Desperately searching for a place to live that was safe for me, I found myself feeling hopeless and facing homelessness. I was walking down the street and saw a CTV van sitting near a house someone recently set on fire. I thought to myself — what I am facing is like a fire: unable to breathe in my place, losing concentration and many more symptoms I cannot even explain. I thought I had nothing to lose and everything to gain by approaching the man in the CTV van.
Simon was his name and he listened patiently as I talked about the challenges people like me face with Multiple Chemical Sensitivity (MCS) such as difficulty finding places to live or just going out in public. I was also living in a place which had various toxic molds (invisible – once again something I had to prove) which exacerbated my symptoms.
I proudly showed Simon my photography I had on my phone from the Canary in the Coal Mine Exhibition, a show that highlighted the impact toxic environments can have on people.
As a person with MCS, it has been challenging to find and have a safe place to live, leading to a nomadic life. Artistically, I am inspired by the challenges I face on a daily basis and I try to confront each obstacle in a creative way.
I take my chances when I enter into a building, and more often than not I have to leave, or I stay and become ill. A mask does not necessarily help, as exposure comes through any exposed skin.
After and during an exposure some symptoms I experience are swelling gums, physical pain, confusion, slurring, blurred vision, other bodily dysfunctions, and cold hands and feet; most of which are invisible except for the rashes and swelling of the eyes, lips, tongue and face. It’s like a toxic injury to my brain. I am currently trying to seek medical treatment for exposure to mold, which is something not covered in Manitoba.
Facing judgments and constant questioning as to everything I do in my daily life, I pick my poison for the day or that moment. If I need to have some sense of sensibility at all (and brain cells), I ensure I meet people outside so I can concentrate. Thus I do a lot of walking to appointments so that I am less affected.
I became sick in my apartment due to MCS and mold exposure. The social agency I deal with for housing said I needed to stay where I was for now; they could not help me as I had just moved in. They did say they understood my challenges for housing, but were not equipped to assist someone like myself with MCS and no such housing exists for people like me. I really needed to get out of there.
Thinking unclearly and barely making any sense at all at this point and feeling overwhelmed as to where I was going to live, I began approaching various media outlets to see if I could get my story out there.
Michael Welch and April Cherpaw from CKUW 95.9 FM were kind enough to have me on three shows and allowed me to talk about MCS, mold, and other issues in relation to chemical sensitivity.
They also attended my safe housing performance art at the Legislature on May 12, 2016 and they had Wendy Kearley from Nova Scotia on for a couple of shows with me. Wendy is in a so called safe place and needs a mask and Tyvek suit to go outside and I require a mask and Tyvek suit to go inside my place. We both are facing housing challenges.
The more I found there were other people like me, I felt I had the amazing opportunity to create awareness through my art. Grasping at straws, I did all I could to get the information out there about those suffering from MCS and mold exposure who were also homeless or facing eviction such as Wendy Kearley in Nova Scotia. For me, it was my mission to create awareness while I was in the midst of trying to find housing, healthcare, food and all the basic necessities of life.
As I was getting sicker in my home, I did a presentation to the Access Advisory Committee via Skype about MCS, and asked about fragrance free public spaces and transportation and if they would be able to help create housing like what was going to happen in Spain for people with MCS.
Unable to live in my residence, I took a mold sabbatical and went up to Northern Manitoba in hopes that I would feel better and that my rental unit would be repaired in my absence.
The air in the north was fresher and the food was great. My mom had a garden and I began to learn about certain healing plants. I figured that since I had the opportunity I would get the nourishment off the land to help in my healing process. I was soon finding out that eating organic foods and breathing fresh air along with doing some neuroplasticity allowed me in some ways to feel better.
Outside was where I mostly felt better. Living and entering buildings still remained an issue, however, nowhere as bad for me as the place I was paying rent for that I was not residing in.
While in Northern Manitoba, I received a call from Beth Macdonell from CTV. I was baffled and surprised and excited all at once. Let me explain.
With all the chaos happening, and contacting so many people and organizations for help, for a split second I forgot when I had contacted CTV and was not sure if this was real or not, after all my endeavours to contact media in hopes that my story could be heard.
Beth apologized for not coming to the Canary in the Coal Mine Exhibition. She was very kind and empathetic. We had a few conversations via the phone as I talked about what my art was about and why I was up in Northern Manitoba.
In the conversations it was determined the real story was I literally had no place to go or live and I was basically homeless, still paying rent for a place that I could not live in, while creating awareness through art.
Beth said she wanted to interview me, so I had a friend come up north and pick me up as I felt this was my last hope to find housing and create awareness, and to help decrease the stigma I and others with MCS face.
The first interview was within a few days of my arriving back in Winnipeg. I was living in a tent in someone’s backyard. I used mylar to protect myself from the off gassing of chemicals from the tent and the plastic blow up mattress. I am sure the CTV camera guy thought this was a scene from a sci-fi movie.
After the first interview I continued living in many places on a very short-term basis throughout the summer, in my search for a place to live.
Through this journey, I found out I could tolerate some things more than others depending on the environment around me and what foods I ate. Organic food, fresh air, positive environment and neuroplasticity was a major contributor to feeling better as long as I was outside in fresh air.
When I was diagnosed in Nova Scotia in 2011, the doctor said this was the most expensive illness I would ever have, and boy was he right. Everything I require for accessibility, clothing, housing, fresh air, organic food, and medical treatment, is very expensive.
Putting my health at risk to survive each and every day by entering certain buildings out of necessity, while being judged as I do, puts me under constant scrutiny because I do not look sick. I am asked why I can do this or that on a given day and why I can’t do it on another day. People are perplexed with the fact I seem to look fine. Having an invisible illness forces me to justify to loved ones, friends, and naysayers, which only compounds the problem and is taxing on my health.
I am hoping for anyone you encounter with any type of invisible disability that you can provide compassion, empathy and friendship without judgement. Proving things at every turn takes a lot of time and effort of negative energy that is unnecessary.
Also taxing is being in the survival mode of poverty, homelessness, no money for health needs and proper food and clothing and constant search for a place to live; that perfect safe house to live where I can control my environment, have good food, health, and in turn I can face the world and start the day with less toxic overload.
I need the time to heal and be in a positive environment with caring people who understand that I may or may not be able to be in an environment or have to leave an environment, who will empathize as oppose to judge.
Through all of this I have met some awesome folks, others facing the same situation as myself who are afraid to speak to others about their symptoms, increasing my desire to help make a change in the world for people with MCS.
Stability begins with safe housing, access to required and necessary medical care and food and financial help. How can anyone get better when they are constantly in survival mode?
There comes an appreciation for more things and awareness, compassion for myself and others…and this yearning desire to help others.
Embarrassingly enough and to everyone’s dismay, I had to enter my place of residence, (which I have not lived in since June 16 and have been paying rent), wearing a tyke suit, gloves, breathing apparatus and goggles. I have gone through extreme measures to try and save my stuff, which is harmful for me, and would not affect most others like it does myself.
The hazmat suit (as I call it) has been a life saver, and created more freedom to enter my place to assess the situation. For me it is a risk to enter, even with the hazmat suit, as there is part of me that is exposed and the mask does not work 100% of the time.
You may be thinking,“Why is it so toxic to her?”
I am susceptible to toxic chemicals and to mold; for me it could be life threatening to continue to hang onto my stuff. After all, my whole life was in that place, and like a fire, I had to leave to get better.
With no place to go and an unlimited opportunities to take my wings and fly, I am moving forward to create awareness as I in turn look for where it is I can live. It is all the journey, not the destination. (well…a destination would be great to plant my feet and have more journeys, yet go back to my destination…as in a permanent single dwelling detached unit in a safe environment, where I can pick up and go anytime just in case the environment is not suitable for my needs).
It is all about the journey and how you take the challenges and turn the learning experience into opportunity.
The experience with CTV was awesome. They were kind and compassionate, making it fun for me when I was kind of all over the place. They took photos of my work and photos of me taking photos. It was fun. Most of what I do is outdoors.
I am kind of nervous about exposing myself further, yet it is time the world sees what is happening.
With my diet and what I am doing at the moment I may try a few things. However, everything is based on exposures on a given day. It is all a balancing act…hmmm pick my poison…lol. However, it is the judgements of others, and the ones I place on myself also. Yes…quite the balancing act.
I am grateful for the media exposure from CTV and their kindness and concerns surrounding Multiple Chemical Sensitivity and for realizing the seriousness of this issue.
As I like to say, “Live, love, laugh.”
Click here to read other CNC stories by Marie LeBlanc on this topic and more.