Posts Tagged ‘MCS’

I was excited to see the PECHA KUCHA format for presentations. My tenant, Jay Peachy, was the very first presenter on Coquitlam’s very first PK night. He was brilliant. The whole event was exciting, fast-paced, interesting. Reminiscent of TED talks, but with the feeling of community and an artsy edge, I was immediately drawn in… I should do this, I thought.
So with Pecha Kucha VOLUME 4 looking for presenters, I volunteered, knowing what I wanted to say but not recognizing fully the limitations of the format. I am a teacher, thought I. Timing, meeting objectives, recognizing diverse listening styles…no problem…
As I began to prepare, I realized that I had a lot to say. Will it fit into the 20 x 20 format? PECHA KUCHA, the Japanese term for chitchat, is a simple idea (so they say). The presenter has 20 images with 20 seconds to speak to each image. The pace is rapid. OKAY, this works for design but I want to educate, elucidate, leave a powerful message that has my audience ready to, at the minimum, understand some changes they might need to make. But even better, I would like them to leave feeling the need to themselves advocate for change. Can I do that in less than seven minutes – telling my whole story with the pace imposed by the twenty second slide change? This really is a challenge. I am taking this art form and challenging it as well as myself to deliver.

That written, time to stop procrastinating and work on that timing…

I suppose being a teacher is being an advocate. One advocates for one’s students. We try to empower them in a system that denies rights to minors. We give them skills and confidence…anything we can to help them advocate for themselves but when they cannot we step in for them, fierce as mother bears.

And then there was the women’s movement. The supposed “third wave of feminism” taught me to challenge political structure and power holders while taking backup people with me. A lone voice is not as effective as the voice with many backers.

Ultimately, I became an advocate because in my greatest time of need, some people stepped (no, they wheeled) forward into my life and intervened, when a system powerful enough to put me in a nursing home for the crime of being disabled, chemically sensitive, and vocal threatened my freedom and my survival.

Paul Gauthier wheeled into my life and assured me that I was not being unreasonable when I requested scent-free care workers, or notice before nurse administrators arrived in my home. “If they tell you you’re being difficult,” he told me, “It just means you’re still alive.” How right he was. And how close I came to that precipice. When an institution, a system, a dangerous machine has control over your life…even those of us who are strong-willed and intelligent can be swept away. But thanks to that young man, and another wheeled advocate from the BC Paraplegic Association, Norman Haw, all that conspired to sweep me away failed. I emerged, stronger, independent, flourished…in control of my own life and care. So what else can I do but help others? And since I am not ALLOWED to work for pay, it is with pleasure that I try to help others navigate the medical system, or, as in my case, not be swallowed by it.

And as I give workshops, I often pay tribute to Paul without using his name. As it happens I was giving a workshop to a group of Medical Office Assistants on Multiple Chemical Sensitivity and who was the organizer? Paul’s mother-in-law. She recognized the man I described from his good deeds, methinks…and she inquired if I knew her son-in-law. It’s a small world.

And I may not have thanked you in this decade, Mr. Gauthier, so thank you, once again!

Do you see a disconnect?


The Metro Waste Draft Plan includes the building of new Waste-to-Energy facilities inside and/or outside our region.

Here is my speech to them last night in a building filled with VOLATILE ORGANIC COMPOUNDS forcing me to speak while attached to an oxygen tank inhaling O2 at 5 litres per minute:

First I want to thank you for adding this additional Public Consultation evening to your agenda.

My name is Elaine Willis and I have had the privilege of being a teacher for most of my adult life.  Because of what has been labelled Multiple Chemical Sensitivity, the privilege of continuing my chosen profession, for pay, has been suspended.

People with an exquisite sensitivity to toxic chemicals are often called “canaries.” The name comes from the old practice of miners who took canaries with them into the mines; if the canary died from toxic air in the shaft, the miners had time to escape with their lives. People with chemical sensitivities are the canaries of the modern world.

In 1999, a consensus was reached among a large group of specialists in defining Multiple Chemical Sensitivity as

[1] a chronic condition

[2] with symptoms that recur reproducibly

[3] in response to low levels of exposure

[4] to multiple unrelated chemicals and

[5] improve or resolve when incitants are removed

THE BC LUNG ASSOCIATION website tells us that some 30% of Canadians already report adverse reactions to some chemical products.

In layman’s terms, people with MCS react unfavorably when exposed to any amount, from minute to gross, of toxic chemicals too numerous to list. Symptoms vary from fleeting to severe and might include rapid heart rate, shortness of breath, fatigue, flushing, dizziness, nausea, coughing, difficulty concentrating, problems with memory, migraine, or even life threatening seizures, anaphylaxis or respiratory distress. This chemical sensitivity condition is not rare and the numbers of people who have it are growing. I, myself, had a stroke caused by chemical exposure.

But the truth is, it’s not just chemically sensitive people who are being affected by a toxic environment. The general public is being exposed to tens of thousands of chemicals that didn’t even exist until a few decades ago. Many of these chemicals, some found in everyday household products like cleansers and cosmetics are known to be or are suspected of causing cancer, reproductive problems, developmental disabilities, and heart disease.

What has this to do with the Metro Solid Waste Management Plan?  These products will be disposed of – they are mostly unregulated, untested and uncontrolled. A look at Metro Vancouver’s Vision Statement which includes social justice and compassion, a beautiful and healthy natural environment and a commitment to the well-being of current and future generations shows a disconnect. How can the creation or even the consideration of the creation of mass incineration be on the table? How can any emissions into the air be considered acceptable?

Let’s go back to my teaching career – my 1990’s classroom. I hope you can try to visualize this… I did some early research projects with robotics using LEGO bricks and Apple computers for programming. Students as young as six years old worked in groups to create and program moving objects, many of which were vehicles. Of course, given their limited experience, either with machines, or with LEGO, the creations needed to be changed in order to function. I noted two distinct types of engineering strategies. There were those who saw the flaw, took the whole thing apart and started again with the new insights – and those who kept adding parts to compensate for the flaws, creating a bulkier machine, which may or may not function – flaws addressed, but in the end when the motors were attached, usually parts would go flying off in all directions. The analogy here is Metro’s DRAFT PLAN…many helpful citizens have pointed out the glaring flaw. Please don’t attach the motor!

When I was attending university, I had a professor, Milt McClaren, who was already taking the bus when most of us didn’t know what Environmental Studies were…the most important thing he taught me…There is no such place as away! We can’t incinerate the waste and think it is gone. The nanoparticles will go into my body. The ash will still go into the landfill. The filters and scrubbers, they have to go somewhere too.

Thank you.

And my subsequent comments left on the website where responses are welcomed:

http://www.metrovancouver.org/services/solidwaste/planning/Pages/Comments.aspx

and posted to the Tri-City Green Council website and Facebook:

DRAFT METRO WASTE PLAN: many people feel that the draft plan is a sham.. I am hopeful that I did not waste many evenings and much sober thought trying to convince the committee that the science that led to the draft plan contained some flaws and needs some revision…the hard work of the committee is appreciated – but …changes MUST occur. I had to leave due to air quality. I have now saved the taxpayers much money in medical expenditures. By preserving the airshed, we preserve the health of our citizens – I am not alone – I am your canary – with a system sensitive enough to detect that our modern world, industries, building materials, and endless pollution has reached a critical moment in time. Let’s turn this plan around now! The decisions made by METRO VANCOUVER can demonstrate leadership to the world – let’s do so!


NOTE: information about MCS copied from www.thecanaryreport.com – if you are interested in MCS or already show symptoms, this is a great resource for you.

My family doctor (primary care physician) has asked that I prepare the letter that will go to specialists prior to my first arrival. It needs to elucidate in few words what to do to make my visit safe. It must also explain MCS (Multiple Chemical Sensitivity) to a physician who may have had no education about or exposure to a patient with the kind of symptoms I experience. My symptoms can be mild (for me) which may include coughing, asthma, brain fog and increased ataxia (you see I already I have ataxia – the hereditary kind). Or, they can be medium, slurred speech, severe ataxia, altered blood pressure, complete inability to focus or answer questions, stuttering, poor word-finding skills and dizziness. And of course, the biggie…anaphylaxis…and it happens too often.

So, my desire with this post is to engage the assistance of others with MCS. What should be included in a letter to a physician that arrives before WE do? First appointment of the day? No waiting? This is a brainstorm – so all ideas are accepted. I will choose the ones I want for my letter and post it. Maybe it will be useful for others, too!!

I appreciate your willingness to see me as a patient at your eye care centre. I note that the first time I had a reaction to the eyedrop the resident (I assume) put in  my eye after I assured him I would react was called “fainting” by you. I may not have corrected you.  The combination of the reaction itself, the epinepherine, your freshly fragranced colleague and the long wait in the chemically-laden carpeted office did not aid in my being  my most cognitively competent self. Sir, I did not faint. My reaction to the eye drop, as predicted, was anaphylaxis. Thankfully, my attendant was quick with the epipen.  The staff present was a little surprised by the reaction and apparently was relieved that Geoff took action.

With regards to yesterday’s appointment, no, I am not epileptic. What you observed firsthand and up close is a rather classic reaction to the presence of chemical fragrance. I am pleased that you were open-minded enough to follow the instructions of my attendant and get some oxygen before I deteriorated to the point where I needed the epipen as the drug is very hard on my body. I understand you also agreed to move the patient who was very fragrant away from the immediate proximity of your examining room to help ameliorate the situation. I am so sorry that your coffee spilled all over your papers and desk area. I am pleased that someone arrived to help you clean it up so quickly. It is clear by the two hour wait I had in order to to see you that you are a very, very busy specialist. Your kindness during the crisis is truly appreciated, as well as your apparent new insight into chemical sensitivity. When both Geoff (my attendant) and I assured you that the reaction you observed was not as severe as I experience, and that I am not the most highly chemically sensitive person in the world at large, we were being most sincere. When my speech recovered enough to explain that rather than an allergy, it is a toxicity – and that the reaction is similar to what you might observe if I was intentionally huffng gasoline, I noted a glimmer of comprehension in your eyes. Similar products, you see! Toxic petrochemicals! Your office is a paper bag for me. And it can’t be good for you, either. Did you note that the oxygen cleared up the problem in due course… so, definitely not a seizure. If you really are able to learn from a patient, this may be it. Chemical sensitivity is real. You have observed it and those signs in your office and adjacent areas may be worth enforcing as I explained. Yes, a simple explanation to patients when appointments are booked telling them the office is scent-free AND WHAT THAT MEANS would be a good first step. If you had NO SMOKING signs and didn’t enforce them, would it really be a NO SMOKING office?

I hope that observing my anaphylaxis, and near anaphylaxis were educational events for you…enough to influence your practice in the eye clinic.

Respectfully yours,

Elaine Willis

My son runs (is that the right word?) an amazing website – SFF AUDIO.The homepage states :

“Our goal was to tell the world about the cool stuff we were listening to. Since then we’ve added a bunch more contributors, reviewers, and even an editor!

We think audio is the best medium for Science Fiction literature and drama. We’re not against the dead tree, cathode ray, and celluloid versions, we just know them to be the inferior medium for transmission of story, mood, and ideas.

Before the creation of printed books, stories were told by the Greek aoidos, the Celtic bards and other poets of the human voice. After the printing press allowed for greater numbers of “novels” to be written, the families and friends in all the households that could afford to buy them would gather together and spend their evenings reading books aloud to each other. In the late 1970s the audio cassette allowed for the creation of a new industry, a new medium, the audiobook. Over the last three decades new technologies, CDs, MP3-CDs, and especially the portable MP3 player have made the audiobook even more popular.

Audio drama, too, is our passion. It goes by many names: audio theatre, audio cinema, and of course “radio drama” – the name of the place where it got started. We love this stuff. And if you’re reading this, we bet you do too.”

This endeavour uses a lot of his time, and like most such undertakings, is volunteer work. Yet I feel a sense of awe and pride because it is an amazing site. And, when I am a contributor, despite the fact that I am a teacher, a relatively accomplished writer and blogger myself, I want my work to be more than perfect when submitting to SFF AUDIO.

It took me a long time to listen to The Year of the Flood. On occasion it was because it moved slowly, but more often than not I was relistening to a section, making notes for my review. I wanted my review to be unique. Not just the content, I wanted to focus on how the audio experience would differ from the reading experience. In my advancing years I seem to be listening to a lot more non-fiction than fiction. I seem to save fiction for vacations, of which I take few because of my MCS (MULTIPLE CHEMICAL SENSITIVITY) status.

So although the review is short, and somewhat critical, please note that this is a book about the future where going oputside requires a “nosecone”. Masked breathing is the norm.

So if you want an interesting read or listen, and the depth of Atwood’s literary imagination complete with ups and downs doesn’t scare you off, give The Year of the Flood your time. Who knows, on-line BLOGGY book club?

Link to my review complete with a listening sample:

SFFAUDIO REVIEW THE YEAR OF THE FLOOD

The final day of my arbitration was held on Thursday, December 10th, 2009 in Coquitlam, British Columbia. I was very impressed with the lawyer for the union (for ME!) as he presented the closing arguments for our case. It was clear that he had developed personal respect for me, a deep and persoanl respect for the environmental issues surrounding the case and ultimately a fine argument in law.

The experience, although harrowing over the years of waiting ,  was indeed INTERESTING and  if nothing else, good or bad,  SCHOOL DISTRICT 36  vs BC TEACHERS’ FEDERATION  ELAINE WILLIS -DUTY TO ACCOMMODATE will ultimately set a precedent in arbitration law.

And my lawyer truly did such a fine job in the end. The professionalism I couldn’t see at all in the beginning shone through in spades.  The beginning of the journey was extremely  rough – he didn’t, I feel, see me as a person – didn’t see past my disabilities. In the end he saw more than that. In the end there was, I believe, mutual respect. He recognized that I am a teacher and quoted me several times. I was touched. His words were sincere, eloquent and heartfelt – and if I taught one person about the environmental impact of chemicals as opposed to my need for a fragrance free workplace, then I did a good thing! So I have to be happy in the end, whatever the outcome.

The battles for those of us with disabilities, and especially for those of us with Multiple Chemical Sensitivity, are huge. There are many false beliefs about our abilities and the nature of our disabilities. The truth remains that we are people, to be treated as all people, with dignity, equality and respect. We are not to be shut away in our homes as society continues to demand of us.

Education is enlightenment. I WILL CONTINUE TO BE A TEACHER!  This process may enable me to do so for a living as well!

Not too much commentary – I will try to let Glenn ter Borg’s film speak for itself. Believe me, there are hours and hours of film that went into making this 10 minute segment of the Hindsight Years. Glenn says mine was the most difficult to date. Here’s the link… enjoy!

The Hindsight Years – Elaine Willis