Supergirls

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

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

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

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

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

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

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

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

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

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

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

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

Movie Teaser

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

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

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

How the Avenger Got her Bionic Nose

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Big News on Biomarkers?

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

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

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

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

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

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

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