Tag Archives: barriers

MCS/ES: Societal Neglect = No More Fun and Games for Life on the Planet

 

Please take a moment to feel your heart beating.
Not everyone can do this anymore.

While some progress has been made, it’s still too little,
too late for far too many people.

This will not change until more people who have MCS/ES come forward with their stories, and more  healthy people start advocating and helping us in daily life, as well as pushing governments and medical institutions to pull their heads out of the sand (and industry pockets) and get into (at least) the 20th century as far as the very serious environmental and related health issues are concerned.

 

“Business as usual is a disaster”
Robert Watson

 

“Unfortunately, many physicians, employers, family, and friends
are in effect assisting in suicide through their disbelief.”
(and neglect)

“The Consequences of Disbelief”

“Twelve years as an advocate for the chemically sensitive has led me to the sad realization that a large number of chemically sensitive people have taken their own lives and many others are inching ever closer to that decision because they find it such a daunting task to locate a safe place to live or work and are rapidly running out of money. And at the same time that they are engaged in this herculean struggle, far too many of them are facing a discouraging skepticism from those about them.”

 

From
“Amputated Lives: Coping with Chemical Sensitivity”
2008
By Alison Johnson
With a Foreword by L. Christine Oliver, M.D., Harvard Medical School

 

Links to several chapters of the book, where stories about people’s lives are featured are available here:

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What’s it Like to Have MCS/ES? Part 2: Curbs

MCS/ES (multiple chemical sensitivities / environmental sensitivities)  is a disability recognized by the Canadian and Ontario Human Rights Codes. There are over a million people with doctor diagnosed MCS in Canada, and so many more all around the world.

In the US, the latest prevalence study found that “among the population, 12.8% report medically diagnosed MCS and 25.9% report chemical sensitivity.”

The term ‘sensitivities’ seems to trivialize the condition in many people’s minds.

You may wonder what’s it really like then, if it’s not trivial?

 

 

From Amy RW Marsh:

I just wrote this analogy for a person who needed one in order to understand EI/MCS:

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What’s it Like to Have MCS/ES? Part 1: Arms, Brains, and Legs

MCS/ES (multiple chemical sensitivities / environmental sensitivities)  is a disability recognized by the Canadian and Ontario Human Rights Codes. There are over a million people with doctor diagnosed MCS in Canada, and so many more all around the world.

The term ‘sensitivities’ seems to trivialize the condition in many people’s minds.

You may wonder what’s it really like then, if it’s not trivial?

‘have legs or brain some days but not others’

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot (Part Four)

Part Four of Four

(Part One, Part Two, Part Three)

Guest post by Che Ray

 

If you are hosting the family in your own home, it is true, you must take every precaution.  Otherwise their stink will be there long after they leave.  If they come in with stuff and it gets on your furniture, it will be bad.

Here is a suggestion: let them know in advance that before they enter the house they will have to be willing to have you test whether they are wearing anything that is triggering for you. Then when they arrive, if you have a good friend who gets what you are dealing with, have them first go to the cars of the people who are coming. He or she can do a preliminary test. If she senses something she can be the one to tell them what the problem is.

If you have sent them detailed emails in advance of everything they need to eliminate (she can even bring the check list to the car) then this will come as no surprise. They won’t be mad at you, they will feel bad. And that’s OK. That is the part of the learning process on their end.

If they make it to the front porch, you go outside and test again.  When you first greet them, I suggest having your mask on.  It will let them know right away what the situation is.  Take it off briefly to assess the situation.  If you feel comfortable taking it off at some point later in the evening, you can simply say, I am going to do a test to see how I do.

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot (Part Three)

Part Three of Four

(Part One and Part Two)

Guest post by Che Ray

 

Here are some things I would recommend: even when it’s a stuck in bed day…

I: Don’t try to do too much physically. Definitely let your body rest, but also do something active to restore your mind like listen to a meditation talk or guided meditation. Tarabrach.com or jonathanfoust.com are great!  I recommend them highly.  This will help you get restorative rest, which is a much deeper, more relaxing experience.

II: I only recently discovered an online language tutorial called Mango. It’s free if you have a public library card. It is an awesome interactive language learning app. It has everything from Spanish to Swahili, to Pirate (really, it’s super fun and funny!) to Yiddish; dozens of languages.

I have a brain injury from the toxic exposures but have not been able to get the kind of occupational therapy I need which has been depressing. One day I thought, what can I do to keep my mind stimulated?  And I came across this. Even if you don’t want to dedicate yourself to learning a new language, 10 minutes of mimicking Pirate language is going to make you laugh and feel better. And it’s good for your brain.

 

III.  You are a superhero.

Recruit other people in your life to join your fight.

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot (Part Two)

Part Two of Four

(link to Part One)

Guest post by Che Ray

 

Overarching rule of thumb:

Talk about MCS/EI/TE/TILT like you are talking about cigarette smoking or HIV exposure.  What I mean by this is:

A: It is a given fact that second hand cigarette smoking causes disease.

We didn’t know this for a long time because the tobacco industry didn’t want us to know. So people had to put up with cigarette smoke in their face. Now it is not only not tolerated, it’s illegal to smoke in many places.

Explain to people that the elements in cigarettes that really kill people are often the exact same chemicals used in fragranced products.

I also say this condition is like smoking and HIV in that these diseases, more than others, DEPEND on other people caring about the health of people (like us) as much as they care about themselves.

 

B:  We have NOTHING to apologize for, so DON’T DO IT.

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How to Survive the Holidays with EI and (Possibly) Not End Up Alone or Wanting to Give Your Family the Boot

Part One of Four

Guest post by Che Ray


For those of us with EI (environmental illnesses), the holidays are especially brutal.  What were once happy times surrounded by family and friends become increasingly isolating experiences.  Depending on how bad off we are with things like fragrance sensitivity (which, next to fruit cake is the worst part about inviting Aunt Betty) or severe fatigue (where you just want to curl up into a ball under the dinner table), more and more we are faced with having to choose between trying to brave a family gathering only to end up sick in bed for weeks or convincing ourselves we will just stay home and write that novel.

In response to a heart-felt plea for help from one newly aware Canary who was torn between wanting to accommodate her family and fear of going overboard and getting sick, I wanted to reach out to her and give her some advice I wish someone had told me.  This is more or less what I said:

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