"Always trust your cape..."

Back in the 1970s, Guy Clark used to play in my small NC-foothills hometown at a smalltown bar (then known as Fast Company) that featured live music on a small stage. My brother was known for belting out "Jumpin' Jack Flash" with his small hometown band from that stage. In front of the stage was a small dance floor; sometimes Brother and I would clear the floor with our dancing....

I was reminded of this song earlier this week when it played on my Pandora John Prine genre list. Hadn't heard it in at least a coupleish years; I'd forgotten about it. Now, I've probably listened to it at least 12 times. It's a good tune and words to have runnin' through my head.

Son visited me yesterday. First time I'd seen him since beginning/mid-April; he works in Alaska every spring and summer and got back to his home in SC last week. (Hubby saw Son in Alaska in August when Hubby visited Son up there.) It was good to see him. We talked and then sat around and listened to music. (And to me adding percussions with a coughing spell. It was productive. Ha.) I played "The Cape" for Son, and he really likes it. Hubby really likes it too...

Eight years old with a flour sack cape tied all around his neck

He climbed up on the garage, he's figurin what the heck

Screwed his courage up so tight, that the whole thing come unwound

He got a runnin start and bless his heart, he headed for the ground

Well he's one of those who knows that life is just a leap of faith

Spread your arms and hold your breath and always trust your cape

Now he's all grown up with a flour sack cape tied all around his dreams

And he's full of piss and vinegar, and he's bustin at the seams

So he licked his finger and checked the wind, its gonna be do or die

He wasnt scared of nothin, he was pretty sure he could fly

Well he's one of those who knows that life is just a leap of faith

Spread your arms and hold your breath and always trust your cape

Now he's old and gray with a flour sack cape tied all around his head

And he's still jumpin off the garage and will be 'til he's dead

All these years the people said, "He's actin like a kid"

He did not know he could not fly, so he did

Well he's one of those who knows that life is just a leap of faith

Spread your arms and hold your breath and always trust your cape

Yeah, he's one of those who knows that life is just a leap of faith

Spread your arms and hold your breath and always trust your cape

Spread your arms and hold your breath and always trust your cape

The Cape by Guy Clark

"Life is amazing, then it sucks, then it's amazin' again..."

Well, I've thought about putting together a blog piece about how my trek went. But I just don't have the energy to put anything of more than general substance. That being, I made it through. It was really hard and still is. Each day is a still a struggle, but I keep a song in my heart, or on the speakers to help tune in my heart. 

I first heard Michael Franti's song, Life is Amazing, a weekish ago. Been singing it ever since...

In Week 15, Day 2 of the trek, which was Tuesday, July 19th, I received my cervical spine trigger point injections. They helped take the edge off a bit and have helped my arms some, but I still have to be careful with my movements and wear wrist braces. And my legs are now having more of a struggle. But I keep moving. 

The trek through the beginning of Week 15 would have been much harder without the laser treatments. They did help; Hubby can also attest to that, along with my lighter body weight due to less inflammation. 

Insomnia added to my suffering. I think my guided meditations have helped tremendously with functioning despite the lack of sleep. I have been able to sleep the past week. Yet, I'm more tired. Maybe I'll sleep for a month. And wake up like a sleeping beauty. Haha. 

I've had to go a couple weeks without the lasers because my doctor is on vacation. My energy is low, low. I start back up with laser therapy again on Thursday, August 4th. I'll be interested to see if my energy picks up, if I'll get a pilot light spark. And how the insomnia somniaizes (made up word). 

I continue to work my 20-point plan, though I will revise it a bit to add leisure time, which has been sparse due to what I do each day. I will also be reducing the number of trips to Sparta for my laser treatments; I'll go twice one week and once the next week instead of two times every week. 

Two other things that have helped are the first two things I do after getting up in the mornings, besides peeing and applying topical oils for pain. (1) I invert on my inversion table for 3 to 5ish minutes and (2) I ride my bicycle, Olivia, on my indoor trainer for 15 to 25 minutes which is about 4 to 8 songs. The inversion table feels good. The cycling helps my nerves connect and start working, and it helps reduce the pain in my legs. 

~*~

Sad news. 

I'd taken about 6 weeks off from acupuncture while starting the low-level laser treatments and wanted to start back up with acupuncture to see what would happen. I texted my acupuncturist (A) on 6/21; texting is how I set my appointments with him. He was on vacation, so we made an appointment for July 2nd. But he didn't show at the appointment. I texted while waiting for him but didn't get a response, which is really odd. I thought maybe he got his dates mixed up, maybe he was still on vacay, maybe he was out of cell range. I decided to wait until after July 4th and contact him then. 

So, I texted on July 5th, but still didn't get a response. The morning of July 6th I called his cell and left a voicemail. That afternoon when I hadn't heard back, I called and left a message on his business voicemail. 

His wife, with whom he works at the clinic, called back and in her voicemail to me was very apologetic, and crying, and then she said, "(A) died last week." I was shocked to say the least. I called her back; she was on her way to New York with their 4-year-old son to see A's parents.  I shared with her something I had told (A) a few months back: that he was a true healer. Never once, in his presence, did I feel blamed for my illness. If we tried something and it didn't work, we'd try something else. 

I do not know yet how he died and may never. He had just turned 42 and as far as I know was in good health. He is deeply missed. I have shed tears multiple times. I first hired (A) in 2013. 

The day after learning of A's death, my wisdom tree fell in our backyard up near the edge of the woods. Ole Pine helped comfort and teach me through some of my darkest times and worst years of nerve damage. He appears to have fallen gracefully, and even after falling has provided sustenance and delight for the deer. As I've visited him and viewed him from the back porch (my therapy room), I'm not so sad as I am thankful that he lived as long as he did. Even now he has baby pinecones in his crown, along with an abundance of unripen muscadines. 

Deer feasting at Ole Pine

~*~

Well, this ended up longer than I thought I'd have energy for. I wonder when I come back to reread it, how many typos I'll need to correct. :D  

"Life is amazing, then it sucks, then it's amazin' again...."

Me & 2-week-old Trouble, RR Grade Rd, 7/23/22

Up and down

Prompt:  Up and down

~*~*~

6/28/22
Week 12, Day 2

How do I write what is happening?

Random bits of symptoms.

My brain scrambles.

Creativity hard to find. 

My body...

It's too exhausting to try to put into words.

Pain.

Weakness.

Lameness.

The conscious effort required for simple movements.

 

Such as folding the small, bendable, wired tab that seals the coffee bag.

I consciously have to slow down to perform that movement.

Else pain shoots through my right bicep causing my arm to go lame. 

Pressing the pump on the liquid soap dispenser?

Impossible.

Unless I move very, very slowly and deliberately, concentrating. 

The bicep muscle is used in the smallest of human movements.

My forearms...

Undulating waves of pressure.

The song "Under Pressure" by Queen comes to mind. 

My hands...

Slight ache and soreness.

Slight pins and needles.

Tender palms. 

But an observer can't see these sensations within me.

They can see my tremors and my slowness.

It takes a moment for the signal to get to my hands and fingers when grasping something small, like a receipt from a clerk. 

Every clerk who has serviced me the past 10 years has always been kind and patient. 

My legs...

I whisper or talk to my legs and hips and torso,

"Don't do the limp. Stop."

So, I stop.

I set my face and my posture.

And then I consciously walk through the house, without the limp. 

Hum-buzz in my lower legs.

Feeling that too often-feeling I've lived through the years...

That my shins will splinter.

But they never have; so, I ignore it.

Pain in my left hip and calf from my two falls last week.

Tenderness in the soles of my feet.

I told my self this morning, 

Week 12. Don't fight it. You can't fight it. 

Lean into it. Roll with it. 

Remember, discovery and curiosity. 

You have got to continue. 

I cannot fight my own body.

It would be easier, though that's not the right word, if my cognitive faculties could work better. 

Will it be enough...

Prompt: Not enough

~*~*~

Wednesday, 6/22/22, 8:35 PM

I'm in Week 11, Day 3. Tomorrow will be Day 4.

I continue to work my 20-point plan. 

The low-level laser light therapy is doing something. My thoracic pain which began in early 2020 is completely gone. My overall inflammation isn't as bad as usual, for Week 11. My brain fatigue isn't as bad as usual for Week 11. I'm weak and slow, which is normal. 

I've been able to stay at 6 milligrams prednisone, except for one day when I had to go up to 8 milligrams. I don't know how long I can continue at 6 milligrams, but I will stay at 6 as long as viable. That I've been able to stay at 6 since receiving my cervical spine trigger point injections on 5/24, is quite remarkable. Normally, in week 11, I'd be taking 15 to 17 milligrams and titrating down and then maybe up and down before my routine steroid lumbar epidural after the end of week 12. And even then, my symptoms would be ... really .... bad. 

The skeptic in me has a hard to time admitting that, Carol, it's the laser treatments. I'm also working the other 19 points in my plan. The big test is next week, the dreadful Week 12. 

I've been on prednisone daily since July 2011. I do my best to keep it below 7 milligrams per day, boosting up and titrating down between injections. But as time has rolled along, I've needed to boost more often between epidurals and injections.

I'd receive steroid lumbar epidurals every 12 weeks. At the 6-week mark I'd receive steroid cervical spine trigger point injections, nine of them, in a circle at the base of my neck. I started receiving epidurals in late December 2013 or early 2014. Cervical trigger point injections started shortly thereafter. 

For nine years my life has revolved around these repeated, 12-week, roller-coaster, divided-into-two-6-week, rides. Up and down, up and down. Symptoms from polyradiculitis going from severe to not-as-severe and then, with the steroid epidural in my lumbar, to functioning almost normally for a few weeks. At least that was the pattern for years. As time went along the injections didn't work as well. My last epidural was April 14, 2022. It was my 38th; there will be no 39th. 

Two good-sized blood clots, one in each lung, changed all that on April 28th, 2022. I now have to daily take a blood thinner drug and, even for me, the risk-to-benefit ratio of receiving an epidural while on blood thinners is too high. I can receive trigger point injections, but even those aren't working as well. The nine I received on 5/24, didn't work well at all.

The next week-and-a-half and beyond? I just don't know what is going to happen with my symptoms.

The laser treatments along with the other 19-points in my plan, will it be enough to sustain me so that I can somewhat function? 

My functional medicine doctor didn't start offering the low-level laser treatments until April 26. I landed in the hospital with deadly blood clots on April 28. I learned I could have no more epidurals on April 30th.

Two days a week, I drive a 3-to-4 hour round trip for my laser treatments. With driving, plus the appointment and pitstops, the whole trip takes around 6 (or more) hours. I usually go on Mondays and Thursday. I am scheduled through the end of August. 

I get my 15th treatment tomorrow on the Day 4 of Week 11. 

~*~*~

Saturday, 6/25/22

 About 1.5 hours after I wrote the above on Wednesday night, I fell.

It was a hard fall...in my home, in the dark, misjudging my place in the dark space. Fortunately, I broke no bones nor sprained anything. But nerve damage was exacerbated in both my arms and in my left hip and leg. The exacerbations have calmed some, and a small cut I sustained to my knee is healing well. Hubby had to drive me to my laser treatment the next day. 

I hadn't planned a fall into my trek through the Valley-ravine of Shadows. But I always carry a first aid kit. 

Today, 6/25/22, is Day 6 of Week 11. 

~*~

Added note about corticosteroids:

Corticosteroids (prednisone and its relatives) have lots of well-known side effects.  Such as...

Spontaneous bruising and fractures. Bone loss. Muscle wasting. Diabetes. Heart disease. Immune suppression. Adrenal-function suppression. Candida overgrowth. Weight gain. Humpback. Moonface. Mood disorders. I'm probably missing a few.

Along with the nerve damage itself, these possible side effects are one of the main things I have to monitor and endeavor to prevent. I do so with nutrition, physical exercise, journaling, mental health exercises, and more. (I am thankful that I and Hubby have the means to afford all I do to help my body to function as well as it can; things insurance won't touch.)

In my studies, I read that the human body produces around 7 milligrams of cortisol per day. So, I have tried to keep my daily prednisone below 7 as much as I can to help my adrenal glands to keep producing at least some of their own natural steroids. My adrenal glands are no doubt functioning at a low level after over a decade of steroids; not only oral, but also injections which have ranged from over 240 to 120 milligrams per every 6-week injections/epidural treatment. (Actually, it's been longer than over a decade; in my past chronic illness life, steroids kept me breathing. But I was able to get off them after almost 20 years, and I no longer suffer with asthma.)

From my understanding, in order to check to see how well my adrenal glands are functioning, I'd have to go off steroids, which would be dangerous for me at this point because I have been on them so long. Plus, the treatment for low/no adrenal function is...daily prednisone. There are only three medical treatments for polyradiculitis: IVIG therapy, plasmapheresis, and steroids. Because my lab work didn't show the correct autoimmune markers (which was checked multiple times), insurance would not cover IVIG or plasmapheresis. At the time (back in 2013), I was told that the cost for either of those was $10,000 a pop, and I might have needed them every few weeks for an undetermined amount of time.

The trek took a turn...

I'd like to find the sections of the book. Sections that prompted tears as I read the words about John Pepper whom, at that point, had had Parkinson's for over thirty years. Words describing the labor-intensive focus required to move one's body. 

~*~

I don't have Parkinson's, but the words are describing me...

They get it. They totally get it.

I read about Pepper's discovery that walking saved (and continues to save) his limbs and mobility, among other parts... 

That's me. And biking. 

On page 62 in my hardcopy, the author states, "...But at times I feared Pepper was a man caught in some Dantesque level of hell." 

OMG! YES!!! That's it exactly! Living in these 12-week cycles divided into 6 weeks each. That is exactly how it's been, a Dantesque level of hell and being bumped around between those levels. Oh, the many times in my journals that I've written about the insanity of it!! It could drive a body madd, if they let it. 

The author continues, "He [Pepper] had longed so much to return to movement; now his wish was granted but only if he concentrated on each and every muscle fiber as it twitched. He might be walking, but was it at the cost of losing the free flow of spontaneous thought?"

He gets it all the way. Not exactly me. But damn close. When I discovered I could ride a bike despite my nerve damage, and that cycling brought me good temporary relief, I knew I had to cycle to keep my synapses firing. It was like, I had to cycle to keep my nerve cells communicating. If I didn't, they'd go quiet really quickly. Cycling wasn't and isn't an option for me, if I want to stay mobile. It's my job. And moving, especially everyday movements of dressing, walking, writing, standing, bathing, whatevering... takes so much focus. Cycling less so, once I'm in the saddle and pedaling. Getting on and off the bike? Focus, focus. 

The book is The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Norman Doidge, M.D., published in 2015.  Part of my current self-help work is to read and study the book which was suggested by one of my doctors. So, I am. And it is fascinating. 

It reminds me of a book I read last year and continue to go back to: Cured: The Life-Changing Science of Spontaneous Healing by Jeffrey Rediger, M.D., published in 2020. 

Cured is about, among other topics, outliers in the terminal illness field. That is, folks who get well and aren't supposed to. What are the commonalities? How can others apply them? It's a must read, in my opinion. 

TBWoH is about, among other topics, outliers in the neurological field. That is, folks who improve or get well that aren't supposed to. What are the commonalities? How can others apply them?

~*~

My weeks of Dantesque hell are over. 

I can no longer receive epidurals...

...which for the past nine years have brought me temporary relief so that, for a few weeks every 12-week round, I felt what it felt like to be 'normal.' To be able to move with relative ease, without so much concentrated effort. 

My weeks of Dantesque hell are over. 

I can no longer receive epidurals.

The relief-effect had been waning anyway, since August of 2021. 

A few months back I said to Dr. Neurologist, "The epidurals and trigger points aren't working as well."

Dr. N: "That's not good."
Me: "What do we do if they stop working?"
Dr. N, in his American-Swedish accent, answered, "I don't know." *pause* "But we're not gonna think about that right now." 

That was then.

This is now. 

My weeks of Dantesque hell are over. 

I can no longer receive epidurals.

I landed in the hospital for three nights: April 28, 29, 30. 

Emergency Room Doc after tests and CT scan: 

"Two good-sized blood clots. One in each lung." 

*pause*
"It's good you came in. These are the fatal kind..."

Hubby and I were shocked, to say the least.

I think the scariest part was how quiet it was. 
I had no pain. 

For about the prior week, off and on, I'd had more dizziness and shortness of breath and fatigue than I normally would, but these are symptoms I have anyway that come and go in duration and severity with polyradiculitis-on-steroids. 

The straw on the camel's back that led me to the doctor on Thursday, 4/28/22, one day after I turned 63, was my high pulse rate. That is not one of my 'normal' symptoms. I had discovered it was higher than normal on Monday but was taking a monitor-and-observe approach because sometimes I get weird symptoms that seem to just disappear.

I've owned and used an oximeter since at least 2014ish. On 4/28 around 2:40 PM, my pulse went up to 144 as I exhaustedly loaded a bike into the back of Sir Edward Ford Explorer as part of our prep for Hubby's and my annual Florida cycling trip; we were supposed to leave the next day. 

A pulse rate of 144 while loading a bike is not normal for anybody. 

Besides the good news that I went to my primary care doctor (who just happened to have an opening at 3:30 PM) who checked me out and sent me to the ER (stating: "Do not pass go. Do not go to Florida. Do not go home and think about this. Go directly to the ER."), the other good news, which was discovered within an hourish or so of the clots, was/is that ... my heart is in good shape. (Echocardiograms are fascinating. Swoosh. Swoosh. Click. Hum.)

My weeks of Dantesque hell are over. 

I can no longer receive epidurals.

Since I'm now and for the foreseeable future on a blood thinner, the side-effects risks of epidurals are too high compared to my relief-benefits. (Today, my doctor changed the blood-thinner drug I've been on since 4/29. Apparently, I developed the rare side effect of insane insomnia, so we are trying a different drug.) I can still receive trigger point injections (cervical and lumbar), but epidurals have typically given longer and more significant relief. Currently I'm somewhat injection-shy because they haven't been working as well, and they are not without side effects. 

Evidence indicates that the clots are gone, or well on their way to gone. My blood pressure and pulse are much more normal, almost completely normal.

Because I had a blood clot once before (in my left calf, in 2008 after my first hip replacement surgery) and because the recent clots were so "quiet," I'll need to stay on a blood thinner probably for life. Blood thinners do not dissolve clots; the body dissolves the clots. The blood thinner helps keep clots from coagulating, keeps them from picking up clot-stuff inside blood vessels, like a snowball in motion collecting more flakes as it rolls along.

My weeks of Dantesque hell are over. 

I can no longer receive epidurals.

I'm currently in Week 9 of my current, #38, 12-week Dantesque-epidural cycle.

At least for now, there will be no Round #39.

I've lived Weeks 10 thru 12 thirty-seven times, but not without the hope-of-relief that awaits at the end of Week 12 after I receive my lumbar epidural. I've posted multiple blogs on toss & ripple trying to describe how dreadful Week 12 is; I have never been able to find sufficient words to describe that hell-week. The symptoms of fatigue and weakness and slowness are so extreme; the pain and tenderness are low-level, all through my sinews. Weeks 10 and 11 aren't so happy either. 

As I approach Week 10, I feel I'm entering, with eyes wide open, the valley of the shadow of death.

But not literal death, or even figurative.
But definitely a narrow path in a valley, between looming rocky cliffs that cast their shadows into the path.

The "valley" is actually more of a ravine.

I look so tiny on that long, narrow, winding path.

 
How will I fare through the shadows? 

Will I come out of the valley-ravine of shadows? 

Or will I need to learn to adapt?

If adapting it be, will I find pockets of hope, pockets of sunshine, and discover the rare and awesome beauty of the shadows...their forms and shapes and reflections?

I've always been good at finding silver linings...

So, I'm now on a different path.
My medical and wellness team and I have a plan. 

I do my work and my team is working their specific roles with me, listening and guiding and discussing as needed. 

How things will turn out is yet to be seen. 

But it is going to be quite a trek.

Hubby's with me all the way. 

I have had to (again) step back from 2D and 3D social life. 

I plain old don't have the physical, cognitive, and emotional energy to engage very much. 

(I've also disabled the comment option on my blog. I don't get many comments, but it's one less thing to babysit, so to speak.)

When I said to my functional medicine doctor, "I'm in a new chapter," he replied, "No, I think you're in a new book."

Currently, due to my nerve damage symptoms and not getting my regular relief from my lumbar epidural on 4/14 nor from my cervical spine injections on 5/24, I'm not able to bike outside much. I don't have the energy spark it takes to do the prep and after-work of a bike outing. I've gotten in two outside rides since April 23. I'm trying to ride my indoor trainer a few times a week. 

~*~

Monday, 6/13/22:

Below is a pic of a drawing I finished last night, Sunday 6/12/22.

In between the rocky cliffs, a path goes up the middle of the Valley-ravine of Shadows. 

The Trek: Valley-ravine of Shadows

I'm at the bottom of the drawing, on the trail, wearing a hat and headlamp, with my trekking poles, hiking up the trail which goes all the way to the top end of the page (though it's kinda hard to see the very end of the trail).

Today, Monday 6/13, begins Week 10, which is depicted at the bottom of the drawing. The top of the page is the end of Week 12, Monday, 7/04...

~*~ ~*~

Since April 29th I've started drawing using a technique called neurographic art. Most of my pics are black-and-white and are drawn in my regular journal. But I've drawn a couple in my mind-body sketch journal, and I colored them. I used color pencils....

Into the deep....

The conversation: all systems working...

~*~ ~*~

Wardrobe change...

A couple weeks ago I discovered the "Search This Blog" gadget (that's the real term - "gadget") wasn't working on toss & ripple. 

One of the suggested fixes is to change what's called the "theme," which is the design format. 

So, toss & ripple is going thru some wardrobe changes. Maybe one of them will have a gadget fix. First change isn't working, and I don't really like the looks of it. But it takes time to format this stuff, so the second change will come along at some point. 

***
A day later:
Okay. Tried a couple more themes and that still doesn't fix the "search this blog" gadget. But when I use those same other themes on a different blog, the "search this blog" function works. So, there's obviously another problem. Not sure if I'll dig deeper to see if I can fix it.
And for now, I'm sticking with this new design format with its default hues: water droplets in the atmosphere with dark hues in the background....

Another day later:
Well, that didn't last long. 
I didn't like the dark hues, at least not for this blog. 
So, back to the wardrobe closet...

~*~

One of my new favorite songs. Right now, it's my favorite. But that will eventually change...

Elephant Revival - Sing to the Mountain (Live at the Boulder Theater) - From "Sands of Now" - YouTube

~*~

June 8th: 

Finally, I think I like the wardrobe adjustment.

Back to the previous background of mountains.

But the "search" gadget still doesn't work which is what started this wardrobe change.
Oh well...

~*~

Delighted by almonds...

Pages from my journal: 3/05/22

I read... 

How horrible Covid has been.

Not just the virus, but also the restrictions on society.

Lock downs. Stigma. Fear. Entrapment. Terror.

I read...

About current threats of WWIII.
Authoritarian rule. Totalitarianism. The elite.

I read...

About pollution and its repercussions.

Plastics it seems in literally everything, even in our blood and bodily tissues.

Microplastics that cannot dissolve into anything natural, yet.

I keep thinking one day a bacteria will come along and eat plastic.

Wow. Imagine that. 

Cars would cease to function.

Computers. Dishwashers. My cannabis vaporizer.

I have a picture in my mind of a car, just it's steel skeleton with rubber tires.

Driver dumfounded.

Plastic-eating bacteria.

Anyway, when I read an essay about the horror of our times, I most always think of history and wonder...

Is it really that bad? Has it not always been this way? Wars. Diseases. Famines. 

Have our lives of convenience made us so small minded that we tunnel in on what we can't and don't have and do, rather than what we can? 

Am I being judgmental here because of my own privilege? 

How would I feel, think, respond, in a war-torn homeland? 

Which could happen here in the USA.

I've imagined it for decades.

As I sit outside in the woods or in the residential burbs with trees and squirrels and birds and bugs and dogs and homes.

Homes where we have running water, heat, air conditioning, and electricity. 

Humidifiers and dehumidifiers. 

Covid did not really affect our family. 

Son and his now-wife had Covid twice. Once before vaccination and once after. Both of them were able to work through Covid, no job loss.  

Daughter had to go on unemployment for a number of months, but her boyfriend continued to work.

Hubby continued to work, no job loss.

I got my itty-bitty disability check and was able to continue my few-hours-per-week work from home with Art-o-mat.

The only thing that really changed for Hubby and I was that we quit going out to eat. 

I had already dropped out of social life in 2015, for the most part. 

My social life then bloomed with animals including wildlife in the backyard and on the trail.

None of that changed with Covid. None. 

When I read how terrible things are today environmentally, politically, medically, I'm simply not surprised. 

How could things be otherwise? 

It seems greed wins out too often in history.

I don't feel the fear and anxiety that some (many?) folks write of. 

It feels I live outside that bubble.

Am I indifferent? I don't think so. 

But how much of my lack of anxiety comes from my place of privilege?

Or is it just from living decades of life with blow after blow after blow after blow after blow after blow after blow after blow after blow after blow after blow....

And one finds themselves exhausted, curled on their side...

But not in the fetal position, more in the spoon position... 

Exhausted on the ground, red dirt....

In an open grave that was shoveled out with each blow pushing the velveteen rabbit of a person farther and farther down the hole...

Is it apathy? 

Or plain old exhaustion?

Exhaustion knowing that I can't change all these things.

All I can do is control my choices, and sometimes not even that.

This morning when I opened the kitchen door to the screened-in back porch, a squirrel crawled up on the deck that surrounds the porch. 

He climbed up to eat some millet that I regularly provide on the deck railing.

He looked around for his almonds, which I also regularly provide. 

I picked up the almond jar thinking Squirrel might run as I made my way across the porch to the screen door leading to the deck. 

But he didn't run. 

He backed away a little and waited as I gently threw out a handful of almonds, to his great delight.

Yes, this is my purpose. 

Feed the squirrels and chipmunks and crows and songbirds and raccoons and possums...

It's all I know to do in this moment...

Steward Earth and Life as best I can... 

Filled with purpose...

Beginning last week, I've been perusing some stuff I've written but not posted on toss & ripple.

I have the intention to post some of these pieces on toss & ripple.

It remains to be seen how many will land here.

Today, I came across the following one. 

It was good to reread; a reminder.
I did post (most of it) on my poetry blog back in November. 

And now I post it here.

~*~*~

Prompt: Trapped in this journey

11/22/21

I've not written for the workshop this past week.

But I have written for me....

I'm currently taking a course: Potential of the Earth: Course One, a discussion between Charles Eisenstein and Orland Bishop. 

11/19/21

This course is bringing meaning to my life of the past 10 years...

Years that often felt without purpose...

For seven of those years, I lived with a deep sense of purposelessness...

I wrote about it often...

A nothingness...

Yet, I did feel a sense of purpose through my connections with non-human animals...

Many through my pet-sitting business...

Many through my wildlife encounters...

In 2017 I wrote a blog piece which I entitled Beyond Words...

To swim in her chestnut eyes...2020

The toilet valve incident... 2019

Fabio at Grayson Highlands....2017

Fabio's offspring at Grayson Highlands...2021

Multiple encounters with foxes and deer and raccoon and possums and crows and songbirds and squirrels and insects in the back yard....

Multiple deer encounters at Muddy Creek...

Beloved ground hogs and deer along the Ararat River...

The ancient giant cliffs and rocks along the New River Trail...

The ancient New River itself...

The trees...

Nature's beloved trees...

My beloved trees...

And their lessons...

Grandfather Fir at Grayson...

Whom I last visited on October 19th...

Every time an answered prayer...

What has been that answer this time?

The encounter with the dissociation after Unit Two of this course?

And the insight thereafter?

Will that play into my physical healing, this round?

I do not know...

Yet I have seen parallels in my two different chronic illness lives...

The asthma coincided with the stifling of my voice in The Way...

A specific decision pre-happened Asthma's onset...

I can pinpoint it...

The widespread nerve damage developed on the heels of the therapist abuse...

I felt paralyzed, numb, dumfounded after Therapist's initial gaslighting...

A specific decision pre-happened the onset...

The decision to speak up publicly...

A month later, my limbs turned to rubber...

Both chronic illness lives are also connected with heavy metal toxicities...

In part, or whole, brought on by medical interventions...

I feel that somehow that is connected to the emotional and psychological...

At the very least, they are another straw on the camel's back...

I am a skeptic regarding a 'special time' in which we live...

Every pinpoint in time is special...

Eras...

Moment by moment...

Smaller than moments...

However, I do not want to throw out the prophet...

So, I listen and I consider...

I breathe and recall...

Incidents and experiences from my own life...

Encounters...

Spontaneous serendipities... 

Which seem to be the norm these days...

They may have always been...

But I didn't have the awareness to hear them...

Too much static...

So thus far, this course has opened up my realization...

That these past 10 years...

Have been filled with purpose...

I had understood how my pet-sitting provided a meaningful service...

But I could not understand how my Nature encounters provided service...

Until now, through this course...

The purpose of re-connecting with Earth...

Of communicating with Her...

With Her creatures in the wild...

With Her rocks and rivers... 

With the dirt beneath my feet...

With the plants...

With the beloved trees...

And even with inanimates...

All of which are initially made from earth materials...

Nature has hosted me and continues...

And I have hosted her and continue...

Humans are a part of Nature...

And I think I might be re-learning...

How to host humans...

And to allow them to hosts me...

Deep breath...

That is all for now...

~*~*~

I'm never ready....

Prompt: I'm never ready...or whatever bubbles up
~*~

I received my routine cervical spine injections last Tuesday, March 1st.

It was around my 48th round, maybe 50th, maybe 47th.
I started receiving them in December 2013 or January 2014.

Nine pokes in a circular pattern at the top of spine. 

I've received 37ish lumbar epidurals since December 2013. 

I get the epidurals approximately every 12 weeks.

The cervical trigger points used to be every 6 weeks.
At some point I was able to reduce them from every 6 to every 12 weeks rotating with my lumbar epidural.

Wednesday, the day after my cervical trigger points, I lie on our king size bed and later in the recliner...

Feeling the weirdness in my body as the pharmaceutical agent engages my nerve roots and their peripheral receivers around my body...

Especially in my legs and arms...

My body exhausted, feeling like it has been beat up for weeks on end...

I say to my self, I feel like a fucking rag doll. I'm so tired of it all.

Like other times, I  begin to cry, partly from sheer exhaustion...

An exhaustion one feels after an intense battle and can finally let down...

As I wait for the relief, hoping it comes...

Surely it will come, won't it?

"Let down."

In the past, that's how I've described these sensations...

The let-down reflex of the breast when a lactating woman hears her infant cry and her body "lets down" to allow her life-giving milk to flow from where it is stored in her mammary glands...
The "let-down" releases the full-breast feeling...

I know this feeling because I breastfed my own children...

One for 2-1/2 years and the other for 2 years...

But the let-down I feel after my injections isn't in my breasts...

It's in all my limbs...

Wednesday I cried, depressed.

What can I do to help my self?

I don't want to call Hubby.

I could call Abby, but she is dealing with so much right now.

I'll call Daughter.

Daughter never tries to fix me, never. 
Or even tries to cheer me up.

And that can be most helpful.

After our phone chat I'm able to pull my self up from the recliner...

I talk my self through stripping the bed and redressing it...

Washing linens and towels, drying them, folding them and putting them away...

All major tasks for me...

And I succeed.

I begin to feel my body reach beyond the ragdoll stage. 

By Friday, March 4th, I'd lost over three pounds

By today. Monday, March 7th, I'd lost almost six pounds.

Most all of that from de-inflammation.

I know the inflammation will come again...
And we, my body and I, will do it all over...
Again...

Beyond my grasp...

Prompt: Beyond my grasp...or whatever bubbles up

~*~

5:30 PM, 3/07/22

I don't feel like writing. I'm tired. 

Maybe I should just skip the writing workshop tonight. 

I have written in my journal this week.

Journaling writ. 
But I don't feel like looking through my journal for anything to share. 

Maybe I should skip the workshop tonight. 

Carol, you don't have to write anything grand or profound or even understandable. 

You can just let thoughts spill.

I walk downstairs and make my supper, which is actually heating it up.

Frozen vegetarian, mini-spring rolls. 

I heat 6 of them for one minute in the microwave. 

I turn them over and add fresh organic spinach and heat another minute.

I pull them out and chop 1/2-avocado over them.

I cut each roll in half and add a wee bit of sauce.

"Eat real food. Not too much. Mainly vegetables."

This is almost real food, if not for the microwave. 

I carry my plate onto the screened-in back porch and sit down. 

The sky is gray and cloudy.

A light rain is falling.

Temperature is around 70, unseasonably warm. 

Wind is blowing at 12 to 15 miles per hour.

Wind chimes play their tunes.

I look at the dead flies I have caught in my homemade fly trap.
A tall thick drinking glass in which I've poured about one inch of apple cider vinegar, a touch of honey, and a few drops of dish soap. 
Plastic wrap, held on by a rubber band, covers the top of the glass.
In the plastic wrap I made four holes, large enough for the flies to enter, attracted by the vinegar and honey, and unable to exit because of soapy wings. 
I apologized to the flies. 
It feels kind of cruel to trap and kill them this way. 
I had tried to get them out of the porch other ways, but without success. 
I justified the trap telling myself when I made it, "Well, at least they might enjoy the honey and vinegar during their last moments." 
I've caught 4 flies in the last few days.
Some live ones are still buzzing around on the porch. 

This is the first year we've ever had a fly issue. 

Though it's not really an issue.

And I don't want it to become one.  

I sit with my spring rolls, slowly and mindfully eating. 
I close my eyes.
I take in the wind through my body.

The wind feeds the fires, the fires that are such a permanent landscape of my inner life. 

The multiple fires that burn upon the laurel leaves that float upon the pond of grief.

The eternal flame that burns atop my grief vessel. 

The grief vessel is a vase of ceramic or maybe ceramic-and-precious metal mix.

It can be whatever I want, morphing if I so desire.

Designs are carved in the vase so I can see inside where clay balls of different sizes and colors rest.

The vessel sits in front of what I call my Sol Disc which pulsates like the sun. 

Sol Disc is located in my solar plexus area. 

Other campfires burn upon the hill.

Many campfires attended by different parts of me that have come out of hiding since June.

These parts of me are stick people.

They are abundant.

Back in June they were crammed in a dark tunnel.

Now the tunnel is gone.

They used the rocks of the tunnel to build campfire areas, where they work to aid my inner life.

The tunnel had led to an underground oasis which opened up farther up the hill to another world where I can shape shift. 

Even though the tunnel is gone, I can still visit the oasis and ride my unicorn until I shift into a crow and then become an eagle. 

Waters from the oasis flow like a small river underground down and inside the right side of my torso and meet up below my belly with the pond of grief. 

These sacred, life-giving waters feed the pond of grief.

Again, I notice the wind in my physical life.

I watch the tall pines sway in the back woods. 

And I thank them, these pines and other trees.

They have been a great comfort and inspiration through the years of living with widespread nerve damage. 

They still comfort and inspire me. 

Swaying, strong, surviving the elements.

And still producing an abundance of seeds.

New life. 

An experiment...

Prompt: An experiment...or whatever bubbles up

*~*

How can I even describe The Way Corps?

I've been saying for years now that I want to print out my story narrative. I bought the three-ring binders, a set of 15 (I think), maroon in color. I own plenty of page protectors. In my mind I know what I want to do.

But still, the binders and page protectors sit empty. 

In November 2021, I again picked up the project. I published each section on an online forum that is not viewable to the general public. 

I entitled Part 1: Why would anyone join a cult? 

Part 1 is divided into 5 parts: 

1: Back to the Garden...

2: Latchkey kid...

3: Speaking in tongues & filled with questions...

4: If Ruth Graham doesn't know, who does?... 

5: Demonically tainted...

I entitled Part 2: The structure of The Way

Part 2 is divided into three parts:

1: The Way Tree & Rock of Ages

2: Word Over the World Ambassador Program

3: Way Corps Program

I entitled Part 3: Word Over the World

Part 3 is divided into five parts

1: Way Home number one...

2: I meet "the man of God..."

3: By revelation from God, under the giant blue-and-white-striped big top boasted as the largest in the world...

4: Keep it in the family...

5: Splinter extraction...

I posted my last entry on 12/22/21 - Part 3:5, Splinter Extraction...
It's about the abortion.

And I have been stuck since then. This stuckness has happened in this same place of my story each time I've attempted this project.

I get stuck when I am 20 years old, in September 1979, and entering the in-residence 10th Way Corps training at The Way College in Emporia, Kansas. When I get to that point in my story, I become dumbstruck, in a sense. I cannot find adequate words to describe whatever it is I'm trying to describe. Perhaps part of it is that my memory is more slippery about that year, and I no longer have any journal pages I wrote from that year that I can refer back to.

Though my other Way Corps years are difficult to write about, I'm not as dumbstruck beginning in 1980 when I AWOLed from the Way Corps, abandoning my post and the WOW Ambassadors under my so-called leadership. I left them high and dry, like a Judas betrayal.

And then the year after that, when I decided to re-up my Way Corps commitment and start the program all over. That's when I got asthma. And then the following year when I again enter in-residence at Emporia, KS. And the year after that when I AWOLed again, deja vu...again abandoning my post leaving folks high and dry. 

For decades I carried that shame, even after I left The Way International some 24 years later. 

I felt...What kind of person with any integrity would do such a thing? Especially when it comes to overseeing people's spiritual lives, especially with a commitment as serious as The Way Corps?

Perhaps those years are just too hard for me to write about? Perhaps I can't find the words because there aren't any? Perhaps I get frustrated with my lack of memory around some of the events, circumstances, relationships? Yet other memories seem so crystal clear. 

The Way Corps wasn't like simply going to college. 

And The Way wasn't just another denomination.