Alternate title: Be Grateful or Be Miserable!
I had some really good brain and body days in the early spring, enough that they left an imprint on me of how it felt to feel (relatively, and almost) normal. instead of the usual:
Then shit happened… (sorry, I don’t usually use language like that, but I’ve lost access to some parts of my vocabulary lately as a result of the toxic stuff I was exposed to).
Pesticides, dental infections and extractions, toxic products and materials (including trying to replace a SS kitchen kettle -simple, yes? Actually, NO), summer road work, more and more pesticides, heat, VOCs, lack of ventilation and air filtration, which meant no ability to cook, and more…all of which resulted in some serious brain fog, cognitive problems, and drastically reduced physical abilities.
Back to the drawing board…
After having some good days this year, I crashed again, and I haven’t been able to recover… much… There can be a few better mini-moments here and there if the outdoor air quality is exceptional and the breezes have been blowing the “right” way, but nothing like how well I was doing for a while in the spring.
Which makes it so much harder now, because I can actually remember what it was like to be more functional. It was so long ago before, that it didn’t really come into play or into my thoughts, as for so many years, I couldn’t remember what it was like to think clearly, or to function without effort, with relative ease.
Is it really too much to ask to be able to function with relative ease? To not have every thought, every action be like climbing a mountain or navigating an obstacle course?
The recent experiences with a relative ease of being, and the remembering what living was like before what severe MCS/ES and toxic brain injury did to my brain and body, has been really, really, really hard on me, and the crash seemed so much worse (and more cruel) than previous crashes, even though I am still doing much better (relatively) than I was doing for so many years. It’s so confusing to deal with not knowing if or when my brain will work more like the way it was intended to work, the ways it used to work before toxic injury disabled me.
It can be very confusing (when cognitively impaired with brain fog and inflammation) and can be very miserable-making, when wanting things (like my mind) to be clear, not drugged, and wanting my body to function without feeling like I was in quicksand all the time, but having no control over when or how functional I will feel, ever.
I WANT to be able to think clearly, and I WANT to have a clean bed and clean clothes without holes… I WANT to be able to eat after 10 pm without having had to prepare it earlier in the day so that the sound of my blender doesn’t disturb all my neighbors, or to be functional enough to have the foresight, and strength to be able to prepare things in advance of needing them… I WANT to be able to clean when needed… I WANT so many other NORMAL little things… too many little things to mention…
Every time I see something here that I can’t change, and remember how it would be if everything wasn’t so toxic these days, if I didn’t have disabling MCS/ES, how I would rather have it be again, I become more miserable. There are SO MANY little and big things to be miserable about in my life, and so few to be grateful about, if I compare my life to almost anyone else’s life in the so-called “civilized” world.
I watched closely when the massive earthquakes hit Nepal, and how remote and simple so many villages are there, and how they lost everything, and I still found myself comparing my life to theirs and wishing I was there because that would be easier! I’ve wanted to write about that, but so far, haven’t been able to do it any justice.
I don’t remember feeling so miserable about my life with MCS/ES the years I could barely function, before my brain fog started lifting, or even as I was first deteriorating. And after months of exposure induced misery, I finally remembered to think about what was different now, what had changed or been reset in my brain? Memory issues are common with MCS/ES. Forgetting why we did things after something changes is common, and can be recurring with exposures.
I was fortunate to run across a reminder of what I did so many years ago that was so helpful, and so it seems that I am having to start doing it all over again, and what it comes down to is that I have to change my thoughts when I can’t change anything else.
Note that this doesn’t magically make my circumstances excusable from a societal perspective, it just makes my life more bearable, easier for me to not scream for “death with dignity” because I don’t have access to much of what is needed to live with dignity.
In that regard, am currently making the effort to stop judging, labeling, and comparing my situation and stuff to anything or anyone else.
It’s very challenging, especially since my online community also includes people who are out and about in the world without having a care about what they eat, what they wear, what they use to wash themselves and their clothes with, what their friends use, where they live, etc.
Most of the time, seeing them brings me great joy, but there are times I just cannot relate, their experiences are so different from my reality and it can seem so improbable that I’ll ever experience things like that again, and so now, and again, I look for little blessings wherever they may be.
I know there’s a ton of advice, writing, and whatnot on gratitude out there, and some of it’s very good. I am not writing an inspiring how-to-do-gratitude post, or a you-should-do-gratidude post. I am just writing what I have been doing, kind of in response to something someone shared somewhere else, someone who is also hanging on by bare threads, and living in some very similar circumstances as I did at the cabin, and in some ways still am now.
My gratitude work is a work in progress, and an example of a different reality.
MCS/ES, welcome to a reality you never dreamed of!
Remember that it takes monumental amounts of effort and energy for me to do even simple things, and that some part of my body or another is usually in pain or not functioning very well. And that there isn’t much else to my life than what I describe below. And that solving some of the lack of access issues would take a village.
Things I can be and am really grateful about now:
I have an indoor washroom here with a toilet seat that doesn’t freeze, and I don’t have to dig my way through snow to the outhouse like I did at the cabin during the winter of 2010-2011, when I could barely walk.
I have hot running, and filtered water here, right out of the taps.
I don’t have to drive 50 km twice a week and haul 5 gallon glass and plastic jugs of water.
I don’t have to boil water to wash dishes.
I don’t have to haul the dish water outside because the drain pipe under the cabin froze, the water magically disappears down the drain when I’m done with it.
I can wash my hands and have a shower whenever I want or need to, with warm or hot water!
I don’t have to wait a week to have a shower (a 25 km drive away, when a woman emptied her bathroom for me once a week, every week, so I could shower and hand wash the clothes I didn’t have to have on my back, the clothes I had to wear almost all at the same time to keep warm enough that winter).
I have heat here, and the place remains warm enough that I am not constantly shivering (except when it dips well below freezing outside for more than a few days, because, well, I still have clothing issues, related to laundry issues, but I really am grateful that I still have any clothes I can wear now, no matter what kind of shape they are in)
I have weekly organic food delivery so I can eat more than freshly grown sprouts when I need fresh food in the winter…(I am not going to think so much about what I can’t get, or can’t eat because I don’t have enough teeth left, and I WILL think more about what I can do with what I can get)
I have one molar to molar connection left in my mouth (where my last upper molar meets a lower molar) so I can still chew, at least until I am ready to have the now infected lower molar removed, or until it becomes painful enough to make me ready to have it removed (that would make it 8 or 9 teeth extracted at home this year), and I am SO grateful for my 35 year old blender that doesn’t fume me to death when I use it, that it still works to puree everything I eat. YAY! For that, I really am super, duper, grateful, because without it, I would starve!
I am so grateful for a few local people in the online Buy Nothing and Community Giving groups who have responded when I reached out and asked if anyone could pick something up for me when I’ve needed things from a local store. And I met a few other people when I offered up extra kefir grains when mine grew to more than I needed.
I am grateful for that tiny bit of contact with people from the “world out there”, when being confined to my home here for 99.999 % of the time since I arrived here 51 months ago means I’ve had no other way to go out and meet anyone from here.
And I am grateful for the squirrels… lots and lots of squirrels… (I am almost ready to say too many squirrels now, as some were being naughty today) and a chipmunk, or 3… All I have to do is go out with some sun seeds and peanuts (which are ordered and paid for over the phone and brought to me by community members), and I can be surrounded by little living beings who don’t poison me with toxic personal care or laundry products, who look up to me with such hope in their little eyes and hearts, excited to get something tasty to fill their little bellies with or hide away somewhere nearby.
Ok, I admit it, I may not be “Squirrel Girl”, a powerful mutant in the Marvel Universe, who defeated some of the most powerful villains, like Doctor Doombe… I may be more like the “feeding-lots-of-squirrels-lady” here, but in my circumstances, how else can I feel useful and needed in the “real” world (and not just the online world)?
What having a life only online (in the computer) sometimes feels like:
Yet, so far, there is no fix, the “real” world is still too toxic for me.
What would my life be without my online community? I can’t imagine. My online community members are lifesavers. I am so grateful to them, and to you!
I am also very grateful for this computer that I am using, that it is still chugging along, slower, and more fitfully than before, but it still allows me to order food and have all the other connections I have now.
I can honestly tell you that by focusing more on what I can find to be grateful about, and then letting it go of my labels, comparisons, and judgements about the things I have no control over, has seriously helped, despite the absurdity of my circumstances, and the cold, harsh, heartbreaking realities so many of my online friends with MCS/ES are forced to endure now, because practical, non-toxic solutions are not affordable for us.
I continue to hope, wish, and pray that soon enough people will understand that the things we people with MCS/ES have been complaining about for decades are actually things that are harming everyone, as so much scientific evidence now shows, and that the desire to have future generations survive, with reasonable good health, will convince people to choose non-toxic personal care, cleaning, and laundry products, and that we can create enough demand for laws and regulations to make all everyday products and materials non-toxic and harmful VOC free.
NOTE: Before anyone goes off telling anyone else to get positive and / or practice mindfulness, because obviously our attitudes need an adjustment, because we wouldn’t be complaining otherwise, here are a couple of things you could (please) read:
Barbara Erenright’s Bright-Sided: How Positive Thinking Is Undermining America
“May my suffering take the place of the suffering that would be otherwise experienced by other beings.”