Ekaterina’s Story from Canada

 

The following email I recently received from a Canadian is a strong reminder that society is the loser when people of Ekaterina’s intelligence and drive find it difficult to locate a workplace they can tolerate and when a country like the United States at times ignores the huge contributions made by immigrants. In her very well-written email Ekaterina told me, “English is my third language; language is my gateway to everything, I love words.” She left Russia with her parents at age two when the Soviet Empire was collapsing and then lived in Israel until she emigrated to Canada with her parents when she was ten.

 

I understand the yearning that many chemically sensitive people have to leave an impact on society, to aim to amend policy to improve the quality of life, especially when so many of us are affected by something outside of our immediate control. Industries exhibit conflict of interest when it comes to funding research that has anything to do with possibly eliminating a lucrative product that brings in cash. For instance, no one here is investigating the link between an environment heavy with agricultural pesticides and the development of multiple sclerosis in communities of farmers in Alberta, even though patients frequently tell us they think it is environmentally related because clusters are often diagnosed in their community. Society gives them drugs and hopes for the best as they become disabled. It is heartbreaking. 

Your website is a wealth of information, and I do agree that there are strange sites out there and most of my physicians have no clue how to approach this matter. In the past year and a half of my investigations, I have heard everything from “there is no cure” to “build yourself a chemical-free home and work remotely from home” to “get another job.” The latter advice came from a manager at the hospital where I work, where a scent-free policy is supposed to be in effect but is not. I was in disbelief and my hopes began to fade slowly until I learned of the link between multiple chemical sensitivity and the immune system. Now my main focus is on detoxing, healthy green eating, boosting my immunity, and avoiding exposure as much as I can while still managing to survive.

Currently I am working as part of a medical research team at a Canadian medical school and although I love my job, I end up quite ill while at work and take days to recover. My best friend right now is the steam room as I can hardly catch a breath most days.

I am currently at a crossroads with my career due to my chemical sensitivity. I was again considering a job related to medicine, but I am allergic to anything with alcohol content in it, which is most sanitizers and cleaning agents in hospitals. I am now considering law and even got admitted to law school, but my health is deteriorating and I am not sure what will come out of this. If I do pursue law, it will be environmental law with a research emphasis. My anticipated research topic will be multiple chemical sensitivity and workplace policies. 

I feel like the world is at my feet, but I do not have the health or the energy to go through the activities of a job or daily life. I have been feeling depressed and anxious about my situation, but my optimistic nature would not let me give up. When I came across your website, I was grateful that someone seemed to care about us, about the invisible and often silenced patients with MCS.  Almost everyone I have spoken to has turned me away with no solution, so I am now all about this cause. I would like to be part of the movement to reap a change, and perhaps I will find myself advocating for patients one day. I truly hope to be privileged to advocate for those who suffer and for those who are nearing desperation.

 

Note from Alison Johnson: I have read two very interesting research papers published by the group Ekaterina has worked with in Canada, papers on which she appears as a co-author. I have not included those papers because she is listed as one of the authors and wishes to maintain her anonymity at this point.