I love the wind. The wind is power. The wind is a vital energy force that moves through the body when it gusts against you. I have stood upon bluffs where the wind is whipped into a frenzy, so strong that one can briefly lean into it without fear of falling.
Now my experiences with the wind are limited to the forests surrounding me yet I am still awed by its primal power, the massive force that wages war upon the tree tops above.
As a gust blows through the woods you can hear its advance in a light breeze that sets the leaves to chiming as bells announcing the approaching wind. When the full force of the air sweeps through, the tree branches above sound as though they are locked in battle with each other; forever vying for space to sway against the mighty force threatening to topple them down.
The clacking sound of the tops bashing together can be very loud at times and spur a moment of fright as I brace for the impact of the defeated tree’s lost branches. Sometimes it is only a small twig which smacks with the sound of a larger impact upon my tarps. At other times you can hear a large crack followed by a thump in the woods nearby as a much bigger piece of wood has fallen from the sky.
Yesterday we had a small branch come ripping through our tarps after a large gust tore it from one of the alder trees standing watch over our camp.
In wind storms such as this, I am constantly reminded that even larger things have the possibility of also falling upon us, yet I can not move as there is no place better suited for our needs while living life from this tent.
Last winter, a large and outwardly healthy limb fell from a maple near our cook tarp. The branch is at least nine inches in diameter and broke in half upon the old chicken coop that sits nearby. I was outside and watched it fall, sure the coop would be the loser and crumple from the thirty foot long tree limb that was quickly descending towards it.
Both Jeremy and I stood in awe to the fortitude of that old coop, before turning and looking at our plastic tarps which cover a fragile tent. We couldn’t help but picture what would have been if the branch had grown out of the tree in a slightly different direction.
It is this maple limb which has haunted me in every wind storm since. I can easily look out the door of my tent as I write this and see the branch where it still sits resting against the roof of the chicken coop. A reminder that there are forces much greater than me at work in these woods.
I fear someday that I may be the unknowing contestant in a mighty duel with an even mightier tree. And I know that my frail body is no match for the strength and weight of the wooden sword that will come down upon me.
Hey Everyone! I really liked how this was written by Jody as it helps bring to light some of the invisibility many of us with CFS or severe MCS have faced. As our lives spin crazily out of control, more often than not those we know will turn away from us, societies support systems for life tragedies refuse to help, and we are left with nothing but ourselves.
If you have a fire and lose everything you own, there is help to find you housing and even refurnish your life. Should you be caught in a natural disaster, there will be some form of help even if it is inadequate – at least someone sees your plight and acknowledges its validity. One day a blood test shows you have some well funded and researched disease, you would be allowed the right to be ill.
But as I have seen far too much since becoming ill, if you lose everything you have to some strange illness there is nobody there to help you rebuild. Even the agencies designed to provide some temporary medical or food aid will often question your integrity and seek to further destroy your life with a vehemence that is mind-bogglingly unfathomable in its desire to rip your being to shreds.
Please read Jody’s eloquent words that describe the shadows many of us become.
The Incredible Power of Ignore
by Jody Smith
I think most people have had times in their lives when they have felt just the teensiest bit invisible. The shy kid in the schoolyard. The geek in highschool. It is a universal experience. Most of us eventually get over it. Then there are those with the misfortune of becoming chronically ill.
This invisibility will ratchet up to the extreme for people with a chronic illness. Especially if they have what is termed a chronic “invisible” illness. The kind the onlooker can’t see. The kind that causes other people to speculate that maybe there isn’t really anything wrong with the individual in question.
And they become an individual in question. Perhaps they aren’t really sick. Perhaps they’re looking for attention. Perhaps they are lazy and trying to avoid responsibility. Or perhaps they are just weak and can’t cut it in the workaday world with everyone else.
Sometimes this can lead to unsettling situations where the chronically ill are accused of malingering, of pretending, of lying about a nonexistent condition. They may be told by people who don’t know any better that they need psychological help. That they need to shape up and fly right. If they’d get up and get moving they’d be fine.
This can be pretty hard to take for someone who is ill and fragile to start with. But at least it is out in the open.
What can be harder to take long-term (and a chronic illness is long-term) is having their plight ignored. This is a far more common situation than you might suppose. And it drains a little more life and integrity out of the chronic one every time they run into this brick wall. Or perhaps more accurately, this glass wall.
Because the casual observer can’t see any problem. But the chronic is all too aware that something insidious is very definitely going on. They are being negated. Their desperate state is being ignored. When this happens everywhere the chronic looks, the effects are devastating.
Ever notice that the term “invalid” is the opposite of “valid”?
Imagine yourself for a moment in the shoes of the person who has become ill and whose life has been radically changed. You no longer are able to live the life you once knew. You may be unable to work. Unable to go out and socialize. Unable to pursue the hobbies and interests you love. And to top all of this off, the people around you act as if nothing has happened to you.
Imagine your house is on fire. You run to this one and that one yelling for help, and instead of offering the normal response of concern and assistance, people … turn away. Turn their backs and walk away. Your loss is of no consequence. You have lost currency with the outside world.
Or imagine that you are drowning. Sputtering and thrashing desperately in the water, trying to call for help, trying in vain to get the attention of the people at the water’s edge. And they … continue to talk about the ball game. Continue to discuss their vacation plans. While you go under …
The incredible power of Ignore in action. Or, inaction.
This is all too often the experience of the chronically ill.
This was originally posted on Ncubator.
Two years ago, a little Winter Wren started frequenting our camp. We often see them in the bushes in the woods, flitting from one spot to the next without ever a having a care for the giant who stands watching them. They are so small, other than hummingbirds they are one of the smallest birds we have locally. Yet they are also the bravest. As though they trust themselves and their own abilities to escape danger much more than the larger, often times more clumsy, sparrows and juncos.
The wee one who became our regular visitor during winter a couple years ago was a small bit of joy every day. It did not matter what we were doing, when he came around we would pause life for a moment while we watched his beauty.
He moved on during that next summer as bugs became more plentiful and easy to find. We briefly saw him again in the fall but then he disappeared one day. We would allow the spiders to make homes in the corners knowing the wren would find them a tasty snack. But eventually, we had to start clearing them out ourselves and accept that our friend was not coming back. This made us sad because of how easily it could mean he was no longer alive. Old age, a predator, starvation, or the elements could all have taken such a small being.
Now and then we would see a wren in camp and always wonder if he had found his way back to us, but when the little bird would only briefly stay and look in the obvious places for bugs, we knew it was just another traveler passing through. Time passed and we stopped looking.
A couple days ago another wren came through camp. It did not stay long before flying away. Then we saw it again later that same day. This was new; they don’t usually come back twice, not since our wee friend left. Then there were two of them at the same time, both looking for bugs and double checking where each had just been, that a morsel was not left behind.
You learn personalities of birds when near them enough. Based on this, I can say that the second one has not come back through having only found the remains of the first one’s feasts. But the first wee wren we saw that day has been back many times since.
He visits at least twice each day, hopping around and eying every surface under our tarp for prey. At times we are treated to some amazing acrobatics as he snatches a bite to eat. Jeremy’s monitor is beside an open window in our tent and our bird has found this to be a good resting spot for spying around inside. Never any fear from him, you can see this when he looks right at you from atop the monitor.
As with our first wren, this one also is learning all the spots bugs hide that the other, less curious wrens always miss. I love watching him hop around on the outside of the tent, his antics when he spots something but it turns out to be on the opposite side of some screening and out of his reach. Sometimes his little feet will make small scratching noises on the nylon walls as he scales the side seams of the tent. A quizzical look will appear on his face at times, as he peers around looking for his dinner. You can almost see his thoughts… “If I were a spider, where would I hide?”
I do not think this is the same Winter Wren we had two years ago, but I am very quickly finding myself growing fond of the newcomer to our home. I am looking forward to my wee friend’s visit today and the bit of peace he brings. That ability to take me out from my own world and step into his much more simplistic life for a few minutes.
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.
Living in the woods as we have been these last seven years sounds very daunting. Indeed, at times it makes me look back and wonder how we have managed to survive as well as we have. The first things that come to mind like this all involve winter and the times our usually mild climate here in the Pacific Northwest, isn’t so mild.
But even in the midst of all this, I still take time to pause for a moment and look around me. There is so much beauty to behold here. So very much that would never be seen were I not living this close to nature.
The chance sighting of a turkey hanging out in the bushes less than fifteen feet from our window is one of these occurrences. It was the rustling sound that drew my attention to it. A sound that would have been much fainter had I been behind the straw and glass walls of my house. There it was, just looking at me as I looked back. Both of us seemed to wonder what the other was doing here, because to each other we were equally out of place. Quietly he turned and continued on his way, in no hurry to where he was going but definitely having a destination in mind.
What a turkey was doing in our woods I’ll never know. It was a few weeks before one of the turkey holidays last fall, so we assumed that the he took his life into his own hands and decided not to be dinner for one of our neighbors. The calmness of that turkey is what stays with me more than anything. He was so very calm, as though knowing the direction fate had planned for him but with great dignity deciding to change that direction.
In the last several weeks, I have been feeling this change come about me and how I view the world around me. Oddly, though I still have no options as to how I will be living indoors by first snow this winter, I find myself becoming nostalgic about my years here as though I am already moving on.
Taking more opportunities to pause for a moment when I find myself outside and just breathe in the scent of pine and cedar. Stopping to listen to the wind whispering through the canopy above me or to watch the play of light on a falling leaf. The little rustles of small birds searching for a meal in the underbrush and the way they then dance on our tarp roof while taking a bath in some leftover rain water pooled there. And remembering that hush that falls over the woods when snow begins to fall, quietly blanketing everything into a new and pristine world.
I will miss being this close to nature when I am gone.
I have been taking a couple days to recuperate from the lengthy trip to see our doctor last Thursday. It was a very exciting day and also very exhausting because of all the excitement.
Timing in life really is very interesting to me. Here I am traveling most of Thursday, spending about an hour and a half at the doctor’s office and then traveling home. Meanwhile out in the world, a wildfire is spreading of information about a new connection between the retrovirus XMRV and CFS. It is all very interesting research on the retrovirus and wonderful that someone might have some answers for millions of us soon.
But closer to home, I have some answers of my own that I also received on Thursday. All those tests showed some important things for us. Once again, Jeremy and I had almost mirrored test results with only a one major difference and one minor difference. What is the most interesting to me is that for every test where we did have mirrored results, his were always a little worse than mine.
We both tested low for thyroid, Vitamin D, Selenium, and our respective hormones (progesterone/testosterone). These will all be supplemented; most we have already begun to work on as of today. Together we’ll be taking enzymes at main meals to help digest our food because our bodies are unable to produce enough enzymes on their own. We will also be giving each other vitamin b12 shots (hydroxocobalamin) a couple times a week here at home.
Where we differed majorly is he has a moderately severe Candida infection and will be on an antifungal for a few months, while I luckily do not have one. The minor difference was in each of us needing more of one type of antioxidant that the other was fine on.
While at the doctor’s office, we were shown how to do the b12 injections on each other – by the nurse giving us an injection right then and there.
I have to say that injection felt like a little bit of heaven once it started getting into me. About an hour after having it, soon enough that my butt still felt sore, suddenly I noticed that I felt good. Really good.
I felt better than I can remember having felt since this dark cloud of illness descended upon me eight years ago.
Jeremy also felt the same. We will be receiving our own supply of this miracle vitamin sometime next week. I know the wondrous sensation of health and wholeness I experienced the first time will likely not ever occur like that again, but it does give a tremendous amount of hope that this may be one of piece of the puzzle that has been missing for so very long.
With all the promise the trip to the doctor held, I can’t help but feel that promise was well met. To finally have solutions to some of the health issues plaguing us, it will be a very interesting next few months while each thing is slowly being righted after years of neglect and damage. Perhaps there will be XMRV answers and treatments by the time these current marvels of mine have run their course and I am in need of a new pair of ruby slippers to get me the rest of the way back home.
About a month ago, Jeremy and I had nearly a dozen vials of blood drawn in addition to some other testing. Today is the day we travel 5 hours roundtrip to find out the results of all those tests. I am both very excited and very nervous, but predominantly hopeful.
The doctor I will see is a CFS/MCS specialist here in Washington. Five years ago we began to see him when we needed answers that other doctors were unqualified to give. At the time, our meager monthly income was in jeopardy of disappearing any day and neither of our families were offering help with medical bills. It has left a talented physician with few options for our treatment. After we obtained a steady income, the building of our house was a continual drain on our no longer meager but instead limited income and continued to allow few healing options.
Over this last summer, we both suffered a large setback, otherwise known as a crash, in the recovery we had been experiencing over the last two years. We still had not committed fully to this doctor and his suggestions because often times they would have diverted money from house building to afford them. I highly suspect this to be some of the root cause for our crash this summer. The healing we had achieved on our own was very tenuous and the slightest push made it all crumble down to dust again.
Six weeks ago Jeremy and I made a decision to change the way our medical care has been. It is far too costly in terms of lost time, lost years of our lives, to keep trying to build ourselves back up to better health the way we had been previously. Today will be the result of that decision to start living again instead of remaining lost in a limbo of confusion.
I am excited by the new possibilities this day may bring and very hopeful something new will be found in all the testing to indicate ways we can build a more solid healing foundation. Meanwhile I am also very nervous that with an illness having few answers none will be found for us.
As I leave here today I could nearly take flight from all the butterflies in my stomach. But even stronger is the hope I feel for a better future beginning as of now and making me feel light as air. It will be a wonder if my feet actually touch the ground today.