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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In The Garden This Week

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Spinach and Kale and Chard, oh my!

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Harvest Moon out my window

The Summer of Spiders

The Summer of Spiders

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New fence…

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…courtesy of my husband.

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My Momma!

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Bee rock to go with the ladybug rock ~ from my nieces. 🙂

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Beautiful Baby A. (Z. and J.’s little girl)

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Last of the Seattle Summer Sun

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AUTUMN!!

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imageMy very own SCOOTER! Stay tuned for a post on the exciting story of how this came into my possession. 🙂

New in the garden this week.

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“At first, just one, a glossy purple clot
among others, red, green, hard as a knot.”

My husband scored a free wheelchair. We haven't used it yet. It's parked in the garden.

My husband scored a free wheelchair. We haven’t used it yet. It’s parked in the garden.

New pink bloom needing the wheelchair for support, like I do.

New pink bloom needing the wheelchair for support, like I do.

Magnolia: they really do only last a day or two.

Magnolia: they really do only last a day or two.

Slug tracks on the dog bed on the porch. Ew.

Slug tracks on the dog bed on the porch. Ew.

There was a huge spider web blocking the path to these new, tall, yellow flowers, so I had to take the photo from inside the house, through the window screen. I don't do spiders.

There was a huge spider web blocking the path to these new, tall, yellow flowers, so I had to take the photo from inside the house, through the window screen. I don’t do spiders.

Branches growing out of branches.

Branches growing out of branches.

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Hubby and sunset.

Hubby and sunset.

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True story: This was the balloon my sister got for my husband for his birthday in April. We kept it as it lost its buoyancy because it cheered me up. The other day, I was in the bathroom upstairs and this big yellow smile floated across the window. It was very surreal. An air current had somehow sent it out the open back door. I found it stalled on this branch, but couldn’t reach it. Then it floated through the garden as my dog chased it and… up, up and away. I was very happy to watch it soar away, but it was a bit melancholy, too.
*Sorry for littering*

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See the smiley balloon in the tree? 🙂

Bye bye, balloon!

Bye bye, balloon!

Gone Viral

I’m sneezing, I’m short of breath, my nose won’t stop running, my throat is sore, my muscles ache, I’m exhausted, I have a headache, my temperature is 99.7 degrees, my face is flushed but my feet are numb, I’m pasty, and my husband says I’m “more purpley-eyed” than usual. But I don’t think I have come down with a cold, flu or new virus. Such is the life of someone with ME/CFS. That doesn’t mean I’m not scared of catching something. I don’t have an attitude of “Why would it matter if I caught a cold? I’d just feel the same.” Instead, I’m terrified all day every day of coming down with anything that could pile hellish symptoms on top of hellish symptoms. I’m terrified of how it will feel and what complications I might have (asthma, bronchitis, pneumonia) and whether it will set me way, way back in my recovery. The current media hype doesn’t help. It’s all the news is talking about! Worst flu season in decades. It’s now at epidemic levels. Virulent strains that make you sicker and last longer than the usual flu.

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I think, there’s a flu epidemic every year, relax. But it actually seems true that this season is worst than most. If you read the comments after the NY Times articles, there do seem to be many healthcare workers saying things like, “I’ve been an ER nurse for 27 years and have never seen so many patients so sick with the flu.” There is a silver lining to my current situation: I don’t have to be out in the infectious world. Of course, that doesn’t stop me from worrying. This is the first year I haven’t had a flu shot and this is the first year I have known that recovery doesn’t always happen. I have my own personal form of PTSD. I’ve alluded to it, but it’s not something I’ve wanted to get into in depth in this blog because I guess there is some level of shame attached… I don’t want judgement. I don’t want eye rolling. I don’t want anyone to say relax or don’t worry or it’ll be okay. I don’t want anyone to try to give me advice on how not to have these thoughts. I don’t want anyone to insinuate I have to get over it/ get medicated/ get help. Most of all, I don’t want anyone to think I’m a hypochondriac. Because I’m not at all. Hypochondria is very different from fear of getting sicker. If anything, I have a tendency to ignore symptoms for too long ~ from insomnia to thyroid problems to my neck injury to the more serious stuff. Now I know: recovery doesn’t always happen.

Before New Year’s Day 2012, I never really gave viruses and infectious diseases a second thought. They never concerned me. I felt pretty indestructible, impenetrable, durable… I was able to overcome anything. When my husband was horribly sick with chicken pox, it never occurred to me not to tend to him, not to touch him, not to go to the doctor with him (quick aside: my husband is 12 years older than I and looked particularly haggard after suffering for days with the pox. I was wearing yoga pants, a hoodie and a baseball cap. The doctor turned to me and said, “Would you like to stay in the room with your father?” I looked at my husband. “Is it okay if I stay, Daddy?” I found this hilarious for ages until ME aged me considerably in the past year. Comeuppance).

One of the sickest people I’ve ever encountered was sitting beside me on a plane. I thought he might die from whatever horrible illness had him coughing, spluttering and moaning ~ but it never occurred to me to change seats or even point out to a flight attendant that perhaps he was too sick to fly.

I worked in restaurants my whole life. In the restaurant biz, you only take a sick day if you can get your shift covered. And that’s a difficult thing to do. So, there are always sick employees, there are obviously going to be sick customers, I am handling a lot of cash, I might lick my finger as I count out your change. I am handling your glasses, plates and cutlery and I don’t get a chance to wash my hands as often as I should. We are all stuck indoors together and, for most of my restaurant years, the rooms were filled with cigarette smoke. It never occurred to me to be worried about catching something. If I got a cold, I worked through it. I got bronchitis regularly and would work through it. I was once in the toilet at work sniffing, snuffling, trying to deal with a nasal mucus crisis and one of my coworkers thought I was snorting cocaine. Yeah, right! Nope, just trying to avoid snot falling on my customers while I take their orders.

In college, I remember going to the campus clinic because my chest infection wasn’t going away. The lowest number on the lung capacity chart was for a 4’6″ tall 80-year old woman. My lung capacity was below that. Off the chart in a bad way. I’ll never forget the doctor looking askance and saying emphatically, “You walked across campus just now? You have asthma. You have to take it seriously.” I still don’t believe I have asthma.

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So, I’ve had a lot of colds in my life and had hospital stays for weird things like suspected meningitis, lumber puncture headache and anaphylactic shock, but they never created any sort of ongoing anxiety or trepidation. Even after three or four trips to the ER for vasovagal syncope on the first day of my period, I still didn’t really worry about it. It wasn’t until one episode when my blood pressure and pulse fell very low and stayed very low that I started to get a sense of foreboding when my period was due. I would tell one of my friends at work what to do if I collapsed. If it were the weekend, I would be sure to shower “in case I have to go to the hospital” and I started to be cognizant of what outfit I was wearing for Aunt Flo’s impending visit (ever since the EMTs had to help me on the bathroom floor while I was wearing red underwear with hearts and a 15-year old threadbare tshirt that was literally hanging off the neck band in tatters. It was incredibly comfortable to sleep in, but I’m sure, as they entered the bathroom, they were wondering whether I was on the floor from a physical assault… or perhaps a tiger attack).

I started to get more cautious in 2011. I hadn’t come down with ME/CFS yet, but something was going on. I was having dizzy spells, but I chalked it up to low blood pressure. I was having bad neck problems that were giving me a hard(er) time sleeping. I had a collapsy episode in Ireland that had nothing to do with my period. My tongue swelled up for days, which hadn’t happened in a decade and was not alleviated by antihistamines. I had bronchitis and then a bad diarrheal sickness. I was under constant stress at work and it was taking a heavy toll. I became aware of sick people around me, not wanting to sit beside someone who was coughing, knowing ~ almost subconsciously ~ that my immune system wasn’t quite up for it. But I continued to push myself. Then I got the flu shot and the rest is history.

Which brings me to the point of this post. In those first few weeks of 2012, I developed what I affectionately call my Brain Virus because it happened so quickly and consumed my thoughts so thoroughly (let’s hope I don’t actually ever get a brain virus like the one I saw on Monsters Inside Me last night). I’d been diagnosed with malaria and told that I needed long-term drugs that could be dangerous to a sensitive system… but then they left me in limbo for two weeks while waiting for a second confirmatory blood test to come back. I was so sick and so spooked by my symptoms. I spent those two weeks in abject fear, ruminating about the anti-malarial drugs and thinking, What if it’s NOT malaria? What the hell is wrong with me? During those few weeks, the Brain Virus ran rampant and suddenly I was scared of anything that might make me feel worse. Flu, colds, food poisoning, MRSA, flesh-eating bacteria etc. I didn’t become a germaphobe ~ I didn’t start cleaning obsessively or stop rolling around on the floor with my dogs or anything. In fact, I stopped using antibacterial soaps to try to make my immune system more robust. But my brain was talking a foreign language, sounding warning bells. Mr. Fear was on high alert ~ he was going to protect me, come hell or high water. I imagined him sitting on top of my head with an arsenal of weapons, peering frantically through night-vision glasses and binoculars, whispering warnings in my ear: Watch that cut on your finger that isn’t healing! Wash the outside of that avocado in case the knife carries the E. coli into the center! Hubby is sneezing, don’t kiss him goodnight! Having never thought twice about being in enclosed spaces with people, I started to sit in the far corners during management meetings at work. I watched a mother teach her son how to push the hospital elevator button with his elbow and I thought, why didn’t that ever occur to me?  And then quickly on the heels of that I thought, Jesus, hospitals are where sick people are! I know: duh. But I’d always thought of hospitals as places to make me better, not get me sick. So, I started wearing masks.

It’s not that bad anymore. Mainly because I have done a lot of meditation and worked hard on stopping the circular thoughts. Mr. Fear is an educated and protective friend when he’s not panicked, so I tell him: I hear you, dude, but I’m okay. There is no point in being worried until it actually happens. And even then, worrying won’t help heal me. It’s been almost one and a half years since I was sick with something besides ME/CFS. Maybe it’s because I haven’t been working and haven’t been out much. Or maybe it’s because my immune system is activated and attacking everything that comes near me ~ including me.

Another silver lining in this situation: It has quashed my old fears. My fear of flying has vanished. I am now afraid of breathing the air in a plane, but I’m not afraid of a plane crash at all. I’d welcome the chance to get on a plane. And I’d sleep in a tank of spiders for a month if I could feel unbreakable again.

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