Spiritual Support

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

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

"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

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.