Behind the Mask

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“We think caged birds sing, when indeed, they cry.” – John Webster

I’m very, very sensitive to chemicals; not just the ones everybody knows are dangerous, but the ones people use every day on their bodies and in their bathrooms and kitchens and on their sofas and in their yards. And what happens to me when I am exposed to those chemicals is not trivial. The sore throat and headache and heavy chest were uncomfortable, but not enough to stop me from living my life.

What stopped me was when I began to lose my mind. I don’t mean that I become overwrought and anxious.  I literally lose my mind when I’m exposed to chemicals. I mean, I lose IQ points. I become stupid. I also lose my ability to function normally due to exhaustion and pain.  Neurological symptoms such as numbness and tremors are also part of the mix. That’s not okay with me, and that’s why I avoid triggering chemicals.

The social implications are enormous. It’s not just that I have to be careful about what I use in the shower, or what I use to clean the toilet, although that’s part of it. It means I have to avoid other people who use the things that I can’t use. I can’t go into their homes or be close enough to them to hold a comfortable conversation. Public areas like places of worship and schools are very difficult places to be.

It seems like some people think, if they are aware of chemical sensitivity at all, that it takes a special kind of crazy to be this way. Because of the skepticism I’ve encountered and because I do not want to be defined by illness, I don’t like to talk about this.  In spite of that, I often find myself doing it anyway, feeling all the while like I’m treading on thin ice.  If I talk too long, eventually something will slip out that sounds like slap on the wrist:

“Yeah,  fabric softener really does me in.  I think it’s worse than some perfumes.”

My unfortunate victim looks away, searching for a graceful escape.  “Oh really?” she says, “I didn’t know that!” all the while thinking, What a loon!  I use fabric softener every day and I’m fine.

My face reddens as I quickly change the subject, mentally slapping my own wrist for creating an uncomfortable moment.

I have not had to stop meeting at my place of worship, the Kingdom Hall.  This is because I am allowed to sit in a back room with my air purifier and my family.  Behind a wall of windows, I am able to see and hear the meeting.  It is a blessing.  But I always wish I could be on the other side of the glass.

Sometimes I wear a mask to keep me well in toxic situations.  It gives a measure of freedom.  Without that little piece of carbon and fabric, driving our new-smelling car, exhaust fumes pouring in through the vents, would be out of the question. Using a fragranced public restroom would be a nightmare.  Even visiting some of my friends is sometimes made possible by the mask, but that is something I rarely do.  I’ll tell you why.

I hate the mask.  We all wear masks.  But the difference between the mask I wear and mask you wear is that yours is probably socially acceptable.  In his book The Love We Share Without Knowing, Christopher Barzak wrote that “nothing is more real than the masks we make to show each other who we are.”  The way we dress, the way we do our makeup or hair, and the expressions we wear on our face are all masks.  Sometimes they reveal who we are, and sometimes they conceal, if that is our intention.  But when I wear my mask, the only message I project to the world is one of fear.  The mask says, “I’m afraid.  The world is a dangerous place.”  But that is not what I want to say.

“When we know Love, fear has no value in our presence.  There is no pressure to perform and mask our humanity.” – E’yen Gardner

I don’t want to mask my humanity, I want to reveal it.  Oliver Wendell Holmes said that ” without wearing any mask we are conscious of, we have a special face for each friend.”  I want to reveal the special face I have for each of my friends.  I want my friends to understand just how happy I am to see them.  And just like I want to be able to look into the face of a friend and read his or her emotions and intentions, I would like for my friends to be able to see my face and read me as well.

“Masks were used to alienate and silence prisoners in Australian jails in the late 19th century. They were made of white cloth and covered the face, leaving only the eyes visible.” – Wikipedia, Mask

I would fit in here

I would fit in here

Masks tend to frighten us, and for good reason.  Faces reveal intentions.  We cannot read a masked face, and for that reason we associate masks with bad intentions.  Villains wear masks: Phantom of the Opera, Jason, Hannibal Lecter.  I frighten children when I wear my mask.  There is nothing worse than looking into a child’s eyes, seeing fear, and knowing that I am the cause.  That alone is reason enough for me to leave the mask in my purse.

What is the first thing that comes to mind when you see someone wearing a mask in public?  The first thing that comes to my husband’s mind is that the person is a thief or a terrorist.  He becomes very uncomfortable if he has to be seen in public with me in my mask, and I don’t blame him.  I’m uncomfortable being seen in public in my mask. Others have told me that their first thought upon seeing a masked person is that the person may have cancer or AIDS and needs protection from germs.  I don’t want people to think that about me.

And as if all that were not enough, carbon filter masks just don’t work very well.  They’re somewhat helpful for nuisance-level pollution, but they’re worse than useless in a truly toxic situation.  I once thought that I could enter a feed store as long as I had my mask on.  I was mistaken.  The mask was no match for the overpowering pesticide fumes.  I was sick for weeks, and it all could have been avoided if the mask had not given me a false sense of security.

When I forgo social opportunities that my mask might afford,  it is not because I like to be alone.  Something that has become more clear to me than ever before is that I love people.  Forced isolation has taught me that.  You tend to appreciate things far more when they are rationed.  If I were I dog, I’d be Dug from the movie Up:

“My name is Dug. I have just met you, and I love you.”

But just like Dug did not like his “cone of shame”, I do not like my mask of shame, and I long for the day when I will never have to wear it again.

I don’t want to be this way.  I’m not trying to make a political statement about chemicals.  My body does that for me.  I am an unwilling “canary in the coal mine” .

In my day-dreams I imagine myself surrounded by people: all my closest friends, my family, and new faces too.  On my face there is nothing but a smile and between me and my friends there is no glass.  I am free.

Helping Those With MCS, Awake! 2000

Good Health For All – Soon!

My Story

Photo by Patrik Jones

Photo of canary by tanakawho

 

 

 

 

 

 

 

 

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Simplicity of Wellness: Self Love

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Self-love is one of the most difficult things I have ever had to learn.  I am still learning.  It is also one of the most powerfully healing things I have ever experienced.

“I’m so stupid!” How many times have you said that, or something like it?  If you say never, I want to meet you because you are extraordinary.   I don’t know many people personally who haven’t said it or felt it at one time or another.  I used to say it constantly.  I sometimes hated my body for the way it seemed to constantly fail me.

I didn’t know at that time what I was doing to myself, but I do now.  I now understand the full implications behind ancient king Solomon’s words: “death and life are in the power of the tongue;” (Proverbs 18:21)  I had been killing myself slowly.

It was when I came right to edge of my ability to endure suffering that I began to teach myself a new way of thinking.  I had nothing at all to lose and everything to gain.

At first, I did not believe that anything I said to myself could possibly make a dent in my suffering.  Everything I had tried so far had failed: herbs, vitamins, supplements, drugs…hospitalization.   It had all failed.  My body had become so sensitized that I was reacting negatively to everything I put in my mouth or on my skin.  So what could words possibly do?

Even so, I tried.  I began to change the way I spoke to myself. My mind was like a very frightened child in desperate need of love and affection.  It needed a mother, and that mother would have to be me.  I cherished myself as I would one of my precious babies.  I reassured myself every day that I was getting better and better, that I was safe and healing.

At first it felt false.  I went on anyway. Eventually I began to believe myself.  Instead of automatic negative thoughts, I was having automatic positive thoughts.  When I felt sick or frightened, I was able to calm myself quickly.  “It’s okay,” I would say, “because I’m getting better and better.  I am safe now.  I am healing.”

I began to feel better, not just in my mind, but truly.  My energy began to return.  Pain decreased. I started having some days when I felt almost normal.  It was clear to me that my fearful, negative thoughts had helped to keep me sick.

I am still sick.  But the difference now is that I know I can and will feel better.  And I know that if there are some things that never go, it will be okay.  I know how to live well with pain.  And I know how to love and forgive my faithful and patient body.

Photo by Miroslav Vajdić

Small Planets

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“It is wrong to think that bodily health is compatible with spiritual confusion, or cultural disorder, or with polluted air and water, or impoverished soil.” – Wendell Berry

I was a hunter with her spear.  There in the distance was a the deer, ambulatory grace, caution personified.  She would become part of me, and part of my family.  All at once, I threw the spear true, and brought down my quarry.  All of her would be used, not one bit wasted, and I was thankful for her.

This is how I would play as a child.  What fascination the idea of living in a tribal society, migrating with my food supply, entirely aware of my dependence on the natural world and entirely in sync with its rhythms, held for me as a child, and still does.

Our culture is sick, and one of the most troubling symptoms of that sickness is its alienation from the natural world.  Our existence has become almost exclusively artificial. It is screened off from the sources of our health and life.  And the more artificial our existence becomes, the sicker we become.  This is proof that we are not independent of the Earth, but completely dependent upon it not just for the raw materials which we use, but for its energies, its rhythms, its sights and sounds and smells.  In short, we need to live close to earth, and we need earth intact, unpolluted.

Each human is a microcosm of our environment.  We are like small planets, reflecting almost exactly the condition of the larger planet which we inhabit.  Dump toxic waste in our waterways, and the tiny oceans of our bodies will contain that waste.  Belch filth into our air, and the filth will sully our bloodstream.  Spray neurotoxins on our food, and those toxins will pollute our cells.

I have a very deep, visceral grief connected with these things.  The home that was very carefully crafted in all its detail to be a self-sustaining, life-giving system, has itself become so compromised by the activities of humans that there is actually doubt not only about the health of the air we breath, the water we drink, and the food we eat, but about its continued ability to sustain life at all.  The very things that should give life and health, sometimes do the opposite.  Going outside for a breath of fresh air often instead results in a lungful of diesel fumes and a head that aches.  In addition to hydrating the body, drinking a cold glass of water may also dose us with chlorine, fluoride, rat poison, and prescription medication residues.  Eating a deliciously crisp and sweet apple not only provides nourishment, but also a hit of malathion.

It’s very sad that even if a person wanted to reject this culture which is so alienated from its life sources and find a place in the wilderness to set up camp, that person would still not be any safer than the deer who end up with tumors from chemical drift, the starfish that are dying of a mysterious disease all along the Pacific Coast, or the ring seals and walruses that are dying in Alaska from something that looks suspiciously like radiation poisoning.   Humans have done a pretty good job of spreading their malignant influence all over the earth.

But humans don’t have to be a plague.  God made us guardians, and I have confidence that in the future, that is exactly what we will be.

 

Photo By NASA Goddard Space Flight Center Image by Reto Stöckl [Public domain], via Wikimedia Commons

The Camping Cure For Environmental Illness

The camping cure

Living outside changes you. When environmental illness left me too sick to stay in my high-rise, I turned to nature to heal

by Jill Neimark

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But living outside changes you. You slowly unspool from civilisation, and the more you embed yourself in nature, the deeper the alchemy. Most of us sense this; it might be why camping, hiking and wilderness adventures seem to be an ever-greater obsession…

A few weeks later, we drove into 200,000 acres of national forest in North Florida. The drive from the forest edge to the campground itself takes about half an hour, through the choiring strings of gaunt loblolly pines rising like endless throngs of organ pipes reaching for the light. The hidden campground, on a spring-fed lake, is a moist and lush wonderland festooned with live oaks, pines and Spanish mosses. One lone cypress grows on a spit of land in the lake. Everybody loves it for its anomalous, gnarled, stubborn insistence on living where it unfortunately landed.

We chose the loop with water and electric. There, fitful insomnia gave way to deep sleep. (Yes, research from the University of Colorado confirms this effect; camping for one week, away from electric light, resets even the most stalwart night owl’s circadian rhythms.) My constant, aching muscle tension eased because, I guessed, I was nearly off grid, far from electrosmog. I ate fish an hour after it was caught from that pristine lake, and discovered that my body liked pure food. In short, the frisson of reactivity I had lived with for years was gone. I gazed up at a cerulean sky – a blue so blue it seemed an invisible hand had peeled wax paper off the stratosphere. I taunted the crazed mosquitoes banging against the mesh of my tent. I got stronger. We took long constitutionals, my old-fashioned choice of word for walks. A sunny day was laundry day: I heated water in a Le Creuset pot and washed my clothes by hand, hanging them to dry on a nylon line strung between trees. I loved to bury my face in their fresh scent.

Most striking, however, was my shift in mood. Rumination and anxiety seemed to melt away. And it was not simply the cliché of being in nature, for all nature was not equal. Over the next few years of frequent camping, I found I could always correlate clean air with clarity of mind and mood, as if my body was a pollution-sensing device calibrated to detect tiny shifts.

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Evil Dust Bunnies

My son has battled a nasty case of bronchitis for the past couple weeks. He’s always been very sensitive to many things including foods, chemicals, and dust. This recent bout of illness seems to have sensitized him even more. At first I didn’t know what to do. He kept having coughing fits that would end in retching and vomiting. Even his inhaler didn’t seem to help much. I’m incredibly careful about chemical exposures in our home, so chemicals were un unlikely culprit.

I began to notice that he would start a coughing, gagging fit if he got near the computer or if he went into his bedroom. It gradually dawned in me that his dust sensitivity had intensified and that those two places were extra dusty. I ended up having to turn his bedroom upside down to reduce the dust levels. After a more than thorough cleaning, he was finally able to sleep in his room without ending up in the bathroom vomiting from an asthma attack.

I went through this before with his younger brother during a particularly bad year for respiratory illness. My youngest son contracted RSV that year, and it sent him to the hospital with severe asthma on three different occasions. The third ER visit resulted in his admission to the hospital where he stayed for two days, heavily medicated and on oxygen. I learned that year that I would have to keep my house spotless of dust if I wanted my little boy to be able to breathe. It was exhausting, and I’m not looking forward to another whole winter of daily dusting.

Household dust is not just dirt.  It’s far more sinister than that. Dust tends to contain particles of all sorts of chemical pollutants brought into the house via shoes, windows, and ventilation. Whatever toxins happen to exist in our neighborhoods are likely to end up in our house dust. In addition, and even more worrisome, is the fact that so many of our household furnishings and appliances leave toxic residues that end up in household dust. We’re hearing a lot about toxic fire-retardant chemicals lately. Most mattresses, furniture, and electronics are impregnated with these chemicals. Nearly 100% of Americans have these chemicals in their bloodstream, and it is discouragingly difficult to find affordable furnishings and appliances that are free of fire retardants.

For now, all we can do is fight the evil dust bunnies.  Hopefully the future will be less toxic.

For more information on toxic fire retardants, check out Slow Death by Rubber Duck – The Secret Danger of Everyday Things