I've been working on a writing, or rather rewriting, project. And I am stuck. Which really doesn't surprise me. Why am I stuck, and why am I not surprised?
I'm not sure I can fully answer the first part of that question. It's deeply complex. Us humans, our hearts and minds, our relationships, our interpretations, our histories -- they are complex.
Part of my stuckness is in regard to memory. I realized the other week that I had disremembered at least a couple timeframes and the reasoning behind a decision I made way-back-when. But I also question that reremembrance of the disremembrance. Just how accurate is my reremembrance regarding my motivation way-back-then? But motivations can be layered; there can be multiple sides, some not in our conscience awareness.
How much might I be filtering? Memoir is not an autobiography. It captures the essence of given experiences and the narrator's view, even if some of the linear facts and details might be disremembered.
Another part of the why to the stuckness -- the past couple days, as I've been able to think more clearly due to my recent epidural treatment, I've come to acknowledge just how much more deeply the experiences of the years which I am revisiting probably affected me. That doesn't mean I've not realized that depth before. But maybe I'm now realizing, or better realizing, it on another level.
How do I allow myself to address that realization? How do I put it into words? How can approach it without becoming emotionally involved or engulfed? "Engulfed" seems too extreme of a word. "Involved" doesn't quite capture the pull. I will be emotionally involved; I don't see how that can be avoided. But I also want to keep a distance to help my clarity. I neither want to minimize and dismiss the effect on me, nor do I want to overstate it. But maybe I should experiment with both ends - engulfment and distance.
Regardless, the impact was deep and consequential.
Why am I not surprised? Because, as stated above, I'm not ignorant of the impact that time period had on my psyche and body.
I first AWOLed the Way Corps in 1980 and again in 1983. Not until 2017/2018 did the thought hit me that perhaps my younger self was actually trying to keep my integrity, rather than abandoning it by not fulfilling my Corps vow, though I still regret the method in which I left the Corps. But my leaving was, at least in part and maybe a big part, my self, however awkwardly, trying to be who I was and not what I thought I should be, not what I felt was my obligation to be. And again, it's probably more complex than that. But, what if it's not?
The main point is how so very deeply those years may still influence me, maybe more than I dare want to admit.
September 12, 2020
September 10, 2020
Disability defensiveness
Them and Us
Other and Self
Abled and Disabled
It entered my conscience recently that I have tripped myself with an Us-Them mentality when it comes to my disability. On one extreme, I have consciously and unconsciously, felt/thought that the Abled (the Them) cannot begin to understand the cognitive, emotional, physical, and neurological fatigue I (the Us) struggle with, sometimes battle with. That can set up a resistance, an avoidance, in me (the Self) to engage the Abled (the Other). How can They possibly know where I am coming from? That mindset and behavior can set one up for isolation. That seems kind of obvious as I type it out.
I know, factually, that I am not alone in this struggle when it comes to living with an often laborious-arduous-onerous chronic illness and/or disability. I also know that others have it much worse than I. I know I endeavor to put on the abled-face and words and persona when I'm conversing with others (2D or 3D), and I endeavor to don the "healthy" appearance, regardless of my capacity that day. Sometimes I fail and fall into the explanation pit of trying to convey just how much I struggle. And the mindset unconsciously enters that Us-Them territory, where our differences become larger than our commonality. (This is mostly all in my head, I think?) Especially because I can ride a bike, and that may come across that I don't suffer with extreme fatigue and weakness.
And here I am again, as I type this, entering the territory of explanation.
I have told myself that when I find myself defensive about my limited abilities, to catch it before words come out of my mouth, and to direct my intention not as a defense, but rather to educate, if/when it feels appropriate to talk about how nerve damage works. But, too often, I've ended up going into too much detail, and still do sometimes. Then afterwards, I second and third and fourth guess myself and start thinking that maybe I came across with a victim mentality, or have actually entered into a victim mentality, or that I shared too much about myself, which I may have. At times when that has happened and John has been with me, I've asked him something like, "Did I say too much? Did I sound like a victim?" Most always, or maybe always, he tells me, "No, and no." But, John lives with me and has intimately witnessed my struggle and the self-care I go through to function. He's not an unbiased observer.
Another thing...the loss of friendships. But, they aren't really "lost." Rather they have become "absent." I could pick up the phone and call friends whom I used to keep in touch with. But, I don't have the cognitive and emotional capacity to do so. I am extremely limited when it comes to cultivating a friendship. On the other hand, the friends with whom I've not been in contact could always reach out to me. But, even if they did, I don't have the energy to cultivate more relationships; I can't give like I once did when I was more-abled. So I cut off that quasi-desire. (I have a quasi-superstitious quasi-belief about "be careful what you wish for.")
Again, from reading about others who live with visible and "invisible" disability and chronic illness, I know I am not alone in these type struggles.
One of the main points in writing out some of these feeling-thoughts (or thoughty-feelings) is the Us-Them mindset. I had never considered it in the Disabled-Abled context. It's something I'm gonna ponder a bit more, endeavor to catch when that mindset-shift is happening within me, and then endeavor to regulate it.
How do I regulate it? At the top of my list is to remember Dad.
When Dad was around 63 he was rendered a quadriplegic. I was intimately involved in his almost-daily care for nine months. Then almost-weekly (one and more times per week) for the following eleven years until he died. Even with all that, I couldn't fully understand what he went through (especially in his head) on a day-to-day basis. I got a glimpse, for a couple years, when my nerve damage was bad, bad. When I'd lay on the floor or bed and ceiling-stare because my physical body was so very heavy, when rolling over was a monumental task. (Not to mention dressing and bathing and feeding myself.) I'd think of Dad having to wait for whomever was on turning duty that night to come turn him to avoid his body developing bed sores. (Not to mention bathing and and feeding and dressing and bowel-and-pee functions, to list a few of the challenges.)
These are things the Abled (in those categories) may not be able to wrap their experiential head around; and that's okay. I've never lost a child or lived in adverse poverty or a war zone, or lots of other things. I can only grasp so much of another's suffering without having suffered it myself. This is part of being human.
Another thing I can do is, to the best of my ability on any given day, be aware when I might be entering defensive territory. And, if I'm able, reset that intention. And in all that, be easy with myself. Less critical. Surely that's possible? My defensiveness is not evil; it's understandable. That said, I can redirect it toward education (if that's appropriate) or changing the subject, if I have the energy to listen well enough. Put myself in the Other's shoes. Be more cognizant of our commonalities; we all have struggles, and those on a continuum.
There's more. But that's all I feel like writing now.
Other and Self
Abled and Disabled
It entered my conscience recently that I have tripped myself with an Us-Them mentality when it comes to my disability. On one extreme, I have consciously and unconsciously, felt/thought that the Abled (the Them) cannot begin to understand the cognitive, emotional, physical, and neurological fatigue I (the Us) struggle with, sometimes battle with. That can set up a resistance, an avoidance, in me (the Self) to engage the Abled (the Other). How can They possibly know where I am coming from? That mindset and behavior can set one up for isolation. That seems kind of obvious as I type it out.
I know, factually, that I am not alone in this struggle when it comes to living with an often laborious-arduous-onerous chronic illness and/or disability. I also know that others have it much worse than I. I know I endeavor to put on the abled-face and words and persona when I'm conversing with others (2D or 3D), and I endeavor to don the "healthy" appearance, regardless of my capacity that day. Sometimes I fail and fall into the explanation pit of trying to convey just how much I struggle. And the mindset unconsciously enters that Us-Them territory, where our differences become larger than our commonality. (This is mostly all in my head, I think?) Especially because I can ride a bike, and that may come across that I don't suffer with extreme fatigue and weakness.
And here I am again, as I type this, entering the territory of explanation.
I have told myself that when I find myself defensive about my limited abilities, to catch it before words come out of my mouth, and to direct my intention not as a defense, but rather to educate, if/when it feels appropriate to talk about how nerve damage works. But, too often, I've ended up going into too much detail, and still do sometimes. Then afterwards, I second and third and fourth guess myself and start thinking that maybe I came across with a victim mentality, or have actually entered into a victim mentality, or that I shared too much about myself, which I may have. At times when that has happened and John has been with me, I've asked him something like, "Did I say too much? Did I sound like a victim?" Most always, or maybe always, he tells me, "No, and no." But, John lives with me and has intimately witnessed my struggle and the self-care I go through to function. He's not an unbiased observer.
Another thing...the loss of friendships. But, they aren't really "lost." Rather they have become "absent." I could pick up the phone and call friends whom I used to keep in touch with. But, I don't have the cognitive and emotional capacity to do so. I am extremely limited when it comes to cultivating a friendship. On the other hand, the friends with whom I've not been in contact could always reach out to me. But, even if they did, I don't have the energy to cultivate more relationships; I can't give like I once did when I was more-abled. So I cut off that quasi-desire. (I have a quasi-superstitious quasi-belief about "be careful what you wish for.")
Again, from reading about others who live with visible and "invisible" disability and chronic illness, I know I am not alone in these type struggles.
One of the main points in writing out some of these feeling-thoughts (or thoughty-feelings) is the Us-Them mindset. I had never considered it in the Disabled-Abled context. It's something I'm gonna ponder a bit more, endeavor to catch when that mindset-shift is happening within me, and then endeavor to regulate it.
How do I regulate it? At the top of my list is to remember Dad.
When Dad was around 63 he was rendered a quadriplegic. I was intimately involved in his almost-daily care for nine months. Then almost-weekly (one and more times per week) for the following eleven years until he died. Even with all that, I couldn't fully understand what he went through (especially in his head) on a day-to-day basis. I got a glimpse, for a couple years, when my nerve damage was bad, bad. When I'd lay on the floor or bed and ceiling-stare because my physical body was so very heavy, when rolling over was a monumental task. (Not to mention dressing and bathing and feeding myself.) I'd think of Dad having to wait for whomever was on turning duty that night to come turn him to avoid his body developing bed sores. (Not to mention bathing and and feeding and dressing and bowel-and-pee functions, to list a few of the challenges.)
These are things the Abled (in those categories) may not be able to wrap their experiential head around; and that's okay. I've never lost a child or lived in adverse poverty or a war zone, or lots of other things. I can only grasp so much of another's suffering without having suffered it myself. This is part of being human.
Another thing I can do is, to the best of my ability on any given day, be aware when I might be entering defensive territory. And, if I'm able, reset that intention. And in all that, be easy with myself. Less critical. Surely that's possible? My defensiveness is not evil; it's understandable. That said, I can redirect it toward education (if that's appropriate) or changing the subject, if I have the energy to listen well enough. Put myself in the Other's shoes. Be more cognizant of our commonalities; we all have struggles, and those on a continuum.
There's more. But that's all I feel like writing now.
September 7, 2020
Epidural #31
I receive epidural #31 tomorrow. I received epidural #1 in December, 2013.
The past three weeks have been rough. My normal depression has been abnormally high in intensity and duration, along with anxiety. Thinking is difficult, making choices monumental. I'm having great difficulty accessing the part of my brain/mind that houses the tools to manage the psychological roller coaster. So, I just hold on, knowing it will end. But, it just keeps on chugging. I'm tired.
This morning as I was thinking about how to flip my perception -- (Something I do to find silver linings in given circumstances. Doing such can really shift my thinking patterns into a larger context of life.) -- the thought hit me, It needs to rest. "It" being my mental-health-navigational compartment.
The thought caused me pause and a sliver of clarity. I don't recall ever considering such. That that part of my mind -- the part that helps me so often, a part I think of as more mechanical(?) in nature -- needs to rest too. It makes sense; even machines need rest. In order to rest, that part of me, that regulator, has simply shut down...temporarily. Surely, it is temporary.
And perhaps it feels shut down because of the increased load that has been put on it the past three weeks. Capacity overload to an already taxed system wearied from years/decades of toil; especially the recent years managing polyradiculitis, metallosis, etc., and all their repercussions.
My hope is that the effects of my epidural tomorrow will help, and I'll once again have the cognitive, emotional, and physical energy to navigate better. One of my concerns with this recent, almost incessant, struggle is that a pattern of negative loop thinking will create a pathway that becomes more difficult to divert. That has happened before. And, if it happens again, I may need to hire professional help to get back on track.
Six weeks ago, in my last round of cervical spine trigger point injections, I received 20 mg less steroid medication in my injections, 100 mg instead of 120, an experiment, which I asked to give a try. (I get the cervical spine, trigger point injections every twelve weeks alternating with the every-twelve-week lumbar epidurals.) I did not fare as well as usual and had to take higher-than-usual daily doses of prednisone (which may be a factor in the more intense emotional roller coaster). It's hard for me to believe that 20 mg could make that much of a difference...but maybe it does.
There has been a more-than-the-usual amount of butterflies in the back yard, most of them Yellow Tiger Swallowtails. I've enjoyed watching them, how they sometimes float and sometimes fly. One flew really high into a tall tree. I had no idea butterflies could fly that high. I looked up the subject on the internet and read that people flying gliders have seen butterflies as high as 11,000 feet! What seems such a delicate creature is actually quite strong, equipped to endure winds and the cooler temperatures at higher altitudes. Fascinating.
Another thing I thought about this morning:
I don't have much of a support system, when it comes to people checking in on me. But then, seldom do I ask for support. After years of this chronic condition, it's just so "routine." And I seldom engage people anymore, because of the energy expenditure required. I'm not quite sure how to put this without maybe coming across as "woe is me." But this morning I thought, My epidurals are like a haircut. That is, they are so routine they seem no more significant than receiving a haircut. Why would I ever ask for support when it comes to getting a haircut? But I know epidurals aren't haircuts. And (in reality) I don't think others think of them as haircuts.
I doubt most people think of epidurals at all, mine or anyone's.
~*~
9/08/20, 3:15 PM, just before leaving the house for my 4:00 neurologist appointment to receive
epidural #31:
Hubby hands me a card that had arrived in our mailbox. Normally our mail doesn't arrive until 5:00 PM or so. The card is from a long-distance friend in Chicago, just checking in and letting me know how much I'm valued. She even put a cycling postage stamp on it. (I'd like to get some of those stamps.) The Listeners had perfect timing.
The past three weeks have been rough. My normal depression has been abnormally high in intensity and duration, along with anxiety. Thinking is difficult, making choices monumental. I'm having great difficulty accessing the part of my brain/mind that houses the tools to manage the psychological roller coaster. So, I just hold on, knowing it will end. But, it just keeps on chugging. I'm tired.
This morning as I was thinking about how to flip my perception -- (Something I do to find silver linings in given circumstances. Doing such can really shift my thinking patterns into a larger context of life.) -- the thought hit me, It needs to rest. "It" being my mental-health-navigational compartment.
The thought caused me pause and a sliver of clarity. I don't recall ever considering such. That that part of my mind -- the part that helps me so often, a part I think of as more mechanical(?) in nature -- needs to rest too. It makes sense; even machines need rest. In order to rest, that part of me, that regulator, has simply shut down...temporarily. Surely, it is temporary.
And perhaps it feels shut down because of the increased load that has been put on it the past three weeks. Capacity overload to an already taxed system wearied from years/decades of toil; especially the recent years managing polyradiculitis, metallosis, etc., and all their repercussions.
My hope is that the effects of my epidural tomorrow will help, and I'll once again have the cognitive, emotional, and physical energy to navigate better. One of my concerns with this recent, almost incessant, struggle is that a pattern of negative loop thinking will create a pathway that becomes more difficult to divert. That has happened before. And, if it happens again, I may need to hire professional help to get back on track.
Six weeks ago, in my last round of cervical spine trigger point injections, I received 20 mg less steroid medication in my injections, 100 mg instead of 120, an experiment, which I asked to give a try. (I get the cervical spine, trigger point injections every twelve weeks alternating with the every-twelve-week lumbar epidurals.) I did not fare as well as usual and had to take higher-than-usual daily doses of prednisone (which may be a factor in the more intense emotional roller coaster). It's hard for me to believe that 20 mg could make that much of a difference...but maybe it does.
There has been a more-than-the-usual amount of butterflies in the back yard, most of them Yellow Tiger Swallowtails. I've enjoyed watching them, how they sometimes float and sometimes fly. One flew really high into a tall tree. I had no idea butterflies could fly that high. I looked up the subject on the internet and read that people flying gliders have seen butterflies as high as 11,000 feet! What seems such a delicate creature is actually quite strong, equipped to endure winds and the cooler temperatures at higher altitudes. Fascinating.
Another thing I thought about this morning:
I don't have much of a support system, when it comes to people checking in on me. But then, seldom do I ask for support. After years of this chronic condition, it's just so "routine." And I seldom engage people anymore, because of the energy expenditure required. I'm not quite sure how to put this without maybe coming across as "woe is me." But this morning I thought, My epidurals are like a haircut. That is, they are so routine they seem no more significant than receiving a haircut. Why would I ever ask for support when it comes to getting a haircut? But I know epidurals aren't haircuts. And (in reality) I don't think others think of them as haircuts.
I doubt most people think of epidurals at all, mine or anyone's.
~*~
9/08/20, 3:15 PM, just before leaving the house for my 4:00 neurologist appointment to receive
epidural #31:
Hubby hands me a card that had arrived in our mailbox. Normally our mail doesn't arrive until 5:00 PM or so. The card is from a long-distance friend in Chicago, just checking in and letting me know how much I'm valued. She even put a cycling postage stamp on it. (I'd like to get some of those stamps.) The Listeners had perfect timing.