Adventures with Multiple Chemical Sensitivities: Tales of The Masked Avenger

Going Postal

2010-04-17T13:16:00.000-07:00

There is now a U.S. postage stamp graced with the official Masked Avenger slogan: SCENT-FREE PEOPLE ROCK. This is thanks to the Postal Service's offer to put anything within reason on personalized stamps (for a wee fee of course). Thanks are more importantly due to the creativity of a chemically-sensitive blog reader who prefers I only name her as Lisa.

Lisa ordered the stamps through zazzle.com, along with a bumper sticker that apparently didn't have much stickum. She reports that she was questioned about the slogan's intent by the zazzlers. They were baffled and didn't want to unwittingly draw the ire of the U.S.P.S. Lisa provided a translation of "people who don't wear fragrance are great" and the rest is history.

Better Days

2010-02-24T11:22:00.001-08:00

When last we heard from our intrepid adventurer fortune was not favoring her, yet her spirit remained undaunted.

Since I last posted a lot of respirators have seen their way through a stint of face time and into landfill. In the months that have passed I have relocated to the sticks, found a safe place to winter, and, to my amazement, purchased a little house. The house does not yet belong to the "safe place" category, but I am hopeful. To my further amazement, I find myself living (in sin) with a man I quite enjoy.

The man is a fitting partner for a self-proclaimed super hero and I'll call him Romanticus of Montague. He paints big, colorful abstract works of art and likes to dress up in outlandish outfits--a rhinestoned cowboy shirt, a tasseled turban, or biker gear. He is himself a refugee from urban pollution and struggles to tolerate his acrylic paints, wearing gloves and opening all the windows. I decided he was one of us when he described touching plastic with a look of utter revulsion contorting his face.

Romanticus shepherded me through the house-buying process--and I was one lost sheep. He and the realtor would offer insightful comments about foundations or siding while I stood masked, sick, and dazed. I would contribute requests to put pop-up air fresheners outside and morose remarks about unseen mold. In my world, love means being willing to get down on your knees and sniff foreclosure carpet.

I am aware that things are looking up for me at a time when they are looking down for many others, and that I'm unusually vulnerable to dramatic crashes in the luck department. Generally I try--not with great success--to cultivate a contentment that is independent of circumstance. At this moment my philosophy counsels expanding into unexpected bounty without waiting for the other shoe to drop. Also, I believe in steering as clear of the inflation of praise as of the deflation of blame. Like most people with Multiple Chemical Sensitivities, I've had plenty of practice at the latter.

Bumper Sticker II

2009-08-10T12:41:00.001-07:00

And the winner is...

SCENT-FREE

PEOPLE ROCK

Runners up not included in "Bumper Sticker I" are:

Promote Health

Go Fragrance Free

Promote Health

Go Scent Free

Pesticide to Perfume

Petrochemicals Poison

Avoid SCENTS-itivity

Go non-TOXIC now

I [heart icon]

fragrance-free

people

Bare Wire

2009-07-22T10:27:00.000-07:00

Two months ago I exchanged an isolated, almost cloistered, life for a wildly extroverted existence conducted largely among nude resort guests. This is not what I imagined as the result of electrical sensitivity (ES), but so it has been. In the past I've avoided thinking about ES. I've denied its creeping encroachment upon my life. I vaguely thought I would just give up if I acquired it. It would simply be too hard. The few people who had believed my report of my experience so far would fall away. But, as it turns out, one soldiers on (naked but not alone) and perhaps lives to tell the tale--always stranger than fiction.

Yes, only my awareness of ES has developed suddenly. I've had trouble using a computer for years. Then I lost the ability to use a cell phone, a T.V., then a cordless phone, and finally even a plain old retro phone, which was the signal to panic. Tedious attempts to be precise about my symptoms have gained me nothing. I'll just name the main problem "unpleasant brain." There have also been metallic taste, bizarre heat sensations (calf, ear), ringing in the ear, tingling, twitching, dizziness, and, in the chest, quavering and constriction. The experience overlaps with chemical sensitivity, but is distinguishable from it--at least it is now, in its full-blown glory.

On a positive note, ES is, for me, less cognitively debilitating than Multiple Chemical Sensitivity (MCS). I have less sense that permanent brain damage is occurring. On the downside I feel like a seizure or a heart attack is an imminent possibility. If I set aside my emotional response it is interesting to experience directly that the body--the nervous system--has an electrical nature. I feel my wiring.

It's a drag that ES involves disabling symptoms in response to things other people can't even detect. You're guaranteed to be branded a loony. On the other hand, electromagnetic fields (EMFs) are more easily measured than airborne chemicals. One of my first moves was to get an expert, Michael Neuert, out to my apartment to assess matters. (He's not only expert, but a sweetheart.) I grumbled beforehand that I knew he was just going to tell me I had to move. He did, but it was helpful that he did so with an irrefutable array of denial-crushing data. I was chagrined to find out that the worst spot in my electromagnetic hell-hole of an apartment seemed to be just above my pillow.

When I thought about it, I could only conceive of one course of action: look for a new home in the country using the clothing-optional hot springs as a base. Although it wasn't a social environment I had managed well I knew the place was relatively tolerable to me physically--mostly for accidental reasons. The guests are constantly bathing so they aren't highly perfumed. Laundry products aren't a big problem because folks are wearing much. There are not pets, no cell phone towers, and, crucially for me, no campfires allowed in the campground due to fire hazard.

I don't want to unfairly categorize a whole diverse group of bathers, but let's say tattoos are common at the spa--also raw food diets, astrology discussions, massage trades, disconcerting moans of release at unexpected moments, pornographic Yoga postures, poly-amorous relationships, and rapid intimacies established through extended, dreamy eye contact. In this milieu I've been heading out early each morning, toting my lunch box, for concerted house hunting against long odds in temperatures around 100 degrees. Agreement that I need to loosen up is the one point of consensus I can discern among the barrage of unsolicited advice that also seems to be a feature at the springs.

Truth be told, I was getting better leads on habitation from hanging around the communal kitchen than I was from the conventional legwork. The countryside surrounding the resort is more a word-of-mouth kind of place than one to be plumbed through Craig's List. So, I began networking among the locals with a vengeance. They are a mind-boggling set of improbable characters, from followers of the late "Promised God-Man" guru to hillbillies I would have expected to be in the Ozarks. If my sensitivities hadn't improved rapidly away from the city I wouldn't have had the pleasure to meet them.

My best source of information has been an aroma therapist I'll call Yenta. She is a Jewish New Yorker "to the nines," as she would say. She does the best anyone could to whip an uncooperative selection of individualists and misfits into a community. "People don't want to gather," she laments in that nasal New York way. She is severe with me when I beg off attending functions due to chemical sensitivity: "You can't live like this. Have you had your mercury levels checked?"

I had lunch, in the open air, with a former rodeo cowboy turned businessman turned new-age metal sculptor. He was sitting nearby, incognito, when I picked up a free postcard picturing a Native American healing symbol he had cast in steel. He asked slyly if I'd found anything good.

Another lunch, on the same deck, was with a pot-dealing poet/investor. He rents out property, but usually for more lucrative purposes than I had in mind.

My new realtor is a Japanese woman who used to be a librarian and faculty wife at Cambridge. I am guessing that she banished herself to the boondocks in some self-imposed penance for the disgrace of divorce. She was a picture of refinement, in white linen, looking utterly out of place on the steps of the foreclosed "manufactured home" she was hawking.

A grubby young man of 23 (who could only name sleeping as an occupation) sweetly offered me the spare room in his family's old vacation home rent-free. When I found out his name was Ulysses I had to go check it out, but, predictably, it presented a health hazard, and I mean for anybody. He turned out to be a poet too--in a psychedelic stream-of-consciousness vein.

So, has any of my schmoozing landed the non-toxic, low-EMF holy grail of a shelter? It has not. I have landed flat on my bad back on top of an ice pack in the same old lonely apartment in the middle of the metropolis. I cannot imagine what comes next, but when in this amazing life can we?

Spiritual Support

2008-12-16T17:06:00.000-08:00

Where does the seriously chemically-sensitive spiritual seeker turn in a religious landscape chock-a-block with incense worshippers? Whether you used to be a Chanel No. 5 Episcopalian or in with the patchouli oil pagans, you may now find yourself driven into the desert for 40 days and 40 nights. This may be good for the sinuses as well as the soul; however, I've been trying to come up with some other options.

I used to make my spiritual home at Spirit Rock Meditation Center, which offers meditation classes and retreats "in the Buddhist tradition." It's not a venue that works for me anymore, but I don't think accommodation of the environmentally ill gets much better at the institutional level. The center doesn't burn incense (although I was recently shocked to see--actually smell--it being sold at the bookstore). A well-publicized, if unexplicated, policy requests that people voluntarily refrain from using fragranced personal products. Most impressively, one dormitory was built with minimally-toxic materials, including wood floors instead of carpets. Fragrance-free products stock its showers.

Despite these measures, I have been unable to sit inside the meditation hall on my last visits, as scents continue to abound. Instead I have taken a chair outside, by a bank of windows, listening to the teachers by broadcast on a device designed for the hard of hearing. This is a workable arrangement in the summer, but this past year a good bit of California went up in flames and smoke was still swirling while I was on retreat. So, a mask had to compete for space on my head with a hat, a pair of glasses and the earpiece for the listening device. Folks, I'm not that devout.

As a first attempt at an alternative I've tried to form a fragrance-free meditation group. We've been a community of two for the better part of a year. The other member has been a blessing in my life, but still it's a little lonely. Lately, a few more souls have come out of the woodwork. This week a dear heart asked if she could join me for a retreat day in my apartment.

I've been thinking of organizing a weekly conference call for Buddhist study. This after being inspired by phone meetings of a new group, Chronic Illness and Disability Anonymous, which adapts the Alcoholics Anonymous program (in the Judeo-Christian tradition). "But how does that fit?" you might ask. I understand the goal to be the cessation of suffering--in a Buddhist formulation--despite illness and disability. And I say if physical healing flows from spiritual healing, I'll take it. To check it out call in either Sunday at 7:00 pm (EST) or 3:30 pm (EST). The conference call number is (702)851-4044 and the access code you'll be prompted to enter is 2432#.

Initially, there is the solace and inspiration to be discovered in literature. I've been finding Rilke good for redefining a life you might consider lost by conventional standards as prime ground for spiritual development. Hey, look at things a little differently and failure becomes a lucky escape from stultifying middle-class comfort. From "The Man Watching" ("Der Schauende") as translated by Robert Bly:

. . . What we choose to fight is so tiny!
What fights with us is so great!
If only we would let ourselves be dominated
as things do by some immense storm,
we would become strong too, and not need names.

When we win it's with small things,
and the triumph makes us small.
What is extraordinary and eternal
does not want to be bent by us . . .

The poem ends with the suggestion that one grows

. . . by being defeated, decisively,
by constantly greater beings.

Bumper Sticker

2008-11-14T13:00:00.000-08:00

Every political issue needs a slogan. And a song. I'm not musical but I have been manically generating sound bites for a Multiple Chemical Sensitivity bumper sticker. See the ever-growing list below. I have left off some of my favorites so that gentle souls won't be alienated, but if the authorities ever cart me off to the asylum I will be shouting "Death to Dryer Sheets!"

Feel free to steal my ideas (or those I've stolen from others). You can get an individual bumper sticker made for about five dollars by some Internet businesses. Please leave feedback and any ideas of your own in comments. However, please forgive me if I don't respond. My computer, although I love it so dearly, is trying to kill me (chemicals? radiation? flicker? space cooties?), and I have to try to just stay away. Also, let me know if you're aware of any outfits that make environmentally-friendly bumper stickers, i.e. not vinyl. If our local organization, the Environmental Health Network, decides to run with something and print a big batch I'll let you know.

Prevent Chemical Injury
Go Fragrance Free

Environmental Illness
Wake Up and Smell the Chemicals

We Are All Chemically Sensitive

Go Fragrance Free

Healthy Be
Fragrance Free

For Health's Sake Be
Fragrance Free

Thank you for not using scented products.

Scents Sicken

Raise Awareness of Chemical Injury

Your Perfume is Killing Me

Second-hand Scent Disables
Go Fragrance Free

Fragrance Free

Perfume Pollutes

Perfumes=Petrochemicals

Perfume? Pretty Poison
Get the Facts

Enough, Enough
with the Scented Stuff

Scented? Toxic.

The Chemically Injured Do It
FRAGRANCE FREE

Proud to be a
COALMINE CANARY

Rotation Sensation

2008-10-20T17:32:00.000-07:00

"Don't repeat any food eaten on a particular day for another five days."

"Can I eat the same thing for lunch and dinner on one day?"

"Yes."

"Is the purpose of this diagnosis or treatment?"

"Both."

This exchange constituted the entirety of my mission instructions for my latest health adventure, the rotation diet. I can tell you I was not ready on Day 1. On Day 3 I went to a potluck picnic and half-seriously considered the possibility that my fancy new doctor was simply trying to get rid of me as a patient. (Maybe she was upping the ante since the gluten-free diet alone hadn't dissuaded me from returning.) At the picnic table I forlornly eyed other people's offerings while eating what I had come to think of not so much as a meal but as a collection of "foods," in this case quinoa tabouli, water-packed sardines and a slice of watermelon. Munching some chips, a friend with his own special food needs implied that I had bogarted the sardines. I gave him a dark look.

By Day 5 a kind book store employee had thrown me a life preserver, The Ultimate Food Allergy Cookbook and Survival Guide: How to Cook with Ease for a Food Allergy Diet and Recover Good Health by Nicolette Dumke. I cited the book in a wheedling phone message to my doctor, who agreed to a four-day, rather than a five-day, cycle. The book has become my bible, although the author carves out a few pages for proselytizing about the actual scriptures.

I can only speak for the gospel according to St. Nicolette (as I've come to think of her). She has taught me the rules of rotating not just foods but genetically-related food families. She has also elucidated the rationale behind this latest lifestyle nonsense of mine--to do with sensitization (and masking of symptoms) in response to frequently-eaten items. From her, I am learning to keep my sanity while putting together menu plans. The book contains tips for gluten-free baking, sources for specialized products, and various other essentials. Finally, there is the author's personal story of her methodical and successful quest for health after near-starvation. Incidentally, she is clearly completely savvy about Multiple Chemical Sensitivity, although she doesn't emphasize it.

The concept of food families makes thinks more difficult. If you crush a little garlic into a sauce at dinner you've now ruled out eating onions, chives, shallots, leeks or asparagus for the following three days. They are all members of the Lily Family. Dumke wisely holds out such large, delicious food families from assignment to any of the four "standard" days in order to give the allergy patient more flexibility.

Flexibility won't mean what it used to. You can forget your favorite recipes, forget your favorite restaurants, forget about eating that pear on your kitchen counter when it ripens. However, if you want lettuce on Day 4 rather than Day 2, no problem. But seriously, this comes to seem big.

"Discover new foods," the book jacket promises cheerily. And, yes, variety is healthy and interesting, but the real value of weird foods for the new rotator is that they don't foreclose on future choices. Try to imagine being delighted to discover frozen ostrich patties at the nearby health-food store. I can eat them any old day without disturbing the grand menu-planning scheme. The sound principle of eating locally-grown, in-season foodstuffs goes by the wayside. Kiwi has become a prize because I eat nothing with close genetic ties to it.

It's all doable, just. I hope it will get easier. I have to break the habit of spontaneous nibbling. Otherwise I will have more moments such as the one at last Sunday's Farmer's Market. I accepted a sample of feta cheese and then mystified the farmer by slapping my forehead and coming out with, "Oh no, it's not goat day." I'd just sent myself back to the drawing board for the next day's main meal.

Judgment Day

2007-09-19T15:46:00.000-07:00

The dreaded but essential day had finally arrived. It was my third, last, best chance at Social Security Disability: the hearing with a judge. At stake was whether I'd be granted a small allowance on which to subsist or if I'd continue to rely almost entirely on miracles.

The courtroom was not packed. In attendance was my ex-boyfriend, he being the chief miracle responsible for my survival over the past two years. He had worn a tie for the occasion, along with a pair of brown polyester trousers that make me cringe and a zip-up fleece vest sprinkled with cat hair. He removed the vest at my graceless request, and, for some reason, proceeded to behave as nervously as if the pants had had to go. My stylish, goateed attorney decided not to use him as a witness. The calculated effect of my own impeccably conservative attire was destroyed, of course, by the obligatory respirator.

I had anticipated that I would be the lone female among gray-haired white men. However, we were welcomed--as if to kindergarten--by a small, plump black woman in a suit of yellow seersucker. She hugged my attorney as a greeting. I guess she was the court's clerk, but to me she was like a fairy godmother, winking and twinkling blessings at me from her domain behind a desk in the corner.

The judge was jowly and as dignified as the shabby, windowless chamber would allow. At the start he defused any adversarial assumptions by disassociating himself from the wretches who had denied my claim to date, and by assuring me that the vocational counselor he had summoned was not there to testify against me. As we continued he seemed a little lost in the sea of paper that my problems had generated. How could he resist clinging to the neuropsychological assessments carefully crafted to put ground under his feet? He alluded again and again to their handsomely-paid author, mispronouncing her name in a variety of ways and reassigning her gender.

By contrast, the judge hadn't even located the records from my primary doctor at Kaiser. I had long antagonized her with pointless monthly visits under advice to accumulate evidence. My attorney named an exhibit number, gave a wildly favorable summary of her notes, and corrected the judge so that he wound up mispronouncing her name as well. I wasn't even tempted to open my mouth. This was because for days prior I had been visualizing a strip of duct tape as an additional silencing layer beneath my mask.

The judge questioned how I had come by these unusually thorough and well-documented assessments from the neuropsychologist (who was sounding increasingly as if she was a Frenchman). Was a Workers Compensation case in process? My attorney might have been Barry Bonds receiving an underhand pitch. The Kaiser docs, he suggested, had exhausted their resources and had yet been bound and determined to get to the bottom of my case. They referred me--bless their selfless souls--to a real expert. My legal representative almost had me wanting to meet these intrepid medical detectives, despite my knowledge that they were oblivious to the neuropsychologist's existence.

If you are confused, dear reader, let me try to explain. The goal is never to portray the disabled claimant as actually having jumped with awareness through the necessary hoops to get approval. He or she only ever passively followed a naively-chosen doctor's health advice and inadvertently gathered thousands of dollars worth of otherwise useless documentation. Just so a sheep gathers burrs.

The judge, unfooled I'm sure, dropped the point but later took another stab at divining the truth when something didn't fit. How was it that I was now doing responsible, skilled work, albeit for only a few hours per week? Didn't I have organic brain dysfunction and the interpersonal skills of an enraged chimp? Was the foreign-sounding fellow who so conveniently subdued unmanageable records aware of my recent employment? My attorney assured him it was so and cited chapter and verse. The text whispered, "Come to the arms of your savior, Monsieur, and struggle no longer."

I would have loved to have leapt to my feet and shouted my righteous truths: "They don't know how to measure it! It's not static! You just have to believe me! I'm telling the truth!" But I was good when questioned, saying simply that I went to great lengths to ensure I was symptom-free while working some scattered hours from home. Well, not entirely good. I managed during testimony to let slip a comment about the lobby security guard's cologne, which seemed to be mace-based.

Anyway, good or bad, I won. I won. I won. The judge said the words "Multiple Chemical Sensitivity" in his decision as if all the world agreed to their meaning. I'm sorry to have done my small part in obscuring their real significance. However, it seemed I had two guides silently urging me to stick with the surest route to the money--a jittery guardian angel in stretch slacks and a sunnily-clad fairy godmother. One shouldn't tempt fate and expect miracles, just acknowledge them when they appear. Let's hope they come for all those who are homeless, hopeless and otherwise suffering due to the lack of recognition of Multiple Chemical Sensitivities.

Modern Leper

2007-04-11T20:03:00.000-07:00

I am ready to live in a leper colony. Or rather the updated, first-world equivalent of a leper colony. In fact, I fantasize about the possibility on a daily basis (aided by MCSVillage on Yahoo! Groups). I want to flee to the countryside, forsake the company of my cherished friends, and shelter among people who share my illness (Multiple Chemical Sensitivity).

I know we may have little else in common, besides raggedy nerves, but I need more social contact and I need it with people who don't travel in a cloud of perfume. People who don't reek of the infernal dryer sheets. People who don't smoke. Preferably people who don't ever need a match for anything. I have fought the good fight for inclusion of the disabled in society, but I have battle fatigue and I want to retreat.

My fantasy colony has taken various forms. In my more desperate moments I bargain with fate for just a campground. It would have a communal kitchen with electric appliances. Policy would prohibit fragrance and smoke. When I'm feeling more expansive my imagined community runs a green business and, of course, its members live in sturdy dwellings. We have solar power and zero-emissions vehicles. We are not refugees from modern life; we are its pioneers.

What do you dream of, my potential neighbor? I know, you want to be well again and to move again in the whole world of possibilities. And I wish it for you. But in the meantime, do you pine for a big house on a big acreage, all for your very own? For your own washer and dryer? Your own mega air filtration system? Your own sauna? People do set themselves up--home offices, home gyms, home theaters. It may be sour grapes on my part, but that life looks as lonely to me as my own. And wasteful.

I say let's be part of rerouting the American dream before it crash lands. Let's make healthy people want to leave their unhealthy lives and come abide with us. I'm sure that being socially ostracized has something to teach us about the possibilities of community and mutual aid.

Hey, you can experience a tiny sense of connection right now. Leave me a bit of cheer, anonymously if you like. (Start by clicking on "comments" below).

Environmental Health Radio Show

2007-03-08T09:49:00.000-08:00

Check out this link to learn about a call-in radio show on environmental health issues, including Multiple Chemical Sensitivities. The program, hosted by Albert Robbins, D.O., is webcast weekly.

Nurses Rule (Doctors Still Suck)

2007-03-07T06:59:00.000-08:00

Despite controversy, "the patient's concerns should be heeded," says an article on Multiple Chemical Sensitivity (MCS) in the American Journal of Nursing. Carolyn Cooper is the author of the welcome paper, published in March's issue of the largest nursing journal. She advocates for protecting MCS patients from chemical exposures in the hospital--pretty much as they (we) see fit. She has compiled a list of specific accommodations and calls for more training of medical staff.

Poor Nurse Cooper gallantly strives to give what's considered a neutral report on the controversies surrounding MCS, including the one over its existence. However, it seems she hasn't felt the liberty, in practice, of sitting on the fence. She's had a job to do, namely taking care of a surgical patient, one Mr. Norris. Mr. Norris has brought a respirator mask to the hospital with him and his wife won't let anyone wearing perfume into his room.

Cooper consults the professional literature but finds little guidance there and, in the end, relies on instruction from Mr. Norris. What rare and admirable humility! She xeroxes a brochure he's got on MCS and places a copy in his chart. She bars her cologne-wearing nursing assistant from her patient's room. Perhaps she concludes that the professional literature is sorely in need of her contribution. (As she notes, "MCS afflicts millions of Americans.")

Why has Cooper become a champion for our side? She doesn't really say. No argument is made to justify her implicit recognition of MCS. She doesn't share her internal process in deciding to take Mr. Norris seriously. She does mention that in the absence of "evidence-based standards" she allows her "experience and clinical judgment" to inform her suggestions to the nursing community. That judgment apparently doesn't equate doing no harm with taking no action. Now we just need a few well-placed publishers with the M.D. cachet to listen to the nurses who are listening to the patients.

More Evidence for Physical Causation of MCS

2007-02-12T10:58:00.000-08:00

A German study relating particular genes to chemical sensitivity was published Saturday in the on-line, peer-reviewed journal Environmental Health. The genes code for enzymes that help break down and detoxify a wide variety of common chemicals, including both pharmaceuticals and known carcinogens. Eckart Schnakenberg and the other authors of the study are actually illuminating the important role of environmental exposures in causing chemical sensitivity by helping us understand the genetics. (No, folks, it's really not an either/or situation and their work is not a disguised attempt to blame the victims or suggest that we are a tiny group of strange mutants who collapse under our own weight without provocation.)

One of the studied enzymes, an N-acetyltransferase (NAT), is involved in the metabolism (break down) of substances "produced in industry, and found in cigarette smoke as well as the human diet." Around half of all Caucasians carry a variation that's slower rather than faster at its job. People who have it don't clear low-dose carcinogens from the body as efficiently as the rest of the population. The Schnakenberg study showed that they are also likelier to report problems with chemical sensitivity.

Two other genes the researchers examined code for glutathione S-transferases (GST), which are also involved in detoxification. These genes are more frequently deleted on both chromosomes in the chemically sensitive. That is to say that neither mom or dad contributed a copy of one or both genes. And no gene, no enzyme.

I'm sure it's still a long road to understanding the mechanisms for Multiple Chemical Sensitivities (MCS), but studies like Shnakenberg's should silence the it's-all-in-your-head crowd at some point along the way. As we know, that bunch is still annoyingly noisy, but you'll notice its "experts" tend to ignore, rather than try to refute, this type of ground-breaking research. You are born with your genes and the ones that are being associated with chemical sensitivity are implicated not in mental illness, but in protecting the body from toxic chemicals.

My knowledge of biology is rusty, so if I have made any errors in my effort to summarize the Germans' work please let me know. Also, for a better explanation of the relevant scientific concepts and terminology please see an excellent article on a pioneering and closely-related study published by Gail McKeown-Eyssen and her colleagues in 2004.

Social Insecurity

2007-02-04T16:15:00.000-08:00

What does an attorney need to do to win a Social Security disability case when the diagnosis is Multiple Chemical Sensitivity (MCS)? An article that goes a long way toward answering that question just popped up in my inbox, courtesy of Google Alerts. "Multiple Chemical Sensitivity: Recognition to Proof" is authored by two attorneys and a doctor. Refreshingly absent from the piece is the hopeless tone I generally associate with pronouncements on this topic.

Not that I'm complaining about despair. It can really be very helpful in taking the edge off the panic. My own Social Security case looks as if it may languish a second year before I find myself in front of a judge. I'm not much looking forward to the encounter, so I wouldn't mind the delay, if it weren't for the little matter of the rent.

The key element to a successful case is stated as follows:

It cannot be too strongly emphasized that your client, if possible, obtain the services of a medical doctor who not only accepts the existence of MCS but is willing to report in some detail that MCS exists and how in the claimant's condition prevents reliable, predictable, consistent functioning ...

Here's where the Catch-22 comes in for people who urgently need disability. Who could afford the other-worldly fees of this postulated angel of mercy? I've had an earth-bound practitioner all picked out for some time, who comes dear enough, and haven't been able to bring myself to part with the few months of rent I have in hand. Sorry to be a downer; just telling it like it is.

Campaign for Safe Cosmetics

2007-01-31T08:28:00.000-08:00

There is another worthy organization I should mention while I'm on this kick about things with which you lather, paint, spray, scent, and goop yourself. The Campaign for Safe Cosmetics announced last week that they had reached a benchmark. Five hundred companies have now signed onto their "Compact for Safe Cosmetics." By doing so, these manufacturers have pledged "to replace ingredients linked to cancer, birth defects, hormone disruption and other negative health effects within three years."

I have to say, the names of the signers don't sound like the product choices of either ruthless beauty queens or average Americans. The brands tend to have a whimsical, pagan flavor. I ran across Carrot Tree, Cosmic Tree, Cosmic Dance, Earth Dance, and Dancing Dingo. My cuteness award goes to Munchskins Skin Care. I'm too far out of the mainstream to be much judge, but I thought the participating companies with the greatest name recognition were probably The Body Shop and Dr. Bronner's. The Campaign's website notes that "OPI, Avon, Estee Lauder, L'Oreal, Revlon, Proctor & Gamble and Unilever have thus far refused to sign the Compact for Safe Cosmetics."

With a few keystrokes and mouse clicks you can get active and gently encourage the latest Campaign target, OPI, to do the right thing. The nail polish giant has apparently already been cajoled into lumbering in the right direction.

What is my immediate personal stake in this as someone with Multiple Chemical Sensitivities? I myself don't so much mind tracking down obscure alternative products at the health food store, or paying a little more for them. However, I wish it were easier for an accommodating friend to show up fragrance free for a get together. I don't think most people really want to wear ten differently scented products at once if they stop to think about it. I don't think they want perfume so adhesive they can't wash it out of their clothes if they try--even if they don't know the health risks. It shouldn't require a research project to stop making other people sick by your very presence.

More of Consumer Reports Does Fragrance

2007-01-30T13:16:00.000-08:00

I drew ten times my average daily readership yesterday due to Sunday's post. It was about an unsettling Consumer Reports article on cosmetics safety published by AOL. Please, have another helping. My favorite sentence in the report, which alludes to perfumes, reads, "We bought Happy, Poison, and Beautiful in both the U.S. and Europe, and found the E.U.-banned phthalate DEHP in all the samples." Surely the article's author had some fun with word juxtaposition on that turn of phrase. While I admire audacity, I'd suggest Christian Dior, maker of Poison, consider "Young," "Powerful," or "Rich" as more on-message options for a name.

But I'm not really playing to my new-found audience now, am I? The visit counter suggests that my most avid recent reader works for a large firm that produces cosmetics (one with its whole own ISP). Perhaps a bored employee is dropping by, or a chemically-sensitive one, but I'm guessing that someone is actually getting paid to read my little foot-stamping missives from Multiple Chemical Sensitivity land. I don't know whether that's creepy or flattering. It is definitely annoying that being on the right side is so seldom as financially rewarding as being on the wrong. If anyone wants to pay me, please step forward.

Is Your Shampoo Safe?

2007-01-29T13:23:00.000-08:00

We do try (don't we?) to remain ever alive to the teeny-weeny area of overlap between fun and Multiple Chemical Sensitivity. Today's recommendation is not quite like a night at Mardi Gras, but check out the interactive data base on cosmetics safety put up on the web by the Environmental Working Group (EWG). It's part of their Skin Deep project, which also sends out a free e-bulletin on request. You can enter the brand name of your shampoo, or your moisturizer, or heaven forbid, your perfume, and see how they rate it for safety.

I figured my body had long since become a finely-tuned instrument for testing cosmetics safety. I thought I wouldn't learn much on this subject from EWG. It's true that the products I use--not that I indulge in many--were in the low-risk category. However, they weren't the lowest of the low and I think I'm going to making some changes. Why not use a lip balm with zero health risk? I think I should be able to safely eat my lip balm if I get it into my head to do so. Why not use a shampoo with seven ingredients, rather than 37? Please, no whining, I'm sure the simpler one will remove dirt and oil from your shining locks just fine. Did the advertising really have you thinking your current one was going to improve your sex life?

Consumer Reports Does Fragrance

2007-01-28T15:29:00.000-08:00

Breathing perfume makes me sick--literally, instantly, and routinely. I'm sure I could discuss the subject rationally with fragrance wearers, if they were just amenable to a simple preliminary procedure. "I'll take the mask off in a minute," I'd say. "Hold onto your chairs there, sir, madam." A quick rinse with the old fire hose and let's chat. Oh, yes, I suppose my imagined interlocutors might be more receptive to a familiar, unbiased source of information--and not complain if it was a little dry. I recently ran across just the thing.

On Friday AOL published a Consumer Reports article on the safety of cosmetics. The piece outlines the appalling lack of safety regulation in general, but focuses on a potentially dangerous class of chemicals called phthalates (THAL-ates). These compounds are contained in all manner of products, including perfume and anything with "fragrance" listed as an ingredient. Consumer Reports found phthalates in all of the eight perfumes they analyzed, although none of the labels listed them. This lack of disclosure isn't surprising, as it's not required. However, several companies were revealed to have made false claims either about whether they use phthalates at all or about which ones they use. And, you bet, the fibbers' names were named, specifically Estee Lauder, Clinique, Aveda, Liz Claiborne, and, for shame, Aubrey Organics.

Phthalates are known to cause cancer and liver injury in animals and to cause reproductive and developmental abnormalities in people. They are often used to make other fragrance chemicals linger--I swear, sometimes for years. They are banned in Europe, where regulation is more stringent. Consider that only eight cosmetic ingredients are prohibited in the U.S., while more than 1,000 are forbidden by the E.U. (Not that the Consumer Reports testing suggested that the European law was being followed.) On our side of the Atlantic, "The industry essentially regulates itself," states the article.

So what is our take-home message? Even if you don't have Multiple Chemical Sensitivities, buy fragrance-free products from eco-groovy alternative companies. (Or be on guard for a bracing spritz.)

Help, We Exist

2007-01-17T13:57:00.000-08:00

MCS America is launching a petition drive to give a nudge in the right direction to powerful U.S. organizations that should be doing something about Multiple Chemical Sensitivity (MCS). The web-based advocacy group has been publishing a free on-line newsletter since August. Last I knew, the head of the group's board of directors, Lourdes "Sal" Salvador, was spearheading its activities out of the van in which she lives due to her MCS. (Gotta love her.)

With permission, I've copied below the one-sentence petition statement to be delivered to the American Medical Association, the Centers for Disease Control, and the National Institute of Environmental Health Sciences. In my understanding, the group will send out a more detailed letter over the signature of its leaders on the 1st of February and there will be additional opportunities for the rest of us to lend support then.

I hereby petition the AMA, CDC, and NIEHS to support further studies, endorse the full recognition of MCS as a physiological medical condition, and to educate physicians about MCS and environmental illness for the betterment of public health.

To sign the petition send a message with your name, state, and any title/affiliations to:

petition@mcs-america.org

Half a Million Canadians MCS Diagnosed

2007-01-13T09:19:00.000-08:00

Statistics Canada released a report Friday estimating that 2.4% of Canadians over age 11 have been diagnosed with Multiple Chemical Sensitivity (MCS). That's about 643,000 souls. The government agency conducted a survey asking participants about MCS, Chronic Fatigue Syndrome, and Fibromyalgia, all classed as diseases with "medically unexplained physical symptoms," or MUPS. Over 5% of the Canadian population, more than a million folks, are believed to have at least one of the three MUPS, with MCS being the most prevalent. Hard to say what the figures really mean when it seems that half the potential diagnosers don't believe in the existence of one or more of the diseases, but onward...

What else did the study purport to tell us about our north-of-the-border comrades with MCS? They are more than twice as likely to be female as male. The middle aged are harder hit than the young or the old. (The grim thought occurs to me that MCS may prevent old age.) Compared to the general population more people with MCS are likely to class themselves as previously rather than currently married. MCS is the most frequent in the lowest income bracket. And, finally, there is a relatively high percentage of self-reported mental illness and dissatisfaction with life among the chemically sensitive.

Careful, now, with those cause-and-effect conclusions (and Statistics Canada was admirably so). Granted, getting MCS isn't going to change your gender--except in truly exceptional circumstances--so I'd say we can safely consider double X chromosomes to be a risk factor for the disease (as long as we assume that men come forward and are diagnosed as readily as women). But consider that MCS could drive you into debt, drive you crazy, and drive off your spouse, or failing that, drive him to the grave. On the other hand, being poor might mean you eat poorly or breathe polluted air and thus are more likely to get sick. Who knows what causes what.

And, don't forget, when two things are found together a third factor may be causal. Being female contributes to the likelihood of both poverty and MCS, and obviously in some ways that aren't related to each other. Or, considering the mental health issue, I'd guess that traumatic stress could soften up your neurons for both MCS and, say, depression. Or all those medications you're taking could prime two pumps. Or all those pesticides you're eating. All that perfume you're breathing. Just speculating.

How do the U.S. and Canada compare in terms of MCS incidence and the number of chemicals circulating in the two countries? State-side studies of MCS prevalence have usually come out with at least slightly higher estimates. One surprising study showed that about 6% of Californians had been diagnosed with MCS and about 16% said they were "allergic or unusually sensitive to everyday chemicals." According to an article in the Toronto newspaper The Globe and Mail, Canada has a mere 35,000 chemicals in common use, while there are over twice that many floating around in the U.S. I'm sorry, these facts are no doubt unrelated, but I couldn't keep myself from pairing them.

Of course the label "medically unexplained" is subtly pejorative and in line with efforts to cast doubt on the legitimacy of the diseases. Many other illnesses have mechanisms that aren't understood and yet the fact isn't included in their names. The MUPS label also says nothing about the real associations and possible common biology of the diseases. But what do I know; I'm just a MUPPETTE (marginalized, unemployed, poor patient entertaining thoughts of toppling the establishment). It's probably best to listen to those pulling the strings, who are PAID-OFF (pompous, arrogant, ignorant doctors offering farcical folderol).

MCS Child on TV News

2006-12-31T14:20:00.000-08:00

Check out a video clip of a news story done by a Fox affiliate in New York about a 4-year-old girl with severe Multiple Chemical Sensitivities (MCS) and food allergies. Her parents report that their HMO won't pay for her life-saving treatment with an Environmental Medicine specialist. They have petitioned, complained to, and met with every responsible state and federal agency and official possible--to no avail. Elsewhere on these poor souls' website you can buy greeting cards or donate money if you want to help reduce the staggering debt they've taken on to pay for their daughter's medical care. Y'know, I can often find a sense of gallows humor about my own situation, but I am undone by seeing parents struggling against the system to help their MCS children.

Diplomat from Planet MCS

2006-11-26T09:23:00.000-08:00

The Gideons have done well with bibles, but I would really like to have them turn their hand to distributing a video produced by Alison Johnson, chair of The Chemical Sensitivity Foundation, entitled Multiple Chemical Sensitivity: How Chemical Exposures may be Affecting your Health. I saw it yesterday under the impression that it was a new release and thought it was destined to change public perception of MCS. I learned today that it's been out since 1998 and I realized how little anything relating to MCS has changed in at least the last eight years. Not a particle of blame for this stasis can be attached to Alison Johnson or filmmaker Richard Startzman. It can only be that too few people have seen their work. (More recent videos adddress Gulf War Syndrome and the health impacts of 9/11.)

There aren't many things in life with which I can't find some fault, but I'd be hard pressed to criticize one directorial decision in the MCS documentary. It draws the viewer into the lives of a broad spectrum of people with MCS, including professionals, laborers, children, and Gulf War vets. It would be a blind eye and a hard heart that could discount this collection of humanity as a bunch of psychosomatic whiners. I particularly felt for the mother of a 7-year-old as she recounted his long, heart-wrenching, and sometimes-terrifying suffering, her own feelings in check just below the surface as she spoke. I also can't forget a man who had been living in a tent for months, through all weather, seemingly without a dent in his good-natured disposition.

The filmmakers select the most serious, well-spoken doctors and academics to expound on the nature of the disease, its causes, prevalence, etc. No airtime is given to the quacks who cry quackery. The patients' accounts of their experience indirectly suggest the organized cruelty dealt out to those with MCS, along with quotations from medical reports used to deny them disability benefits, and a brief allusion by one doctor to powerful enemies. There is also a poignant moment in which the former owner of a home pesticide company, now himself sick, expresses remorse for dismissing the pleas of a distraught mother for her chemically-sensitive child's safety.

But there is nothing heavy-handed in this film. It gently points to the implications for everyone in the emergence and increasing prevalence of MCS, but it doesn't try to force any particular conclusion. Nor is there any defensiveness in its tone. A viewer naive to the subject wouldn't suspect that everyone involved in the project was shut out of public discourse or under attack in some way or other. It is the perfect vehicle for educating people to the extent they are open to learning. I wish I could give a DVD copy to my doctor, my neighbors, my employers, my landlord, my friends, the neighborhood library, my congresswoman, and my local PBS affiliate. Yes, I'd like a copy of it in every hotel room, or least have it available for free streaming over the web.

CIIN Conference: Move Over Mick Jagger

2006-08-13T10:41:00.000-07:00

Attending last week's medical conference on Multiple Chemical Sensitivity (MCS) was, for me, akin to being allowed backstage with a famous rock band. The international conference was held August 4-6 at a hotel near the San Francisco Airport and was organized by Cynthia Wilson of the Chemical Injury Information Network (CIIN). I didn't feel like a groupie when I walked in, but the level of scientific discourse was so thrilling that I was hugging startled researchers in gratitude by the end. Wilson told the assembled doctors and academics they were her "dream team." She told me that gathering them in one place had been like "chasing dust bunnies." She is the Bill Graham of MCS and I congratulate her.

The conference, open to the public, was convened for the purpose of improving on previous medical descriptions of MCS. The hope is that a better "case definition" will bring about recognition of the illness by key governmental bodies, such as the Centers for Disease Control in Atlanta. The legitimacy thus conferred would hopefully, in turn, loosen up some research dollars to direct at better understanding the disease. It would also help bring us sick people out of the twilight zone and back into decent society. It's not Wilson's style to speculate on the chances for success. "If this doesn't work, we'll do something else," she said.

I've been pretty firm in believing my own experience with MCS, but a certain malaise can creep in when the doctors who believe me seem to fall largely in the "fringe" category. I don't dismiss all alternative medicine, but the use of pendulums and "muscle testing" as diagnostic tools depresses me. And I rebel when asked to drink my own pee every morning in some untested "hair of the dog" scheme. I once passed for a serious student of Biology, for God's sake.

So...it was a giddy relief to see for myself that smarty-pants mucky-mucks, with credentials up the wazoo, are hashing it out with each other in rich and lively debate. I was cheered by watching them respectfully disagree over whether the key to MCS lies in the brain, the immune system, detoxification enzymes, or a biochemical cycle of nitric oxide. It was a pleasure to hear their expectations for scientific proof of each others' assertions. And it was especially heartening that none of their various understandings flew in the face of my first-hand experience; they had a feel for the beast.

No radical new directions were evident in the first draft of the case definition produced by a conference workshop. (Anticipating this, some experts believed the project should have awaited further discovery.) "Diminished mental acuity" and "mood alterations" were newly listed as possible symptoms, but were not required to make the diagnosis. Similarly, intolerances for alcohol and pharmaceuticals were named as possible characteristics. Involved arguments about each of the three words in the label "Multiple Chemical Sensitivity" didn't appear to result in a change of nomenclature. Dr. Claudia Miller, a giant in the field, sent a plaintive written plea to refrain, at least, from using the word "sensitivity." It is apparently both owned and ruined forever by foolhardy allergists who will come to rue the day they decided what it meant.

The group knew they were "long on theory and short on data," in the words of Dr. William Meggs. Wilson wisely gave the biggest chunk of uninterrupted air time to a researcher, Dr. Robert Haley, whose focus has not been on MCS, but who has pinned down some hard facts on an overlapping condition, Gulf War Syndrome. He delivered a how-to lesson not only in scientific methodology, but in political moxie for approaching subtle, complex illnesses which go unrecognized in an industry-dominated, anti-scientific climate. An eagle scout from Texas, Dr. Haley sported a crisp suit and tie in contrast with the sports jacket and tennis shoes attire of the more typically professorial types. He got his initial funding from, of all places, Ross Perot's organization, but now has a large Congressional grant. Speaking of Washington bureaucracies he quipped, "paradigm shift occurs by attrition, not conversion."

Dr. Haley's research group had divided GWS patients into three categories based on a sophisticated analysis of symptom profile. The team then convincingly tied each patient sub-group to specific Gulf War chemical exposures and elucidated the predisposing genetic factors and resulting brain cell injury. The types of injury they discovered are not common to psychological disorders. Particular measures of brain function fell on one side of normal for one sub-group and on the opposite side for the other two. The abnormalities would have cancelled each other out to come up as "normal" if the GWS vets had been considered as one group. Dr. Haley warned that the MCS population might contain similarly diverse sub-groups.

Gender was an interesting theme at the conference. Dr. Thomas Kerns, a philosopher interested in medical ethics, lamented a general paucity of "chick stuff" in the discussion, given that MCS is a predominantly female malady. Four female heavy-hitters--Drs. Iris Bell, Claudia Miller, Grace Ziem and Gail McKeown-Eyssen--all submitted written comments but weren't present. One of the few female experts who did attend, Dr. Marti Wolfe, made reference to studies showing that the length of time new diseases take to gain wide acceptance after they are discovered is highly correlated with the percentage of victims who are women. I'm sure that this piece of information came as no surprise to the largely female audience. (Wilson emphasized that we have been waiting over half a century.)

As the subject of the conference was MCS you may ask about the air quality. One MCSer came to the audience microphone to say the afflicted were "dropping like flies" from fragrances. An unconfirmed rumor flew around that Dr. Fernandez-Sola was actually wearing cologne. Whatever personal-care chemicals may have been wafting about I wouldn't have stood a chance anyway in a carpeted, windowless hotel meeting room with a suspended ceiling. By the end of the weekend I was just short of delirious, despite my mask (but still too interested and excited to go home). On balance, I couldn't complain. I'm sure most medical conferences don't invite patient participation (which, at this one, was as unpredictable as a radio call-in show). And, after all, a groupie has to expect a monstrous hang-over after hob-nobbing with the band.

Who Do We Think We Are?

2006-05-26T10:09:00.000-07:00

Want to understand how Multiple Chemical Sensitivity (MCS) impacts and changes people? Want validation for your own experience as a chemically-sensitive person? Want to expand your thinking about the social context of this political hot potato of a disease? Want to leave the unconvinced hand-wringers in the conceptual dust, wasting their breath on the controversy over the problem's existence, while you speed off to new intellectual horizons with the wind in your hair? If so, author and psychologist Pamela Reed Gibson is your gal. Her words are like alpine air to an asphyxiating person and I try to read every last one she puts down on paper.

Last year Gibson and some colleagues published a study* (available through CIIN) on how MCS changes people's sense of who they are. (For those who'd prefer a less academic introduction to her work, the first edition of her wonderful book, Multiple Chemical Sensitivity: A Survival Guide, is reviewed on Amazon and the second edition can be purchased at www.earthrivebooks.com.) Gibson's team hypothesizes that the always-difficult adjustment to chronic illness might be particularly problematic for those with diseases like MCS that aren't understood or generally recognized as real. For the study, they analyzed a couple hundred replies to a questionnaire asking the mostly-female and mostly-white respondents about changes in their identity resulting from the illness.

It does seem, when illness becomes chronic, that one is eventually pulled to divert some attention from the quest to get back to one's "old self" and to try to accept, discover, or create a "new self." Gibson et al. review previous work characterizing that process in the case of accepted diagnoses. The cited researchers collectively paint a picture of a diminished or fragmented sense of self that ideally shifts to a more positive, integrated one that incorporates the effects of the disease. I could recognize myself in the description of an attempted short-cut to the desired transformation: A "well" identity is maintained for interacting with others while an "ill self...copes privately with the demands of the illness." (That's a trick, by the way, that's easier to pull when you can keep the illness invisible.) An important psychological task in making the positive shift is separating one's sense of self from the disease, not blaming oneself. The study authors point out that medical validation for this distancing is often lacking with MCS. Indeed, I'd say, doctors often actively discourage the effort.

Before I touch on the research findings let me say a word about Gibson and friends' refreshing approach to their project. First of all, they come out of a school of thought that doesn't conceive of knowledge as objective, but as socially constructed. Their goal isn't so much to get at any absolute truth as to instigate social change through the illumination of oppressive constructs. They describe MCS as "psychologized" and "delegitimized" condition and the "marginalized" people who have it as "situated in an experience constructed as 'not real' by dominant social and economic forces." They seek a "dialogue with the subjects of their investigation, whom they respectfully refer to as participants, and they want to provide "a forum for the expression of voices unheard in mainstream medical discourse" (the patients', that is). As it happens, I find myself situated in an experience where tortured social science jargon can sound like lute music on a breeze to my marginalized ears.

The eight common themes culled from the questionnaires reveal, for starters, a sad litany of losses in both the material and non-material realms for people with MCS. I found reading about those many losses momentarily overwhelming at times, but, on balance, having them carefully catalogued and clearly articulated was enormously helpful. I felt able to pin down more precisely the nature of the struggles I face and less alone with it all.

Under a thematic category called "loss of a stable, familiar personality," Gibson's group reports participants variously feeling that they had become more fearful, less independent, more self-centered, less tolerant, more mean-spirited, more envious, less kind, less fun-loving, less valuable, and less self-valuing. (Nobody slit your throat yet, experiences of growth are covered in other categories.) One woman is quoted at length describing the difficulty of knowing who she had become when her emotions and behavior had been frequently affected by chemical exposures over a significant period of time. "I am no longer a separate entity," she writes, "I am what I am with the influence of the chemicals now."

Another theme covered losses related to "self-positioning," or relationship with the world. The researchers suggest that losses related to employment were the most impactful on identity, although people also had profound changes in their roles as partners, parents, and friends. Respondents described their wasted potential and inability to contribute what they would have to their families and communities. I couldn't help wonder if identity concerns might not be a secondary consideration for someone who had become indefinitely homeless through a loss of livelihood. In this section and elsewhere I would have appreciated some separate discussion of those in the most dire circumstances (if, in fact, they were represented).

Another theme involving the social self was identified as "emotional suppression to meet others' expectations." Participants related hiding their illness and their feelings about it, even from loved ones, to prevent isolation, loss of relationships, and negative judgments, both spoken and unspoken. One comment I found ironic came from a participant who deprived herself of desired psychotherapeutic help because she considered it crucial not to risk being labeled as "a 'crazy' EI." (I think the same institutions that push us toward psychological help often simultaneously prevent us from receiving it.) The analysand wannabe describes her necessity, somewhat mysteriously, as a "political" one. However--again considering the worst case--I thought of people for whom a job or other means of survival might be threatened by honesty about their illness-related experience or needs.

Some portion of those surveyed felt they had developed various positive qualities, or become better people overall, through meeting the challenges of MCS. I found their testimony inspiring, at least when I could avoid comparing myself to them (or to their self-images). They described themselves as wiser, emotionally stronger, more self-aware, more in touch with nature, less in need of external validation, more informed, spiritually richer, more confident, more life-loving, less materialistic, more politically aware or involved, and as having a stronger sense of self, more balance in life, and clearer priorities. In my reading of these positive accounts I didn't see much emphasis on greater abilities for connecting emotionally with others, which made sense, but seemed a sad comment.

The Gibson study is noteworthy not just for detailing the impacts of a nasty disease but for characterizing the institutionalized mistreatment of the victims in society and the reasons for it. One identity it validates, and even encourages, without explicitly discussing it, is that of "member of a socially-oppressed group." The authors do discuss the "activist" identity taken on by some people with MCS, noting that it doesn't measure up to cultural expectations for hard work and success. But not all MCS patients have sufficiently good health to be active in any sense of the word, and activism that doesn't recognize what it's up against, externally and internally, can be misguided and frustrating. It seems to me that we MCSers need to exonerate ourselves from responsibility for our social oppression as much as for being sick. I think doing so can actually result in a more measured, reasoned advocacy for ourselves, both individually and collectively. For help with the job there's nobody like Pamela Reed Gibson.

*Gibson, PR, Placek, E, Lane, J, Brohimer, SO, and Lovelace, ACE. (2005) Disability-Induced Identity Changes in Persons with Multiple Chemical Sensitivity. Qualitative Health Research 15(4), 502-524.

Check Out Nontoxic Radio

2006-05-07T18:03:00.000-07:00

Last week I got a mysterious e-mail from "The Voice of Reason." This apparently-human embodiment of logic and sense had deduced that I might be interested in a weekly radio show airing on a low-power FM station in Massachusetts. Sure enough, "Antidote Radio", hosted by the Voice herself, covers a variety of topics related to Multiple Chemical Sensitivities (MCS). Better yet--for those of us trapped outside a 10-mile radius of WXOJ-LP--the show streams over the internet. On my rare and vintage computer set-up it doesn't so much stream, as drip, but, with patience, work-arounds are possible. (Come on, you sighing MCSer out there, you can do it, your life is a work-around.)

Boy, I understand why those media monopolists are trying to get the internet under control. (Stop them.) I felt a little giddy considering the possibilities of a weekly international webcast representing the perspective of people with MCS. Even if bed-ridden, we could get the latest, hear each others' voices, organize to advocate for ourselves. No cosmetics executive would be able to pull our programming. Maybe, if we were funny, and the tiniest bit subtle, we'd be invited to roast our enemies at their own table, a la Stephen Colbert. (Through a heads-will-roll failure of domestic intelligence the comedian was allowed to satirize our Prez at length, to his face, at a televised dinner.)

Anyway, starting small, support your Voice, listen to "Antidote Radio." You might even hear a conversation with a currently text-bound chatterbox posing as a superhero.

Exposed

2006-04-27T08:38:00.000-07:00

I have little idea how healthy people will respond to Exposed, a new documentary about a woman with Multiple Chemical Sensitivities. I responded with, "hey, look, it's my life on the screen," but I also kept thinking about them (you?)--the chemically tolerant folks. Squirming a little, I wondered if the general public would be sympathetic as the woman, named as Katherine, delivered herself up to the camera in painful, private moments--exposed indeed.

Katherine, while attractive and personable, is no air-brushed poster child for Multiple Chemical Sensitivity (MCS). An avant-garde dancer and performer who often filmed herself, she's not suffering quietly or demurely. After a bad chemical exposure she weeps into the phone with distress and frustration, trying to wring some emotional support out of an apparently unattuned listener. "No, I don't have the flu," she says between clenched teeth, "I have environmental illness." In another particularly raw scene she speaks angrily to the camera while washing her hair outside on a cold winter day. She is away from home and going to such lengths in order to avoid breathing in the synthetic chemical fragrances in a friend's bathroom.

In addition to allowing us a window into her daily life, Katherine offers a social commentary--particularly addressing the widespread denial of MCS as a real disease. The filmmaker, Heidrun Holzfeind, does not establish much of a separate directorial perspective distinguishable from this critique. Between shots of Katherine, Holzfeind does intersperse, for effect, segments of 1950's-era marketing footage from the chemical industry, as well as shorter snippets of modern advertising and political speech. Also presented is some disturbing science supporting the reality of chemical dangers. It's clear the director is on Katherine's side, but Holzfeind allows her to be the one to draw the more subjective conclusions.

I didn't find much with which to quibble in Katherine's analysis, although it took the form of off-the-cuff, often biting, remarks rather than closely-reasoned or factually-documented arguments. Again I didn't know how it would play with the uninitiated. She rhetorically kicks mainstream doctors to the curb. She identifies industry's cynical, profit-driven opposition to recognition of chemical harms. And she indicts "chemical culture" for such faults as an emphasis on the quick fix and a need to control--in contrast with her own hard-won belief in the need to be patient and allow her body to heal itself.

In one of her moments of reflection, Katherine talks about needing to set aside what she knows in order to interact socially in a normal fashion. Unsure of her meaning, I guessed that she was talking either about pretending to be healthy and happy, or about tacitly accepting generally-shared assumptions that no longer fit her experience--for example, that we live in a benign environment. She certainly doesn't seem to be suppressing much in Exposed; she's practically screaming out her truth. While I worried about the P.R. impact on the one hand, on the other I felt vicariously thrilled by her lack of apology and aggressive assertion of her reality in the face of its denial in so many quarters.

I, for one, would rather see someone being genuine, engaged, and angry than someone silencing herself, in order to fit in, at the expense of her health. Yes, I'm sure there are more enlightened options and I'm also sure that Katherine--and a certain slightly abrasive blogger--are working toward manifesting them. In the meantime, I hope as many members of the well populace as possible will see this film. And I hope they respond with compassion to the story of a real, struggling person rather than waiting for diplomatic coaxing before taking to heart her crucial messages

The Tomato Effect

2006-04-05T10:53:00.000-07:00

Some dirty politics have been brought into play by the emergence of a chemically-induced illness known as Multiple Chemical Sensitivity. Anyone interested in understanding them should find a way to see the new documentary The Tomato Effect. In it, the camera follows Faun Kime (who also wrote, produced and directed the film) as she tracks down the truth about her father's death a decade earlier. She sets out to learn if there is any basis for the suspicions raised by his fatal mountaineering accident in 1992.

In the film, Kime's narration of her moving personal journey is skillfully interwoven with the still-unfolding history of a witch hunt. The California Medical Board systematically persecutes ten loosely-associated physicians who treat patients with Multiple Chemical Sensitivities (MCS). Kime's father Zane, one of the doctors, died just before the climax of his precedent-setting legal battle to retain his license. His case was expected to exonerate the maligned practitioners of a developing medical specialty termed environmental medicine.

The film's political focus is largely confined to California. We witness the effects of powerful, unscrupulous forces operating within the state to protect their financial interests. Various parties stand to lose if legitimacy is granted either to environmental medicine or to the MCS diagnosis and its recognition as a man-made problem. In relatively brief segments Kime does suggest a national backdrop: The EPA practices willful denial; the allergists' society is trying to protect patient "market share;" and the chemical industry plays the role of chief villain with deep pockets. The tales the film tells, however, all take place in and around the San Francisco Bay Area. We see interview footage with a handful of people who constitute a microcosm of the larger conflicts.

One representative story involves a policeman who is chemically injured on the job by a spill at a Chevron oil refinery and develops MCS. He describes starting to recover after being put on disability by an environmental medicine specialist only to be ordered back to work by a company-chosen allergist, Abba Terr. He goes back and forth between the two doctors, his health yo-yoing up and down depending on who is calling the shots. At some point he initiates a law suit. While Terr is charging fees of $600 per hour as an anti-MCS "expert," the other doctor, Joseph McGovern, faces humiliation. With the Chevron case still pending, the medical board accuses McGovern, in a singularly outrageous charge, of insanity. (Of course MCS patients suffer this indignity routinely, but usually less publicly.)

Kime conducts a particularly telling interview with one doctor who averted the destruction of his career. He cheerfully admits to buying his way out of his predicament with hefty campaign contributions to first a Democratic and then a Republican governor. "Republicans are generally cheaper than Democrats," he quips. He is himself appointed to the medical board and investigation into his conduct is dropped. He comes across as more savvy, and paints himself as more cynical, than the filmmaker's idealistic father. Zane, the elder Kime, declined to use his colleague's connections to save himself in favor of legal and legislative battles that might have spared others.

The Tomato Effect takes its title from a term describing the rejection of effective medical treatments because they conflict with currently-accepted theories. Additional definitions explain the historical origins of the term and describe the more general fallacy behind the phenomenon. At the end of the film, Kime ties her narrative threads together within the context of the broader meaning. She leaves the viewer confused, however, as she arrives at a jarring last-second conclusion that fits tidily into her conceptual scheme, but contradicts earlier revelations. This final brush stroke is unfortunate and unnecessary. The film already has a sufficient sense of resolution and its emotional power lies simply in the side-by-side presentation of one person's sincere effort to lay bare the truth and the machinations of the utterly corrupt in trying to conceal it. Thanks are due to Faun Kime for her willingness to take on those dark forces bearing only the insubstantial weapons of honesty and a movie camera.

Supergirls

2006-03-30T14:32:00.000-08:00

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

2006-03-23T13:22:00.000-08:00

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

2006-03-21T11:10:00.000-08:00

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?

2006-03-10T19:55:00.000-08:00

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

2006-01-20T10:21:00.000-08:00

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

2006-01-14T18:05:00.000-08:00

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

2006-01-05T10:09:00.000-08:00

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

2005-12-23T14:15:00.000-08:00

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

2005-12-18T10:28:00.000-08:00

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.

Dr. S. vs. The Masked Avenger

2005-12-14T09:30:00.000-08:00

I recently found myself in a reckless argument over the phone with a doctor I'd never met. We were arguing over a diagnosis that I have believed for ten years applied to me. The argument was not so much about whether the diagnosis applied to me in particular, but whether it applied to anybody. The doctor was the highest authority my HMO, Kaiser Permanente, had to offer on the subject and it was refusing to allow me to see a specialist outside its walls. As it happened, the doctor was a woman with a rather thick Slavic accent. She seemed to miss the point of the more nuanced communications I attempted, but in the end I'm sure the barriers to our understanding had nothing to do with language.

Honestly, I liked Dr. S. for the direct simplicity and emotional engagement she brought to the table. She was refreshing in comparison with the standard-issue stuffy whitemale of advanced years who had written "this is not a proven entity" in my medical chart at the local facility. I was glad to know that she had triumphed to become a "Chief of Chiefs" in the Kaiser allergy world while he was only the leader of a small enemy band relegated to treating denizens of the inner city. He would never have had it in him to concede amiably, as she did at one point, "You were right, I am not your friend." I felt she spoke not just for herself but for the American Board of Allergy and Immunology, whose authority she invoked more than once.

The diagnosis over which Dr. S. and I were pointlessly arguing is Multiple Chemical Sensitivities (MCS). Somewhere around 4% of the general population report that their lives are seriously disrupted by abnormal sensitivities to molecular and particulate substances that we all breathe in on a regular basis. (New prevalence estimates) Currently, some of my least favorite inhalants are perfume, mold, smoke and diesel exhaust. I dislike synthetic chemicals, perhaps partly on principle, more than naturally-occurring substances. However, I can't live in a musty old house, or one shared by a cat, any more readily than I can live in one that has the "new" smell of volatile organic compounds wafting off its surfaces. Often the illness is initiated by an exposure to a toxic chemical. My original trip through the looking glass followed a roommate's use of a spray pesticide, Raid Flea Killer, that she had picked up at the grocery store.

One of the reasons many doctors can't accept the concept of MCS is that sufferers describe having debilitating symptoms in response to extremely low levels of airborne irritants--levels far below those considered safe. Out of their sympathy for me, most people I know relate some personal experience of intolerance to chemicals. Someone at their office wears too much perfume or they can't stand to drive behind a bus. While I appreciate these attempts to understand, and while good air quality benefits us all, my experience since I became ill seems qualitatively different. When I'm at my worst, catching a whiff of the most discretely applied perfume can feel like being dunked in a vat of it. I'll get an instantaneous headache. If I don't get away from the stuff I lose focus and get disoriented.

Dr. S. herself gets a little fuzzy at the office as her day wears on, something she attributes to less-than-stellar air quality there in the Allergy Department. She can "tough it out," a strategy of which she suggested I make more use. I think of this as the "just get over it" approach. It is the polar opposite of the strategy of avoidance, which people who have MCS overwhelmingly report to be the most effective treatment for lowering their sensitivity. (Treatment comparisons) If I tough it out one day I'll be more easily set off the next. If I tough it out for a week I may wind up with round-the-clock symptoms and reacting to everything under the sun. The recovery process is slow, unpredictable, and, so far, always incomplete.

I don't believe that the lack of a well-understood physiological basis to MCS is the primary impediment to its recognition by portions of the medical community. A thornier issue is the subjective nature of the illness. There's just no test available to prove someone has it, at least at this point. I look reasonably healthy, if a little pallid and skinny. Related health problems, like osteoporosis, might not, in fact, be related. Who's to say I'm not making it up or that it isn't all in my head? What's to keep healthy people from claiming disability benefits or redress for discrimination, or from seeking unnecessary health care or workplace accomodation? While I can testify to the fact that there is ample disincentive for anybody, sick or well, trying any of those things, it's still a legitimate question.

Now the task of pronouncing a patient delusional or fraudulent is generally left, in the end, to a psychiatrist or a psychologist. Subjectivity is the nature of their business. A wide variety of theories of psychological causation for MCS has been advanced in the scientific literature by eminent people. The theories are often in contradiction to one another and all are countered by theories of physical causation advanced by equally eminent people. The backing of interested parties with money, notably the chemical and pharmaceutical industries, tends to favor the former and the somewhat more limited resources of the patients tend to favor the latter. (Chemical industry expose) Dr. S. floated the idea that I and my ilk might be "paranoid" and touted psychotherapy (not that Kaiser was offering me any).

I'd seen the writing on the wall and abandoned the local allergist before he had gotten around to such a conclusion, but with Dr. S. I foolishly charged ahead. I argued that far from being resistant to psychotherapy I had derived great benefit from it and, in fact, had become such a fan that I was now a psychotherapist myself. Could it be that I had chemical sensitivities in addition to whatever neuroses afflicted me? Dr. S. suggested, in a patient tone, that therapy often went better for people if they didn't try to perform it on themselves. I struggled to correct this misimpression, lest it wind up in my record, but I gave up arguing for my open-mindedness, or, for that matter, my sanity.

Citing the scientific literature generally proves equally futile in these situations, but I still couldn't let things rest. I recommended to Dr. S. that she look into the most scholarly book on MCS of which I'm aware, Chemical Exposures: Low-Levels and High Stakes by Nicholas Ashford and Claudia Miller. (On Amazon.com) She had never heard of it and lamented that patients sometimes located books in health food stores that could be misleading. "The Journal of the American Medical Association recommends this book," I argued as Dr. S. angled to get off the phone. I can't blame her if she doubted this last point. I'm sure she knew, as did I, that the American Medical Association was not my friend.