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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Use Safer Products

(Continued from Simplicity of Wellness: Love for the Earth and its Creatures , Grow and Cook Your Own Food , and Eat Local)

tub time

As I sit here writing with raised eyebrows, I wonder what I can say about this.  Many of the people who know me well have already gotten an earful about the dangers of toxins.  So much so that I’m sure they would rather not hear any more.  And I get it, I do.  No one, including me, wants to focus on negative, scary things.  Nobody wants to feel overwhelmed.  Nobody wants to find out that their favorite products might not be so good for them.  I’d rather not have to write this, really.  But I just cannot leave it out, it’s too important.

Anytime we start talking about the avoidance of danger, the difficult subject of the nocebo effect comes up.  A nocebo is the opposite of a placebo.  Just as a placebo can cause a person to feel better, a nocebo can cause an adverse reaction.  For example, if you were told that the glass of orange juice you just drank contained arsenic, and it was then explained to you what arsenic does, there’s a good chance you would start to feel sick even if the juice was perfectly safe.  We certainly can think ourselves ill.

So why focus on toxins and pollution if it can have such a negative psychological effect?  I admit that I feel conflicted about that.  I would rather focus on positivity.  But what if the juice in the above illustration really did contain arsenic, but nobody would tell you?  What if the levels of arsenic were low enough not to kill you quickly, but just enough to make you feel vaguely ill?  What if you unknowingly continued drinking the arsenic laced juice for many years, damaging your body little by little, completely unaware of the reasons for your failing health?  Far from being mere nocebos, like the juice, some things really are toxic, and when people avoid them, they feel better.  I’ve seen it time and again.  The other reason is that many commonly used household products pollute the earth, and that right there is reason enough.

So before considering this admittedly difficult subject, it’s well to remember what wellness is all about.  It’s about love for God, self-love, love for others, and love for earth and all its creatures.  It’s about love, not fear.  So while it is necessary to understand some things about toxins so that we can protect ourselves and our families from undue harm, we must keep in mind that anxiety serves no purpose.  But action based on knowledge does.

serenity prayer

 So here’s the skinny: our world is inundated with toxic chemicals. You already know that, right? But something you may not know is this: the chemicals most likely to harm you are not “out there” somewhere. It’s true that industry pollution is a big problem. But for most of us, our biggest and most damaging exposures tend to be much closer to home. They come from places like the Round-Up container in the garage, the box of dryer sheets in the laundry room, and the myriad self-care products lining our bathroom counters and cabinets.

This is difficult for many people to wrap their heads around.  It certainly was for me at one time.  We’d like to believe that the products we use in and around our homes, and especially those we use on our own bodies, are safe, that government agencies have our collective backs.  They wouldn’t allow these things on store shelves if they were dangerous, right?  Wrong.

If you’d like a detailed explanation, it is in this document by the Lowell Center for Sustainable Production:  Presumption of Safety: Limits of Federal Policies on Toxic Substances in Consumer Products

From the document:

Despite the fact that most consumers believe that everyday products are thoroughly tested for dangerous chemicals and determined to be safe by government authorities, the reality is that existing regulatory systems leave significant gaps in their capacity to adequately protect consumers from chemical hazards in these products.

One of the reasons listed in the article for the failure of government agencies to protect us is the fact that many safety standards are actually voluntary, meaning that companies can opt out if they don’t want the bother of adhering to a higher standard.  For example, the fragrance industry is largely self-regulated.  It’s a case of the fox guarding the henhouse. Another reason is that the capacity of certain government agencies is limited due to budget constraints.  Also, current laws do not actually require companies to test most products for safety hazards.  Weak laws and limited governmental capacity ensure that, inevitably, some unsafe products will  end up on store shelves.

You’ve heard the bad news.  Now here’s the good news.  Great news in fact.  There are more companies making safe, non-toxic products now than ever before.  In the past, we may have had to sacrifice quality and performance in the name of health, but not anymore.  Many of these products work, and work well.  Check out EWG’s Skin Deep Database , and Guide to Healthy Cleaning .

Also, an exciting new trend has emerged: DIY everything.  Because so many people are experimenting with making their own cosmetics and cleaning products, the internet is busting at the seams with well-tested recipes.  Non-toxic is now fun!  One of my favorite sources for great recipes is the Wellness Mama website.

The bottom line is this: when it comes to chemicals, we have to watch our own backs. Government and industry is not going to do it for us.  But we are not powerless.  Education and action can make all the difference.

Multiple Chemical Sensitivity – A Mysterious Malady, Awake! 2000

Hidden Chemicals in Perfume and Cologne

Extreme Chemical Sensitivity Makes Sufferers Allergic to Life, Discover Magazine

Infographic by violet79

Photo by familymwr

Unsafe – The Truth Behind Everyday Chemicals

http://www.linktv.org/video/9214/unsafe-the-truth-behind-everyday-chemicals

This video may seem scary, but if it motivates you to toss the toxic products in your home, it’s worth watching. Toxic chemicals effect all of us, not just the ultra sensitive. But you can dramatically reduce your exposures. High exposure levels are not unavoidable.

Video: A Family Learns About The Products They Buy

Seriously "Sensitive" to Pollution

Chemerical is a film about a regular family as they learn about what’s lurking in their products, struggle to come to terms with the new info, and then learn how to make safer changes in their lives.

“Chemerical” explores the life cycle of everyday household cleaners and hygiene products to prove that, thanks to our clean obsession, we are drowning in sea of toxicity.

The film is at once humorous, as we watch the Goode family try to turn a new leaf by creating and living in a toxic free home, and informative, as director Andrew Nisker works with many experts to give audiences the tools and inspiration to live toxic free.

Chemerical

Andrew Nisker weaves visits to the Environmental Health Clinic in Toronto,

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