1844 Bloor St. West

1844 Bloor Street West

(1991-2010)

From fixing up the run down house in 1991, to raising my two wonderful children, planting and tending a garden, living and celebrating life with friends and family, to getting sick, to almost dying…

Memories of life at 1844 Bloor St W 1991-2010.

My father, daughter and son on the porch… 91 or 92.

After cleaning and painting inside, I think it took almost 20 bags to remove the weeds and garbage and unearth the garden. Only the hollyhock, a red rose, and some alyssum in the rock garden were there when I moved in.

It took a few years to get the perennial garden going. My father’s old porch railing was re-purposed as a fence for a few years. People used to smile when they went by. More people who lived on Bloor St W started planting flowers in front. People often asked me if it was my garden when I was out shoveling snow, and told me how much they enjoyed seeing the seasonal changes.

When I got too sick to care for it because of the vehicle exhaust and laundry fumes from the apartment buildings, I watched from the windows as people stole plants, rocks and other items I’d placed there.

~

Many birthdays were celebrated in 1844…

More birthdays and playing around…

Christmases too..

and outdoor fun with family…

more family, young and old…

and more family, from near and far…

And friends…

… before it became too difficult to have friends over because the chemicals in their laundry and personal care products would permeate the air and stick to the furniture for a week after they left. My children had to stop inviting friends over. It was very difficult for them.

 4 leggeds were also part of the family

These 2 cats, mother Kiisu and son Souka, lived to be 18 and 19 years old… The son was born a couple of months before my son was born!

We babysat Sheba the dog at least once a year for several years. She was a delightful Basset Border Collie mix. It always took her a few days to realize she did not have to chase the cats to become one with them…

The black dog was a rescue and she got me out for walks in the park everyday from 1999 until Bloor St had 4 applications of asphalt in front of the house  in 2007.

I was no longer able to cross the road after the first application of asphalt  which was the whole north side of the road (not just the patch in the photo where the fresh fumes were wafting straight to my windows – I think that was the 3rd or 4th time asphalt fumes affected me in 4 months).

My legs would buckle and not carry me across, nor could I walk near it, so I had to give up Rigpa, my dear friend and companion of many years. My ex-room-mate who also had a dog, took her in and looked after her until she developed seizures a year later. I wasn’t able to be with her at the end.

Miss Murmur and Selie’s whereabouts are unknown. I couldn’t take them to my father’s or to the summer cabin in the woods where I ended up. The one room was not set up in a way that it was safe for the cats or for myself to have them there. The woman who looked after them briefly surrendered them somewhere. Bob and Miss Murmur were adopted from the Humane Society. Their previous owner had also become too ill to care for them.  Bob (big old boy) is with my mother now.

Those 3 cats got me out of bed and kept me from committing suicide when things were so bleak and my health was so poor that I didn’t think living was a viable option. They saved my life. I may not have been able to save theirs.

~

In 2010 a wasp built a nest just outside the window (between two where my computer was vented outside) and I watched as the nest grew and more wasps appeared…and icicles were plentiful at other times

Eventually urban explorers came around, and sometimes I saw kids running away from the empty houses next door… Then there was the dirty filthy roadside snow that was blown into the park during snow “removal” efforts on Bloor, and views to the northwest and northeast from the 3rd floor of the house

A Flicker fed its young one on the driveway, and a pair of young racoons played on the garage roof

No, they weren’t doing what you’re thinking!

Another year some took up residence in the garage next door

…and weather changes in the park never kept everyone away…

The views could change quite a bit

When Ontario announced a cosmetic pesticide ban, I was interviewed about the effects synthetic chemical pesticides and fertilizers had on my health. We did the interview in High Park. I had to wear a wireless microphone for perhaps 30 minutes. It took the rest of the day for my body to stop buzzing. I developed EHS and from that time on, wireless products and stray voltage in landline telephones produced disabling symptoms in me.

There were news articles (reporters knocked on the door wondering why one house among a block of boarded up houses was still occupied), and while I’m told the articles raised some awareness, they didn’t create safe, affordable, medically required housing for those of us who are chemically injured and dependent on government support due to our disabilities. Safe housing needs to be funded as basic health-care for people with MCS/ES.

The house was falling apart around me due to years and years of neglect, yet there was no safeR place I could afford to go. Housing that is built with non-toxic materials and good air quality in mind (or housing that was built with materials that could be detoxed of fragrance chemicals, pesticides and such) are expensive to rent or buy, and and hard to find. Also, there is no affordable assistance available to do the work when one must avoid the substances in question.

Such medically required housing is a must for people with MCS/ES to recover health (or to prevent the life threatening decline I was subjected to).

Eventually some of the repairs were done, with CERA’s help in pointing out the “Duty to Accommodate” in an MCS friendlier way. Chris was learning the ropes and was able to follow a set protocol to complete some ceiling repairs in a way that did not further impact my health.

Sadly, qualifications were over-stated to the landlords, who then hired him to check out a possible alternative home for me. The home was saturated with baby powder scented chemical fragrances, most likely from a plug-in device, and had mold in the basement. It was also situated in a neighbourhood across the street from a public school and church, instead of isolated from the types of exposures I needed to avoid. It was written in the report that the house had a “lived in smell” and there was no reason for me to go into the basement … mold was no concern to him, he didn’t know any mold can affect those of us with MCS/ES.

Quotes from the report:

“Property is currently uninhabited, free of chemical cleaning agents or artificial scents, and has had the opportunity to naturally detoxify itself for some time.  Due to Linda Sep’s sensitivity to others’ products, a property that has been vacant for some time allows for the best possible opportunity for visitation.”

“There was a slight, unobtrusive and inoffensive smell of unknown origin discernible in most rooms of the home”

“Basement is unfinished and unheated.  Although there should be no need for a tenant to regularly come to the basement, some walls were wet at their base and some dark and light staining was observed on some floor joists. “

Yet he wrote

“This property was found to satisfy most of the significant inspection criteria and, in the opinion of the writer, may provide Linda with environmental aspects that exceed her current conditions.”

So… with great hardship…

My father took me to Lindsay to see this place. I got extremely sick after just 5 minutes (against my better judgement) inside  looking around in the house to see if there was any possible way I could live there. The outside air was no better with smoke from someone’s fireplace everywhere. It took me weeks to recover, not fully recover, but to a level that was close to how I was before I went.

The cute little period bungalow was not at all suitable for someone with MCS/ES, but the landlord was mad at me because the report made it sound as if the place would be great for me.

~

Note to any “experts” trying to help people with severe MCS/ES:

Please get your ego out of the way, ask questions instead of making assumptions… Even people with moderate MCS/ES have no idea what it’s like to live with severe MCS and what level of chemical and mold contamination can trigger severe symptoms.

Unless you have done thorough life cycle assessments of all products and materials and understand where contamination can occur, you have no way to prevent it from happening and can put people at serious risk of harm.

Unless you have done chemical testing, don’t say “free of chemical cleaning agents or artificial scents” because you cannot determine the origin of what you are smelling, or not smelling.

~

Two of the 3 people I had contact with did NOT ask me any questions about my level of sensitivities and to what, and therefore could not possibly know what would or would not be safe for me, yet represented themselves as people who could accomplish what needed to be done. The one who was more experienced is one of the more vocal “experts” around, and was not prepared to work for a bonus instead of a guaranteed rate. He possibly understood he was out of his league, but did not have the humility to admit it.

~

The break-ins and arson next door weren’t helping

Fortunately there were little blessings that meant a great deal to me…

Sometimes I did receive help from friends and family who had to suit up in tyvek to enclose the fumes from laundry and personal care products. Even so, it was exhausting, and often  took days to weeks to recover.

~

Once when I was returning from a grocery shopping trip with my father, we found a stranger tying a handmade set of prayer flags to the lilac I had planted when I moved in. I still have these precious hearts!

I was mostly packed up in 2006, ready to move, but what was affordable, was also too toxic, as were the boxes my things were packed in.

Things were not going well… 

From “Why this blog was started”:

The biggest problem with the landlord’s offer (in addition to everything on MLS already being fluffed for sale with cheap and toxic materials, or that an occupied house is full of people’s chemically laden possessions making it impossible to tell if the house would be safe enough without them) is that within the budget they’ve refused to pay for a qualified expert who could check any potential (pre-screened by phone or email) empty properties for me, decide if they were candidates for a safe remodel, and then oversee any remodel by people who were trained on how to do safe jobs for people with MCS.

Without such expert assistance, it is impossible for someone with severe MCS to be safely housed. Without paying for the work, and having the pay being dependent on factors outside the experts control, they set up a system that was guaranteed to fail, despite looking great on paper. …

~

For too long, no-one would work under those conditions. This was a mixed blessing, since it saved me from people who didn’t have the expertise for the job, but it also meant that it wasn’t possible to move forward with WJ’s deal.

~

Also, no-one helping me would contact the head offices of real estate companies (instead of contacting agents individually) to try to get potentially suitable listings BEFORE they were ‘fluffed” and repaired for sale. If I could have done it myself, I would have, but I had trouble with basic sentences, never mind big concepts then.

If there was a mechanism to identify potentially safer homes as soon as the owners wanted to put them up for sale, before the toxic repairs and painting had been done, people with more severe MCS/ES and allergies would have a far easier time finding safer housing.

By the time the best building expert around was recruited to come on board, and willing to work with the conditions (because he really knew what he was doing and how to do it) Ontario was buried under over 3 feet of snow and there were no houses on the market that were at all promising.

How did I know I could trust this guy with the job?

Robert Steller asked me questions and then explained how he would prevent contamination. He knew what he was talking about, where the dangers lay, and how to find out from me where the problems might be and how to prevent them.

Time just ran out. There was nothing workable available in the budget for someone with severe MCS/ES.

Then the raccoons decided the other empty houses weren’t enough for them, and they created an entrance over my bedroom ceiling.

The eviction came days later (mine, not theirs)

Somehow, despite all the help I was supposedly getting, no-one managed to find an affordable and safe enough place for me to live, or assistance to live in medically dangerous circumstances.

I ended up on my father’s balcony for almost 2 months after the eviction. It wasn’t far from High Park and 1844. It wasn’t safe for me to be inside. It wasn’t fragrance and chemical free. It wasn’t safe outside either, but it was better than inside… even on the nights the temperature dropped to freezing.

I didn’t qualify for a case-worker, and no-one had any mandate to help me (or my father, whose health was also quite fragile) find ways to meet my health-care and housing needs.

I wasn’t allowed to finish packing when friends showed up to help, and wasn’t allowed to make sure everything was retrieved from 1844. Some things were left behind that shouldn’t have been (others simply went missing). A few things were damaged, like paintings from my great aunt the artist.

~

Instead of admitting that the system was sorely lacking and then doing something to fix it, (like creating a safe unit, or subsidizing the rent for something suitable, and or paying for the expertise required to make something safe and suitable) I was blamed as being unreasonable and abandoned.

Do you blame people for having cancer? Or MS? Or asthma? Or carbon monoxide poisoning? Or life threatening or debilitating allergies? And for needing to avoid the causes of their pain and suffering or wanting what will help in order to maintain health?

Dependence on products and materials full of toxic chemicals means that unless there is a deliberate effort to avoid them, they will be everywhere, and some residues are impossible to remove without completely replacing  materials.

Perhaps it’s unreasonable to make everyday products and materials with toxic chemicals that make us all sick eventually, and then not create any way for people whose bodies don’t tolerate them at all to live safely. Systemic problems are a result of public policies, not the fault of people who fall ill because of them.

Susie at TCR wrote the following post correcting some of the many errors in the last Star article, which was full of blatant lies that they refused to correct for reasons (suspected but) unknown.

My father had printed out the TCR article for me while I was living on his balcony and was too sick to spend enough time on the computer to read everything while at his place. (TCR no longer exists)

Now wouldn’t that be nice?

It’s so sad that they printed lies and inaccuracies in the Star article instead of more truth-telling as they could have had a profoundly beneficial result for the almost 300,000 people who have MCS/ES in Ontario (and others everywhere), instead of causing more pain and suffering.

What if all people were treated with respect, and people who had health and disability related needs were able to get them met in timely and appropriate ways that prevent more harm from being done?

What if?

Surely you know someone whose needs are not being met because of policy decisions that support destructive practices instead of healthy ones?

~

After less than 2 months on the condo balcony,  I had to leave because they were  replacing windows and caulk is too toxic for me to be around (see the above photo of my upper lip for some visible effects of caulk, the neurological effects were invisible).

I remembered my grandmother’s rustic cabin up north. I barely managed the drive up there without crashing.

I was only able to go there because I knew the route by heart, having been there so many times in my life. There was simply no place else for me to go. And I couldn’t follow new directions even if there had been another place to go.

At least there was a fridge and stove there so I could prepare the foods I needed and could eat (I can’t eat prepared and processed food, and have to eat simple real organic foods that I prepare myself). I’d have to manage the trek to the outhouse with my cane, and find a source of safe water. Camping at a campsite was out because there was no way for me to feed myself in the ways I could and needed to eat. I had my tent and simple bedding, my glass water bottles and a few meager essentials in and on the old car when I went.

My father drove the 2 1/2 hours each way in a day several times with supplies for me despite his failing health, because he knew how sick I was. There was no-one else with a car or mandate to do this, and organic food was hard to come by up north where I was.

The photo on the left was his 2nd time up, about a week after I arrived. The tent I was sleeping in while trying to make the cabin safe enough to sleep in is visible  in the background. The photo on the right is from the last time I saw him, in October 2010, when he brought me what he hoped were safe, warm clothes from my locker in the city.

The stress of getting no help or support from any level of government or organization was ultimately too much for him.

He suffered a massive lethal heart attack in November 0f 2010.

~

ps

I didn’t recover enough to drive the hour needed for organic food despite the great outdoor air at the cabin during the week when no-one was nearby. I tried the drive to Lindsay once after 8 months at the cabin because I wasn’t getting enough food, but the trip was too much  for me and I wasn’t able to do it again. And despite having lived in safer housing for over a year, I’m still not able to drive very far or even try. The toxic brain injury I suffered at 1844 still affects me.

All boarded up and ready to go down (2012)

Almost 20 years (and a lot more of my life) demolished.

~

The last tulip in the garden (2010)

May all beings have safe air, safe water, safe food, safe clothing, safe shelter, love, and freedom from suffering.

~

This is obviously not the whole story.  Some of the explanations are minimal, some are longer… there is so much more… Some of it is found in the other posts on this blog, some of it remains to be written.

If you have been following my blog at all, you know that after a year of struggling to survive at the summer cabin (without real insulation, with no water or toilet, and perhaps the fodder for future blog posts) I did eventually have the good fortune to receive one of 7 units in Canada that were built for people with MCS/ES, and my health and abilities continue to slowly improve here.

Many others are not as fortunate, and if they are still alive, can be suffering incredibly from toxic exposures they have no control over, from being unable to avoid products other people use, often as homeless and without tangible support.

Please find it in your hearts to support them in any way you can, be it financially or with safe, non toxic food and materials… with your time if you can shop… research finding safer products or accessible places for them… or help do other things that people who are sick need help with (but please be fragrance free – all too often we suffer more from well-meaning people who expose us to their toxic products thinking “it’s only a little bit, it won’t matter” but it does matter, sometimes a lot) and please help us all (every living creature) by demanding toxic ingredients be removed from everyday products and materials, and by requesting or creating proper medically required housing, supports and treatments for those of us who are chemically injured.

Thank you.

My dream is the dream of many other people with  MCS/ES, to find at least 100 acres of land away from sources of pollution and electro-smog, and the support to build safe housing and emergency shelters for people with MCS, to simply live in relative peace, or temporarily to escape toxic repairs and events (like roofing,  repairs, roadwork, etc). There is a huge need for this until prevention becomes policy and toxic chemicals are banned from everyday products and materials.

May you be in good health.

(and able to help someone who isn’t)