The move, part four

This is the fourth and final post in a series about my move to Barrhaven. (After this, I’ll be blogging about my life at Barrhaven.)

My front door.

Making new friends.

I’ve hung up a bird feeder and made friends with a chipmunk and a couple of black squirrels. One of my neighbours has some similar interests as I do and we’ve been able to spend a little time in each other’s company, mostly talking while sitting out on the stoops. The air is sometimes safe enough to do so, and for me to take little walks in the side yard. She picks up my mail from the building it is delivered to, as the laundry product residues in the lobby were making me really sick, even if I went only twice a week. And she took me on my 1st trip to Ottawa the other day, to check out two farmers markets and an environmentally friendly products store (where I was hoping to be able to get some safe toilet paper from, but they were sold out). I was able to actually appreciate some of that trip, beyond merely surviving it, despite the pain from cell towers, traffic, and other exposures. I am not in a hurry to do it again, but know that I could manage a trip every now and again with someone else driving, and as long as I don’t go inside anywhere. Ottawa has some nice sights and places to see for better days ahead.

Close up of the sign on my door.

Passing storm out my window.

My health continues to improve here (it hit a wall at the cabin, despite the fresh outdoor air and good well water I got from my friends, all of which I do miss). I hope I can get another stage of water filtration installed, as what is here now isn’t enough for me to be able to drink it. The RO water I’m getting delivered is also not great, but better than the double filtered tap water. There is no spring water available in glass bottles around here, and it’s too far to drive to get filled myself.

The sun came out after the storm, just in time for sunset...

My remaining challenges her aren’t life threatening, (as long as the lack of some of my supplements and toilet paper doesn’t become so ;-p) and can be dealt with over time. I feel pretty good about being here (when I’m not missing the wilderness) and feel fairly confident that I can continue to improve my health and brain function. Some of my old self is returning, and most of my PTSD is gone! I have my collection of odd treasures around me, many which make me smile when I see them. I have my knife sharpener and pots and pans so I can cook well again. I have an oven again (which I got sick burning off fragrance residues from) so I can bake veggies and gluten free bread soon, I can hand feed a chipmunk, watch some flowers grow, and I have some nice neighbours. It’s feeling like a safe enough home. Life is good.

The move, part three

This is the third in a series about my move to Barrhaven.

This room is still in progress but taking shape.

Close up of floral chandelier/centerpiece made of painted old metal.

This whole process of moving was interesting to me, as my previous memories of unpacking and settling in to a new home were all from when I was healthy (or much healthier). I didn’t have a map in my brain for making a home when doing things alone is so difficult, when I can’t run out and take care of things I need myself… (it’s also the 1st place I’ve had to myself since I was 18) so on the one hand I was impatient that things were taking so long, while on the other hand marveling how quickly I was able to accomplish these things, and how much healthier I am now, after the year at the summer cabin.

What is really amazing is that I didn’t experience a huge crash from moving here, or from being re-acquainted with my things from a place that had had some mold problems and which were then stored for over a year in a locker that was not entirely sealed at the top (except by plastic tarps that were hung up with black clips, and tarps we laid on the floor), nor was it climate controlled, as I discovered too late, hence the beginning mustiness on some of the textiles and clothes (luckily in double plastic bags) that had been stored on the floor, or they would not have been salvageable.

A painting by my great aunt Helmi reflected in a wall mirror.

I had reluctantly faced the possibility that my things might be contaminated to a point I’d need to get rid of almost all of them, which has happened to so many others with similar circumstances. Had they been so contaminated, they might have made this place a nightmare to be in too… I am so lucky that I am able to live with most of my old treasures, and have time to make decisions on the others.

The HRV (heat recovery ventilation) changes the air often, and some areas are specially vented, so some of the things that would otherwise be problematic, aren’t remaining in the air and affecting me as much. My activated carbon air purifiers are filtering out other residues. Every once in a while the HRV sucks in some “eau de skunk,” or even worse, some heavy fabric softener fumes. I’ve had a few bad experiences with that, but fortunately, those exposures are no longer life threatening, and I’m recovering much faster from them!

I’m now also able to drive to one store 5 minutes away to pick up rice milk, rice cakes and cereal by the case as soon as it arrives, where they bring it outside where I pay, and they even take it to my car for me. I will have to find someone to fill the car up with gas very soon if I am to continue driving it. I still haven’t found sources for some of the supplements I need, and some foods are only available from stores where they get saturated with incense, so I will have to see what happens without them. I don’t want to trouble people in Toronto to mail some of them to me, but I might have to. The closest Natural Foods Coop group wasn’t interested in having me join as a member when I contacted them from the cabin, and I am also still trying to find a way to get safe toilet paper, and am going to be desperate soon!

I also still need to get a new bed. My old one is not safe for me to sleep on as it is, the base would not fit up the stairs anyway, and it’s barely safe enough to have in the living room. Without the HRV it would have to go, but when I can detox some heavy covers for it, it should be ok as a couch.

My TV cabinet. Some day I'll hook it up to the VCR and plug them both in! Right now it's supporting my sound system.

I did realize last week that the sheet of mylar I was using as a bedroom curtain might be a problem, so I took it down and covered the window with bbq foil. That evening the room seemed fresher when I went to bed, and in the morning it didn’t hurt as much to go down the stairs. The 2nd morning much more of my fibromyalgia pain was gone, making the stairs so much easier! I’d been struggling every day for almost 2 months with those stairs, something in the air from the bad side of the mylar was affecting me like that! Last year there was a change in the product, one side is still ok, but the other was not. I usually sealed it somehow, but I kind of hoped that since it was against the window and wall, it wouldn’t be a problem. A nagging feeling about it got stronger once I’d unpacked the books, and what a difference it made! I have 2 sheets bad side to bad side as a shower curtain until I have something else I can use, so will probably see another improvement when that is successfully addressed.

To be continued…

Part one. Part two.

The move, part two

This is the second in a series about my move to Barrhaven.

Barrhaven. My place is the last one. I share a stoop with the person who lives in the middle unit.

I was unexpectedly blessed with an amazing (slow and steady) energy and a sub-conscious clarity for the first 4 days after moving into Barrhaven that allowed me to unpack the boxes and shelves for my kitchen and get it functional almost right away!!! The kitchen is the most important space for me now, as preparing healthy food is the one thing I have the most control over and nourishing food is so important for my health. When I was barely alive, that was my priority every day, to make and eat one good meal. That and feeding my cats and cleaning their litter-box. If nothing else got done, so be it. I needed healthy, nutritious food to keep my body from completely giving up the ghost. So getting the kitchen set up here asap so I could cook was a priority, as then I’d be able to keep myself from spiraling downhill again if I collapsed for any reason.

Kitchen before: the window looking in from hallway, looks out to a green space with a few trees, the railroad tracks are beyond.

Kitchen after: not quite finished, but getting there. I really want kitchen cabinets, open concept is too busy

I think I mostly did collapse after that, for a week or four, but I also had to air out bags of textiles, curtains and clothes that I’d kept in hopes they might someday be made safe again, as some got musty in storage. I also had to detox some curtains in the bathtub for the living room window to give me some privacy. I was lucky that one set of sheers I had took comparatively little work, as the others were making me really sick, bent over the tub breathing in the fumes as I washed them. There’s no window or extraction fan in the washroom, and no laundry tub in the laundry room, so I had to give up on trying to detox more curtains for the other windows, or other clothes for myself. The bags are now all in the walk-in closet that Christian came over and helped me cover with sheets of mylar. There was something in the walls in that space that was making me sick when I opened the door, so we used 2 sided painters tape and foil tape to affix the mylar to the walls and maybe even the ceiling (I don’t remember!). Now I get sick from the old previously safe soap residues on my things when I open the door, but I can’t do anything about them until I am able to get a washer and dryer.

Michel has made more than one trip to IKEA and Home Depot for me, picking up a few things I needed. The shower curtain and toilet brush from IKEA are still outside, not safe to bring in. And the lamp has a questionable part, I’m not sure if I will be able to use it. The toxic perils of modern products… sigh…
Surprisingly, though, I am almost all unpacked now! I really wanted to get the packing boxes out of my space as quickly as possible because they were so nasty. So nasty in fact, that my immediate neighbor complained when I’d put the empties outside. They made her sick too! I think it’s the glue and type of paper they used. So, whenever I’ve had the energy, I focused on unpacking things to get those boxes out of here.

I was finally able to tackle the “office” 2 weeks ago. Unfortunately my books and files were packed in those boxes for over 5 years, and now have taken on the essence of the boxes. I don’t know yet if I’ll have to get rid of them or be able to salvage some. That’s a project for another time. They are all in the 2nd bedroom, and someday I’ll don my mask and eye glasses and look through them to see what’s there. I now remember and miss being able to snuggle into a comfortable chair with a good book… I hope one day I’ll be well enough to be able to do that again.

To be continued…

Part one

The move, part one

This is the first in a series about my move to Barrhaven.

In my new home

It’s been pretty well two months since I arrived here at my “safe enough” new home.  For anyone familiar with brain fog, you’ll understand how it’s all been a rather dream-like experience. It still doesn’t feel exactly real, but at the same time it’s just the way things are now.

I would not have made it here without the help of numerous people who made it possible… After weeks of refusing to commit to pay the full cost of moving my belongings from Toronto to the Ottawa area, the Ontario Disability Support Program finally agreed to pay (the little push from the Ombudsman’s office made a big difference). Ani J found some movers who charged much less than the others and could bill ODSP directly so that I didn’t need to play middleman, she and Bruce were at my locker in Toronto to supervise and help  prepare the truck for my things, and Christian and Michel were at the new place to help with the unloading (and my what a job that turned out to be for them, partially because the truck had to be parked so far away, and also because it was FULL of stuff, much of which I’d forgotten I had). I was told that the rain was heavy all day except that it stopped while the truck was being loaded and unloaded!

The property manager had shared my info with another tenant, Mountain, who helped me arrange for the weekly home delivery of organic produce, which was coming the day I was to arrive. Emile was generous enough to say I didn’t need to pay for it until the following week in case I wasn’t already there in time, and Mountain accepted it at her place, so it didn’t have to be left in the sun in front of “my” place.  Having safe food arranged gave me peace of mind, as it isn’t always easy to acquire.

Then, a couple of weeks later, with my other arrangements made, with a new grandchild born and settled in, my guardian angels Cheryl and Dave loaded up his pick-up truck and my car with my things from the cabin, and she drove my old car with me in it, to my new home. When we arrived after about a 4 hour drive, getting a little lost on the way in, as we didn’t have a GPS and I didn’t remember the turns and couldn’t make any sense of the map, the look on my face must have shown my shock at all the stuff piled up everywhere (instead of being neatly tucked away in the storage areas… which was of course impossible, since there was so much stuff that they didn’t know what to do with)…

Cheryl kept saying “don’t worry, it will be ok” … Then Mountain arrived with the food and Cheryl got to work cleaning out the new fridge so the food could go in it, while Dave and I tried to find places to move things so that I could cope here alone after they left. I was stunned, in a state of shock, but Dave was focused, strong, and able. With their help, we got  the boxes out of the main breathing areas, the other odds and ends out of the way, the little bedroom completely emptied for my cot to come in, the stuff out of the car and truck, the food into the fridge,  all to a point where I said I could cope. We then did a toast with a 3-way share of an organic bottle of beer I’d picked up in Minden when buying vodka to clean with, and they went on their way. I think I collapsed after. I don’t remember my first night here.

To be continued…

Part Two

I’m moving to a new “environmentally sensitive” housing unit in Ottawa!

Imagine my surprise when two weeks ago I received a phone call saying a unit had become available at Barrhaven, one of the specially built units that have the potential to meet most of my housing needs!

This photo was taken the day before my birthday last July, after being at the cabin about three weeks.

It’s already June, over a year since I was forced from my previous home without another place to go to due to my disabling medical condition of severe Multiple Chemical Sensitivities, Environmental Sensitivities, Fibromyalgia, and Electro HyperSensitivity, none of which is properly recognized in this country. It’s almost a year since I (barely) made it to the summer cabin owned by some in my family. And half a year since my father passed away.

Despite a lot of struggle, I made it though winter with the help of a local woman and her family, some assistance from several canaries, a few friends in Toronto, and my uncle’s wife in Massachusetts (who had been paying the electric bill for the cabin for years and continued with my winter heating costs), as well as the hopes and prayers of many. I’m eternally grateful.

Yearling bear climbing on the hand railing beside the door at the cabin.

I also was blessed by the visits of a young screech owl, wild turkeys, numerous other birds, squirrels, chipmunks, and for a short time some young raccoon siblings. I’ve learned a lot from these creatures and will treasure the photos I was able to take, as otherwise the memories would likely be lost in brain fog. The other night I was visited by a bear, a yearling, who was looking for food, alone. I got a blurry photo of him as he was about to climb on the hand railing beside the door to eat the moths circling around the light.

My challenges at the cabin have been great. No running water, no indoor toilet, no fresh organic food close enough to get for myself and too far for others to drive regularly, no insulation, no proper storage for the things I couldn’t have near me but needed to live, inadequate winter clothing, getting snowed in, and more challenges that should not be endured by anyone in a rich country like Canada, especially those with disabilities.

Through the course of it all, I discovered my situation does not fit into any official safety net mandate. There are only seven medically required housing units built for people with environmental sensitivities in Canada. I’ve been on a wait list since 2006, maybe 2007. Meanwhile, I’ve gone from a moldy home to an apartment balcony, and spent winter in a summer cabin. But despite the healing effects of the external environment at the cabin, I’ve lived here with the threat of being forcefully removed by a certain member of the family. The need to find a safer place has been a constant worry.

So imagine my surprise when two weeks ago I received a phone call saying a unit had become available in Barrhaven, one of the specially built units that had the potential to meet most of my housing needs! They wanted to know if would I please go there within a week and spend a night or two to see if it was actually suitable for me (people with MCS/ES are affected by different things, and some people are not able to tolerate the materials in these units, or the noise of the air handling system).

I humbly ask for your support to help me through winter

Me, in happier days.

My father passed away Nov 28 after suffering another heart attack. Despite his own frail health, and despite not having much help or support to do so, he did everything he could to help keep me alive. This was very stressful for him during a time he should have been able to rest, and look after his own health.

More than anything, I wanted him to see me safely settled somewhere, but sadly this was not what happened. My poor health, lack of appropriate assistance, and limited income have meant safe housing has not been in reach for me.

He was very worried about the winter conditions at the rustic one-room summer cabin I’ve been staying in, and was going to help make things more surviveable as the conditions here are very challenging, but tragically he died before he could do so. That and the fact that the Ontario Disability Support Program has not reimbursed me several hundred dollars in emergency dental fees that they should have covered, along with the cold and the winter food procurement issues, have left me in some serious practical and financial hardships.

I hate to ask for help, and wouldn’t if I didn’t need to, but I would really appreciate any gift or donation you can spare to help me get through winter here. Getting food and staying warm is expensive here. The money will not be wasted on anything frivolous, but be used for survival essentials only. And you will have my undying gratitude.

Please send donations to my bank to be deposited in savings, where I can access by phone. I do not have safe computer access for paypal. To donate:

A cheque can be sent payable to “Linda Sepp c/o The Estonian (Toronto) Credit Union Ltd.,” to be deposited into the savings account at:

Estonian (Toronto) Credit Union Ltd.
958 Broadview Avenue
Toronto Ontario M4K 2R6
Phone (416) 465-4659
Phone 1-866-844-3828
Fax (416) 465-8442
www.estoniancu.com

One note: Please do not send money if you also live below poverty line and are struggling to make ends meet.

I sincerely hope you all are as well as can be. I send you my love and warm wishes for Christmas or however you spend the season. And for a healthy happy new year!

With thanks and gratitude,
Linda

I need a housing miracle before June 27th

Note: For more info about the medical housing needs of people with severe MCS/ES/EHS, please see the other posts on my blog. There I’ve described the issues in more detail.

I have to leave the balcony I’ve been sleeping on by the 27th of June.

I’m not well enough to be able to handle the toxic chemical exposures I’d be subjected to in a room or unit within “my means” (Ontario Disability Support Program’s budget for shelter costs) as all cheap/”affordable” places are made with the most toxic materials and also maintained with them, as well as sharing air with others who are allowed to use all kinds of toxic products that don’t respect property lines.

I’m physically burnt out from trying to stay alive after crash number 4 and 5 (or something like that) and after raising kids with limited means and continued exposures driving my health reserves down even further. I need a place to heal, I can’t struggle just to survive any longer, there isn’t anything left to draw from.

I simply don’t have the practical, physical, emotional, resources or help needed to be able to survive another round of neurotoxicity from cheap products, materials, etc, and right now that is all that is available to me.

Other people receive health care and assistance to live with their medical needs and disabilities. Those of us with chemical injury and EHS do not, despite what that Star article claimed. The obstacles and chemical barriers are systemic, and so far there isn’t any serious effort to change that.

So unless there is someone out there with a safe enough place for me to live, I have just over 2 weeks left before I am homeless again and then I also won’t have any income or ability to eat, or protect myself from exposures.

Below is what I need in a new home in order to stay alive. This list is based on the least toxic materials that are used more often (not customized). It is not based on fashion, as I can’t have guests to show it off to anyway, it is based on survival needs only. It is what I need to stay alive and recover some health and abilities.

A temporary place that is safe may allow more time to find a more permanent place, but then I also have to pay for the continued storage of my household belongings, so would have little left to pay for rent.

For $500 a month including utilities (ODSP does not even provide that much) I need:

1. 2 bdrm, 1 story, with private exterior access, no shared air, with private laundry.
2. No air fresheners, scented candles, indoor smoking or in-house pesticide applications, strong cleaners, mold or mildew issues.
3. Acreage to protect from neighbouring chemical use, especially dryer vents–away from nearby houses, rail, hydro lines, cell towers, agricultural and golf course pesticides and fertilizers, and other air pollution, especially upwind (usually NW).
4. Need solid wood or ceramic/stone tile floors, stainless steel or enameled sinks, enameled tub and tile surround, solid counters, cabinets of solid wood, metal, glass, (not particle board and laminates, no carpet, laminate floor, plastic tubs and surrounds, and even wood paneling could be a problem–what is the wood finished and cleaned with?–as all those materials absorb chemicals and keep off-gassing them).
5. VACANT NOW
6. Electric heat, NO OIL, forced air, or gas (propane generator for emergency use only is ok)
7. Garage preferred
8. Within one hour of a year-round source of organic food and produce not from a supermarket or scented store- i.e., need a natural foods store or food co-op? Community Supported Agriculture programs?
9. No plastic/vinyl siding outside as that off-gasses in the sun (brick is ideal) OR recent renovations including paint inside.

I need to install whole house water filtration and my own private laundry machines, especially washer (can live without dryer if sunny, safe outdoor clothesline is possible).

Would like to be able to grow some of my own organic food so safe garden space would be appreciated.

The search area is this:

Outside Toronto and other cities/towns because of the need to avoid dryer vents and toxic laundry products, personal care products, lawnmowers, etc that close neighbours use.

Far from industry, agriculture, rail and power transmission lines, cell towers, as well as major touristy beaches, golf courses, neighbours, etc., but having year round fresh organic food accessible, not from a supermarket or highly fragranced health food store:

* The south east corner is at 7 and 41 around Kaladar.
* The north east corner is at 41 and 60, between Golden Lake and Eganville.
* The north limit is under Algonquin Park.
* And east of 11 by some distance ie #35

Need to check availability of year round organic produce.

Southern boundary
Hwy 7 to the south on the east side (between 12 and 41).
Hwy 12 up and over Lake Simcoe from 7 .

Eastern boundary
Hwy 41 to the east (between 7 and 60) but some areas north a bit of 7, but not including towards Ottawa/Renfrew may be ok.
Away from soap factory in Perth or Smith Falls and not around Sharbot Lake

Northern boundary
Hwy 60 at the north (between #35 in the west and 41 in the east).
(under Algonquin park)

Western boundary
East of Hwy 11 – #35 and #60 at the north end, down to the eastern side of Lake Simcoe

Between Madoc and Perth near hwy 7 is Sharbot Lake where they are planning (and fighting) uranium mining. Chalk River /Pembroke to the north of there also have uranium issues.Those places are out. Golf courses are not an added bonus, they use pesticides. Beaches are full of people wearing toxic sun products. I need isolation to avoid the products and materials that disable me in order to recover my health.

I need a miracle.

These movers are not to be trusted re their billing practices

These movers are not to be trusted re their billing practices. They will rip you off.

Bull Pull Moving Hauling Rentals
1111 Finch Ave W Unit 11
NY, ON
M3J 2E5

416 800 2682

They promised 26 foot truck and 2 men for $60 an hour on the phone (the other choice was a 30something foot truck and 3 men for $90 an hour).

They arrived late on the 14th of May with a pick-up truck and less than 20 foot trailer (I was too sick and surprised to think to measure or photograph the thing, but a Toronto Star photographer was there documenting the move for at least a couple of hours)

My Dad paid for a 4 hour minimum of $240. + tax = $252 by credit card at the very beginning (when they showed up).

The guys were over 30 minutes late (that is neither here nor there in the big picture), then stood around numerous times when things were not coming down and out of the house by the landlord’s contractors, instead of helping to pack the paintings that WJ wouldn’t let us inside to pack the day before, my paintings were outside with all the packing materials, but the movers, despite being asked to help pack them, did not assist (the landlord’s people were removing my belongings from the house and had damaged many of my art packing boxes too, but that is yet another story… WJ Properties allowed the boxes to get wet and trampled on because they wouldn’t allow me to put them in the house the day before, so I can’t return them for a refund either, well over $200 I lost there).

At about the 2.5 hour mark I think, the owner or guy in charge of Bull Pull decided to close up the trailer and come back for a 2nd trip.
They were very slow arriving at the storage locker, they had stopped to get gas on the way. My friend and I drove separately in a car and waited.

Then once at the locker, I had to sign another credit card slip (blank) before they would unload my things. What choice did I have? He refused to unload and said they’d drive off if I didn’t sign.

Once those things were in the locker, we went back to the house (where they arrived late, having stopped for dinner) and put in the remaining items, then were to meet at the locker again.

My friend and I waited an awfully long time. Turns out they went for donuts and the bank while on the way with my things in their trailer. I was really sick at this point and really needed to be in bed, but we had to wait.

So when the trailer was empty, (and everything had fit into a less then 25 foot locker with much vertical room to spare, so would have fit into one 26 foot truckload and most likely in a 4 hour period if they had helped pack the artwork) I was handed the new bill

This was for another 4 hour minimum PLUS a 2nd trip charge of $60 and another $60 for travel time (they had bought gas, had donuts, had dinner, gone to the bank during the time I was paying) for a total of $378.

We wouldn’t have needed a 2nd trip if

- they came with a 26 foot truck like they said, (choice was 26 foot truck -they didn’t say shorter trailer and pick-up, or a 30 something foot truck and 3 guys)

- if they had actually done some of the packing of the paintings etc while waiting… instead of standing around talking (yes they were asked to help more than once)

We probably would have finished in the 4 hours, definitely not needing a 2nd trip if they had the right size truck…

Maybe only one more hour charged to me at $60 on top of the original $252 instead of another $240 + 120 + tx of $17 , = $378 + the $252 = $630

So they billed me the time for getting gas on the way to the locker, then the time for having dinner, then donuts, and banking all in the 2nd portion, plus the 2nd trip charge and that other charge for travel time, on top of the hourly and a minimum which had already been paid, and we were less than 3 hours over at the very end, most of it spent waiting for them doing their thing while I was being charged for it, and then arguing about the bill.

My storage locker is almost 25 feet long (a bit shorter) and there was plenty of room left to pile higher, so it would have ALL very definitely fit into a truck the promised size.

PLUS I already gave him a couple of plants– one was a hibiscus tree that would be well over $100, possibly $300, a tree my grandmother had grown from a rootling, and the other one was also from her, a large philodendrum, worth a minimum of $45, before he sprung that 2nd bill on me.

My friend was shocked by it too, but was not able to reason with him either.

To me this was not only fraudulent, but definitely taking advantage of a disabled and poor woman in poor health (who knows if he would have done this to my dad or another man). I don’t know if his being from Afghanistan had anything to do with the way he treated me, but it is a possibility. He did not discuss the extra billing with my dad at the beginning, but sprung it on me when I was already feeling very sick from all the exposures. Then he had the nerve to tell me all movers charge like this.

I think I should get at least $300 back. I’ll pay an hour extra, but the rest was definitely not of my doing.

I need this money for disability related medical requirements that are not covered by any other supports I receive.

I have had so many people take advantage of me and spread misinformation that it would be nice to see some justice done somewhere in my life.

This post is my personal opinion.

Kind regards,

Linda Sepp
Toronto

Update on my situation, dated April 25

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.

Setting the record straight about Linda Sepp’s housing situation

A recent article in The Toronto Star is full of misinformation and inaccuracies about Linda Sepp’s housing problems. I’d like to clear things up.

By guestblogger Susie.

Linda Sepp

The Star reports on Linda Sepp’s house hunting and eviction in an article by Theresa Boyle entitled Can Linda Sepp possibly be helped? The article is full of inaccuracies about Linda’s situation that I’d like to clear up.

Before I pick apart the points, I’d like to make clear that I am a friend of Linda’s. No, we have never met, but we have emailed with each other daily for almost two years. We’ve laughed together, cried together, spent New Year’s Eve together, helped many people with MCS together, hunted for informational materials together, and built The Canary Report together into what it is today. She’s been my research assistant, and truth be told, she’s been my mentor as I learned the ropes about Multiple Chemical Sensitivity and the problem of toxic chemicals in the marketplace and the environment. Linda is very smart. The information that she shares with others is solid; I never have to worry about checking her sources, she always backs up her claims with data and reports, and she’s thorough with her critical thinking.

But Linda is also very ill and completely disabled by chemical sensitivities, fibromyalgia, and electro hypersensitivity. The old house she was living in prior to eviction on May 5, her home of 19 years, was full of mold, and she also was frequently exposed to toxic fumes wafting in from the outside. She was living in a precarious, unsafe housing situation. And as her eviction date neared, she was becoming more and more ill in my opinion, as her emails became less frequest, less engaged and sometimes merely fragments of thoughts peppered with uncertainty about her future.

The process of house hunting for Linda as her eviction date of April 4 loomed was complicated and fraught with difficulty. She is what is known in the world of Multiple Chemical Sensitivity as a universal reactor, meaning she is uber sensitive to toxic chemicals, and the smallest quantity of exposure to VOCs, pesticides, laundry products and modern fragrance (which contains known toxic chemicals), among myriad other chemicals, make her very ill very quickly. Recovery is difficult. This health problem complicates house hunting, complicates finding a safe place to live. Housing opportunities that might seem a godsend to someone who is healthy or has a less serious case of MCS, cannot work for someone as ill as Linda.

So let’s look at the article written in The Star by Ms. Boyle. First up, Ms. Boyle’s description of what Linda was asking for, which the reporter couched in an incredulous tone that says to the reader “Look at what this woman is demanding!”:

The woman, who survives on an Ontario disability cheque, said she would like a “modest” three-bedroom house on three acres of land, surrounded by trees and fresh air. It should include a sauna and a sunroom, porch, patio or gazebo for reading and artwork. There should be a small barn for chicken, goats and an animal rescue. And for guests, a bunkie and detox shower.

Except that is NOT and never was Linda’s criteria for finding safe housing. That was Linda’s dream house list (every person with MCS has a dream house in mind, am I right?), that list was never the working list that her landlord nor her housing team was using as criteria, it never was what Linda was asking for. Basically, Linda was asking for a nontoxic two bedroom with clean water and fresh outside air. Period.

Next:

But skeptics question the existence of MCS. They acknowledge that people can have chemical sensitivities and allergies, but wonder if it is a stretch to say these can be a debilitating syndrome. A June 2008 article in the Journal of Environmental Science notes that there is “considerable doubt” about the condition “from the scientific community, political leadership and many in the general public who claim that it is psychological.” The U.S. Centers for Disease Control and Prevention do not recognize it, the article notes. But it goes on to say that it would be irresponsible of public health officials not to explore the possibility of MCS.

Who cares what the undefined “scientific community,” politicians, or the general public think about MCS? What kind of reporting is that? Linda has sent Ms. Boyle copies of the current peer reviewed research on Multiple Chemical Sensitivity, which clearly shows that MCS is a physiological illness of toxicological origin. Linda is not pulling that info out of her hat, this is the peer reviewed research of Martin Pall recently published as chapter XX in the prestigious international reference work for professional toxicologists,  General and Applied Toxicology, 3rd Edition (2009, John Wiley & Sons).  Further, and just for the record, here’s a list of research on Multiple Chemical Sensitivity compiled by Professor Anne C. Steinemann and Amy L. Davis at University of Washington Seattle; this document lists about 100 citations for peer-reviewed journal articles that support a physiological basis for MCS. And I will note, the Centers for Disease Control just issued a chemical- and fragrance-free policy in all their offices nationwide because of the negative effect of those products on the health of their employees– the very products that make people with MCS ill.

Next:

Before forcing her out, W.J. [Linda's landlord] made the unheard of offer of buying a $200,000 house anywhere in the province and renting it to her for $500 a month. Her wish-list to the landlord was more reasonable than what she had provided to the city. She asked for wood floors, few stairs and access to a source of organic food. A house fitting the bill was found in Lindsay in February 2008, but after visiting it Sepp turned it down. It smelled of baby powder and made her feel sick.

W.J. proposed other homes, one in Huntsville and another in Lanark. The landlord offered to buy a Solo home, a prefabricated building that could be adapted to someone with allergies. All offers were nixed.

Although such an offer can seem above and beyond anything due Linda by her landlord, and although it can seem that Linda was unreasonable in refusing all offers, anyone with MCS knows that this deal is fraught with peril. At the most basic of levels, we all know the perils involved with a house that has been contaminated with products made from toxic chemicals like air fresheners and personal care products. I know dozens of cases of people with MCS renting homes that they thought they could decontaminate, only to be made sick for a year or longer until their lease ran out.

But Linda’s situation is more complicated than even people with MCS seem to understand. Linda was living in Toronto, unable to leave her house, and had people to shop for her. Part of her decision on taking the houses offered by the landlord was that she had to gamble that she would be able to move to the house and recover enough very quickly to be able to drive at least once a week, perhaps an hour away, to do her own shopping at organic markets. If she moved to a rural place in Ontario, not only would she have to be able to shop for herself, but also she would have to be able to handle the winters in Ontario alone in a rural setting. These are both huge responsibilities to take on if you are housebound and have been depending on people doing your errands for you. You can’t just “get it delivered.” The truth is that Linda had to take under consideration whether or not she could manage living alone rurally. That is a legitimate concern. Who knows if there would have been people locally that could help her after the move?

Next:

Friends and staff from the city’s shelter support office pored over real estate listings and thought they found the perfect solution: a $200,000 home in Bobcaygeon that had been built for someone with MCS. But Sepp turned it down because W.J. refused to pay an extra $45,000 to have a couple of extra walls installed. Besides, it had bad feng shui, she said.

This is by far the most egregious of errors in the article because it makes Linda look very bad when in fact Linda did no such thing as stated.  The landlord refused to purchase that house based on it being LISTED at $245,000, which was over the landlord’s cap of $200,000. The extra $45,000 had NOTHING to do with Linda asking for any walls to be built. The comment about the “bad feng shui” had NOTHING to do with Linda refusing an offer; at the most it was an off-handed remark made by Linda way after this house was discussed and rejected BY THE LANDLORD. In fact, had the landlord said okay to buying that house, Linda would have accepted it– I have the emails from her saying that she was ready to accept that house before she heard the landlord’s refusal to buy it.

I have received many negative emails and comments on both my blog and Linda’s blog (for which I am the admin) from people who think Linda is acting unreasonable. All the comments were generated because of this article by Theresa Boyle. I have not released any of them because I can’t see how they add anything valuable to the discussion, given that they were generated by misinformation.

To Ms. Boyle: Please be very careful about how you report on this story. Check your facts. Be open to exploring current research on MCS. Cross reference your information on Linda’s situation from two primary sources, as is your responsibility. This is a drama playing out in public about a woman whose housing problem represents the housing problems of thousands of people with Multiple Chemical Sensitivity. Please do not add to the din of misinformation that hurts our community and adds to our struggle for full recognition, full health care, and full social services.

And to those of you getting mad at Linda for her not accepting so many offers of housing: Please try to use this as an opportunity for practicing love and compassion. Judge not lest you be judged. Linda is a member of our community, a valuable member, and this is a time when we can open our hearts and do nothing but love each other. Anger serves no purpose whatsoever. Our job, as human beings on this blessed Earth, is to be kind and to love. Just do it.

This post was originally published at The Canary Report.