Feet in waters deep,
here fleeting rest above ground,
plotting the next race.
Feet in waters deep,
Feet in waters deep,
here fleeting rest above ground,
plotting the next race.
(not that I respect the FDA but in spite of their own findings, this poison is still being promoted by doctors) …
I’ve not considered myself a patriot or a nationalist in the traditional sense for a long time. My citizenship is of the earth, the whole beautiful wild planet. This information makes me even less of a patriot. But my faith in those who stand up to corruption has grown hugely. If you’ve been affected by cancer, this is worth every minute. I would hope no one who cares would miss seeing this. It’s a limited viewing from 6/11 to 6/13 after which time it can be purchased for $13.99. It’s going into my collection ‘though I viewed it free of charge initially. An amazing, amazing chronicle of tenacity in the face of horrific opposition and criminal sabotage.
QUICK GLANCE: This is the story of a doctor who has been working with the worst forms of cancer since the 70s with a success rate far beyond the accepted “success” experienced thus far in traditional, devastating treatment practices. For that fact, he has been attacked; failing that, the US govt sought to steal his patents; failing that… he’s still curing some impossible cancers in spite of a long tedious history of shameful hounding by the FDA and National Cancer Institute. This IS where my faith in the legal system here is somewhat bolstered ‘though I’m appalled he was harrassed for so long.
The relentlessness of synchronicity, of the recurring pursuit of soul for deeper meaning and expression struck me this morning as I, once again, “accidentally” opened a book that seemed to be picking up on a conversation I’d left off only just moments before and days before and. The ongoing conversation of my soul and mind, inspecting the state of my health, asking why. Thomas Moore’s articulation in Dark Nights of the Soul chimed in:
“The religion scholar Mircea Eliade explores in his journals what he calls “the spiritual, ‘religious,’ functions of illness.” “Illness,” he writes, “is the point of departure for the process of personality integration and for a radical spiritual transformation.”
“Illness is also a kind of poetry. It expresses the course of life, but it doesn’t explain it. It invites you to reflect on your way of life, spotting the gaps where your soul is negected and complaining. You can think about where the disease came from and how it reflects the way you live or the ways of your society. Eventually, your sickness may cure you of your misconceptions, as it speaks its poetry on behalf of nature, guiding you deeper into union with the source of your own life. The more you are emptied of your physical abilities, the more you are filled with the strength of soul.”
Over a year ago I began to acknowledge the slam of chronic illness, the recurring fever and its effects, coming seemingly out of nowhere but not a stranger to my world. I couldn’t sustain that acknowledgement because, for one, I didn’t want it to dominate my expression or my perspective. How quickly does “disability” become identity? For fear of that very possibility, I retreated. But my body continued to struggle. I would shove, push, scramble into days that most folks can do without too much reprisal. The benefit of 50/50 parenting delayed my final crash, getting me through my last semester as I spent any “spare” time in stillness, lying around, trying not to feel guilty. But the summer and heat, lawn and life depleted me fully.
I found Dr. Myhill’s illuminating insights. This failure of the mitochondria is inherited from the maternal side, she says. Cracks me up in light of recurring divination screaming…”then one receives great blessing from the ancestress.” Such a tangle of potential meaning. Dr. Myhill? My grandmother, Sugar, gifting me with this curse? She’s the one who suffered and whose heart literally exploded. I was born with my heart murmuring. Truly, literally a heart murmur. Can we say I was born with my soul already needing healing? And my body therefore spoke or murmured? We can say and see anything, really. But I agree with Moore. I agree with the opportunity here.
My own struggles have legitimized my grandmother’s story. She was not taken seriously, had many tests for her health and when you read Myhill’s description of the total body shutdown caused by this failure in energy production on a molecular level you read her story, my grandmother’s. She was not believed. She was looked on with some contempt and seen as “weak.” I see a bit of redemption in this. Her spirit can rest with more ease. Who she was as a person, the perception of her soul, of her essence can be rid of that lack of credibility. She was, in fact, stronger than anyone knew, working to stay active in life while her respiratory system failed her, while her thyroid roiled and her heart – though tested without revealing it – worked with very little fuel.
What is the soul’s work in this chronic illness? What is the pattern? Activity and reprisal for such activity, rest required, punitive pause. Then rev up the engine a bit, ragged but rolling and out the door again. Second-guessing the fatigue every step of the way. Is it that I don’t believe I’m allowed to live without punishment? Is this the first time I’ve faced this possible cause? No. God, no. I’ve covered many a layer, incorporating new vision, new thinking, acceptance of myself on deeper and deeper levels and actions, life changes reflecting the inner work. And yet. My body continues to express itself through limitation. It’s possible I chose this for a specific learning process just as my soul entered this body. But I can never know with a certainty, can I?
What does this illness give me? It requires I rest in feltness supreme on levels deeper and steeper still. It requires I treasure my energy and use it more strategically and conduct my life in even more mindful ways, visionary energy becoming vision more cherishing of life itself. Life. Life beyond “productivity.” Life beyond “legitimacy” earned in our culture’s definition of “living.” Life beyond approval.
People seem to generally be more comfortable either giving extreme medical advice or assuming the illness is caused by a lack of effort to bring the life into fitness on every level. Why is that? Is it that humanity has yet to figure out how to just be with? Be with. Other. Self. Now. Here, let me tell you how I know you’re mismanaging your world ‘though I don’t know you well enough to begin to do so! This, this is what happens most often. Why? No matter…
“Hi. Yes. I have this chronic illness. And I’ve done more homework on my soul than most and I’ve altered my whole world in order to create an environment that honors my requirements. I’m still ill. Deal with it. There’s no one easy answer. And. This. Is. Life.”
When the proof of your “advancement” cannot be revealed in products, the soul brews a most potent stew of creative jive and appreciation for every slice of life. You are more present than ever. Especially when you quit condeming yourself for not appearing to be diligent, active, resilient.
What is this illness giving me? Because of the intense rest and supplement flood, my eyesight is improved, fever reduced. My heart rhythm is more steady, the pause, shudder, spasm, slam, almost-pass-out moments are practically non-existent. My energy is more potently available. My respiratory system is saying “thank you!” My stamina is not yet returned fully but I’m getting there. My respect for my body has increased even more. I’ve learned not to pretend this isn’t a real, valid issue needing measured regard and careful planning. I’ve promised myself that it will become a layer of my daily living I integrate without crashing again. And it will be so effectively managed there won’t be much use for the tag “chronic illness.” It’s going to be about even deeper even more unique perpetual regard in love, tailor-made for honoring my individuality as well as my clan-self. Hey, and one day, I’ll sprint again.
Months ago, in the summer sun, my heart raw, my mind shell-shocked, my energy barely humming, the sight of shocking monarch glory on the ground stopped me short. Lying on the ground, clearly dead. I stooped down, was she playing dead? They do that. But no. I picked it up. It troubled my heart deeply. I couldn’t let anyone step on her. I might break the wings accidentally. But I knew it would not be an indifferent heart or unseeing eyes scrambling past and crushing something precious. I knew if I let my car moves do their dance, the wings would probably chip. I’d take her home, bury her. But she wouldn’t be trampled unseen. So, I put her in my car and drove away. She stayed there a while. Her colors singing anything but death. I couldn’t bury her yet. (Call the psych experts, she’s begging for a disorder label!! tag her! pin her! mount her on the wall!!! see?! i told you she’s a monarch! and she thought she could fly!)
Things break. People go down and stay down for a long time. Me included. I can’t say how many times I’ve muttered to the sky lately: “you sure you’re not just a mo fo?” Well, really, I say that expletive fully. No shortened clever bit. Just all of it, daring the once-existing patriarchal saturnical snarl. I never do get a response. Invariably something really kind happens and I shrug, realizing I’m suppose to grin and gasp with grateful glee. It’s just not in me. Not lately. I do feel appreciative, joyful moments fleeting. But that long sustained sense of strength, of flight plans sure and true…long, long overdue. It will return…? Must it? I would like even just a bit but mostly I’m just glad to put one foot and then the other.
Life is conspring to bless me, some say. I say life is conspiring to challenge my faith in love, in faith itself, and in life itself while also conspiring to affirm those very things. It’s a sometimes sick twist of contradictions I’d rather not have to contend with. But isn’t that the human story? Ah. It is. (could we catch a bit of a break? please?)
I can’t sleep tonight. When you’re forced to rest often, the days and nights can blur together into a long stretch of a body sighing, trying and then murmuring about football tossing with a son, fun exercise too soon but without regret. Or the lack of nap intended so that the final descent into sleep isn’t 3am, that same lack creating this afternoon zombie state and moments of complete despair. Why did I run a fever today? A bit high again. (Don’t ask me about doctors, ok? I’m not stupid. I promise. This has been with me off and on for over 20 years. No, I don’t want attention. It’s just my story and I’m not trying to hide the fact that, at this point, it shapes my world in blurring lines of fatigue. I won’t pretend to worry that you’re going to know my less “positive” self.)
This is minor. So many tough stories living out their songs of effort and hope and despair all day, every day and nothing like my own managable reality. But there are days I feel like I got put in a car and my wings are chipped and I just need the earth and cool quiet quit and all the time in the world before I crumble all the way, return as tree or weed or something perkier than my current state. (No. Not a death wish. Just a sense of a dying away from a former state of living my life and morphing into something different. And not the first time and wow. Why must it be so intensely unique every time?)
Where does a blog post like this go? It just stops like that butterfly at my feet. It says g’nite and. I hear the best things take a bit of time. And some say that maybe God’s not a mo fo and has even the slightest humor divine. But today, I don’t know. And I don’t much care what people say of this joke divine. I just know I want to float again and sing songs.
But first, the rest.
…is not the typical title on this blog but it’s a glimpse of my world with supplements flooding my system hourly. I’ve been forced to regroup and re-prioritize my vision of “progress” lately. Once a full-blown relapse has occurred, Chronic Fatigue Syndrome becomes this horrifically stubborn monstrosity requiring gargantuan gaps of rest and only mild “exertion” the likes of which rev up my frustration levels into overload. Managing the fallout from that alone is a task no supplement provides. Ok. Maybe Niacin in mega doses (some refer to this vita b-wonder as nature’s valium) and a bit of l-tryptophan and valerian root but I’d rather find an outlet for the frustration that won’t sabotage progress or make me pass out (unless it’s bedtime!).
I discovered olive leaf extract accidentally in my quest to wipe out what had become a regular occurrence for me: daily fever, spiking sometimes up to 100 for months now. No identifiable infection. Exhausting. Olive leaf extract saves the day here. My highest temp for the past two weeks has been 99.2 and while I can feel it, it’s nothing compared to 100. I’ll take every tenth of a degree I can get. And that’s what this illness asks. It asks for appreciation for the finer points of improvement and patience for the long haul. Much to my disappointment, two weeks of supplements is not going to put me in the exceptional zone of early recovery. Experts’ general advice is 3 to 4 months of rest, pacing activity (this means if I go to the grocery store tomorrow, then I don’t sit at the computer and research for 2 hours as well or stand and do a pile of dishes in addition to and well, you get it…?) and heavy supplementation. I thought I could be the curve buster but I only managed to bust my stubborn idea in the fallout of a pig pickin’ tradition. Two days bedrest to recover from a family reunion might not be unusual for some but my whole body hurt all evening and I couldn’t sit up without pain the next day. All I did was walk a bit, stand around and eat, sip a glass of wine and laugh alot. But I did it for hours (including a hammock stint of glorious restful proportions).
But I’m improving hugely and falling into a renewed cycle of researching holistic healing practices, dusting off my herbal remedy books and reacquainting myself with the wonder of nature’s wise provisions. For one – Olive. Leaf. Extract. Supreme. In looking for a remedy for fever, I also found it to be an arrhythmia calming agent. And much else.
It’s a stark shift for me, this heavy focus on my health. I walked up steep steps to my room this morning and realized how different it all feels. I’m not kicking my butt for noticing my fatigue or for dragging. The spiritual tyranny of pride has fallen away and a sense of the influence of society’s ideas of productivity, stamina and endurance is breath-taking. I’m learning that pride ran me ragged and has now landed me flat on my back with new information to validate the highly relevant physical component/cause of this illness. As much as I hated the attitude others had about this particular illness, I embodied it against myself, scorning the downtimes and nagging at myself for not having what I didn’t have: energy or stamina. And my energy recovery process is not functioning properly on the most basic of cellular levels. No amount of boot-strap tough broad bull can change that. Knowing that has made a huge difference.
The good years, when I look back on the long stretch of relative productivity with minor recovery time, came on the heels of episodes of forced rest either via pre-term labor or a measurable illness known and respected by the medical profession. And I’ll never forget the surge of energy won me in the aftermath of a magnesium flush. So many pieces to a puzzle and pride ( a reaction agasint unwarranted shame ) kept it fragmented, disjointed and indiscernible before now.
So, it’s all good right now in spite of the difficulty. Plans are revised. Divorce proceedings are progressing (no minor passage, eh?!), and school will begin again for me in the spring. The preciousness of the moment finds deeper meaning in these times and creativity thrives in spite of the forced stillness. That tension between acceptance and vision with passion and promise keeps me finely tuned in a dance of healing. A strengthening appreciation for the immeasurable value of intuitive living is bolstering the foundation here, filling up the gaps shame created in ignorance made by refusal to trust my sense of things beyond the criticism. I knew. All this time. I knew there was more to this illness than had yet been revealed but I went with the most critical voice, internalizing it and alternately arguing with it for two decades. No more. That alone will free up some energy, eh? Praise God and pass the olive leaf extract! It’s time for my nap.
“Picture can defend us against image, emotion against feeling, intellect against insight, a dark way of life or personality against soul’s unmanipulable shadow, and, of course, psychology against psyche.” Thomas Moore (Dark Eros)
Once again, and on deeper levels, I’m finding that the life lived in reaction against others’ judgments is a life defending against being alive, being raw, being flawed, being … ultimately? whole.
So. No. More. Open. Every. Door. And. Let. It. In.
And I’m finding forgiveness as magnesium at maximum dosage opens the door for the right nourishment to reach my literal heart muscle. And this discovery came right when I was starting to open my heart up in ways long lost since childhood. I don’t believe it is, any of it, an accident.
Mito moments…when your body aches and fever continues relentless, throat sore, brain fog, demands drowning and you think maybe, in that moment, maybe if you just try a few leg lifts and. Maybe if you do just 5 minutes a day of very minor exercises, you’ll get better…? You cringe remembering having asked your son 3 times in a row the very same thing. You cringe remembering aching with longing when you watched the scene where the woman put on the sticker that read: “I’m In Silence” as you watched Eat, Pray, Love. I don’t want to respond to anyone. I can’t want it. My whole body is gone. Will exercise help?
Something in you snarls “go research.” And you go, promising yourself you’ll maybe exercise after you’ve researched.
Third person is the sign of the observer, the one really hoping to help conserve the energy, the one shielding from judgment. If I speak in third person, this won’t be what it is, maybe?
I’ve struggled off and on with CFS for over 20 years, enduring aplenty and grinning perpetually (except for those moments when no one is looking and I can show the walls my complete frustration). I had a moment, mito, where I thought I was the problem. Just this week. I’ve relapsed on levels worse than ever, my body deciding no more band-aid promises, no more bullying me out the door. Sometimes the body simply refuses. So, I sat in the computer chair and researched CFS yet again, thinking my intuitive urge stupidly hopeful. I know the ins and outs of this monster, know the critical “assessments” and the assumptions: “Oh, isn’t that a depression?” Sure, yeah. It’s the whole body depressed and the mind happens to cave in occasionally. Yup. That’s IT. Oh, that’s not what you meant, is it? Hisss…
I was about to give up when I found something about the mitochondria. Ah. ha. ha. A doctor in the UK has published her study on the effects of d-ribose and other wonderful supplements on CFS patients. Her conclusion?
“The central problem of chronic fatigue syndrome is mitochondrial failure resulting in poor production of ATP. ATP is the currency of energy in the body and if the production of this is impaired then all cellular processes will go slow. It is not good enough to measure absolute levels of ATP in cells since this will simply reflect how well rested the sufferer is. The perfect test is to measure the rate at which ATP is recycled in cells and this test has now been developed by John McLaren Howard. He calls it “ATP profiles”. It is a test of mitochondrial function.
Not only does this test measure the rate at which ATP is made, it also looks at where the problem lies. Production of ATP is highly dependent on magnesium status and the first part of the test studies this aspect.
The second aspect of the test measures the efficiency with which ATP is made from ADP. If this is abnormal then this could be as a result of magnesium deficiency, of low levels of Co-enzyme Q10, low levels of vitamin B3 (NAD) or of acetyl L-carnitine.
The third possibility is that the protein which transports ATP and ADP across mitochondrial membrane is impaired and this is also measured.
The joy of the ATP profiles test is that we now have an objective test of chronic fatigue syndrome which clearly shows this illness has a physical basis. This test clearly shows that cognitive behaviour therapy, graded exercise and anti-depressants are irrelevant in addressing the root cause of this illness.” [Emphasis mine.] Link here: http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure
The UK, of course. Where some of the more epic influences of my life have originated. And absconded to, apparently. I sat there reading this information, poring over it and have to admit I both laughed and cried. It described me more thoroughly than I’d found thus far. And. There. Is. A. Test. WOW.
Let me back up and say that as much as a CFS sufferer remembers the fact that depression didn’t begin this malaise, as much as the CFS sufferer knows of others with equally daunting or worse histories to heal who never feel a second of chronic pain and have never gotten in touch with the inner demons, as much as the CFS sufferer knows the sneering doctors were ignorant and lazy, as much as the CFS sufferer remembers loving life and activity, that same soul feels guilty. I shoulda done figured this thang out. I should have more energy. I’m lazy. I just don’t….
I ended 2 semesters after 23 years of no formal schooling with a 3.8 gpa. I now have 2 years under my belt. And 3 happy kids and blog posts and a relatively neat(ish) house in disrepair and a load of ideas taking shape and personal growth so rapid and profound as to render me a bit shocked. But my body, including cognitive function, began to unravel in July. And now? Nothing left to unravel, apparently. Lazy?
The protocol for ranking CFS fatigue and debilitation reveals how all my pushing has landed me right here, right now in my occasionally-occurring 3 hours of relatively cognizant capability:
“2. Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30–50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour per day.
3. Moderate to severe symptoms at rest. Severe symptoms with any exercise; overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform desk work 2–3 hours per day, but requires rest periods.”
I’m at 3 today. Often I’m at level 2. Mitochondrial failure. The layers of total system shutdown involved in this dilemma is illuminating, shedding light on why every test on my heart has revealed nothing, why I’ve been, not irritated, but alarmed at the diminished cognitive function, the dyslexia, the clumsiness, the…well, it’s endless. And information reveals that the genetic link for mitochondrial failure is through the mother. My mind reaches back to a redhead named Sugar. My mom’s mom. She had these same ailments. Never found a solution, put up with the same scorn. Died suddenly and unexpectedly when her heart failed.
This in particular blew me away: “In CFS the heart failure is caused by poor muscle function and therefore strictly speaking is a cardiomyopathy. This means the function of the heart will be very abnormal, but traditional tests of heart failure, such as ECG, ECHOs, angiograms etc, will be normal.”
More research revealed a test for free-radicals in the bloodstream of CFS sufferers finds amounts equivalent to those in the bloodstream of people undergoing chemotherapy. Gee, why am I useless right now?!
So. Well. And. The next 8 weeks will be spent focusing heavily on therapeutic, intense healing practices. I’ll haunt my blog friends and comment when some of the fog clears. Posting may happen sporadically. Or not at all during this time. Maybe I’ll post about this particular journey. (Decision-making almost impossible lately!) In the meantime, I sorely miss the energy and enthusiasm.
Here’s to healing and hope…
My mom, who is 71, had a stroke while we were camping in the N. Ga. mountains. My time here at their home has suddenly extended itself. But she’s walking, talking and functioning fine enough. A slight wobble in her gait. We’re waiting for doctors to rule out any further risk beyond the typical post-stroke risk. It started as a disturbance in her vision much like a pre-migraine. I know it well myself. But this got worse and stayed. And this was apparently when the stroke occurred. In the visual cortex. Her vision is all fragmented and flashing neon brightness. It exhausts her. Her question: Is this permanent? Doc’s response: The brain has an amazing capacity to heal itself. She and all of us here are in shock. This is a go-getter woman. Tough. Takes good care of herself. Both her parents died suddenly and horribly of heart disease undetected. She’s made sure not to let that happen, surpassing their longevity by many years already.
This has been, in spite of it all, a healing time for us. When you run out of the hills of Georgia and fast to the seemingly greener hillsides of North Carolina, you leave a bit of a track, a wake. That’s especially true for me since I left in total frustration with life and with my history. I was none too sure of my religion or. Or. Looking at old photos last night it struck me, once again, how much has changed. I was a shadow of who I am now when I left here. My mom has only recently begun to recover from the whiplash of such a stark change. How does she talk to me about Jesus anymore when she knows I’m just not there now? It’s not easy but she respects where I am, grieves it some. And she was never the type of person I could hide such changes from, ever. We’ve hobbled along, testing and re-testing our relationship these past 5 years especially. It’s been a study in courage for both of us.
So, holding hands, providing Reiki, laughing, filling out her forms for her…as sorry as we all are that it has had to be like this, I know she felt the deeper healing as much as I did. We’ve spoken openly about the hurts between us, found peace together. You can’t ask for more than that. No, actually you can. You can ask for a couple more decades of restoring what can never be destroyed. That’s all I ask.
On with it…