It has been a three days since the cold front finally broke. When it did we got a couple inches of snow, not really all that much for around here. I expect a couple more snow storms before winter is done. This one only lasted a day this time which was very nice. Luckily behind the snow was a warm front and now it’s a balmy 50 degrees today, though it does come with the price of heavy rain showers. Such a huge change from our well below freezing temperatures less than a week ago, feels almost like spring! Here are a few pictures I took of the snow:
View from under our tarps.
Jeremy having to keep dry while getting hot canning jars for us to stay warm.
The beauty of the snow.
The rest of this is just a quick update to my previous blog articles.
For almost the entire month of November both Jeremy and I had a really difficult time around here. I wrote about the crash in “Tides of the Storm” and “Ex nihilo”. It was probably one of the hardest months we have had since moving into this tent and very possibly the hardest in the last 2.5 years. November ended with me having one of the worst flu bugs I can ever remember having and Jeremy having a tooth extracted that had been abscessing for the last several weeks at least. But with the first week of December we both started feeling slowly better and getting our feet back under us solidly. We decided that a rest was much needed and are taking a month off of all detox inducing supplements so our bodies can heal and be ready for the next round.
I have written a few times of the animals we have around here in “A More Simplistic Life” and “Squirrels!” We still see our little Winter Wren friend and he has become much braver in the last couple months. Just a week ago he was hopping around and looking for a tasty bug to eat when he got some crazy notion in his head that the pill Jeremy was handing me must have been for him. Right as I grasped the capsule I suddenly see this little form dart from the corner of the tent and do a quick swoop past my hand. As he went by I felt his little feet grab my finger nearest the capsule and quickly let go as his momentum carried him onwards. What he was thinking, we will never know but it did provide for a nice bit of comedy.
Our squirrel friends (or annoyances as was the case for several months) have been quieting down as the winter progresses. Surprisingly we saw one just behind the tents digging in the snow on Sunday, looking for some maple seeds. I wouldn’t have expected to see them out on the one day of snow, but can’t argue instinct with something who’s vary life depends on it. Luckily they have been much quieter in the mornings and so we get to finally sleep as our circadian rhythms need. I think this is certainly one of the big things that is helping us to recover from our crash in late October and all of November.
Also, an update on our progress after the big doctor visit we had early October and written about in “Back from the Wizard”. We have been taking our b12 shots every three days, using the hormones as prescribed, and taking all the additional vitamins suggested (vit D, more C, more Selenium, and more CoQ10). I have changed several of the brands we used for our vitamins. Where monetarily possible we are now on food based vitamins which feel a lot better to be taking. I wasn’t sure if there was a real difference between food based and something developed fully in a lab. However, when I had the nasty stomach flu a few weeks ago I quickly felt the difference between the two types as the fully lab manufactured ones were not even able to be tolerated by my stomach for five days, while the food based ones caused no stomach trouble.
That affected a lot of my decisions when it came time to buy our vitamins the following week and I think I have us on substantially better vitamins now because of it. I also was disturbed to find a possible source of mercury ingestion in our fish oil, apparently at some point it changed from “free of mercury” to “lower than industry allowable limits.” Ack!!! We now take krill oil and it is worth every extra penny to know it will not be adding to the abundance of mercury we must deal with.
In small ways we are seeing the benefits of these changes. It is very likely that the crash we just went through was brought about by some of the readjusting going on in our bodies to the new therapies. Certainly the vitamin b12 shots (administered at home) would be a huge catalyst for change even if nothing else was. I have noticed some good changes in Jeremy as his hormone levels are going back to normal and some positive things as mine do as well.
Within two days of our doctor trip we also stopped eating all soy products, though I did just find a couple supplements that had some soy still in them. These are now gone too. We have stopped being vegetarians, something which was hard from me as I had been one for 12.5 years, but can feel a lot of benefit happening from now eating animal sources for protein. I think this is also responsible for some of the good changes taking place in us. Currently we are working towards a large change in diet and are excited to see what might happen once we have fully made the change. We feel better in small ways every meal we eat differently now, I have high hopes for what may occur when all meals are changed.
As for our house… well nothing seems to have come of all my efforts to find help finishing it and described in “To dream of a Home” and “Fate’s Quirky Sense of Timing.” One woman at the NW EcoBuilding Guild did seem receptive to talking about my situation but after hearing how bad things are she completely disappeared. It is unfortunate she couldn’t at least have been kind enough to say she couldn’t help, but to act as though we do not exist anymore is pretty ridiculous.
I also spoke with the president of the guild who upon learning that we were not paying members she immediately became very aloof and wanted nothing to do with us either. I had tried to explain that being almost completely housebound, on a fixed income with high out of pocket medical costs, and scrimping every cent we could to finishing building our house that it just hadn’t made much sense to pay monthly membership dues for meetings we would never be able to attend.
But it did not matter at all. Unless we had been paying for services we were too disabled to use even once in the four years we have been trying to build, she wanted nothing to do with us. If it were me, I would have looked at an opportunity to get us as new members and make a statement that it is an organization not just about recycling building products but about the people who live in the world we are claiming to want to save. I have to wonder who they are trying to save the planet for if not for the people who are in their community.
There are a few other exciting bits of life that have been going on around here but I will save those for later as they develop more fully. I am starting to finally feel like there is some progress being made from all the hard work we have been putting into life for the last four months since starting the climb back up out of the hole this summer’s crash left us in.
Ok, maybe this wasn’t such a quick update after all. Surprising to see how much has been happening when most of the last few months I often felt as though very little was going on. Small things have a way of adding up over time to much bigger things.
For me, some days are good and robust, while other days are lack luster and wanting for more. Well, that isn’t entirely accurate. Lately it feels more like some weeks are this way. A CFS crash can come in a variety of flavors. Sometimes it is less energy, sometimes more pain, but always an exacerbation of symptoms I normally have.
Over the last couple months, it comes in the form of insecurity that then brings its friends, anxiety and sorrow. I have been struggling with this emergence of mine from a life lived in the peaceful shadows of my cave, into a new life filled with many new people who know me for who I am. A woman with CFS and MCS so debilitating that she has had little choice but to live in a tent and is finally speaking out about it.
It is very difficult at times to live this unconventionally. All our lives, our sense of rightness and belonging is developed by what we see around us. I don’t see many people living as I do which brings to this situation a feeling of freak show that can be hard to dismiss at times. Were I living in a country with a majority population who lived in huts or other more nomadic style dwellings, this would seem like more of a normal way of life. But in America, living in a tent year round regardless of snow, cold or other weather is anything but normal if you are not doing it as part of your job.
This is all compounded by the fact that while I chose to live this way in order to safeguard my health as much as possible, I do not consider that much of a choice. Ask a person if they would rather live in a tent for eight years or face the possibility of a health decline that may end in no life at all, the answer seems pretty obvious. Though at times, the alternative does hold a strong sway upon me.
The numerous trips to town in the last month for testing and to see the doctor have been taking a steadily increasing toll upon my mental fortitude against these feelings of insecurity, isolation, and loss. It is a form of culture shock at times, to be reminded of all the seemingly simple things in life that you lost years ago. While speaking to people it can be easy to forget these fragile nylon walls surrounding me and instead step for a moment into their world of warm, safe homes and work. But in the quiet moments that fill the gaps of a day, these walls take on a solidity that continues to defy my attempts to break free of their grasp.
I will not stop looking for safe ways to move indoors but the thundering sound of rain upon my tarps today is a constant reminder that Winter’s inexorable approach draws steadily closer. Hunting, searching, and never truly resting because my mind is like a caged beast that can not help but pace the confines of her cage while waiting for the day that will bring release and freedom.
Eight years ago today saw one of the worst days of my life. The last two months had become an ever increasing nightmare as life started to plunge into the icy depths of serious illness. With chronic fatigue making it increasingly difficult to work even part time and chemical sensitivities springing up like wild flowers in some twisted tormented garden, my world was definitely crashing down around my ears.
It all began from something in an apartment I rented. Whether it was from a toxic mold problem I had apparently brought with me from my last rental or from some other toxic chemical source inside the apartment, it hardly matters all these years later. But on this very day in 2001, it mattered greatly because whatever was causing my health to dramatically drop, it was now all too evident it had also soaked every single belonging I owned turning each beloved item into what was beginning to feel like a little bit of hell when around them.
The nature of this illness left others able to still use the things I owned, as I saw when a friend came with me to the storage locker I had rented in the hope of one day soon recovering and reclaiming all that was mine. It was during this trip that I came to a horrifying revelation. Although others had no trouble from being near any of the treasures I had gathered in my life, I had become so sensitive to each one’s remaining toxic soup that I could no longer be within even twenty feet of them. And so out of desperation, a plan was formed to cut my losses, which were daily growing larger, and try to restart from scratch. Hoping maybe my illness was being caused by the trappings of my former life that I had continued to hold on to and that once removed entirely, as one would do with a rapidly spreading cancer, my health would have a chance to recover.
Eight years ago today was a Saturday. It was the worst Saturday of my life and I hope it remains that way. With an inner strength I did not know I possessed, this day saw me holding a yard sale of my once normal life and everything that had ever been in it. Strangers pawed through my belongings while looking for fabulous deals that they could brag about to friends and family later. I had started the day with at most a hundred dollars to my name and so with a great weight in my heart I haggled each price higher, for I knew my only options for rebuilding would come from having the money to do so.
Eight years ago was my birthday, as it is again today. A birthday of great loss and sorrow, spent with vultures and hyenas feasting on the wreckage of my healthy life.
Today will be different. There is already more hope and happiness than I have had in years. Some early birthday wishes from friends I have only recently made is adding a sweet reminder that I am becoming human again. It seemed last night that even the woods around me sent out a shout of greeting just after midnight as animal after animal briefly called out into the dark night around me before quieting again as though nothing had occurred. That was one of the more odd things I think I have heard all these years in the forest. Deer, owl, coyotes and a raccoon all within mere moments of each other, outside and raising a ruckus each in their own turn, it was very odd indeed.
And in one of those rare moments when you see fate’s quirky sense of timing, yesterday saw what seems to be an almost unbelievable miracle. I received word that a letter I had sent to the NW EcoBuilding Guild was being taken seriously, that my request for help to finish my home and leave this tent had not fallen upon deaf ears. I do not know what will become of this; I only know they read my words and have passed them on to others to read as well. But the hope blazing in my chest is a vastly more wondrous feeling than the despair of so many years ago.
Today is indeed a very Happy Birthday for me filled with much anticipation and excitement for life and what the next year may bring.
I remember the very moment I first thought of building a house. It was spring in 2005. After spending the last two years in a constant battle with DSHS to retain our temporary state disability while applying for federal benefits, both Jeremy and I had just received notification our battle was won. We had both been approved for social security disability after appealing our case before a kind judge. We began looking forwards to three years worth of back payments and the ability to have a steady income once more.
More importantly, we began to dream.
Jeremy’s dad was agreeable to the idea of us using a small portion of his property to build a house on. At the time, the location was a cute little clearing near enough to the driveway to allow easy building. We spent hours out there each week, sitting and dreaming of the house we would soon be living in. Because in those days, everyone told us it would be an easy place to build, mere weeks to finish after all the permits were approved.
To build a house seems a daunting task, and indeed it should have seemed even more so due to how severely ill we both are. Nonetheless, I took up the project with great zeal and an incredible desire to finally have a real home.
As the weeks rolled by and became months, we had still made very little progress. Working on a shoestring budget as we were, we had tried to build very small and very much under budget. Conventional building materials were not an option as they are far too toxic for our bodies to handle now. This was how we came to build a load-bearing straw bale house, a hope for less toxicity. It is also the first one approved for building in our county. Given the nature of what we were trying to build, we had few options for contractors. Because of this we tried working with independent contractors and professionals who though unlicensed, showed a great willingness to make our dream of living in a safe house a reality.
Promises of meeting budgets and MCS needs filled the air, only to later be blown away on the breeze.
It is absolutely incredible the number of people willing to take advantage of a severely ill couple living in a tent. Astounding even. It eventually all came down to money. They wanted more than the agreed upon prices in the contracts to continue working and we refused to be strong armed into paying more. I do not understand people who think that way, and perhaps that is ultimately what led to our being deceived by them in the first place. Or perhaps they had originally meant to keep the promises they uttered, but after the initial shock of finding two people homeless in the woods had faded, they began to think more of their pocketbooks than of being kind and gentle people.
Whatever the reasons, four and a half years later our house still sits without us in it, lonely and waiting to be completed. The years have left us with little resources to finish building, no contractors whom we can trust, and a home no longer safe for us to be within twenty feet of it for longer than a few minutes. Out of options and out of resources, I don’t know how we will ever get this done. But what I do know is that every day sees me out there looking at my unfinished and toxic house and trying to will it from the very depths of my being to become the finished, toxic free house that I have always dreamed it could be.
Home is a tent right now. A medium sized tent, sitting in a patch of woods in the Pacific Northwest. Alders, maples, cedars, and other various trees shelter us from the world outside. A world that has now become too toxic for us to live directly in any longer.
Growing up I had seen my mom diagnosed with Multiple Chemical Sensitivities (MCS). I had seen that it meant she could not be around perfume, fresh paint, or insecticides – but almost everything else was still fine. This is what MCS meant to me, a mostly normal existence with something akin to allergies to a few really stinky things.
By some twist of fate, I now understand that for some of us with this condition its meaning becomes dramatically different. The word ‘sensitivity’ doesn’t even come close to describing the reaction my body can undergo when exposed to various chemicals that are commonplace throughout our modern society. The normal pathways the body uses to remove the chemicals we are assaulted with on a daily basis, these are clogged and sluggish for me resulting in an overload of things even in the tiniest amount.
I have no idea how many of us with extreme levels of illness from chemicals are out there. Most of us tend to stay at home in environments specially tailored to ease as many symptoms as possible. We rarely go shopping and usually only a few stores are tolerable to be in for any length of time. You won’t see us at the movies, bookstores, or any event that has a gathering of people. Were you to see us, other than a few odd things easily dismissed, you wouldn’t know how ill we were at that very moment because most of us have learned how to play the role of ‘normal’ very well.
If you saw me at your local co-op, you would see a woman in sun faded clothing, who has a bit of a lost and tired expression on her face, heavily flushed cheeks, and glassy eyes. That is it. That is all that would stand me out from anyone else at the store, and all but the intensely flushed cheeks and facial expression would be semi-normal for this alternative minded town.
Meanwhile inside me is a different story. My head is in a thick fog, hence the lost expression while wandering the aisles. The flushed cheeks are intensely hot, even painful, and seem to be tied to my body trying to induce a fever to burn off the invading toxins, as it would do with a virus. It is likely I have a headache, am dizzy and would have a hard time standing in one spot long which also leads to more wandering around the store. The entirety of my body becomes numb to normal sensations. Not numb like a limb that has ‘fallen asleep’ but numb as though so over stimulated it simply stops processing new data. I have often been amazed at the miracle that my feet keep walking, that I can actually speak, hold objects, or even remain upright because none of that seems possible when you can no longer clearly feel your body. Other various symptoms will occur as well, but are not as consistent as these.
This will all continue for several hours after I have returned to my safe environment away from further influence of civilization. The following days will see me with all of these symptoms to lessening degrees and a great deal of pain along every nerve in my body, but a completely new symptom also becomes fairly dominant. It is from the CFS and called post exertional malaise (PEM). My muscles are beyond fatigued from the simple act of briefly shopping for vegetables the day before. Weak as a kitten, ridiculously easy to become tired from even sitting up for more than a few minutes, it lasts from a day to several weeks depending on many factors – most of which are beyond my control.
Every trip out negatively impacts my life for days or even weeks, therefore I go out into the world only on very rare occasions, and typically only for medical reasons. I am not alone in this, it is a condition surprisingly many of us share to varying degrees. Yet rarely would you ever know the person standing next to you, swaying a little on their feet, might be having strong reactions to the very same air you are breathing safely.
Since moving to a tent in January 2002, I have visited two people’s homes that did not leave me feeling the way I have described here – all other homes have caused similar or even much more severe reactions. It is for this reason we decided to try and build a home safe from common building materials which are mind numbingly toxic. It is this type of home we dream of living in one day. A home where we can feel safe, warm, and most importantly – a home that does not make us continually ill on a daily basis.
Overlooking the house I am building is a rock. A big chuck of granite unearthed from the very place my house now stands.
In the afternoon after the sun has warmed the surface with its loving rays, this stone feels like home, warm and inviting. It doesn’t matter if I sit on it with feet dangling in the grasses below, legs tucked under me, or even just needing a good sprawl – this rock fits all sitting needs. But best of all, I am just the right size to turn my rock into a wonderful place to take an afternoon snooze.
A breeze blows gently to cool my sun warmed skin. Little animals will go about their business of harvesting for winter around me, never noticing the sleeping giant amongst them. And the glorious rays of summer’s passing warmth radiate downward from a sky so blue it makes one want to weep at the beauty.
On days when life is moving too quickly, winter approaching faster than I can tolerate, the stone offers a very grounding presence. It is solid and to my life span, eternal.
I have lain dormant in a shadowy cave for many years. On this rock, overlooking my future gardens and home, I begin to feel the warmth of life breathing into my soul again.