the psychologist thought she had gotten reasonable data and seemed to believe my story. We discussed whether she should administer a personality inventory.

"Why should I give you a test normed to psychiatric patients," she reasoned, "when you're perfectly normal and healthy?"

"Well, yes, of course," I thought, with this anti-climax, but something I couldn't put my finger on felt odd. Later I realized that this was an unusual instance in which I was being evaluated by someone of whom I could say the same.