Sometime in the past month, as I lay back in the recliner watching a television show, probably a mindless sitcom, that commercial came on. A Paralyzed Veterans of America commercial.
I usually flip to another station with the too-painful-to-hear-and-watch commercials. Abused animals. Starving children. War-torn cultures. Victims of horrific and traumatizing circumstances. I am unable to help those situations, and these commercials can feel too overwhelming.
This time I watched the commercial, but muted the sound.
The footage showed an at-least-partially paralyzed veteran, his legs and arms and body tremoring as the physical therapists assisted him in an exercise. Some seconds later, the camera view switched to the bottom half of his body under water as he held onto the swimming pool wall and maneuvered his legs to propel his body forward, 'walking.' I couldn't see the tremors under water. But I'm sure they were still there, just not visible.
I felt the relief, the lightness of weight, and the slice of freedom that comes with the ability to lift one's limbs.
I am not paralyzed.
And I have not seen war or combat.
But my limbs are impeded, and I can relate to the feeling of freedom in water as it lightens the load of the earth-sucking heaviness that comes with nerve damage.
As I watched him water-walk, and as the angle of the camera view switched to the smile and joy on his face because he could propel his own body with his own body, I thought of my bike, Olivia, and the freedom she brings me.
In the past year I've struggled with purpose of life. I've wondered, Why push to keep my limbs and body functioning if that is all I do? It feels so vain, so pointless, if I accomplish nothing more than self-care. I have little, if anything, left over to give or contribute to family and friends and community.
And as I watched this hero veteran, TV still on mute, I realized there is great purpose in continuing to strive, even if the only aim is to continue to be able to care for my self.
It is the right thing to do.
As much as I am able to dress my body, feed my body, clothe my body, bathe my body, emotionally learn to nurture my self, and all that is entailed with those aspects...the less Hubby and children will have to be burdened with those activities.
That doesn't mean they don't help.
But, the more I can do, the better for all.
And as I watched, but didn't hear, that commercial, I thought that self-care is the right and good and even noble thing to do.
The struggle of feeling of what is the point of keeping my body working if that's all I can do, eased a bit. And in that moment, I felt good about my 'accomplishments' of self-care each day.
I will bring that moment to remembrance in the future.
Yes, it is obvious and logical that self-care is a worthy cause in and of itself. But it is not always easy to feel that way because, at least outwardly, I am unable to contribute much to community and others.
Yes, I still have a few pet clients that I care for. And that gives me purpose too.
Dad was a WWII veteran. He served in the Coast Guard as a radar technician. That's all I know about that part of his life. My family wasn't big on sharing history as I was growing up.
Dad became a quadriplegic in a car accident over 50 years after serving in the Coast Guard. He was able to utilize his veteran benefits even though he wasn't wounded in service. But, he was cared for at home most of his 12+ years living as a quad. Through those years, Hubby and I occasionally made financial donations to The Paralyzed Veterans of America.
Dad died on a Friday, 2/16/96, in a snow storm that shut down part of the US east coast.
January 30, 2016
January 26, 2016
Jaws
So....
The nerve damage moved into my jaws on Monday, January 18, 2016.
It has now taken up residence in both legs and feet including knees and toes, both arms and hands including fingers, part way up my back on either side of my spine, the back of my neck, and both my jaws. At least both sides of my body are synchronized in their malady.
I can still chew and swallow. My back teeth don't touch when I chew; the strength isn't there to fully clamp down. My jaws feel weak. Chewing feels...clumsy. So, I take smaller bites and chew longer. (That means more take-home when we eat out.) I had already employed those tactics in the fall of 2014 due to heart burn and to what felt like my esophagus becoming more narrow.
The pain isn't bad; it's a strain-type pain similar to a long dental visit when I've had to keep my mouth open a long time and the after-pain of getting dental injections in the inside back jaw areas. The pain is similar to the pain in my neck now, and in my back. There is no shooting pain like used to happen as this unwelcome guest has invaded more corridors in my body.
Upon opening my eyes that Monday morning, and proceeding to yawn, my jaws didn't comply fully. They stopped short, with pain and inability to fully stretch. I don't recall my first thought, but it was probably "fuck" or "shit," with the tone of "I'm fucked now." Like I wasn't already.
I massaged my jaws as I lay on my back staring at the ceiling. Okay Carol. It might just be you slept wrong. Maybe you ground your teeth more than usual. Don't jump to the conclusion that it's nerve damage spreading again.
But it was post-week 5 since my last epidural. That's when the damage typically spreads. Then and sometime between post-weeks 8 to 10.
It always spreads while I'm asleep. I awake and a section of my body lets me know almost immediately that the antagonist has taken more space. I don't really like calling the nerve damage an enemy or antagonist. Because it is so much a part of my life and my body. I can't view my body as an enemy and I know factually it is not the enemy. I just can't dwell on the enemy aspect because then I'd constantly be in fight mode with my own self. That is not helpful to me. I could write a few blog posts on that subject, how I come up with analogies and how I flip the situation to see something, anything, in a more positive light.
I told only Hubby on Monday. I knew I was fooling myself to come up with other reasons for my jaw impediment. But I wasn't going to accept more damage, yet. I was quite depressed, and fearful. If my jaws were still lameish on Tuesday morning, I'd be 99% sure that was the problem.
Tuesday morning after I hobbled to the kitchen with my crippled body and stood at the sink leaning my hip area against the counter for support sipping water from a straw in a cup held by my crippled hands, my mind reeled with fear, bordering on terror. Is it ever going to quit spreading?!? Where will it spread to next? What if it is ALS? Stop it Carol. Stop it. You've got to keep it together.
I paused. More tears. Deep breaths. No you don't. You don't have to keep it together. You need to grieve the loss. Grieve. Grieve. Grieve.
And I wailed loudly for a good hour. As is often the case, the walls were my only witnesses. There were no humans or pets around. I wasn't outside, so no trees. But I gazed at the trees out the kitchen window, as my heart again pleaded for healing. I've grown very fond of trees.
After my wailing session, I began that thing that I'm becoming better and better at in regard to this unwelcome guest. I entered acceptance mode. Not defeat. But acceptance, which opens my thinking to possible solutions and how to cope.
I reluctantly let a few folks know over the next couple days and gathered some moral support. I get tired of this news; I know others do too. It's wearing, to say the least.
I saw my neurologist a week later on Monday, 1/25/16. I got about 15 shots in my neck and across my back directly under my neck. We moved my next epidural from 3/07/16 to 2/24/16.
There are positives in 'all this' (besides more take-home food), including that the hemp oil is still working. I found out just how much after going off of it and resensitizing my endocannabanoid system. 'All this' includes other things that have happened the past 6 weeks since my 50% reduction in my epidural. But those are subjects for possibly another time. Quite a bit has happened, and I have my notes.
I'm grateful for friends and family and my medical team.
Ha. I'm on a team! I guess I'm the captain.
Which brings to mind Grand Funk Railroad's "Closer to Home." Another significant song for me...
The word 'home' brings to mind my science fiction hero, Mark Watney, and my adaptation of some of his lines which I have taped on my refrigerator for this 12-week (now 10-week) round...
At some point everything is going to go south on you.
Everything.
And you'll say, "This is it. This is how I end."
Now you can either accept that, or you can get to work.
That's all it is.
You just...begin.
You solve one problem and you solve the next one, and then the next.
And if you solve enough problems, you get to come home.
And if you don't make it home? You had a helluva ride trying.
The nerve damage moved into my jaws on Monday, January 18, 2016.
It has now taken up residence in both legs and feet including knees and toes, both arms and hands including fingers, part way up my back on either side of my spine, the back of my neck, and both my jaws. At least both sides of my body are synchronized in their malady.
I can still chew and swallow. My back teeth don't touch when I chew; the strength isn't there to fully clamp down. My jaws feel weak. Chewing feels...clumsy. So, I take smaller bites and chew longer. (That means more take-home when we eat out.) I had already employed those tactics in the fall of 2014 due to heart burn and to what felt like my esophagus becoming more narrow.
The pain isn't bad; it's a strain-type pain similar to a long dental visit when I've had to keep my mouth open a long time and the after-pain of getting dental injections in the inside back jaw areas. The pain is similar to the pain in my neck now, and in my back. There is no shooting pain like used to happen as this unwelcome guest has invaded more corridors in my body.
Upon opening my eyes that Monday morning, and proceeding to yawn, my jaws didn't comply fully. They stopped short, with pain and inability to fully stretch. I don't recall my first thought, but it was probably "fuck" or "shit," with the tone of "I'm fucked now." Like I wasn't already.
I massaged my jaws as I lay on my back staring at the ceiling. Okay Carol. It might just be you slept wrong. Maybe you ground your teeth more than usual. Don't jump to the conclusion that it's nerve damage spreading again.
But it was post-week 5 since my last epidural. That's when the damage typically spreads. Then and sometime between post-weeks 8 to 10.
It always spreads while I'm asleep. I awake and a section of my body lets me know almost immediately that the antagonist has taken more space. I don't really like calling the nerve damage an enemy or antagonist. Because it is so much a part of my life and my body. I can't view my body as an enemy and I know factually it is not the enemy. I just can't dwell on the enemy aspect because then I'd constantly be in fight mode with my own self. That is not helpful to me. I could write a few blog posts on that subject, how I come up with analogies and how I flip the situation to see something, anything, in a more positive light.
I told only Hubby on Monday. I knew I was fooling myself to come up with other reasons for my jaw impediment. But I wasn't going to accept more damage, yet. I was quite depressed, and fearful. If my jaws were still lameish on Tuesday morning, I'd be 99% sure that was the problem.
Tuesday morning after I hobbled to the kitchen with my crippled body and stood at the sink leaning my hip area against the counter for support sipping water from a straw in a cup held by my crippled hands, my mind reeled with fear, bordering on terror. Is it ever going to quit spreading?!? Where will it spread to next? What if it is ALS? Stop it Carol. Stop it. You've got to keep it together.
I paused. More tears. Deep breaths. No you don't. You don't have to keep it together. You need to grieve the loss. Grieve. Grieve. Grieve.
And I wailed loudly for a good hour. As is often the case, the walls were my only witnesses. There were no humans or pets around. I wasn't outside, so no trees. But I gazed at the trees out the kitchen window, as my heart again pleaded for healing. I've grown very fond of trees.
After my wailing session, I began that thing that I'm becoming better and better at in regard to this unwelcome guest. I entered acceptance mode. Not defeat. But acceptance, which opens my thinking to possible solutions and how to cope.
I reluctantly let a few folks know over the next couple days and gathered some moral support. I get tired of this news; I know others do too. It's wearing, to say the least.
I saw my neurologist a week later on Monday, 1/25/16. I got about 15 shots in my neck and across my back directly under my neck. We moved my next epidural from 3/07/16 to 2/24/16.
There are positives in 'all this' (besides more take-home food), including that the hemp oil is still working. I found out just how much after going off of it and resensitizing my endocannabanoid system. 'All this' includes other things that have happened the past 6 weeks since my 50% reduction in my epidural. But those are subjects for possibly another time. Quite a bit has happened, and I have my notes.
I'm grateful for friends and family and my medical team.
Ha. I'm on a team! I guess I'm the captain.
Which brings to mind Grand Funk Railroad's "Closer to Home." Another significant song for me...
The word 'home' brings to mind my science fiction hero, Mark Watney, and my adaptation of some of his lines which I have taped on my refrigerator for this 12-week (now 10-week) round...
At some point everything is going to go south on you.
Everything.
And you'll say, "This is it. This is how I end."
Now you can either accept that, or you can get to work.
That's all it is.
You just...begin.
You solve one problem and you solve the next one, and then the next.
And if you solve enough problems, you get to come home.
And if you don't make it home? You had a helluva ride trying.
January 4, 2016
Peace & curiosity... & magic & dreams & good madness...
A couple nights ago I watched the last half of a show on PBS, First Peoples: Asia.
It was fascinating. This mix of humanoids: Denisovans of 42,000 years ago and Neanderthals of 70,000 years ago and their still identifiable DNA in humans of today and the percentages of that DNA that vary among the different peoples around the earth.
As the show ended and displayed a map with moving arrows and lines tracking how humans moved to populate the planet, I wondered.
Why? Why did our ancestors move like that? Was it for survival? Or was it curiosity about what lies beyond?
We've pretty much covered the Earth. We have changed Its landscapes. Now we are after Her Oceans and the Moon and Mars and Beyond.
Is it an instinctual survival mechanism that moves us? Or is it curiosity, just to see what is on the other side? Or is it greed, wanting more, the drive to conquer?
Moon and Mars and Beyond brought to mind The Martian, which I have now seen 15 times. That's somewhat embarrassing to admit. The DVD comes out on January 12, 2016. Yes, I'm going to buy it. :D
People-groups moving to populate the planet brought to mind my and Hubby's trip this past April to the Palatki Ruins near Sedona, Arizona, and the five-to-six-thousand-year-old petroglyphs and pictographs on the Red Rock walls, and the cliff-dwellers that once occupied the area. Looking it up online to refresh my thinker, I read that the Singua Indians inhabited the region from the 500s into the 1400s and then "mysteriously left" the area. It is not known why they left. Perhaps drought; perhaps enemies. 1400 AD isn't that long ago, comparatively speaking. How much of a role did curiosity play in their decision to relocate?
I thought of my bicycle day-trip to the Blue Ridge Parkway on December 16, 2015. And how, just out of curiosity, I took a side road.
It was a gravel road and just kind of called to me. I rode it to the end because I just wanted to see, what's down here? A couple miles later, I discover that I am 7 miles from where I'd parked Edward, my gray, 1999, Ford Explorer.
By the time I got back to Edward after riding two different Blue Ridge Mountain roads and the Parkway; after waving at and hollering my howdies to cows in three different pastures as they looked up from grazing and chewed while observing the happy-human-on-two-spinning-tires; after riding past three barking dogs at three different houses; after stopping at a stranger's home and inquiring of the inhabitants if the road I was riding intersected the Parkway; after concentrating my focus as a few cars and an 18-wheeler zoomed by me on that curvy mountain road; after having the momentary companionship of four deer galloping through a field beside me for 30 seconds which felt like three minutes and then bounding across the road in front of me as I watched the white underside of their tails disappear into the woods and wondering how those tails stay so white and simultaneously being enthralled with the sunset displaying Its hues of creams and purples and pinks and blues as the cold wind hit my cheeks while I rode the Parkway empty of cars on an unusual straight stretch, all so reminiscent of when Hubby and I road the Grand Canyon at sunset back in April...
By the time I got back to Edward, the sun having set, I had ridden 16.5 unplanned, beautiful, magical, unbelievable miles with my bike, Olivia. It was the perfect ride.
All because I was curious.
Almost every day, I read the news. My interests include politics, health, entertainment, climate, technology, and science. I don't read all those categories every day; I pick and choose. This morning while reading an article written by Sasha Stone entitled From Darkness to Light, I was stopped by the quote below. I wanted to write down some thoughts which have turned into this blog piece. I haven't even finished reading the article yet. I'll have to do that later, maybe as late as tomorrow.
In the article, Stone compares Ridley Scott's The Martian to another Ridley Scott film, Alien.
"...Alien is about fear of the unknown, fear of outer space and science. The Martian about the opposite of fear: curiosity. It is a celebration of science above all, and a tribute to our ever-inquisitive humanity..."
I think of what I've been living the past 4-1/2 years as I've tried to figure out how to keep my body functioning and limbs working. Part of my mindset has become that of curiosity.
What will happen if I try this? [to help heal and/or relieve such-and-such symptom/side effect]
I try whatever-it-is. And I observe. And I take notes. It has become my full-time job. There is a kind of detachment from the process, as detached as one can be when experimenting on oneself.
~*~*
For the New Year I wish us all...
A curiosity that adds richness and purpose to life, that leads to wonderful discoveries.
And I wish us all...
"Magic and dreams and good madness..." (Neil Gaiman, 2001)
By the way, the deer and the squirrel could care less if it's a new year. They have a different kind of calendar. I think they care more about seasons, one day at a time.
It was fascinating. This mix of humanoids: Denisovans of 42,000 years ago and Neanderthals of 70,000 years ago and their still identifiable DNA in humans of today and the percentages of that DNA that vary among the different peoples around the earth.
As the show ended and displayed a map with moving arrows and lines tracking how humans moved to populate the planet, I wondered.
Why? Why did our ancestors move like that? Was it for survival? Or was it curiosity about what lies beyond?
We've pretty much covered the Earth. We have changed Its landscapes. Now we are after Her Oceans and the Moon and Mars and Beyond.
Is it an instinctual survival mechanism that moves us? Or is it curiosity, just to see what is on the other side? Or is it greed, wanting more, the drive to conquer?
Moon and Mars and Beyond brought to mind The Martian, which I have now seen 15 times. That's somewhat embarrassing to admit. The DVD comes out on January 12, 2016. Yes, I'm going to buy it. :D
People-groups moving to populate the planet brought to mind my and Hubby's trip this past April to the Palatki Ruins near Sedona, Arizona, and the five-to-six-thousand-year-old petroglyphs and pictographs on the Red Rock walls, and the cliff-dwellers that once occupied the area. Looking it up online to refresh my thinker, I read that the Singua Indians inhabited the region from the 500s into the 1400s and then "mysteriously left" the area. It is not known why they left. Perhaps drought; perhaps enemies. 1400 AD isn't that long ago, comparatively speaking. How much of a role did curiosity play in their decision to relocate?
I thought of my bicycle day-trip to the Blue Ridge Parkway on December 16, 2015. And how, just out of curiosity, I took a side road.
It was a gravel road and just kind of called to me. I rode it to the end because I just wanted to see, what's down here? A couple miles later, I discover that I am 7 miles from where I'd parked Edward, my gray, 1999, Ford Explorer.
By the time I got back to Edward after riding two different Blue Ridge Mountain roads and the Parkway; after waving at and hollering my howdies to cows in three different pastures as they looked up from grazing and chewed while observing the happy-human-on-two-spinning-tires; after riding past three barking dogs at three different houses; after stopping at a stranger's home and inquiring of the inhabitants if the road I was riding intersected the Parkway; after concentrating my focus as a few cars and an 18-wheeler zoomed by me on that curvy mountain road; after having the momentary companionship of four deer galloping through a field beside me for 30 seconds which felt like three minutes and then bounding across the road in front of me as I watched the white underside of their tails disappear into the woods and wondering how those tails stay so white and simultaneously being enthralled with the sunset displaying Its hues of creams and purples and pinks and blues as the cold wind hit my cheeks while I rode the Parkway empty of cars on an unusual straight stretch, all so reminiscent of when Hubby and I road the Grand Canyon at sunset back in April...
By the time I got back to Edward, the sun having set, I had ridden 16.5 unplanned, beautiful, magical, unbelievable miles with my bike, Olivia. It was the perfect ride.
All because I was curious.
Almost every day, I read the news. My interests include politics, health, entertainment, climate, technology, and science. I don't read all those categories every day; I pick and choose. This morning while reading an article written by Sasha Stone entitled From Darkness to Light, I was stopped by the quote below. I wanted to write down some thoughts which have turned into this blog piece. I haven't even finished reading the article yet. I'll have to do that later, maybe as late as tomorrow.
In the article, Stone compares Ridley Scott's The Martian to another Ridley Scott film, Alien.
"...Alien is about fear of the unknown, fear of outer space and science. The Martian about the opposite of fear: curiosity. It is a celebration of science above all, and a tribute to our ever-inquisitive humanity..."
I think of what I've been living the past 4-1/2 years as I've tried to figure out how to keep my body functioning and limbs working. Part of my mindset has become that of curiosity.
What will happen if I try this? [to help heal and/or relieve such-and-such symptom/side effect]
I try whatever-it-is. And I observe. And I take notes. It has become my full-time job. There is a kind of detachment from the process, as detached as one can be when experimenting on oneself.
~*~*
For the New Year I wish us all...
A curiosity that adds richness and purpose to life, that leads to wonderful discoveries.
I wish us all...
Peace.
And I wish us all...
"Magic and dreams and good madness..." (Neil Gaiman, 2001)
By the way, the deer and the squirrel could care less if it's a new year. They have a different kind of calendar. I think they care more about seasons, one day at a time.
