Thievery

In my blog post yesterday I wrote, in regard to my pet-sitting business, "This quiet Christmas, my decision to no longer post on my Twitter and Linked In [business accounts], and allowing my [business] website to go dark - well, I again feel a sense of loss."

A few hours after I posted the blog piece I asked Hubby, "Have I shared my feelings about letting my website go?"

He thought for a moment and answered, "No."

"It's affected me more than I want to admit. I realized it this past week - that some of the depression I was feeling was because of the website."

I started crying. "It's one more thing that's been stolen."

I cried harder. "It's one more nail in the coffin."

The tears rolled.

I allowed myself to grieve.

I've known for months I was going to let the site go dark. GoDaddy, my web host, had called me a few months back. They do that from time to time. I talked with the guy and told him I needed to let the site go. He said all I need to do is to just take it off auto-renew. But I didn't do anything about that until Tuesday, December 26. I logged into the website account and deactivated my auto-renew.

That's when the finality-reality set in.

On Friday, December 29, I posted a no-longer-going-to-be-posting announcement on my business Twitter & Linked In accounts.

My pet-sitting business has been like my child since I decided to acquire the business in January, 2011. Even though I've had to continually downsize since August, 2013, the action of letting the website go dark - it's like a death.

Am I exaggerating? I don't think so.

I know, it's just a website. But to me it represents my heart, work, relationships, and all my dear pet friends - some who have died and some who have moved away and some who I've had to bid farewell due to my illness.

And the site represents the goal and dream I had when I decided upon a pet-sitting business:
I'd walk and walk and walk dogs, pay off the mortgage, and go thru-hike the Appalachian Trail (AT).

The AT was a dream from high school, but I had to let it go partly due to my commitment to The Way, to severe adult-onset asthma and other auto-immune problems (which I overcame after a couple decades), to responsibilities of raising a family, and to helping take care of my quadriplegic father.

The resurrected (and very doable) AT dream of 2011 was a dream-possibility come true. That goal gave me purpose while in the process of empty nesting; while recovering from an abusive mental health therapist with whom I had previously teamed up with a purpose of helping people recover from cult involvement; and while continuing to find purpose after letting go of the all-encompassing, true-believer purpose of taking the Word to the next generation and beyond.

My AT thru-hike dream is now (mostly) dead, though I still hang on to a tiny, thin thread of hope.

When dealing with losses (especially due to my illness), or when going through self-pity episodes, I typically counter by bringing to mind:

• the good in my life. And there is much good, much good. I am well aware of my good fortune and privilege just because of where and when I was born, among other things.
• people who are far worse off than I and struggle moment-by-moment to survive.
• the many things I still can do, in spite of the many losses and things I can no longer or, at least seldom, engage.  
• the many serendipitous events which have led to partial answers that have brought improvements to my condition. More answers may still come.

But yesterday was not a time to use that coping skill.

Yesterday, I needed to grieve the thievery of one more part of me.

Abilities and dreams have been stolen by this illness.

Sometimes, when I've tried to share about my symptoms and losses due to the illness, people have responded, "Getting old is a bitch."

But my losses and these symptoms are not due to aging; they are due to a mercurial, stealthy thief which has been hard to catch. My ability to recover is affected by aging. But the ailments themselves are not.

It's no secret that I go up and down between denial and acceptance, between hope and despair, between apathy and motivation, and other betweens I can't think of at the moment.

I think that's a normal seesaw to the circumstances. And to life itself.

Or maybe a better comparison is the up-and-down on a merry-go-round...

~*~

Happy Moo Year. Cows seem to be such peaceful animals....

Blue Ridge Parkway cows. 12/31/2016

A mostly negative blog post ~ a compost pile of losses...

Come March, 2018, my pet sitting website will go dark. I'm not renewing my contract. I haven't accepted new clients in over two years. There's no point to continue spending money on a website.

I contemplated this past March whether or not to renew for 2017. I decided to stick it out one more year because I'd had surgery in August, 2016, to remove and replace my poisonous hip implant. Maybe I'd improve enough to maybe build my business again?

But, that didn't happen.

I've contemplated for at least six months whether or not to continue posting pet pics on my business social media sites. I have a business Facebook page, Twitter account, and Linked In account. Mainly I post for the pets' humans. My other reason is to spread some smiles. I get a few likes and comments here and there.

This past week I posted on Linked In and Twitter that I'll no longer be posting updates on either of those sites. But I will continue posting on Facebook.

This Christmas I only had two clients who were out of town. They own cats, so I only visited one time per day. Both clients said I could skip December 25, so I had no clients on Christmas day. It's the lightest holiday pet-sitting I've had since I started in 2011, except for last year because I was closed at Christmas while recovering from surgery.

In 2013, I had at least 185 pet-sitting clients. In late spring, 2013, Hubby and I put the business up for sale because Son was moving out in August. Son helped me run the business. Due to my illness, I couldn't run it on my own.

We had one bite, as far as a buyer. But he wanted me to continue on as part owner. I couldn't do that.

I decided instead to downsize, and give the clients I was letting go to the walkers who worked for me who I was also letting go. They were able to build their own businesses. One of them didn't continue; he preferred working for someone as opposed to owning his own business. Last I knew the other still has her business, and it's been successful.

In 2013 I started turning away new client inquiries. Every week, from then through at least the end of 2014, I turned away inquiries. Sometime in 2015 I finally updated my website that I wasn't taking new clients.

When I downsized the first time in August, 2013, Hubby agreed to help me with the clients I was keeping. I couldn't have continued without his help.

I've downsized a few times since then. I closed for 10 months when I had surgery, except for a few clients that I added back slowly beginning in December, 2016. When I reopened in June, 2017, I had to reduce my hours, which reduced again my number of clients.

So now, I have about 8 clients, which keeps me busy - sometimes too busy. Again, I couldn't do it without Hubby.

This quiet Christmas, my decision to no longer post on Twitter and Linked In, and allowing my website to go dark - well, I again feel a sense of loss. Another loss due to this incessant, god-damned, imprisoning nerve damage with all its accompaniments. (Sorry for sounding so negative. I know I don't have to apologize, but I want to apologize - so I do.)

As I type this, in my mind's eye, I see a mountain of loss - like a huge compost pile. It's a small mountain, as far as mountains go. But it's big enough. The losses at the bottom are compressed, and some have rotted.

As we age and experience life and loss (or if we are sick, regardless of our age) and the heap gets higher and our bodies get weaker and we can't turn the compost to allow air to speed along the decomposition, the pile gets bigger. Gawd, that sounds so depressing. I guess it is, maybe.

~*~

I'm one of the youngest of my umpteen cousins. My mom was next to youngest of ten siblings, and I'm her youngest. So I'm at the bottom of the totem pole, as far as age.

I've not shared my condition with my cousins, most of whom I haven't seen since Mom's funeral in 2009 which was before I developed nerve damage. One cousin who is local and who I've eaten with a couple times since 2011, which is when the nerve damage started, knows a little about my condition.

Sometime in the past coupleish years, one of my eldest cousins called me. I've always liked her. She's upbeat and has a great curiosity about life and cultures and people. She's in her mid-to-late 70s. I'm not sure why she called, but part of the reason I guess was to tell me about another cousin who had just turned 70 and had recently had back surgery. My cousin must have stated, "She just turned 70," at least five times in our 15ish-minute conversation. She suggested I call that cousin, who I haven't spoken with in 15ish years, at least. She also said, "You should come visit us sometime." She and her husband live in Atlanta.

I told her my health wasn't well and that my symptoms mimicked ALS, which they did. But I didn't expound further. I was hoping that maybe with the ALS comparison she'd get the message that I just wasn't up to travel or socializing or phone calling to check in on the sick and aged. But either I didn't convey my message well, or she just didn't get it.

I don'think that she could grasp the concept that, for example, my 80+ year old mother-in-law can move faster than I (except when I bike), and has more energy. And, to boot, my mother-in-law uses a cane. I didn't give my cousin that example.

But I got the sense that Cousin thought that since I was in my mid-50s and the younger of the cousin-brood, that I have the energy to reach out to the elderly and sick. And maybe she didn't think that, and I just felt self-imposed pressure.

This Christmas I received my cousin's newsletter that she sends every holiday. It was about her and her husband's travels and that her eldest sister (who is at least 80) put on a great birthday party for her husband's 80th birthday and cooked for 70 people. My cousin included a handwritten personal note stating she hoped all were well, especially me. And that another cousin (who is close to my age) had been in the hospital for congestive heart disease and how I should give that cousin a call.

I read the handwritten note, the newsletter, and cried. I looked at Hubby and said, "What about me?" But, the cousins don't know. At least, I haven't told them other than what I mentioned above, and that was before I knew about the metal poisoning. I have no idea if any know I had a revision surgery. And if I don't squeak, nobody knows. Maybe my condition is in the cousin grapevine via my one local cousin who does know a bit more or my sister who may sometimes talk to the cousins. I don't know.

Next year at holiday time when I receive Cousin's newsletter, I'm gonna have Hubby screen it before I decide whether or not to read it which will depend on my mindset and how I'm coping at that given moment.

~*~

If I spoke up with all my ailments - my god, it'd be depressing. My most recent new ailment, which happened the beginning of December, was back spasms that moved down my left hip and leg and produced a burning swath of waves of pain that shot to my groin. That's my hip-surgery side. I would have been scared except that I'd had x-rays a couple weeks prior that showed my hip was good. The spasms and pain and burning and extreme lameness have dissipated now. My epidural helped and maybe a few other things that I and my body did and are doing.

And then I had another recent scare - my December blood test for my yearly physical showed slightly elevated glucose levels. Diabetes is a side effect of steroids, and I've done my best to try to keep that side effect at bay. Thankfully, my A1C is normal, and the elevated glucose was probably due to my steroid epidural which I had gotten 1-1/2 days prior to my blood being drawn. I won't do that again. But I had to wait a week between learning about the elevated glucose and getting my A1C checked. So I had to manage my worry for a week.

A few other slight abnormalities showed up in my blood work. Not enough to really be worried about, but I don't want them to become something to worry about. So, I see my nutritionist this Wednesday to reassess.

~*~

So, this is my mostly negative blog post...and stating that makes me chuckle. :D

Happy 2018! :D

One of my happy pics. Feral ponkey & pony. 6/01/16. Grayson Highlands.

Big thick book-of-books

I may have set a goal to read the whole Bible in 2018.

In my almost two decades as a true believer, I never read the whole thing. But I read most of it and sections of it multiple times.

I'm reading sequentially, but from two different books at the same time - three chapters from the Old Testament, and, the same day, three chapters from the New Testament. If I get to my reading today I'll have read Matthew, chapters 1 through 21, and Genesis, chapters 1 through 21. I'm reading The Amplified Bible.

I like reading two books at once. Keeps my mind fresh, I guess. And usually when I read other books (outside the Bible), I read a couple (or more) books at the same time.

When I was around 13 years old before my true-believer daze, I read the four Gospels. I remember the exact words I thought about Jesus -"ego maniac." That's how he came across to me in the Gospels. And that's how he comes across to me now. And, it's pretty clear that today's wealth-and-health preachers emulate Jesus' tactics, at least so far in Matthew.

Genesis is more stimulating to me than Matthew. I enjoy the historical perspective. I think of various cultures ( such as Native American or Native of Any-land) that passed along their own oral legends and myths, intertwined with facts, explaining the origin and purpose of life. I think of how those oral stories were written in pictures and, later, in words. And I like the human aspects in Genesis - relationships with all their complexities and emotions.

I may offend some folks by stating the following. But, reading both the books at face value - well, God and Jesus are both manipulative. They don't answer questions directly. They speak in riddles. They demand obedience without explaining why. Jesus demands secrecy without explanation, and he talks down to people. They use fear motivation - beware of this and that with threats that if you disobey you'll be tormented. Just to list a few of the characteristics that I notice.

In my true-believer daze I explained that the language comes across like that, at least in part, due to:

• the culture at the time a particular book was written and that God could only work with the writer's ("men of God," which did include some women) own knowledge and ways of communicating; ie: God didn't use automatic writing or possession to have His Word written and had to limit Himself to a narrator's will and language and culture and spiritual understanding at the time.
• our limited (or lack of) knowledge regarding history, orientalisms, and the cultures of the times.
• translation - that the original would have been clearer.
• God's foreknowledge - not that God controls the future, but that He knows where it is going; ie: when God foretells it's not that God makes that happen or that it is even His will, but that He knows that's what is going to happen.
• the spiritual warfare that has raged since before the current heaven and earth and how the devil has maligned God and caused confusion.
• our limited spiritual understanding - God's ways are higher than ours and all things are not yet revealed.
• God's use of different writers to convey different aspects of a given situation - one book may give one angle, but that must be taken in the broader context of what other books convey.

Looking back I think those explanations were, for the most part, rationalizations to try to make the Bible fit, since it was supposed to be perfect. (Hmmm, I guess that rationalization spilled over into other parts of life, especially when it came to "things in the Ministry"...)

Will I make it all the way through the big, thick book-of-books? I don't know. I might lose interest.

I've thought that maybe I should read the Koran at some point. I've only read a few paragraphs hither and yon online.

Children Go Where I Send Thee...

In my last blog entry, I linked to a poem which I wrote on December 2, 2017.
The poem expresses some of my thoughts/feelings living with chronic widespread nerve damage.

The last three verses read:

I don't feel much emotion
That's what happens in my rough weeks
I will feel blue, frustrated, fatigued
But little passion

Energy is expended upon survival
As the body-mind goes
From one calculated self-care task
To another
There are no energy reserves
To trade for passion

perhaps an autonomic
energy-conservation
strategy

Around December 5th, I began reading Victor Frankl's Man's Search for Meaning. I don't feel like going into the serendipitous events that landed the book in my hands; kind of by accident, yet on purpose.

Frankl shares his observations regarding a person's response to the experience of a concentration camp. He notes three stages:

1) Shock, when the reality hits shortly after arrival at the compound.
2) Apathy, after prisoner-slave life has become the way of life.
3) [I haven't gotten that far in the book yet, but this stage happens after freedom.]

In no way do I know what it's like to live in a concentration camp. I have never known that kind of arduous labor under horrendous circumstances; the humiliation of being stripped of everything, even all the hairs from one's head and body; the stench of death; the famished hunger; the attempted erasure of one's personhood being relegated to a numeral. To list just some of the trauma.

Yet, Frankl's insights can be applied to life outside that concentration camp.

Of the second stage he states:

Apathy, the main symptom of the second phase was a necessary mechanism of self-defense. Reality dimmed and all efforts and all emotions were centered on one task: preserving one's own life and that of the other fellow.

Upon reading that I thought, I get that. Especially during the years when all my focus was on saving my arms and legs. I had to save my limbs. My entire focus was on saving my limbs. 

I thought of what I had written in my poem - that "there are no energy reserves to trade for passion," and that perhaps this is an "autonomic energy-conservation response." Or as Frankl put it,"a mechanism of self-defense."

And, at least in part, I have accomplished saving my limbs. Or my body has. My body and me and my team of doctors and wellness supports. I no longer live each day with the terror of my limbs becoming useless. Yet after living with nerve damage for over six years, I am settled in a kind of apathy. So much focus still goes into the daily task of calculating how much energy a supposed simple activity requires - such as dressing or bathing or going to the store.

My next immediate thought was,  Anyone who's been beaten down by life again and again understands that apathy. You just hang on, and do the next thing to survive.

I asked my self, In my focus of preserving my limbs, and now, of my self-care tasks, does that preserve "the other fellow?" 

I thought of my family and especially my husband who is my main caregiver and helper. I answered my self, Yes. Where I can care for my self does help preserve his energy, his life.

Frankl discusses how he and others found relief from the apathy and from rigors of life by recalling cherished memories of loved ones and feeling the emotions of those times; by the wonderment of nature and a sunset; and by art. I'm still reading about the art. So far the only art mentioned are make-shift cabarets with song and dance and humor. And that may be all there is. No pencils or tools are needed for impromptu live theater.

I too have found relief in cherished memories, nature, and singing. All three gave and continue to give relief, a bit of hope, and beauty. It's something that simply happened over time in learning to manage how to function through muscle and energy and bodily communication-deadening.

Tonight Hubby and Son and I watched part of a Johnny Cash Christmas Special. At the end the singers - which included Johnny Cash, June Carter Cash, Roy Orbison, Roy Clark, Jerry lee Lewis, The Statler Brothers, and some ladies of whom I don't know their names - sang Children Go Where I Send Thee. I said, "I haven't heard that song in forever. It must be a Negro Spiritual."

My mind envisioned slaves singing in the cotton fields as I thought, Oh how those songs must have helped ease that harsh life. Provide an inkling of respite.

I recalled what I'd learned about how in Africa, the drummers drum while workers labor in fields and villages. It's not slave labor, but life labor. Lyrics and dance accompany the songs.

On writing this blog piece I wondered, Is it offensive to use the term Negro Spiritual? Should I use the term African-American Spiritual? 

When I read part of W.E.B. Du Bois' book The Souls of Black Folk published in 1903, I was taken by the word "Negro." It came across as a beautiful and rich word to me. At the time I thought, I wish it hadn't become an offensive term. I looked up the history on the word here. 

And I looked up the song, Children Go Where I Send Thee. It is a Negro Spiritual.

After reading about the famish Frankl and his fellows survived I told myself, I'm going to remember Frankl when I'm tempted to overeat.

But I'm sure that sometimes, maybe lots of times, I'll forget to remember.

Numbly

I wrote a new poem, or as I sometimes say - a "poemish."

Because I'm not quite sure if what I've written can be classified poetry.

I posted it at my poetry blog, here:  Numbly 

Hope-booster: It worked!

Wednesday, 11/29/17

I round the curve on my bicycle as the tires roll on the dirt trail circling Salem Lake. These trees are again my witnesses, like in the summer of 2015 when I felt my muscles getting juice again. But now the trees are almost leafless, going dormant for the winter. But after winter comes spring, and the trees will again be adorned with new life.

Will my body too have new life?

The reality of the news I'd received five hours earlier hits home.

It worked. It fucking worked...

Thankful, hopeful tears roll down my cheeks as I pedal while the breeze brushes my tears. My heart feels the presence of the trees and the woods and the lake and my bicycle, Olivia. My mind recalls the many times I've cried tears of hope since Summer, 2015, as I've rounded this lake on Olivia.

The many serendipitous incidents, that have given me hope-boost flashes throughout the last six-plus years, roll across my mental screen. It's been awhile since I've had a really good shot of hope.

The news hits me again.

I'm no longer being poisoned from within.

Deep breath as I pedal.

I can set a goal for 2018. Get off the epidurals. Once I do that, I can set a goal to get off daily prednisone.

Maybe it's a fantasy goal. I don't care. I've set it as a goal.

~*~

The news?

My chromium and cobalt metal ion levels are now in the NORMAL range, below 2.

That's huge. Huge! The result was expected, but it's still huge for me.

I had had a secret concern. What if they don't come down? That'd mean the new hip is leeching or the source of the metals is from something else.

But now, the proof is in the serum.

There still may be (and probably are) metal stores in my tissues. So I'll keep working to help my body rid those. My body and I did it with the mercury some sixteen years ago. We can do it again.

Great work body!! Keep it up!

Reality and boredom: "cult of continuous stimulation"

Saturday night my husband and I watched part of Ron Howard's documentary "The Beatles: Eight Days a Week - The Touring Years" on PBS. It contains film footage from those years.

I'm intrigued and attracted to vintage film of live events. I'm not sure why. Perhaps it gives me perspective on the way things were and the way things are, and how people differed in their interpretations at the time of what was and how we differ in our interpretations in the present of what is. And what would I have thought and felt had I been present at the past events?

I do recall what I thought when I, as a young child around seven years old, witnessed on TV girls fainting and screaming and the hysteria when the Beatles toured. I thought, "Why do they act like that?" It was foreign to me. My sister is seven years older than I, so she would have been an early teen. I don't recall her going into a frenzy over The Beatles.

Last night, as Hubby and I watched the documentary, I was again fascinated at the crowds' responses to the Beatles' presence. It reminded me of the religious frenzy I eye-witnessed in the Pentecostal and Charismatic movements in the late 1970s and things I've read about religious hysteria from earlier movements. I think of other group "rallies," such as business and political, but people aren't fainting and screaming at those events.

I'm currently reading the book, The Dangerous Case of Donald Trump compiled and edited by Brandy Lee, M.D. One of the main things I'm finding beneficial, maybe more so than how the presented theories relate to Trump, is how those theories relate to my personal experiences with The Way and group-think, with my sociopathic ex-mental health therapist, with my own self deceptions, and with my own coping mechanism of denial which I continue to use in regard to my chronic illness. (Maybe it's not full denial, because I am aware of it. Maybe it's ambiguous denial.)

Just so happened, after watching the documentary, that my next chapter in the book was Trump and the American Collective Psyche, in Part Three: The Trump Effect, contributed by Thomas Singer, M.D. The chapter doesn't focus on Trump's "psychopathology," but rather on "the interface between Trump and the American collective psyche." Or, in my words, how the two (a leader and a group) dance. An interesting chapter after viewing Beatle-mania.

Singer makes some confrontational statements (including to me) regarding one side of America. To me, it's an unhealthy side. And it's not limited to America.

From page 283 (in my book) Singer writes:

What is it about Trump that acts as an irresistible magnet with ferocious attraction or repulsion? Is Trump the end product of our culture of narcissism? Is he what we get and deserve because he epitomizes the god or gods we currently worship in our mindless, consumerist, hyperindulged cult of continuous stimulation and entertainment?

To me, that last sentence describes well what seems so predominant in current modern culture. I too am guilty, though I'm not into consumerism. But it takes conscious, deliberate effort for me to not imbibe in the continuous stimulation of the internet.

Directly after the above paragraph, Singer quotes the following from the book Empire of Illusion written by Christopher Hedges.

An image-based culture communicates through narratives, pictures, and pseudo-dramas. Scandalous affairs, hurricanes, untimely deaths, train wrecks - these events play well on computer screens and television. International diplomacy, labor union negotiations and convoluted bailout packages do not yield exciting personal narratives or stimulating images...Reality is complicated. Reality is boring. We are incapable or unwilling to handle its confusion...We become trapped in the linguistic prison of incessant repetition. We are fed words and phrases like war of terror or pro-life or change, and within these narrow parameters, all complex thought, ambiguity, and self-criticism vanish. (Hedges 2009)

"Trapped in the linguistic prison of incessant repetition." I've been there too often. And I don't agree with Hedges that reality is boring. One's personal experiences (reality) can be stressful and, on the flip side, exhilarating. But I get his gist.

On the flip side to the above, there is the healthy America. The down-to-earth America seen in people going to work everyday (whether paid or not) and caring for their own and others. The beautiful America, seen in everyday generosity to help a fellow human in need. Everyday 'small' kindnesses that never make the news on electronic screens. Though some of these good deeds to go viral online, I have mixed feelings about that too. It can inspire and remind us of the goodness in humanity, or perhaps can promote more unhealthy narcissism; ie: people doing supposed good with the goal of viral online recognition (though I typically don't assign such motive).

I am of the opinion that the internet is like a mirror of who we are as humans. Our good traits and our dark traits have always been in us. Before the internet, we expressed them via venues that weren't so readily accessible. Even though I don't think the internet creates our darker traits, I think it can catalyze them to boil over. Kind of like the immune system. A person may be born with a predisposition toward allergies or other diseases, but those will only manifest under the right environment and stressors.

I've read that the information age of the internet is unprecedented, and my novice opinion agrees. But wouldn't folks have thought similarly of the printing press? To think that something could be typeset and then multiple exact copies could speedily roll out the end of a wheel to be distributed to the masses? Must have baffled their minds.

I often endeavor to recall my life before the internet. Life before 300 channels on the TV. Life when I was a teen. What did I do without internet or 300 channels or accessible constant contact?

I'm not anti-technology. I use it everyday and I'm thankful for all it provides us. I am pro-margin. As humans we need space. Too much information can fill in the margin and squeeze our own creativity and spontaneous thoughts to the thin edges.

We are surrounded by information overload, choice overload, opinion overload. Just one of those can produce fatigue; times three equals over-fatigue. Maybe we need more boredom which can lead to more daydreaming and perhaps more creativity, and less fatigue.

A couple weeks ago someone asked what my Twitter handle is. I told them and added, "But I seldom opine or get in discussions on Twitter. And I'm boring."

#thingsicando

Oftentimes my mind veers in the direction of what I can't do since living with widespread nerve damage.

That's understandable. I'm surrounded with reminders everywhere - on TV, internet, conversations, my eyes witnessing people's limbs and bodies moving at regular paces and not having to concentrate on things like grasping the dollar bills the clerk hands me when I am due money back after a transaction ...

Everywhere, I am reminded.

Except...
...when I ride my bike along rail-trails and greenways.
...or when I drive along country and mountain roads where traffic is sparse and the wheeled tin cans aren't tailing each other at 70 mph. That interstate traffic takes all my focus; wears me out.

And there are the multiple, serendipitous encounters when I'm reminded just how much I can do...
...the man, biking the greenway, who's had a stroke - it's obvious by his slowness and how his legs are awkwardly positioned and how his feet are placed on the pedals, one pointing out and one pointing in, unlike me, who looks "normal" while biking. The elderly man and I talk and share a bit of our stories. Biking is his freedom too. We are both thankful that we are still mobile.
...or a day I went to the mall to walker. With my usual slowness and concentration I get out of my Explorer and get out the walker and set everything up for my mall-walkering. I tell myself, "Good job," as people pass me by walking at their normal paces to go shopping. Shopping wears me out; too much to think about. I'm here to walker, not shop. And then, there appears the mother pushing her 10-year old son in a wheelchair that is leaning back so that her son is in a reclining position. His head droops to one side, his right arm is drawn up and his right hand hand drawn in. Maybe he has cerebral palsy. Mom and Son enter the mall in front of me and take am immediate right into the small post office branch. I think of how much work the mother had to go through to bring her son along on this errand. I think of the day-in-and-day-out toil she expends to care for her son. She probably gets little thanks or acknowledgement. After all, it's been like this since he was born. I don't confirm any of this with the mom who maybe isn't even his mom. But even if she's not, there are moms who live that life. That is love.
...and other such serendipitous encounters, at moments when I'm bemoaning what I can't do or feeling envious and ungrateful, to remind me of how good my life is.

I tell myself how much I have to be grateful for - healthy children, loving husband, clothing, comfortable shelter, food, no significant material needs, not living in a war zone, not housebound, that I can drive, that I'm mobile, and more. But telling myself the facts and feeling grateful are two different things. Ingratitude is magnified when I'm fatigued, which is most of the time these days.

But almost everyday, if not everyday, I acknowledge what I can do compared to what it took a Herculean feat when the nerve damage was at it's worst from Spring, 2013, through Summer, 2015.

Unload the dishwasher. Cut up food. Lift a glass. Unscrew a lid. Comb my hair. Use a towel to dry off instead of air-drying. Roll over in bed. Dress. Press buttons or flip switches. Walk a dog (except since surgery in 2016). Scoop kitty litter. Anything that involves lifting my legs or arms, or reaching.

When I perform those type tasks now, I often say to my self in a cheerful, job-well-done tone, "You did that!"

I have a personal Twitter account. In a couple recent tweets I've used the hashtag #thingsicando. I like that. I've only used it twice. Once about a biking excursion. Another about walkering across the mile-high, swinging (though it barely swings), foot bridge on Grandfather Mountain. I visited Grandfather on Monday, 11/20/17. A grand day it was...

this side of the bridge

mile-high swinging bridge

marker on bridge

that side of the bridge

looking southwest(?) from bridge

descent from the top

sunset

had to stop and eat here, due to the name

Wanting to believe...

The trauma I experienced at the hands of John Knapp ran, and still runs, deep.

Some may wonder, Why ain't she over that yet?  If so, they'll have to keep wondering.

It was beyond difficult for me to wrap my head around Knapp's lies and manipulations. The experience silenced me and caused me to doubt my reality. It was similar to leaving behind a belief system on which a person based their reality. 

When Trump was elected, it stirred up the Knapp-trauma. Why? Because of the similarities in the way Knapp and Trump manipulate, traits that are standard for antisocial and extreme narcissistic personality disorders. Traits that are standard for sociopathic/psychopathic personalities. 

I am not alone in my response. I've read and heard of multiple accounts of others who experienced sociopathic trauma in the past who have had a similar response as I to Trump. So maybe it's a normal response to an abnormal situation.

Prior to Knapp's harm, even while coming to terms with abuses and lies of top leaders in The Way, I believed that people were born on a level playing field in regard to morality. That each person is born with a sinful nature but also with a hunger for God and goodness. That, if in an evil-doer's shoes and similar circumstances (birth, family of origin, genetic package, culture, etc.), I may have fared no better. That there but for the grace of God, go I. That I am not inherently better than those who manipulate others as pawns in a game to promote the manipulator's appearance and advantage. I would recall my own sins, considering my own hypocrisy, to try and help balance my own "righteous" judgment (or misjudgment) toward those who were, or at least appeared to be, chronic abusers and evil-doers.

But maybe my judgement didn't need balancing? Maybe it needed to recognize evil for what it is and that some people are incapable of behaving otherwise. Perhaps they cannot change. Easy enough, right?

A couple days ago I was pondering all this (along with other life experiences and the many sexual abuse/harassment allegations in recent news), when I recalled a poem I'd written in 2007 while I was studying different scriptural interpretations outside of Way doctrine, at the time wanting to maintain my belief in a personal God of "unconditional love" that aligned with biblical scripture. In my quest I learned about Christian Universalism and landed in that camp for awhile. When I wrote the poem I had Hitler in mind, from a Christian Universalist perspective.

As of this writing I no longer subscribe to biblical beliefs, but if I were to again enter that realm I would lean toward Christian Universalism. 

Every person has had at least one person that loved them.

At least, I want to believe that is the case.

~*~

Will There Be?

Every individual
that ever drew a breath
had someone who loved them.

No matter the committed crime,
no matter any grave atrocity,
no matter which unpardonable sin...
someone, somewhere
loved her, loved him.

As naive as it may be
as childish as it seems
my great hope is
that somehow, someway
even the heinous soul
shall one day be redeemed.

Will there be an hour
with every soul united
to a mother's love?

Will there be a time
with every soul united
to a father's hope?

Whether right or wrong,
I want to believe 'tis so.
For now I'll continue to dream;
for now I'll continue to hope.


september 16, 2oo7


Inspired by Tom Talbott, specifically some of his thoughts regarding Hitler.

~*~

Another shooting. But it was California, not Texas, Mr. President....

Another shooting. Last I read, at least five dead including the gunman. At least ten injured. The weapon of choice, or at least one of the weapons? Semi-automatic rifle. A spraying of bullets hitting whatever they came in contact with, including an elementary school.

When is enough enough to outlaw these combat tools? If we outlaw them, is there anyway to confiscate what's out there? What about responsible gun owners who have already legally purchased these weapons of broad destruction? Should there be an exception made for those individuals? If so, shouldn't there be something like a yearly license renewal with some sort of ongoing vetting? I imagine those type questions have been tossed around in the gun debate.(I read later, on 11/16, that the California gunman built his own weapons of rapid destruction. Still doesn't change my mind that they should be banned.)

Early this morning, around 6:30 AM, I checked Trump's tweets. And I read this: "“May God be with the people of Sutherland Springs, Texas. The FBI and Law Enforcement has arrived.” He tweeted it at 11:34 PM on November 14.

My response was big eyes, a mouth drop, and "oh my god." Followed by, "Why has no one in the White House caught this and had him apologize and correct his mistake?"

I could hear Trump's defenders in my head, "Well, he's tired. He's been on the long tour in Asia and just got back. And he's 70 years old. It was just a simple error."

That's all fine and dandy. But, he never apologized and corrected his error, or at least hasn't as of when I'm writing this blog piece. The tweet was deleted sometime after 6:30ish AM. (I later learned it was deleted around 8:30 AM, nine hours after it was posted.) He has, as of this writing, not tweeted about the California shooting. Crickets.

The other Trump-defender response I hear in my head is the standard or a rendition of, "What about Hillary?" An asinine response, in my opinion. She's a different subject. Trump is responsible for Trump. Hillary is responsible for Hillary. And she ain't the president. She's currently not serving in any political office. That doesn't excuse any wrong doings of her past. If those need to be investigated (some of them, again), so be it. And let the chips land where they will. But that what-about-Hillary type response is a deflection.

Trump has also tweeted about his wonderful trip to Asia (multiple times), the fake news, polls that show his approval rating is going up, and he tweeted this at 10:11 this morning: "Do you think the three UCLA Basketball Players will say thank you President Trump? They were headed for 10 years in jail!" He's referring to this: 3 UCLA basketball players, accused of shoplifting, back home from China

WTF? But it's typical Trump, displaying his full blown ultra-narcissistic, feed me-feed me, disordered mentality.

Would most decent people do that? They do a good deed and then manipulate to get a thank you?

Trump is all about Trump, even when he lends a helping hand.

I have tried to see good in the man. The only thing I have come up with is that he appears to take care of his family.

Gadget Neanderthals

"Bored."
It's not a word I use regularly.
It was seldom used when I grew up.
It was seldom heard with my children as they grew up.

I did a lot of things wrong in raising my children. How does one measure "a lot?" Maybe it wasn't "a lot." Maybe a better quantity would be "enough" or "plenty." Plenty enough for them to know I am human and make mistakes. Plenty enough for them to learn about family dynamics and the genetics that are in their packages. Plenty enough to learn what not to do and what to do, if they ever decide to rear children.

I've never been a technology buff. Through the 90s and early aughts, I often said, "I'll never have a cell phone." I didn't like the idea of accessible constant contact.

Of course I ate those words. I bought my first cell phone, a flip phone, in 2005. And that only because I was giving a go with a network marketing business, and I needed a cell phone in order to be successful. My children and husband got their first flip cell phones either at that time, or within a year.

I didn't buy a smartphone until 2011. Again, because of work - a pet sitting/dog walking business. I needed to be able to text easily, quickly look up directions between stops, and access email on the go. My children probably got their first smartphones within a year. My daughter would have been 23 and my son 21. My daughter, son, and I upgraded our smart phones twice since our original purchases. Hubby got his first smart phone this past summer, 2017; he upgraded from a flip phone.

We sound like Neanderthals!

When our children were growing up, we had one computer in the home. We all shared that computer. I got my first laptop in 2008. My daughter got her first one around 2008 maybe. My son, I don't know; he may have waited until 2010.  Hubby didn't get one until around 2015.

Hubby, Son, and I still have those same laptops. We haven't bought new ones. My daughter may have bought one new one since her original used laptop purchase around 2008ish.

Hubby, Son, nor I own tablets or iPads (are those the same thing?). I'm not sure about my daughter.

When the kids were growing up and we would go on car trips - whether errand running or to the mountains or somewhere farther - as a general rule, I didn't allow them, or their friends, to wear head phones hooked into one of those portable CD  or cassette players.

Why would I have that as a rule? Because I had a real problem with the children being cut off from their present surroundings and the "boredom" of the drive.

We would listen, together over the vehicle speakers, to music or stories/books on tape. We'd sometimes sing songs. We would play license plate games or make-up stories (in a round) based on road signs, surroundings, and cities and towns we were passing. We would talk, or just sit quietly watching the scene speed by, daydreaming. And, of course there were arguments, and sometimes my son would pick on my daughter.

But we were present with each other in the moment.

One of my concerns with constant, virtual contact that technology provides, especially when it comes to child development, is the absence of presence. And the absence of "boredom" and daydreaming and imagining. Just a click away with access 24/7, one can escape into a 2-D screen with little to no awareness of their 3-D environment. I have other concerns too.

I asked my self this morning, "If you had young children now, at what point would you buy them a smart phone?" I'm not sure. But I think I'd have them wait until they were at least 12. They could have a flip phone though. I realize they'd probably need a laptop for school before they turned 12. But I'd hold off as long as I could for that too.

At least, that's what I think I'd do. But, I can't say for sure.

And of course we'd have the tech talk, just like the sex talk. Multiple times.

Replacing our electronic devices brings to mind Gadget Mountain. More pollution, as we "upgrade."

~*~

I read about Gadget Mountain a few years ago. I googled it this morning, but couldn't locate the photo or articles from what I read back then. But two articles came up that look interesting. I've only perused them. I'll read them later.

1) From Associated Press, January, 2017: The astonishing 'gadget mountains' of Asia: UN warns of impending health and environmental disaster due to dumped technology

2) From The Atlantic, September, 2016: The Global Cost of Electronic Waste

~*~

Meandering...

Salem Creek Greenway is the approach to Salem Lake Trail. It is asphalt, wide enough for a pick up truck to drive. But the only motorized vehicles allowed are service vehicles. That's true for all Greenways, everywhere in the USA.

I am a Greenway lover. Tax dollars well spent for the health and wellness of the community. Nestled in nature in the middle of the city. A respite from a florescent, gadgeted life. An environmental buffer to help insects, plants, birds and critters flourish in the midst of urban America.

The first Greenway I ever experienced was when I lived in Cleveland, Ohio, in 1982-83. Seems it stretched for over 100 miles out into the county and back into the city. But that probably included some off trail connectors via regular roadways.

When our family lived in Charlotte in 1997, my escape was McAlpine Park located about a mile from our home. McApline was a few hundred acres big with enough Greenway and trails and space to get away from the city while in the city.

I didn't like living in Charlotte. I'd say it's the least favorite big city I've lived in. I've lived in three: Milwaukee, Cleveland, and Charlotte.

Charlotte felt stuffy, kind of conceited. But I did like my part-time job there. I worked at Discovery Place as an educational presenter in the rain forest and marine areas. I handled reptiles, hissing cock roaches, and sea critters.

I also hosted birthday parties. One of the main party features was Checkers, the corn snake, who would wrap himself around my arm and sometimes put his head in my pocket.

After we moved from Charlotte to Greensboro in 1998, I continued working at Discovery Place, but in a different position. The drive was almost two hours so I wasn't going to drive that far to work a few hours. Instead, I was offered a position as an on-site Camp-in director. In that position, I worked an 18-to-20-hour shift, which included sleep - as well as one can sleep on the floor of a museum with up to 400 other people. I'd drive in on Friday afternoon and work through Saturday late morning, and sometimes through Sunday late morning. So I could get up to 40-hours work over a weekend. It was worth the drive.

It was a fun job. Never a dull moment. We had a skeleton staff so stayed busy, and we were tight. Such a great crew it was. My daughter accompanied me on many occasions. She worked as a volunteer Sci-teen. We knew every nook and cranny of that museum. Well, except for the projector room in the IMAX.

Camp-ins were eliminated in 2001(?). I can't remember the exact date, and I don't know why the program got axed. I guess it was money.

Well, I hadn't planned to write about that. I was gonna write about Salem Creek Greenway and add some pics. Later, maybe.

Massacre

The Sutherland Springs, Texas, massacre happened yesterday. Not sure if "massacre" is technically the right term, but I think it fits.

The definition for massacre is to violently kill a large number of people. It's a slaughter. How many people constitute a large number? If I recall correctly, four people and above constitutes a mass shooting in the USA.

From what I've read, a mass murder or shooting is only terrorism if the motive is political. I really don't care what one calls it. Regardless of the motive, the outcome is the same.

This morning I looked up how to buy a gun in the USA. There is a national standard application form which takes a matter of minutes to fill out and a few minutes to approve via computer, if the person passes the muster. Depending on where and how one buys a gun, the application may not be required.

A few fucking minutes for approval. It took Paddock what...fifteen minutes to produce his carnage in Las Vegas? It took I don't know how many minutes for Devin Patrick Kelley.

If I understand correctly, there isn't a national registration procedure for tracking the number of weapons and ammunition a person purchases, at least across state lines. A crazed person can amass an arsenal in a short amount of time, like Steve Paddock did.

These mass shootings that kill a large number of people are carried out with weapons that can shoot many rounds in quick succession. Or, in Paddock's case, again if I recall correctly, he adapted his weapons to shoot rapidly.

Why oh why does someone need these rapid-fire rifles? Though I lean toward outlawing them for civilians, which probably won't happen, it seems that at least laws could be enacted to vet buyers better. Make sales more strict. And track a purchaser's number of guns and ammunition purchased. And a two-week (or something) wait time wouldn't be a bad idea.

Is that too much government interference? When will it not be too much? At what point is too much, too much?

With stricter laws would the bad guys still get their hands on these killing machines? Yes, some would. But maybe allowing a period of time before a person can get their fingers on the triggers will allow space to catch them before they exact their terror and carnage.

I think of it like door locks. Will a burglar still find a way in if he really wants in? Yes, probably so. But it takes longer with a lock. In that time space, the burglar might get caught or at least scared away.

Like the rest of the US, I'm beyond fed up with these killings. I'm also fed up with the hypocritical standard "thoughts and prayers and condolences" from the powers that be who then do not seriously consider and pass legislation to help and try to curb this horrific trend.

I watched Trump's speech in response to the Texas slaughter. No emotion. He could at least have shown a hint of sadness or outrage. But then again, he's probably not capable, at least with empathy

Some might say, "Well, he shouldn't show emotion because he needs to show strength for the nation."

So showing emotions is the opposite of strength?  I disagree.

However Trump did display outrage (at least via his Tweets) with the NYC car killer, an Islamic extremist, who killed at least eight people last week. What about Vegas? What about Texas? Where is the outrage?

And what about Puerto Rico? When I watched his response to that tragic natural disaster, it was like watching a person void of heart.

~*~

On 11/07 I posted the following as a response comment on this blog entry.

I know hardly anything about guns. And I'm not up to speed on the gun debate. But these rifles that can fire off hundreds of rounds per minute...it just makes no sense to me that they are legal.

And yes, I realize that criminals will get their hands on them illegally. That's what criminals do.

I wonder how many of these mass murderers bought their killing machines legally or illegally?
I wonder how many resources the FBI, etc, has to keep watch on illegal fire arm sales?
I wonder how often they intercept and catch illegal dealers?

I did read this morning [11/07] that, at least in some states, there is a wait time to buy guns like AK-47s which can fire 600(!) rounds per minute.

I read that Kelley fired at least 450 rounds and had 15 clips. 450 rounds! I just don't get why these killing machines are legal. What purpose do they serve other than combat?

I read this article later in the morning on 11/07: What Explains U.S. Mass Shootings? International Comparisons Suggest an Answer

I read this article in the evening on 11/07: Gun Rights: Former U.S. Serviceman Calls for Ban on Semi-automatic Weapons

Breathing denial

I'm irritable and I'm tired.
The two go hand-in-hand.
"Wearied" is probably a better description than "tired."

I'm tired of the continual battle for my body and mind to function "normally."

I'm tired of not being able to set long-term goals.
Well, I could set them.
But then I set myself up for disappointment and feelings of failure.
Not a healthy place for me.
So I set short-term goals of daily simple tasks that most would not think of as "goals."

I'm tired of living in this incessant hamster wheel.
Yet reminding myself to be thankful for all the good I have.

I'm tired of my home being in disarray.
Of not being able to organize so very much that needs attention.
Of not being able to do household chores.
Of not... on and on.

My tired-of list could go on.
It's a lengthy one.
All those tireds added together equal weary.

Why do I find it so hard to accept my disability?
I know why, at least some of the reasons.
One of the biggest is probably just plain, old denial.

~*~

I hang on with a thread of hope that someday I can backpack again.

I envision the trail.
I feel the struggle to hike with forty pounds on my back, a good struggle, a struggle with reward at the end.
The reward of accomplishment.
I set up my tent and make my supper.
I hang my food bag in a limb high enough to be away from bears.
I sit, a lone human on a log, and think about the eyes that see me, eyes of forest critters.

And then I remind myself,

There's no way you'll ever be able to backpack again. Right now you envision that hope because you feel relief from your epidural. Because you are comfortable, at the moment, driving, nestled within the Blue Ridge Mountains. But you know damn well this relief is temporary. You know what awaits as the relief subsides. Even with the current relief, the reality of your disability will be evident today once you stop and get out of the vehicle.

And then I remember the eighteen years I suffered with severe asthma.
The years I suffered with sinus polyps and complete blockage; literally.
I could not breathe through my nose, for years.
And I had no sense of smell for over a decade.
There were lots of other symptoms too, which subsided in the following years after the asthma and polyps retreated.

And I tell myself,

In those days you envisioned yourself as a deer, able to run. Envisioning, even as you wheezed, gasping for air. And, eventually, you got well from all those symptoms. Some might say it's a miracle that you gained wellness. Not to mention that you were able to get your high levels of mercury down and able to get off long-term steroids. 

But it wasn't a miracle.
It was hard damn work, involving study, various medical and wellness approaches, soul searching, lots of journaling, endurance, science, a good integrative medical doctor, and more.

And I say to myself,

But you had youth on your side then. You got sick at 22. You were 39 when you suffered your last series of asthma attacks and your last hospitalization for asthma. You're now less than 2 years shy of 60. And you've added lots of wear and tear in the last seven years, probably accelerating the aging process. 

And I counter with,

When you got your high mercury levels down, the asthma abated. Maybe, maybe as you get your cobalt and chromium levels down, nerve damage will abate. But it will probably take years to gain back the muscle you've lost, if you can regain it. You don't have youth on your side now. 

~*~

Yes, there is denial.
Along with a dose of hopeful reality.

I'll probably breathe denial until my last breath, when I'll exhale the hopeful reality.

I wonder,

Is one's last breath an inhale, or an exhale?

I wrote a poem...

I posted it on my poetry blog, here: Tunnels.

At the time I penned the poem I was going through my "rougher" days that are typical before my routine neck injections or epidurals. I say "rougher" because most of my days are pretty rough compared to the average life of a relatively healthy 58-year old.

Does that make me sound like a "victim?"
Well so what.
I really don't care.

If I had cameras set up around my house I think folks would be astounded at the struggle it's been to live with widespread nerve damage.

There were a couple years where I literally couldn't lift my arms to comb my hair, except when I'd get relief for a few weeks after my epidurals and a couple weeks after my neck shots. Even then, I was limited and had to calculate my moves so as not to exasperate my biceps causing them to become more lame.

So how did I comb my hair? I would take my left arm and hand and place it under my right elbow. Using my left arm I'd lift my right arm and prop my right elbow on the bathroom counter. I'd bend at my waist and lean right to get low enough to prop my right elbow. Then I'd lean my head over to the right and clumsily comb my hair on the right side of my head. I'd then repeat similar (but with a slightly different procedure) for the left side.

And that was just combing my damn hair. Imagine all the other tasks one does in a day - bathing, dressing, feeding oneself, drinking from a glass (I always had to use a straw), etc. But, I could drive because there was no lifting involved. I could care for pets because, typically, minimal lifting was involved.

I could go on about more limitations, inabilities, and symptoms and how I barely managed the dysfunction in my legs, feet, ankles, fingers, hands, wrists, arms, neck, back, jaws, and swallowing - the pain, heaviness, weakness, slowness, tingling, numbness, bizarre sensations, lumps, fatigue, dizziness, brain-fog, gut issues, migraines, and blah, blah, blah. Not to mention the emotional turmoil.

Does that again make me sound like a victim?
Or that I think my suffering is unique among mammals?
If so, again, I really don't care.

Even though steroids (especially the injections) have provided significant temporary relief, lasting improvement didn't begin until after I added Charlotte's Web Hemp Extract to my daily regimen. That improvement has happened incrementally and plateaued at times, but it has been significant in comparison with the terrifying (and it was terrifying) direction I was headed prior to the Charlotte's Web.

I am well aware that others have it worse than I.
I helped care for my quadriplegic father for almost thirteen years.
Nerve damage doesn't get much worse than that.

~*~

Anyway, I wrote Tunnels on Monday, October 30th. I received my routine neck shots late that afternoon and got some relief by Monday night and into Tuesday. I was down again on Wednesday.

At my appointment on Monday, the neurologist and I discussed trying a new pattern with my daily maintenance prednisone to see if that will help with the almost constant fatigue and weakness since my August 30, 2016, revision hip replacement surgery [to replace my faulty hip implant that was leeching cobalt and chromium (which can contribute and even cause nerve damage)]. So I started that new prednisone pattern on Thursday, November 2nd. We'll see how it works for the long run in the coming weeks.

I realized in some recent communication with a good friend, that some folks may not realize that my neck shots are not for my neck, specifically. The steroid neck shots work systemically, similar to the steroid lumbar epidurals. But the neck shots don't work as deeply and don't last as long as the epidurals. [My nerve roots are swollen in my spinal lumbar and cervical (neck) regions causing symptoms in my upper and lower body, and in between. Because the nerve root inflammation is at my neck and lumbar regions, those are the points where I get my injections.]

The neurologist added the neck shots at some point after I began receiving epidurals in December, 2013. I would receive my neck injections the same day as my lumbar epidural. Then, later within a year or so, we added neck shots at the half-way point between my every twelve-week epidurals. We added the half-way neck shots to provide a steroid boost so I wouldn't have to increase my daily prednisone milligram dosage as high or for as long between epidurals. Since steroid injections have less side effects than oral steroids, the thinking is I can maybe hold at bay some of the prednisone side effects.

Since epidurals give more relief than the neck injections, why not just get another epidural at the half-way point? Because medical protocol/insurance only allows epidurals every twelve weeks, which is probably a good thing. I doubt puncturing the outer layer of the spinal cord every six weeks is good for a body. Not that every twelve weeks is "healthy" either, but it keeps me mobile.

My hands, neck, arms, jaws, widespread pain, and dizziness have improved since my August, 2016, surgery indicating that metal levels are coming down and that they may be playing a role in contributing to the nerve damage. The levels will be checked at the end of November. Then we'll know how much they have decreased since explanting the defective hip implant and replacing it with a (supposedly and hopefully) non-faulty one.

Maybe that's too much information.
I know it's repetitive of what I've already written about so many times.
But perhaps the few details above provide another glimpse in living with and managing polyradiculitis and widespread nerve damage, for any readers interested in such.

And to some, maybe it sounds like I'm stuck in a type of victimhood.
But I really don't care, at this point.
I get tired of bottling it up.
I get tired of trying to put my best foot forward.

My next epidural is December 11. It will be my 19th epidural since December, 2013.

To post or not to post...

authentic writing workshop, 10/25/17
non-subject: storm brewing

~*~
I'm tired. A thousand things come into my head to write about. Not really a thousand, but a shitload.
~*~

Between October 14th and October 21st I wrote three different blog posts about Trump. Even though it was only one week's time, it felt longer - I think because of my struggle with whether or not to voice more Trump thoughts on my blog, how much to voice, and trying to put into coherent words many of the thoughts that had been scrambling around in my head.

On October 14th I wrote a piece entitled Demand for purity. I went into detail about my thoughts regarding the recent controversy of the State trying to coerce private business into requiring employees to express loyalty to the State anthem and flag. Such coercion brings to mind a "demand for purity." As my manner is, and not that I like it, I ended up over-explaining the dialog in my head.

In that same piece I wrote about Trump's assertion that mainstream media is the "enemy of the people." I consider his continued ravings against the news media as an attempt at information control. I pondered how Trump's information control compares to that of previous administrations. I mentioned Trump's narcissism and pondered how it compares with other presidents. I pondered why Trump causes me so much angst.

At the end of the piece I listed Dr. Robert J. Lifton's theory of the Eight Criteria for Thought Reform. "Demand for purity" and "control of information" are part of his eight criteria. Lifton is a psychiatrist who, among other things, studied the effects of thought reform on POWs from the Korean war. I first read some of Lifton's works after I left The Way and began educating myself about cults, group-think, brainwashing, coercive persuasion, et al.

I didn't post the October 14th piece.

On October 18th I wrote another blog-post-that-never-became-a-blog-post. In this second piece I describe what I wrote about in the first blog-post-that-never-became-a-blog-post, condensing the subjects into a few paragraphs.

I wrote a bit more about Trump as a sociopath. I included links to symptoms of narcissistic personality disorder and antisocial personality disorder - the disorders associated with psychopathy and sociopathy, subjects which I read about in depth after my bizarre Knapp experience as I endeavored to wrap my head around what had happened. The only plausible explanation I came up with was a personality disorder or sociopathy or psychopathy, which also explains behaviors of certain top leaders in The Way. Trump displays the same traits. In the piece I stated that if it walks like a duck, looks like a duck, and acts like a duck, it probably is a duck. I entitled the piece, Donald Duck.

But, I never posted the October 18th piece.

On October 21st I wrote a third piece spring-boarding off my second blog-post-that-never-became-a-blog-post. But this time, I threw off the psychology experts. I wanted to write my own words, my own descriptions, what I've learned from my personal experience.  I entitled the piece Abnormal normals.

At first I didn't post the piece. What difference would it make? Would I feel I'm just hollering into a well? My blog is not on search engines, and it gets read by very few. How vulnerable would I feel after posting it? Would I feel self-conscious for four or five days? What if some people do read and comment and I feel I have to defend my opinion and position?  Should I just keep my mouth shut? By keeping quiet, am I allowing the silencing girth to bind me?

Such were some of the contemplations rolling through my head.

On October 22nd I ended up in a conversation discussing my quandary. The listener gave me more to ponder. As a result of that conversation and the more-pondering, I put a few more edits on the 3rd piece and posted it the morning of October 23rd. But I left the published-post-date as October 21st, since that was when I wrote the piece.

To my surprise, instead of feeling vulnerable and self-conscious, I felt lighter. I wondered, Maybe it's not such a bad thing to dump my Trump thoughts every so often on my blog.

The self-consciousness and self-doubt did raise their heads the next day. But not too loudly or harshly.

I wonder why posting has a more burden-lightening effect than keeping my thoughts private in a journal? Perhaps it has something to do with the silencing factor.

After leaving The Way, where I had lived silence for so long, a friend said to me, "The silence has been deafening, no?"

~*~
In the October 21st piece I state, "In my experience, sociopaths are mercurial creatures..."

Three days later on October 24th, Senator Jeff Flake addressed the Senate stating he would not run for re-election and why, expressing his concerns and misgivings about the current administration. Flake used that same word, "mercurial," in one of his statements addressing Trump's behavior, specifically Trump's tweets and their consequences. Flake stated, "The notion that we should say or do nothing in the face of such mercurial behavior is ahistoric and, I believe, profoundly misguided."

His use of that same word arrested my attention and caused me to pause, yet again...

~*~

Abnormal normals

In perusing things I've posted about Trump on my blog, I'm reminded that my opinion of the madman hasn't changed. I mostly think he is an outright sociopath, incapable of empathy or feeling remorse. At the very least, he is an extreme narcissist.

I hesitate to give the madman more attention on my blog. It feels as if mentioning his name feeds his narcissistic supply in some ethereal sphere and like I am playing into his game to agitate and irritate and incite outrage. And I do feel those things.

I recently read an article that posed the question, "Remember life before Trump's tweets?" I chuckled, but only for a moment. The man takes up too much space in my head. I don't like that. It's kind of like living with an invisible, chronic illness - not readily seen by others but always present reminding the one who is ill of his or her new "abnormal normals."

Too often, as I go about my abnormal-normal day, I wonder...

How can I allow myself to feel that things are "normal" with this madman at the helm of our country? I feel like I'm pretending as I go about my life as if all this shit in the air doesn't bother me. Add to that the string of recent tragedies, still in emergency or recovery mode. I have a home and fresh water and food and income, and my family is safe. I feel a tinge of guilt, if that's the right word, because my needs are met.

You've felt this before at times of tragedy, upheaval, death. This feeling that once trauma happens it seems forgotten in a matter of days or weeks, though it's not forgotten. People have to keep living through the aftermath. Survivors have to keep moving, even as they process and grieve. 

But this Trump shit, it's like there is no end to it. There is aftermath after aftermath. Almost every day I wonder, "What damage will he inflict today, and on whom?"

To help ground myself, I tell myself...

Drop it. [and then note whatever I'm doing at the moment, such as...] Woman sitting, playing with dog.

I take in a deep breath, hold it momentarily, exhale, and pause...

I am in the place where I am at this moment in front of me. Things may not be "normal," but all I can do is continue doing what I am supposed to do as best I can - care for myself, my family, my neighbor, the environment. All I can do is what I can do. Be kind...be kind.

~*~

I limit my reading of Trump. Take intentional breaks. But I still read him and occasionally watch his speeches or self-inflated hoopla at his campaign rallies. Why? Partly because I care and am concerned; I don't want to bury my head in the sand. Partly because of my continued journey in understanding my own experience with cults and narcissists and sociopaths. I'm sure there are more "partlies," but I'll stop with those two.

I think what bothers me more than the madman himself is when his supporters rationalize his lies and bully-behavior, thereby normalizing that which isn't normal for the office of the president. I lived this normalizing-the-abnormal in The Way, especially under Martindale's tenure from 1982 through 2000. I experienced it on a more personal level with John Knapp. And I see the same pattern with Trump and those who try to explain away or reinterpret his flagrant lies, name calling, one-upmanship, disregard for norms of the office, belittling, blaming victims, claiming to be a victim, having to win, being unable to take criticism, and more.

In my experience, sociopaths are mercurial creatures; they wear masks according to whichever game they are playing at a given moment. Of course, all humans wear masks to some degree, such as in private-versus-public life. There are certain standards in society that we endeavor to live by, and rightly so. Those standards can vary according to the culture and the times.

But the sociopath's masks are worn always for their own gain regardless of the expense to others. To them, life is all about winning. As long as they come out on top or appear to come out on top, that's all that really matters. Their masks can crack with enough pressure. Pressure from when their cover stories are proven false again and again or when enough loyal believers defect. The sociopath's paranoia can become more dominant causing a fissure in the mask. If they don't repair the fissure, it can grow. But even if their mask cracks, they won't genuinely admit they were wrong. Instead, they remake themselves, from what I've seen, first into some sort of victim and then into another role, or continuing their same role after some whitewash, in order to feed their narcissistic supply.

I'm hoping Trump's mask cracks. But, he's 70 years old and has played his games for a long time.

I will not dismiss my flags regarding Trump.
My Trump flags are not red, white, and blue.
They are mostly red, and sometimes yellow...casting shadows.

Round #19...

It's time to type my rally sheet for this round.
So I typed it this morning.

The main thing on my mind was (again) focus on self-care.
That I am under no obligation to meet anyone else's standards of what they might think I should do in order to help myself.
That if I feel I need to explain or apologize; I don't need to.
But I know I will apologize sometimes.
I am sorry I can't do what I used to do - like be there for a friend in need ... or do the laundry.

Sometimes - in feeling pressure of societal or perceived or self-imposed shoulds, or feeling I need to meet standards I used to live, or imagining what others might think of me in regard to my limitations - I find myself putting my own well-being second or third, which I am unable to do for very long.
My psyche and body make it very clear, Your wholeness comes first. Recalibrate.
I'm reminded of airplane safety: Put on your own oxygen mask first.

After I typed my rally sheet this morning, an article came across my Twitter feed: As I get older I have learned...
The article helped validate what I had just typed on my rally sheet.
The author puts into words some of the feelings and thoughts I've gone through (again) the last week or so - thoughts that were up front and center as I typed this round's rally.
I think anyone who has lived enough can relate to the five lessons listed in the article, regardless of whether or not they live with chronic health issues.

This round's rally is below.

~*~

September 18, 2017, thru December 11, 2017

My new normal after epidural...
One goodish day, then one to two recovery days.
Plan for it.
This may be as well as I get.

Keep in mind the progress I have made.
Keep in mind what I can still do.
I am still mobile. That is HUGE.
I have work that I can perform part time.
It provides purpose and income.

I am committed to self-care and emotional wellness.
That is my main commitment.
Nothing else takes priority.
With self-care I am caring for others.

I do not have to explain to anyone my lack of commitment to activities/tasks outside of self-care.
Even if I weren't sick, there is no need to explain.
I have done nothing wrong by being sick.
I do not need to apologize, though I'm sure I will. 

Remember moods, life, circumstances are like the weather.
Weather is always changing.
"It's wind man. It blows all over the place."

May I be peaceful.
May I have ease of well being.
May I be present.
May I embrace 10,000 sorrows and 10,000 joys.

Countdown:
Week 1: Completed M, 8/25/17
Week 2: Completed M, 10/02/17
Week 3: Completed M, 10/09/17
Week 4: Completed M, 10/16/17

Week 5: Completed M, 10/23/17  (BONIVA on Sa, 10/28/17)
Week 6: Completed M, 10/30/17 (neck shots M, 10/30/17)
Week 7: Completed M, 11/06/17
Week 8: Completed M, 11/13/17

Week 9: Completed M, 11/20/17
Week 10: Completed M, 11/27/17
Week 11: Completed M, 12/04/17
Week 12: Epidural #19 M, 12/11/17

Carol Welch, CEO ~cyclist. explorer. overcomer.

~*~

I type a rally sheet every 12 weeks and magnet it to my fridge.
The sheet is a count-down between my every 12-week epidurals,
I check off the weeks as they go by.
Each rally sheet is a bit different and is based on my most prominent symptoms at the time and coping reminders to help maneuver the weeks ahead.

Beyond words...

I live with polyradiculitis, a rare form of peripheral neuropathy where multiple nerve roots are swollen at the spinal cord. In my case, nerve roots are swollen in my lumbar and cervical regions.

The condition of polyradiculitis is usually associated with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Guillain-Barré Syndrome (GBS). My symptoms are the same as found in CIDP and GBS, but I have neither of those diseases. I developed polyradiculitis in April, 2011, after taking oral terbinafine (brand name, Lamisil) for 5 weeks for toenail fungus. However, it wasn't diagnosed properly until May, 2013. In June, 2016, we discovered that an artificial hip implant, which I'd received in 2008, had been leaching cobalt and chromium into my body. Heavy metals can be a factor in nerve damage. Psychological trauma was also a factor in the onset in April, 2011. 

I've written quite a bit about living the hell of polyradiculitis. And there have been years of hell. It was downright scary as my symptoms worsened and spread. They are no longer spreading, and I had some slow, incremental improvement after adding Charlotte's Web Hemp Extract in June, 2015, to my daily regimen. (But then plateaued. After that, we discovered the metal-leach.) I've had more improvement since getting the leaching implant removed and replaced in 2016. But even with improvement, I still receive lumbar steroid epidurals every 12 weeks and cervical spine steroid trigger-point injections every 12 weeks, flipflopping with the epidurals.

Through the years as symptoms progressively worsened, I was forced to back away from "normal" life. I now have new "normals."

One of those new normals is that, due to limited energy, I am seldom able to socialize, online or offline, accept with Hubby and sometimes our adult children. I have three long-distance friends with whom I visit regularly via telephone. (I had four but one died a couple months ago. I miss Linda.)

At times I've felt like a foreigner when I have been with people or even in conversations online or on the phone. The things most people do in every day life are no longer a routine part of my life. Shopping. Traveling. Cleaning house. Yard work. Cooking. Laundry. Going to work. Going to concerts or theater or out with people in a group. Spending hours or days visiting with family and friends. Overnight travel trips, even if just for a weekend. (Though I have taken a few trips, as long a Hubby is along. And I did take one solo overnight trip to the mountains last summer. That was a really big deal for me. I've not been able to do that since.)

There have been times I've felt deeply isolated. I've learned to manage those times, for the most part.

Isolation visits when I don't feel connected - when my fatigue and weakness are so overwhelming that simply waking up, standing, and making my way down the hall exhausts me.

Hours feel like days. Days feel like weeks. At those times, I tell myself, This is the pattern. It's your normal. Time will feel like its moving at a sloth's pace. That's a distortion. Look at the calendar and your notes to remind your self that the speed of time hasn't changed; your realty has. This reality will pass, and you will again feel connected.

Isolation visits most when I'm unable to ride my bike through the woods. As long as I can bicycle the woods - the place I feel most connected with life, where I feel a sense of purpose, where I feel confidence, where I feel an integral part of a "community," where I fit in - the feelings of isolation (along with feelings of worthlessness and pointlessness) do not exist or are, at least, minimized.

Used to be when I lived with almost constant widespread pain, cycling the woods relieved the pain, temporarily. My widespread pain symptoms (especially in my neck, jaws, and arms) have improved since my surgery in August, 2016 - a revision lateral hip replacement to replace the defective, leaching hip implant that I received in August, 2008.

My fatigue and weakness though, since surgery, are almost non-stop. It's not that their severity has worsened; rather, the fatigue and weakness are more frequent. Before surgery I'd get three to four sequential weeks of relief in response to my routine lumbar epidurals and neck injections. That is no longer the case. But still, cycling often provides temporary relief from my post-surgery fatigue and weakness. I don't know exactly how, other than perhaps the release of endorphins somehow help? I had wondered, due to the unrelenting fatigue since surgery, if I'd developed Chronic Fatigue Syndrome. But, I do not believe that's the case. CFS is often worsened by exercise. That said, cycling is the only exercise I can do that provides good, refreshing, energizing relief. Even stretches can leave me feeling tired or exhausted.

Is getting started on a cycling trip easy? No. It's hard work. But I know the feeling of freedom that awaits me once I get into the ride. That feeling is on a continuum, and there is no guarantee. But I can't recall a time I've been the worse for cycling, except the one time when I fell off my bike.

Unlike walking, when I cycle, I do not have to carry my body weight. My bicycle supports me. I do not have to lift my legs. They push the pedals round and round which acts as leverage to move me forward. I do not have to use my arms and hands for anything except support, steering, and changing my gears. Changing my large, crankset gears is the biggest challenge due to the thumb-strength required to push the lever into third, which I do with a grimace.

My bicycle, Olivia... she truly is my freedom.
Freedom because my body feels lighter on wheels - I do not have to work so hard in order to move.
Freedom from the concentration and calculations required to perform routine, daily self-care tasks - my mind has more margin.
Freedom from having to string together words in order to communicate - there is no need to explain anything to anyone.

In those moments --cycling the wind, immersed in communion with Nature-- words aren't necessary; sentences even less so. In those moments, the linear alphabet --strung into words, stretched into sentences-- feels a shallow, peripheral communication when compared with Her song...primordial, evolving, deep, rich, wise, solid, fluid...
Beyond words...

My bicycle, Olivia, rests along the New River Rail Trail in VA.