Judgment Day

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

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

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)

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

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

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

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

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?

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

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

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

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).