Posts Tagged ‘chemical sensitivity’

Last night I attended the Vancouver YWCA Women of Distinction Awards as a nominee. The nominees were truly an amazing group of women. I was truly impressed with the achievements and passion of the group.  I recognized that, collectively, there were many world changers sharing the stage with me.

I did suffer some chemical sensitivity issues early in the evening, especially when we were sent into a tiny room, where the newly perfumed women were gathered to practice going on the stage. Oxygen at maximum was not stopping the symptoms of watery eyes, extreme irritability, inability to concentrate and the strong feeling of a need to escape. The inner me was trying to stay calm but the inner me disappears and the animal me comes to the fore. Lucky for me, my dear (and I cannot emphasize this word enough), dear, dear friend, Dr. Lynn Elen Burton, acting as attendant (and she is not that kind of doctor, she’s an academic) was with me trying to stave off the reactions she has seen up close. Fortunately, in their wisdom (or was it due to Lynn’s pleasant attentiveness to the situation and her ability to communicate with the volunteers?) those in charge allowed me to wait by the ramp rather than repeating my entrance and exit from this little room.

From that point on, the evening was delightful. I was flanked by my scent-free friends on both sides through the dinner. Long time friends Lynn, and her husband Mario Piamonte, former Anmore Village Councillor, attended to my every need at my right. On my left,  Joe Trasolini, MLA for Port Moody-Coquitlam and Gray Giovannetti. With tickets to the event at $200.00 each, most of my friends were eliminated from participation. How lucky I was to have these four with me!

It is easy to become caught up in the competition when the reality of the event is quite simple. It has two purposes. It is to raise awareness and much-needed funding for the wonderful programs for women sponsored by the YWCA. And, in doing so, this night of celebration raises awareness of some of the women in our community who are truly outstanding in several ways. These are identified as:

1. Breaking new ground or old barriers
2. Showing vision, creativity and initiative
3. Being a leader and role model
4. Guiding, supporting and encouraging the development of others
5. Participating actively as a volunteer
6. Being recognized by her community for her contributions (i.e. awards, accolades)

I am truly grateful for the recognition and the opportunity to participate.

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

I was allowed to present this “STATEMENT” at the second day of my arbitration proceedings. I suppose it is wise not to comment publicly until the proceedings are over. We meet again in December, 3 1/2 years after the back to work process began.

BCTFlogo@125I sit before you today to be judged. I placed myself here long ago when I initiated the back to work process in discussion with my doctor in 2006. My life, my health, my vulnerabilities have been shown to you and I welcomed it for one reason…I felt it was my obligation to return to the workplace as my ability to do so had returned.

What is required for a teacher to work? I learned from a brave, young ventilator-dependent quadriplegic hired by a progressive school district (Vancouver) that a strong will and a functional mind were the only requirements. A functional body was not required. If young Johanna Johnson

Johanna

Johanna

can do it, I had every obligation to return to my career.

As a visibly disabled person in a school, I give a message to disabled students. They can aspire. They, too, can have careers in what they perceive to be important jobs dominated by the able-bodied. But more importantly, I educate the able-bodied, because they need to know that I am not a mere curiosity. I am not what they see. I am a human being; a teacher…a more than capable teacher, who, given a few environmental adaptations, can more than function in my chosen career.

Most of the people who wrote letters back and forth, made decisions against my presence had never met me or met me only once. With all we know about brain science and the function of “the interpreter” in filling in details missing in actual interaction, I am in awe of this entire process.

There are many things to applaud in the stacks of paperwork I have studied. Some have learned about the use of green chemicals for cleaning. There have been reports from other schools and institutions on scent-free policies, the new policy for Anaphylactic Safety in Surrey School District. … But according to the BC Lung Association 3 out of 10 people are chemically sensitive and the numbers are growing. I maintain that every living organism is “chemically sensitive” given large enough doses in small enough enclosures. The reactions may just differ. Some people break out in cancer after accumulating the chemicals in body organs. I have the GOOD LUCK of being able to detect small quantities and having the need to escape quickly. There are many indicators in our environment that human beings as a species are succumbing to chemical pollution. Sperm counts in humans are at 50% of what they were a few decades ago. Knowledgeable parents would welcome a chemical free school and soon it will be the norm. This year, already, parents are grappling with the need to buy PVC free school supplies and worrying about all the previous years when they did purchase these products.

(Paragraph that originally appeared here has now been removed at the request of my employer.  It was not meant to upset anyone and was, as far as I know, only a statement of facts. I apologize if anyone found it offensive. removed January 30, 2010)

I sit before you, a human being, flawed, as are we all. My desire…to do what’s right and return to being a contributing member of society despite my disability. I am a teacher.