The Locations Effect*

Here’s the thing. I don’t think it’s coincidence that it has been so humid in Seattle this month and I have gone downhill. I have been using the dehumidifier every day and I didn’t have to turn it on once in the last six months. This is something I am so reluctant to write about because it causes me such terror and grief. More for my husband than myself. If this climate, this city, this house is making me sick, I would move. I could make that decision today. When you lose your career and your social life, become housebound and fear death, there is nothing that seems too drastic or impossible. I’ve been too sick to go anywhere, see people, call family, read books, so what do I care if I have to leave the place I have called home for 19 years? Well, I do care, of course. I have been too immobilized by fear all this time to even consider it, let alone talk about it, let alone do it!

But, the most difficult part for me is that the hardship falls on my husband. He is the one that would have to sell things, pack things, clean things. He is the one with hard-won seasonal landscaping clients. He is the one that has poured his heart and soul into this home, tearing down walls and building bathrooms, replacing piping and electrical, building porches, patios, vegetable beds and fences, tearing out the furnace and installing under-floor heating, slugging through the crawlspace and sweating around the attic, replacing every shred of insulation that was infested by rats when we first moved in.

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He is the one that has spent 8 long years growing this garden oasis. Every single day that he doesn’t work — summer or winter — he has been in the garden doing whatever it is that people who love landscaping and plants do. The trees he has planted are glorious and you all know the fireworks show of flowers that I have documented here.

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He has done work-trade for plants and materials, used reclaimed stones and bricks to build paths and retaining walls… he has mulched and pruned and dug and mowed every day for 8 years and, until recently, I could never see the art that he knew would reveal itself. While I was confused by his choices, he could see the future colourful landscape and, one day, there it was… Ooohhh, that’s why you cut back that hedge so aggressively! Ooohh, all that green actually blooms eventually! That’s why you put that tree there! There was a reason for every brush stroke, only it took years to see the full painting. And we thought we’d have forever to enjoy it. My heart aches for him more than anything — that he might have to walk away from his slowly-created and lovingly-tended artwork.

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I know how lucky I am. I know I’m lucky to have a husband who takes care of me. I know I’m lucky to have had this home and to have had some savings. I know I’m lucky to have possessions in the first place to be able to sell. I could have started off from a much less stable position, without family support. But it doesn’t make it any easier. I don’t want to leave this house. My husband and I said our vows in the back garden. But, it is an inevitability because of loss of income. Leaving Seattle entirely is a different matter.

I have never taken Seattle for granted. Every year I am grateful that I don’t live with crushing heat and air conditioning… we don’t have freezing storms, frozen pipes, snow drifts, hurricanes or tornadoes…. don’t have to worry about mosquitoes, biting bugs, fire ants, huge spiders… I love all our doors and windows open 5 months a year and never having to think about insect repellent or ticks or West Nile virus…. I love the mountains and Puget Sound, the abundance of good food, farmers’ markets, clean water… I love the laidbackness and the passion of the people here… the music, art and theatre here… the politics, universities, the companies that make their homes here… I don’t want to live anywhere else in America…. But… what if?

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Recently, Jen Brea, who is making the film Canary in a Coalmine, had some remission of her symptoms in Utah. I looked up today’s temperature and humidity in Salt Lake City and it is 88 degrees and 24% humidity. Here in Seattle, it is 61 degrees and 63%. Dublin, Ireland is about the same. My whole life I have lived in this climate and I need to test something different. I want to not only test a different house, but different air. If I could, I would travel to the Carribean or Europe, but the reality is, if I can be healthier in, say, Winnemucca Nevada, shouldn’t I go there? Can I separate living from all the things I thought equaled living? If I have no friends, no dogs, no home, no job, no possessions, but I’m not (as) sick, is it worth it? If I’m healthier, but I have no access to community because I’m living so remotely, can I be happy?

I can’t even begin to describe the lives of extreme mold avoiders. I have delved into that world for about six months now — watching videos, reading blogs and articles, listening to discussions in Facebook groups — it is harrowing and heartbreaking. No one can comprehend the pared-down, nomadic lives that people lead, leaving everything and everyone behind to travel the country looking for a safe place to sleep, their few possessions in garbage bags. Putting down shallow roots until something goes wrong — water intrusion, insecticide spraying, air quality changes — and then having to move on again to the next motel, campsite or friend’s driveway. I don’t know how they find the strength. But, my first step has to be getting out of here and testing how I do somewhere else. Part of me is hopeful and excited that it might make a difference and part of me thinks our little family will never survive such upheaval and I’ll somehow have to go it alone. As it stands now, I have to figure out where to go, when to go and who will take care of me until I can take care of myself. Gratitude pours from every fiber of my being for those of you that have offered to travel with me and help this quest: friends, siblings, parents and dear husband, I wouldn’t have a chance without you.

gardenriley

 

*The Locations Effect is the name of an online forum and Facebook group started by Lisa Petrison to report “on places where people have experienced improvement in chronic neuroimmune health conditions.” She is also executive director of Paradigm Change, a “not-for-profit organization with a primary goal of encouraging the exploration of the hypothesis that certain diseases involving the neurological and immune systems may be ones of toxicity.”

 

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17 thoughts on “The Locations Effect*

  1. Kc says:

    Sometimes I think you and I are living parallel lives. It’s truly how Erie how your thoughts are so similar to mine. I am also in the place of thinking of traveling somewhere to see how it will affect me but I am in a functioning place right now and scared to do anything to jeopardize it. Also scared not to…

    Like

    • Kc, tell me more. Are you ill with ME? So sorry you are in the situation of being too scared to travel and too scared not to. I know it all too well. It can be panicking. Hope you are ok.

      Like

  2. kneillbc says:

    Wow! What a frightening thought! I live in Vancouver, BC, and we have the same climate, the same west-coast lotus-land culture. I’m originally from the Toronto area- and I am SO glad to be out here. I can’t imagine the desperation it would take for me to leave this place to seek out lower allergen air. For me, it would also involve a move of country, from one where I have universal healthcare and am on long term disability from work, so even if a better climate would be better for my health, it just isn’t an option unless I win the lottery. On the other hand, I’ve done what I can to,control my personal climate. I have a humidifier, and a de-humidifier. I have a very, very expensive air filter, one on the whole house, and an extra in my bedroom, there are no,books or papers in my bedroom, etc., etc., etc. It isn’t perfect, but it really does help. When I feel pollen and other smell overwhelmed, I retreat to my bedroom, and it really does help. Perhaps it doesn’t have to be either or. Perhaps you need to find concrete construction, central air with electrostatic filters, hardwood or ceramic floors, etc. not as magical as your current house, but perhaps lower on the allergy scale than this current house can be found in Seattle. I hate to think you’d be forced to leave your adopted hometown, especially without first trying other things, and knowing for SURE it would make any difference. It seems a touch drastic to start by picking up and moving lock stock and barrel.

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    • Karen, sorry about the delayed reply. After returning from LA this week, I am MUCH MORE grateful for Seattle’s weather. That goes for Vancouver, too. Trust me, we’re ok up here! I’m newly in love with our climate. Getting an air filter for the whole house is a great idea. Do you have any info on that? It would probably involve me winning the lotto, but a good thing to look into.

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  3. bertieandme says:

    I see myself if you soooo much when I first got really sick. I jumped from one thing to the next trying diets, excluding chemicals, taking shed loads of supplements, doing yoga breathing, acupuncuture, reflexology and everything else to get well) – I was just desperate and positive the ‘cure’ was just around the corner.

    When I was bedridden chemicals affected me in a major way. I couldn’t even look at a newspaper because the smell of the printer ink affected my breathing. I had to paint the inside of my home with special chemical-free organic paints as the regular stuff made me so ill. Like you I read about people with total MCS who were living in tents in the garden – the thought horrified me.

    I had an awful cough/breathing issues which I was convinced was mould related – I live in a very wet climate in a 300 yr old house, I’m sure there are mould spores everywhere! However, after 7 years it turned out my cough was silent reflux and nothing whatsoever to do with mould!! Treated the reflux with drugs and now I have no cough or any breathing problems.

    As I began to stabilize chemicals affected me less and less and now I have zero problem with them. I can wear perfume, I clean the loo with bleach, I use turps to clean my paint brushes. It’s your immune system that’s the problem, not your environment per se. If you can find what your particular issue is (mine was histamine/mast cells obviously) and treat that there would be no need to move anywhere.

    Just do one thing at a time Elizabeth. This year concentrate on your diet and try to get that sorted. If you don’t get anywhere with that *then* you can look at other things. You already might have to leave your home, but move nearby where you have support and friends and family – emotional wellbeing is just as important as physical. You are so lucky to have the support of people who love you – don’t leave that behind unless it’s the very last option you have left.

    Just my perspective from my own experience. Jak x

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    • Jackie says:

      How refreshing to hear a success story. I’m so happy for you!

      Liked by 2 people

    • Jak, you make me smile. All the things you listed I have tried ~ and more, of course. I know the problem is my immune system and not my environment, but I get terrified that my immune system won’t have a fighting chance unless I make some big changes. My husband keeps mentioning the dogs and I completely shut down the thought. Yes, I’m allergic. Yes, they are dirty and hairy and dandery… but, even if I spontaneously recover after they die, I won’t regret these years. You understand that, I’m sure. I just have to do the best I can with what I have. And, I hear you about doing one thing at a time, but don’t think it’s in my personality. I must do it all and I must do it all RIGHT NOW! 😉
      X

      Liked by 1 person

      • bertieandme says:

        When I say to someone “you make me smile” it usually means “what a stupid comment – I now want to slap you upside the head!” ROFL 😉 I’m with you on the dogs issue. I’m allergic to mine so just keep taking the anti-histamines and itch and sneeze a lot – no way I’m getting rid of my baby! x

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  4. Vicky-Louise says:

    I had partial remission of symptoms in the desert – Eilat in Israel when I was 15. Eilat, we were told, is somewhere people with allergies, asthma and arthritis etc were going to because it made them feel better and people’s allergies would go away. I cried in the airplane when I left! I later went to Abu Dhabi when I was 23 and had some improvement; when I went it was the dry season.

    Unfortunately like you said, it’s really complicated to find a way to make those changes more permanent (moving etc). In my case I’m not sure if part of the benefit was also the warmth and sunshine. I would need to test more to see if it is the dryness/lack of humidity or the sunshine/warmth/heat or both.

    I would really like to see if somewhere like the Canary Islands or Malta would suit me.

    Like

    • Vicky-Louise, I love the Canary Islands. I’ve thought about that. It was easy getting there from Ireland, but don’t know if I’ll ever be able to travel back to Europe from Seattle. Obviously, this isn’t the answer to our illnesses. I know you have autoimmune thyroid disease, like I do, so there are always going to be additional factors on top of M.E., but we can dream… x

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  5. Jackie says:

    I agree. It is hard to pin down exactly what factor is helping symptoms.

    Liked by 1 person

  6. Jackie says:

    I have lots of thought but just woke up. So, I just wanted to say you’re brave and if you test out new locations via mini vacations, don’t forget to count in stress reduction as a possible factor in addition to the factors others have mentioned.

    Like

    • Absolutely! And probably time away from phone and computer screens and time away from my dogs and their dander and dust and the joy of being somewhere else for the first time in two years! So many confounding variables. 🙂

      Liked by 1 person

  7. Janis Bell says:

    Heart felt sympathies. It is tough to leave. I left in desperation (could no longer set foot in house without overwhelming symptoms), and my husband lost the garden he spent 10 years building, our friends, and the house we renovated–and he is angry and resentful. We live in a shitty travel trailer in the desert heat. But despite all the survival difficulties, I couldn’t go back to feeling as sick as I did in Ohio. I wish I’d known enough to leave 10 years earlier. I might have recovered more quickly and more completely. The secret, I believe, is to leave while you still have financial resources and when your body is young enough to restore and repair itself rapidly.
    And you don’t have to go to Winamucca to get well. I’m outside of Palm Springs, and planning to build in a really beautiful area. There are stores, movies, restaurants — and the air is not clean but it’s low enough in the toxins that trigger my ME-CFS and CIRS symptoms.

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    • Janis! I didn’t realise. Wow, you have gone through exactly what my husband and I dread and I can imagine the toll it takes on your relationship, too. I am so incredibly sorry you lost that life you had built. But you have given me such strength with this comment. “I wish I’d known enough to leave 10 years earlier. I might have recovered more quickly and more completely.” Yes! I needed to hear that. We may not move, but, you help me understand that it’ll be ok if we do. Thank you. X

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  8. Lindsay says:

    i often wonder what affect different locations would have as well. the climate here on the left coast is mild, but higher humidity than i grew up with. i don’t travel much, and even then it’s usually just for a few (stressful) days, so it would be interesting to see what kind of affect different locations have!

    p.s. LOVE your photos!

    Like

    • Thanks, Linds! I wouldn’t have ever thought of a different location if a doctor hadn’t given me a urine mycotoxin test that came back high. Suddenly, I thought, OMG, what if it’s my house? I don’t really think it is, but the thought nags at me.

      Like

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