Last Build Date: Wed, 16 Sep 2015 16:17:15 +0000
Sat, 17 Apr 2010 20:16:00 +0000There 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.
Wed, 24 Feb 2010 19:22:00 +0000When last we heard from our intrepid adventurer fortune was not favoring her, yet her spirit remained undaunted.
Mon, 10 Aug 2009 19:41:00 +0000And the winner is...
Wed, 22 Jul 2009 17:27:00 +0000Two 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, f[...]
Wed, 17 Dec 2008 01:06:00 +0000Where 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 dominatedas 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 eternaldoes not want to be bent by us . . .The poem ends with the suggestion that one grows. . . by being defeated, decisively,by constantly greater beings. [...]
Fri, 14 Nov 2008 21:00:00 +0000Every 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!"
Tue, 21 Oct 2008 00:32:00 +0000"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. [...]
Wed, 19 Sep 2007 22:46:00 +0000The 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 e[...]
Thu, 12 Apr 2007 03:03:00 +0000I 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).
Thu, 08 Mar 2007 17:49:00 +0000Check 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.
Wed, 07 Mar 2007 14:59:00 +0000Despite 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. [...]
Mon, 12 Feb 2007 18:58:00 +0000A 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. [...]
Mon, 05 Feb 2007 00:15:00 +0000What 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.
Wed, 31 Jan 2007 16:28:00 +0000There 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. [...]
Tue, 30 Jan 2007 21:16:00 +0000I 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.
Mon, 29 Jan 2007 21:23:00 +0000We 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.
Sun, 28 Jan 2007 23:29:00 +0000Breathing 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.) [...]
Wed, 17 Jan 2007 21:57:00 +0000MCS 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.)
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:
Sat, 13 Jan 2007 17:19:00 +0000Statistics 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 top[...]
Sun, 31 Dec 2006 22:20:00 +0000Check 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.
Sun, 26 Nov 2006 17:23:00 +0000The 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. [...]
Sun, 13 Aug 2006 17:41:00 +0000Attending 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[...]
Fri, 26 May 2006 17:09:00 +0000Want 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 bre[...]
Mon, 08 May 2006 01:03:00 +0000Last 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.)
Thu, 27 Apr 2006 15:38:00 +0000I 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[...]