Stories From Behind The Bubble‏

This is an idea I had in 2006, before things totally fell apart in my life… I’d like to resurrect the idea now.

Is anyone interested in writing about their life with MCS/ES so we could put together a book with our stories from behind the bubble?

writing

Real life, from the heart, whatever you think is most profound about having MCS/ES in your life. How you got it, what you can and cannot do, how your life has changed, what you’ve learned…

I’m thinking education, storytelling, counteracting media manipulation with stories about reality, about conquering adversity, or surviving the best we can. Anything to inspire some waking up and truth.

If we got a bunch of stories together, and some media /marketing genius behind us, we might be able to inspire people somehow, with our trials and tribulations, our courage, wit and wisdom…

Something got me thinking this might work, if you are willing to share your stories.

Anybody interested?

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33 responses to “Stories From Behind The Bubble‏

  1. Uhh, yeah. You know me. I am in.

  2. Hi LInda, I wrote to Our Toxic Times in the 1990ies about writing our stories and have it in a book about this. I got a letter from Allison Johnson, that her book was in printing on that and so she had an ad in that before I was subscribing, so there is one book already. but many years have passed and many more people have been getting MCS, chemical injury. Ellie

    • One day I’d like to read “Amputated Lives” by Alison Johnson, but she hasn’t made it available as an e-book yet (as far as I know, I haven’t checked recently) and I can’t have new paper and ink books around. She has read some of it to video, it’s on her website and YouTube, so I have had a taste of it. She does such important work! (I link to her site in the sidebar here)

      Did OTT put together a book? That I have not heard about.

      And yes, more people are getting MCS/ES, the chemicals and radiation exposures have become so much more widespread. I think also the social climate may have changed somewhat. Many new stories now…

      • I am also sensitive to most new print, but ordered the book, and it is not bad at all as far as emisions

        • Isn’t it wonderful when something is less toxic than most things?
          I’ve had to lay off print books (unless I read them at least a couple of times years ago).
          Even the mail causes problems for me.

  3. I’m interested. I’m not media shy, so long as I know my words won’t have ‘spin’ put on them. Oh, and I love writing 🙂

    • Excellent! No spin!

      I’m looking for short stories, not life stories, but maybe a brief intro with excerpts of one or two of the most profound impacts and changes in your life.
      (I think realistically, this will take many months or even all year to assemble)

      Plus, what you would like to see, as a result of these impacts/changes, in a perfect world

      • That’s easy: what I’d like to see: safe schooling, social inclusion and awareness…

        I think it might be good to set some guidelines, at least for me and some others. Things like a word limit.

        The perfect world part is inspiring because this will allow us and others to see what is possible.

        • Guidelines… hmmm…

          …short stories, not life stories, with brief into if possible, the main part being of one or two of the most profound impacts and changes in your life.

          Plus, what you would like to see, as a result of these impacts/changes, in a perfect world. Let’s inspire others!

          I don’t know word counts, but I’m thinking 1-3 pages per each subject/impact = manageable short stories, both to write and to read.

          A person could contribute several such pieces if so inspired.

          I think the book could be divided into sections like “family”, “friends”, “education”, “work”, “health care”, “spirit”, “shopping”, “inclusion/exclusion”, etc…

          Any other ideas?

          • Linda, thanks for your response.

            I think it would be wonderful to have a celebrity who suffers from MCS or knows someone who impacts his/her quality of life directy to write the foreword to the book.

            However, I think each person should write his/her story, giving them a word count to meet (perhaps 5,000 words). The editor would categorize them under major parts within the book. Each story must meet certain aspects of their journey as you itemize here….

          • Thank you!

            Having never edited a book, or even researched the process, I am relying on helpful ideas from those with more experience!

            If the project has merit, and enough people are interested in contributing, hopefully all the pieces can fall into place at the right times.

            If anyone knows any celebrities with MCS/ES who might be willing to write either a chapter or foreword, please do ask them!

          • Linda, you’ll need to provide guidelines (essay format, 5000 words, etc. and a call for paper with a deadline, how to submit, etc.

          • I suppose for professional writers or academics, that would be the way to go, but as I have not worked under those conditions, I don’t know how to make those guidelines.

            For now, the closest I can come is what I’ve said before.

            I can add that it would be nice if people could submit within 6-9 months, writing with brain fog and survival challenges can take time.

            I’ll post an email address when I’ve made up a new one for the project.
            I’ve been hit with a few exposures that have taken my energy away from the blog and this project.
            Hope to be back to it soon.

  4. This is very promising, Linda. I had a similar idea but not with any real steam. Would be happy to contribute a chapter.

  5. Great idea! I’ve been kicking this idea around for a year or so since I started my EI journey!

    • There are people without internet access who could benefit from knowing they aren’t alone.

      I’d really like people to include what you would like to see, as a result of these impacts/changes, in a perfect world…

      Let’s share what reality is like in some way, and what it could be like when we imagine a more inclusive, less toxic world!

  6. I would also be interested

    • Excellent! Start writing!

      A short story, not a life story, but maybe a brief into with excerpts of one or two of the most profound impacts and changes in your life.

      I think realistically, this will take many months or even all year to assemble

      Plus, what you would like to see, as a result of these impacts/changes, in a perfect world.

  7. Hi Linda. i have just joined your blog no idea it existed. I will take part in your book, i am just about to launch some talks here in Australia. I am doing a similiar thing here. I have gathered the stories of a few people here. Nightmares! I only know a few people here that have written their own books on the subject having lived the illness. I can ask them. Once its done it will be ok, but i suggest someone who has done research, sherry rogers? and that other lady who did the study on washing powders etc. or Doris Rapp? Dr Rae? Brain fogged today 🙂 Get everyone to write a page! Why not! Let me know more details…

    • Hi Dianne, thanks for wanting to share your story!
      There is strength in numbers!
      I haven’t developed any other rules or guidelines, other than some details in the comments here.

      I think once I have some finished stories, then I’ll be able to ask someone more well known to add something. It’s a great idea!
      I’ve been in touch with a number of the researchers and doctors over the years, and I’m pretty sure at least some of them would agree to contribute a few words.

  8. Hi, Linda,

    I am a writer and editor, as well as a long-time sufferer of MCS/EI and severe ME/CFIDS (32 1/2 years). I became aware of your circumstances and struggles several months ago, which led me to this informational oasis

    I would be interested in participating in this project. I should mention that I am currently distracted and more disabled than usual, as I actively/frantically seek a safer place, preferably in the Ottawa area; of 41 moves in 32 years, my present place is the most toxic and life-threatening. (From what I can gather, Barrhaven is the only place offering units more attuned to MCS needs.)

    I look forward to learning more about this writing project once you have decided on submission guidelines. I am new to your site and gingerly feeling my way around, so please forgive me if mentioning housing in the writing section was out of place.

    Maureen

    • Welcome Maureen!
      So sorry you have the need to find my site and safe housing.
      We can’t write well (or perhaps that is edit well in my case) when our brains and bodies aren’t stable, and for that we do need safe housing.
      If you haven’t already done so, please do apply for Barrhaven. People don’t move out of here that often, and I don’t know how long the wait list is, but it definitely shows a need the more people are on it. You can also apply for the Quebec project that will be built soon…
      I hope something safe enough for you somehow materializes soon!
      My own life plans keep getting derailed so I haven’t had the cognitive clarity to research appropriate guidelines for submissions, which it seems are needed for a more professional effort.
      I’m used to doing things more organically and having them come together, but it’s been a long time since I had the ability to pull that off too, aside from throwing together some blog posts these last few months, so if I need to get more professional about this project, it’s going to take more time.
      Anything that requires thinking and learning new things is still very challenging for me. I don’t have a professional brain injury assistance program, so am doing what I can on my own, and it’s taking time… sometimes it seems a very long time…
      There is no race happening here.

      • Hi, Linda,

        Thank you for responding to my earlier post (again, I’m hopeless at navigating sites, so please forgive my ineptitude as to placement of this) regarding writing about our experiences and lives, with MCS, as well as for your suggestion re. Barrhaven. I was in the process of applying to Barrhaven at that time. My family physician (an MCS non-believer until witnessing a year of my suffering and decline) completed a Request for Urgent Medical Status which I forwarded with my application to the Social Housing Registry of Ottawa.

        I became ill with severe ME/CFIDS 33 years ago (nursing my mother through terminal cancer in a mouldy house) and MCS followed. Because of that duration, I have lost my connections to the outside world, with the exception of a sister. It’s been an enormous struggle, my efforts for any assistance constantly fraught with brick walls, and my Barrhaven application is no exception. While I qualify (spectacularly) for subsidized housing, The Registry claims that I don’t qualify for urgency status, based on the following:
        “A member of the household has a serious life threatening medical condition made worse by the current housing situation and a change in housing will remedy the life threatening aspect of the medical condition.”

        I wondered if I might ask you, since you were successful, should you have the time to comment, if you think I have erred somehow in my approach or if information I provided (or failed to) may be blocking my success. I have barely two weeks in which to respond with an appeal. I want to apologize for any time and energy my query may take away from your own needs.

        I supplied The Registry with my diagnoses (and some supporting medical documents) and described the effects of toxic chemicals/fumes on my fragile health. I believe that severe MCS alone should qualify me; I explained in my application that I have severe MCS and that I am exposed to fumes from perfumes, cleaners, mould, etc., 24 hours a day in my apartment and building. I noted that chemical/mould exposures have resulted in seizures, unconsciousness and severe weakness, render me in danger of anaphylaxis, and exacerbate existing illnesses. I explained that the fumes (much that is in parentheses here was not included):
        – worsen my Addison’s Disease (a life-threatening endocrine condition which these chemicals, which are endocrine suppressants/disruptors, affect);
        – render me extremely weak and bedridden and affect my ability to digest/assimilate food, causing extreme weight loss – down to 74 pounds recently. (Each fall here, there are additional chemicals in the forced air system for months, which smells like a pesticide for rodents, so I become increasingly sicker each winter. Last December, at 74 pounds, unable to assimilate food, I became extremely weak/bedridden for about two months, and was without any help. That is life-threatening! My doctor made home visits, but there was nothing he could do but plead with me to try to hang on and will myself to live. He applied for home care for me, but I was refused assistance bathing because a worker might hurt her back, cleaning, because they no longer provide that service; and meal preparation – I was told to apply to Meals on Wheels [I can’t tolerate any chemicals/preservatives in foods – I have collapsed and become incoherent, so that’s out]. The previous year I was rejected and told it was because I didn’t have a cancer diagnosis);
        – cause lung pain, constant cough, and difficulty breathing which can last for months (in the past, I ended up in emergency and was told to leave my residence immediately, easier said than done);
        – worsen my heart condition (ME-related borderline heart failure) and cause arrhythmia, palpitations and tachycardia for days, weeks and sometimes months (again, life-threatening), depending on the type/duration of exposure. (I had an emergency admission for this last year);
        – cause immune problems and exacerbate existing autoimmune conditions. I supplied blood test results indicating lowered WBC count. ME/CFIDS, hypothyroidism and Addison’s fall into the autoimmune category; in addition, fumes here have caused rapid acceleration of vitiligo, alopecia and a disfiguring, fusing skin condition. (It was like a wildfire burning off my pigment, and taking almost all of my lovely long, thick hair with it). The latter three autoimmune conditions may not be life-threatening, but they are indicative of my immune system being damaged;
        – worsen my cognitive problems and brain damage (ME);
        – cause spine/bone pain so excruciating that doctors once bored into my hipbone, suspecting bone cancer. I also experience fractures more often during times of exposure. I have suffered 22 fractures (vertebrae, hips, legs and ribs) and cannot tolerate any pain medications. (Although this may not be life-threatening, my physician and I included it in my application, as it is disabling effect that affects my mobility); and
        – cause painful rashes as well as growths, each of which has to be biopsied. (I had a large portion of my nose removed due to cancer.)

        Perhaps my doctor and I provided too much information? Or perhaps there is some MCS literature I should provide to indicate that this is a life-threatening illness? It’s so difficult to comprehend how they could have come to their conclusion.

        The Registry also wrote, I suppose because my doctor and I mentioned a mould problem: “Maintenance problems identified should be addressed with your current landlord or Property Standards.”
        I explained to The Registry that I cannot tolerate many repair substances or regular paint (this suite was intentionally not painted before I moved in) or workmen entering my home since they all seem to wear chemical scents. The most recent workman was saturated in cologne, which left me bedridden for two days, drifting in and out of consciousness. This, despite CERA informing the landlord that this must not happen, because of my disability. (Tyvek suits were unknown to me, before your site; I was wondering if you supply the suits when someone must enter your home?) I explained that caulking used during a surface mould removal offgassed for a year, during which time I couldn’t enter my bedroom. (Neither CERA nor I could convince my corporate landlord to MCS-safely fix the mould problem. They responded with hostility and intimidation. Two perfumed goons from head office entered my bedroom and denied any problem. I pointed to the obvious mould and a battle royale ensued, leaving me depleted from cologne, mould and stress and with swollen glands and no voice for days. They then wrote saying I would be held responsible for all repairs and sent a $43 rent increase notice.)

        But mould is merely part of the problem; even without it, I am still overcome by fumes from the perfumes of neighbours in this apartment and building or any multiple dwelling. My hospital grade air purifier doesn’t seem to help. I can’t use the contaminated laundry facilities; sometimes I must wash sheets in the tub with these weak arms. I can’t even open my windows; there’s a bus stop below my window, which I didn’t notice the day I viewed the place, and lines of cars idle below at rush hour.

        I spoke with an employee at The Registry before applying and she seemed to understand this condition, its seriousness (that it is life-threatening!) and the need for a safe environment. Isn’t that the purpose for which those suites at Barrhaven are set aside? I even carefully specified in my application that Barrhaven was the only residence from their long list of residences that I could apply for, as it was the only one (I knew of) offering suites safe for MCS/EI sufferers. Why else would I move to an unfamiliar city where I know no one?

        Yet, inexplicably The Registry also wrote: “The Social housing Registry of Ottawa suggests that you consider adding additional housing selections, as limiting selections may prolong the average wait times.” Grrrr. Considering my disability, documents and request for that one MCS-safe building, why would they suggest I widen my choices?

        I don’t have an MCS specialist. Might this be a problem with my appeal? In my series of brick walls, for the first two years in this new city with a surplus of doctors, I applied to each MD taking new patients and not one would accept me as a patient: “Too complicated.” “If I took patients like you, I’d go broke.” “All you people with these ‘syndromes’ just need to go for walks and get some sunlight.” I was tested for allergies/sensitivities in 2001 in Mississauga, but that doctor has refused to provide me with my test results for over seven months; I’ll have to launch an IPC complaint.

        I did provide The Registry with a prescription from my previous MD, stating that due to my MCS and environmental allergies I require control of my environment; my disability tax certificate describing my ME, signed by a world renowned ME specialist; copies of medical test results; and the Request for Urgent Medical Status completed by my current MD.

        All multiple dwellings have caused severe problems, but I managed to escape them in days, weeks or months in the past, when I still had contacts. During the near-33 years I have been ill, despite 13 spent in safe, stable environments, I have had to move 41 times.

        I feel strongly that I can’t hang on much longer. I don’t have much time or vital energy left, I’m 68, and because rental here is more than my pension and GIS (I lost my disability pension when I turned 65), I am running out of savings. Homelessness with ME’s debilitation would be a death sentence. A placement on Barrhaven’s list seems to be my only hope, but, again, time is of the essence.

        It’s difficult to imagine how, with the information I provided, this conclusion was reached. I must be missing something/erred somehow. If you feel you have any wisdom to offer and the energy/time to do so, I would be most grateful, Linda, but please don’t feel obligated.. I’m so sorry to trouble you and that this is so lengthy. My brain and editing skills seem to be shot all to hell in this toxic environment.

        Thank you so much. (Your posts are welcome arrivals in my mailbox.)

        Maureen

        • Dear Maureen,

          The problem is not with your application, or your lack of “medical credentials” (sigh) but with the lack of available units!

          There are only 7 units here and my understanding is that when one becomes available, it would go to someone who is homeless, if there is someone homeless on the waiting list. Then they look at the others, and who’s situation seems most dire.

          I was homeless for over a year when I got the call. I spent a winter in a summer cabin with no water, (somewhat better than living in a car) but that put me close to or at the top of the list when this unit became available.

          I think the last time a unit was available before this one was possibly 5 years ago, but I don’t know what year for sure. I have been here almost 2 years now. One unit has had the same tenants since the place was built. A couple of the units have had the same tenants for over 10 years.

          One of the two bachelor units was just recently vacated, so became available, but a woman who was homeless was given the unit. I don’t know how long she plans on staying, but I’m pretty sure the rest of us are not going anywhere, not anytime soon.

          Well, I am on the wait list to move to the safe housing project in Quebec, but they haven’t even started building that yet, so it could be several years before I go (unless I meet a premature end due to lack of accessible health and dental services).

          There’s a real shortage of medically required safe housing, especially it seems when we are financially disadvantaged, disabled, older women…

          The only way more will get built is if there are motivated, healthy community groups willing to take it on.

          • Thanks very much, Linda. I get it, re. Barrhaven – but I think I may as well appeal anyway, The Registry rejected me not only for Barrhaven but for all of their buildings, and they were very specific that they had denied my application’s urgent status because my illness was not life-threatening. I knew there would be a wait of some time for Barrhaven (if I were on their waiting list), but there was no indication in their letter that I would even be placed on their waiting list at all.

            If I didn’t have ME, I too would be living in my car or outside (as I’d had to do for a time in B.C.) but because I am so disabled with ME (unable to sit, walk, swallow, use my arms, etc. for long periods of time), I can’t even make it to my car. My organs have been steadily shutting down for months now, so as things stand, it’s unlikely I will make it out of this building alive.

            Thanks, again.

          • I think the politicians who refuse to instill ? laws and policies and funding that provide equal access to health care and medically required housing have blood on their hands. That they jet set around and have posh meals with taxpayer dollars, and then give $ to profitable corporations instead seems criminal and completely heartless and inhumane too.

            I didn’t get the impression that they didn’t put you on the wait list, but that you should consider other options too just in case something else opens up for you.

            If you are in need of a subsidy AND specialized medically required housing, then you should be able to get what you need… but I don’t know how to make that happen. Probably takes a lawyer and a long drawn out case at the Human Rights Commission.

            If I could get out to buy lottery tickets, and win, I would help… and build many safe units…

            If I could get out to socialize and meet people who would gather the teams and resources required to get more safe housing built, I would…

            but my “social” life is next to non-existent, except for online, and an online life doesn’t lead to the same connections that are possible when people meet in person.

          • Thanks again, Linda. I, too, have had the lottery win fantasy, and my dream was always to build a safe place and provide care for both ME and MCS sufferers who aren’t safe or being taken care of. My power dream.

            I don’t know what The Registry is thinking. I’ll just file an appeal; I’ve nothing to lose.

            I usually tend to sugar-coat everything, including my writing, with humour, but after 33 years of this humbling illness; poverty; a memorable hospital standoff and attempted institutionalization when I was accused of being mentally – not physically – ill; a diagnosis only after 50 doctors and after I brought the symptoms of ME to the attention of a doctor; loss of any semblance of the life I crafted and so valued – I’m tired and anxious about dignity at this stage of my journey.

            Thank you once again, Linda, for you time and kindness.

            Maureen

          • All signs are pointing to the fact that we humans have to start being kind to each other and the planet if we want future generations to have a quality of life that is better than what those of us who are now suffering with “controversial” often petrochemically caused chronic disabling illnesses experience.

            Accumulating and competition cannot bring happiness or quality of life in a world where there’s no clean air or safe water.

            Let’s hope enough people get that message.

            And in the meantime, I do hope and pray that some angels in human form (calling all angels) do what it takes to get you into the medically required safe housing that you need

  9. Time flies when we have MCS/ES and get disabled by common exposures…

    I have been thinking, when able, that for now, a book is more than I am up to professionally coordinating. It’s an idea close to my heart, but my brain is not there and able yet.

    However, if anyone is interested, I would love to post some of your “Stories From Behind …” here.

    If you are interested in writing something for the blog, please leave a comment here saying so, with a brief description of your story, and instead of posting the comment publicly here (all comments are moderated), I will email you. .(I don’t wish to post other contact info here publicly at this time)

    I can do minor editing, but would hope that your submissions are pretty much ready to go when you send them, so all I’d have to do is set them up and find and add a photo (or you can include one of your own later by email if you have one).

    Maybe someday I’ll be up to doing more, but I don’t know when that day may be. Every time I’ve had a short improvement when I feel up to doing almost anything, it has been followed by an exposure and a longer setback when I have trouble finding my way to the door…

    Such is my life with MCS/ES…

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