Note: I wrote this on April 25, 2010, just prior to eviction from my home on May 4.
Despite trying to make something work, there have been many obstacles. My Multiple Chemical Sensitivity is very severe.
I react to the chems in tap water so cannot wear clothes washed with it (and haven’t been able to afford whole house water filtration despite needing it for over a year). I cannot wear my safest sandals for more than a few minutes without my skin and muscle being affected. So, I have no clothes I can wear out, and this also means that the chemical residues in floors, walls, etc, will be more than I can live with. I haven’t used chemical cleaners on my floors here in 20 years, the walls haven’t been painted in at least 12, the exposures that have affected me here blow in from outside my unit (the 2nd floor of a 3 story house).
I’ve been here deteriorating since 2006 when I was already so severely affected that the house-hunting then made me crash for months and that was topped off by 4 rounds of asphalt on the road, in front as well as a slew of other serious exposures that I was unable to escape.
I very nearly died and it has taken all my efforts to survive, to stay alive, in hopes that all the time that was passing could allow something safe enough to be created, as it was becoming increasingly clear that everything already out there was not going to allow me to live. I don’t have the physical reserves I used to have. They’ve been depleted several times over.
The offer from the landlord seemed great on paper, yet they wouldn’t pay an expert within the budget, and it took till the end of November to have a qualified expert agree to work without pay but for a bonus after the fact. We discussed what needed to be done and determined that without a new build, we’d have to gut and rebuild a good deal of the interior of any existing place. He created a list of “bones” that a house would need to have to make it worth gutting and rebuilding for me. And the area could not have any sources of major pollution, so that I could be outside as much as possible, especially if there needed to be more offgassing etc.
By the time he came on board there was 3 feet of snow in many places in the province and the market was shutting down for the holidays. When things started thawing a bit all we found were places with major pollution nearby, or places that did not have the “good bones”, or they were too expensive, or not empty. The average price of a house in this province is $333,000.
There was one place that seemed a possibility, but it was a real dump inside, and he was out of the country for a few weeks at the end of my deadline period. I was also told it was too far for him to travel to personally oversee any work. That meant it could not be done safely, if at all.
After the deadline I was contacted about a place that was built for and by someone with Environmental Illness, but it was a 1bdrm house and $40,000 over budget. It also needed a wall built to create a 2nd bedroom as it was open concept and I need the 2nd room to keep many of my things in (there was no other storage there). Admittedly the bathroom seemed big enough to throw a single cot into so I could have also slept in there.
The Member of Parliament (MP) contacted the landlord about this option but it was decided that it was well over budget and there-fore a no go.
Toronto Housing did find a 1 bedroom apartment that they could have washed down with baking soda for me. It was on the 2nd floor of a many unit building, and even if they agreed to wash the stairs and the 2nd floor hall with safer products, the residues from other people would have meant that I would have become a prisoner in the unit, with no chance of ever walking out. The bldg also has several wireless antennas on the roof which affected me merely being driven past them last year, and I’ve become more EMF/EMR sensitive since then.
I have not committed any crimes, I have not murdered anyone or stolen millions of dollars… yet I was expected to voluntarily accept what amounts to a prison cell where I would have been tortured 24/7 with chemical residues and EMF/EMR from within the unit and from outside the unit. I would not have survived the move, I’d never walk out of there alive, and no hospital room in this province was willing to prepare a safe enough room for me in advance.
To me it seemed like a waste of energy to have people go to all the work to move me there if it’s just to die.
My criteria developed because of the severity of my MCS/ES. People who have not spent months near death (not merely thinking like you’re going to die as with a bad flu, or after “a” bad exposure, but having several bad exposures when already depleted…) have no way of understanding.
I keep having people get upset with me for not accepting what has been offered, they tell me to think more positively. If that’s all it took, I would have been out of here years ago. I’d also be rich now, I’d have built MCS villages in every part of every country.
I was willing to accept palliative care when in the winter it was looking like nothing was going to work out. But one of the team members kept telling me to imagine a happy life with my cats (while they were trying to get me a safe room that I wouldn’t be able to leave to pee or shower or cook, wouldn’t be able to use my computer in as it would offgas too much, would have been a prisoner -and to have 3 cats in there with a litterbox and cat food? The visualization was not working for me so I started imagining being happy with the cats in a place I could LIVE and not die. But all that was coming my way were places I could die.
Wishful or positive thinking and fear do not make a person with severe MCS (who has already lived through several rounds of making a home safer and losing much of everything that anyone can lose) more able to survive exposures to chemicals and other substances that disable the brain and body. The body cannot “mask” or adapt when the load is too great.
A few people who have survived have all had able and willing close friends or family to take care of all the other details. I do not have this. Most people in my position have already died. They don’t live long enough to have their story told.
As the reality of the housing situation has developed, I’d already lost contact with most previous “normal” friends, and my family members are not in any position to do much to help. The people who have tried to help have all been brick walled by lack of finances, resources, systemic obstacles and toxic chemicals.
MCS/ES is a recognized disability and as such, there should be some appropriate accommodation in the world out there for us. Right now there is nothing here. There is no health-care, no housing, no home-care, no safe appliances, technologies, or repair people, no funding for life support systems like adequate water filtration, etc. We are abandoned to die if we cannot be shoved into a toxic box to live… well, we’ll all be shoved into a toxic box one way or another.
So while there are people who have been trying to help, they have not had the tools or resources that are needed to help. I am without almost every single practical support that they have tried to arrange for me. And the few supports (like getting the heat back on and side door garbage pickup) that they did arrange were plagued with problems.
The oxygen came full of chemical residues and issues that took weeks of recovery time and offered no benefit…
My food (organic veg from a farmers market and dry goods from a health food store) has been brought to me for 3 years now by my over 80 yr old father who’s health has been declining since his last surgery in the fall, and more recently by another friend who I met online. I don’t have people able to shop or search for other needs I have, and most of the time I am unable to pursue much myself. Most of my inquiry emails go unanswered and using the phone can be very painful and often disables me for the whole day.
So when I’m told, or even encouraged to accept that all I can have is a toxic prison cell where I will be tortured 24/7 by exposures to things that disable me, where I won’t be able to think clearly, and I won’t be able to get out of bed to feed the cats or prepare my own food, or take the litter and garbage down the hall to the chute, but that they will try to get me help, when in 3 years no-one could arrange for safe water and clothing, or help me cook and clean, etc, then pardon me for turning down what would amount to a horrible death, imprisoned and tortured for crimes I did not commit. I cannot see how that is in my best interest. I don’t see how that is in anyone’s best interests.
I am not afraid of death. I just don’t want to die in horrible pain with a mind that is poisoned from toxic exposures. I’ve already very nearly died. I’ve volunteered in palliative care, and been there with people who are dying. In many ways death would be a relief, IF I can die with a clear mind and conscience. If indeed my only options are death by a toxic house or apartment (I would have turned down a toxic million dollar mansion too) or homelessness, then perhaps someone will drive me somewhere with a view so I can die outdoors, but at least with a clear mind instead of one poisoned by toxic chemicals.
If the powers that be have determined that I don’t have enough value to be protected, safely housed and appropriately cared for, that people like me (and many of you) are not worth saving, that it’s ok to discard honest disabled people who care about the welfare of others, while bailing out crooks in financial and industrial circles, and if there are others who have the means to be doing something for chemically injured people, but instead choose to do something easier, then good luck to everyone.