Thanks to Sparks

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Photo artwork by Marlyn Armstrong, author of:

Teepee12.com blog

Fellow blogger, SparksFromAcombustableMind, shared some of my posts today in a blog of her own, which lead me to a fellow New Englander, Marilyn Armstrong, who made me happy with her beautiful photography.  Yes, even the snow pictures !

Being a refugee from the snow, I picked her lovely Rockport, MA, sunset to share with you.

I recently had one of my favorite photographs made into a metal mounted 8×8 picture for hanging on the wall in my home.  When nature’s beauty speaks to you, you’re blessed.

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Sunday Reading

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Still struggling with fury, having finally completed re-typing of my health audit form data, and submission of my text to the lawyer well after midnight last evening.

I hate trying to be smart and having to live my life by committee and consensus, when all I really want to do is tell everyone involved in my LTD claim – both for me and against me – to go f*ck themselves.

🎶 F*ck you, F*CK you, f*ck  YOUUUUUUUU… 🎶

was a theme song sung long ago by my 2 year old nephew, and in times of stress I take comfort in its rhythmic beat.

When one is trying to be smart, though, one learns to fight their baser impulses privately, strangle their words and deeds, and suck up their frustration for the greater good – getting what you paid for in this case – so that you can survive financially as life slowly leaves your body due to chronic illnesses…

In a nod to Maya Angelou, today’s ode to all the people I hate in the insurance profession, and an apology to my lawyer because getting out of my own way is my toughest challenge on any given day.

Backing down and accepting their advice won’t kill me, even if it feels like they are holding the rope on my noose…

“Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries…

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise…”

Vincent

With Credit to Ashe Vernon, who is – I believe – the original author.  I’m apologizing in advance for the violent imagery.  I kept it because it was accurate, even if I abhor the encouragement it sends subliminally to people struggling to cope with life.

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“when they talk about the tortured genius, somebody always brings up van gogh— how he swallowed yellow paint because he wanted to put the sunshine inside himself. how his psychosis was probably the result of lead poisoning. they call him a miracle, but what i see is a man who was so sad, he found a beautiful way to kill himself.

they say, “it’s awful isn’t it?” they say, “it’s always the talented ones who go before their time.” and me, a nine year old kid who’s always been told they were so talented wonders when i am going to die.

we study them in school, the tortured artists. look at all the poets who killed themselves what would their work have been without their depression? it’s it beautiful, isn’t it sad? as if depression is a parlor trick— pull it out at parties, impress all your friends. as if depression isn’t seeing how long you can go between showers before somebody notices or pizza rolls for dinner three nights in a row and then nothing the night after, because going to the store is an impossibility that you have not yet gathered the courage to conquer.

it is the least beautiful thing i’ve ever seen and we call it the mark of an artist to stand in the center of an ocean and see nothing but desert. to be seated at a feast, but still swallowing sand.

depression is the yellow paint, the yellow paint, the yellow paint, the yellow paint, the yellow paint, the yellow paint, the yellow paint, the yellow paint, the yellow paint—

art is a coping mechanism. van gogh is good because when he had nothing, he had paint. when he was empty, he had paint. when the world was awful, he had paint. when he hated himself, he didn’t hate the paint. he whitewashed over his own masterpieces, because it was never about being famous, it was about doing the one thing that made sense when everything else didn’t.

and they say, “without his illness, we never would have gotten all—this.” because they value his art more than his sanity because god forbid you lead a happy life and leave nothing to remember you by.” — VINCENT, by Ashe Vernon

Profits Over People.

SeattleHomeless         Hay-más-indigentes-en-EEUU-que-en-países-más-pobres-28

SusanGKomen    homeless-man-goes-wireless

Seattle was an eye-opening experience for me.  I was traveling with a friend and her daughter, with the plan being that we would enjoy a relaxing getaway before the daughter returned to her second year of college.

My friend is a hard worker, married, who believes in fairytales.

She will never admit that she has chosen to run away from the realities of life, but my opinion is that she has done so.  She’s moved to the boonies of Oregon, surrounded by white, christian, couples and their children.  She’s allowed her husband to retire early, despite the fact that they have a child who needs to get through college, and she works in public health with underserved patients who might otherwise be denied basic medical care for themselves and their children due to the christian belief that every child must be born, as well as the fact that we don’t want to contribute to the care of the children that the parents can’t afford.

While her daily life is a fight not to be associated with Planned Parenthood for fear of being attacked by the anti-abortion, anti-benefits christian community she is serving, she still prefers to live away from the ugly realities of homelessness, drug addiction, city living, and desperate people.  She sees enough of desperate people every day in her job, before she drives back into the woods to live in peace on her (however many) acres of land.

I meanwhile, hide in the middle of a gentrification farm belt, slowly losing its farmers and being built up overnight into an urban hell, complete with gangs of unruly teens, and homelessness reaching further and further down the street from the heart of Silicon Valley into my small city.

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While I have yet to see our homeless wired up with laptops, cellphones and headphones as was so common in Seattle, the encroachment of the truly desperate is moving closer each day.

So, I get her frustration with being on a simple vacation of major tourist spots, and dealing with panhandling, begging, and open drug use.

I was surprised when I got yelled at for pulling out my wallet and giving someone money.  (I did it in an alcove, away from the street where the homeless guy was singing). I was amazed that she did her usual thing of hiding her fear until she lost her temper and started yelling at her daughter and me about our indifference to her feeling of unsafe walking conditions.

While I am glad that I went, I was disappointed to have to come home earlier than anticipated (but it was better than continuing to be in pain from my messed up rib, and trying to make nice in her home when I was not at my best).

We had a lot of fun exploring Seattle, but it underscored the fact that I am one LTD benefits denial away from risking homelessness myself.

While I took lots of naps and got in a lot of walking, by the time we were done, I’d scared myself into a panic attack on the Space Needle (I rode up to the top in the elevator, but refused to get off due to breathing difficulties from being scared out of my mind), and we had a lovely day taking the Ferry to Bainbridge Island.  (I loved / hated that trip because I could not sit outside and enjoy the sun and the breeze as the wind would have been too much for my inability to breathe well, and might have triggered an exacerbation).

So, I did what I could while defying the insurance company’s ability to do their worst in challenging my abilities vs. my quality of life.  And, coming home I found out that two more  COPDers (fellow gaspers) lost their battle with our disease, and during the adventure I was called on the carpet for another Aetna audit on my state of health.

Coming home, I also continued to explore my work alternatives should I lose my LTD matching benefits and have to be able to find a way to earn a living.  Then, I came across a Newsweek article about this working poor woman, and it just scared the pants off me:

Jobs Alone Are Not the Solution to Poverty

We have lost our minds in the country about what it means to be a humanitarian.  We cannot help everyone, but does it mean that we citizens need to shun the homeless and be afraid of them?  I don’t know, but I would hope not.

So often, homeless folks are mentally challenged folks ranting at the world, half dressed, dirty, and struggling (as shown in the picture above of the skinny, shirtless guy sitting on the curb).  But, they can just as easily be someone who is working and trying to find a moment of kindness while they are trying to get back on their feet.  When the sun is out, there are lots of other tourists around, I’m willing to be that passing stranger who does no harm.  (Side note:  I share what I can, when I can, and as long as you appear to need it or are working hard (like singing) to earn it. If you’re smoking, rude or otherwise demanding, then you’re well enough to not need anything from me).

While walking the streets of Seattle, the homeless were everywhere.  The young people who had given up on life were astounding.  The open drug use (3 different needles were seen in my travels, and that’s 3 needles too much).  The old people, men and women, who were trying to cobble together a corner of pavement into a home were depressing.

Then, into this morass of neglect, we add the drug addicted, the criminal class, and the violent.  Yes, I would avoid all 3 of those, but who is to tell which is which?

Into all of this I come home to the continued drama of Cadet Bone Spurs, our idiot toddler President.

The world has lost its mind.  I have no answers.  I’m just very depressed by the need to pursue profits over people.

I spend every day thankful for what I have, and hoping that I won’t ever be in their place.

 

 

Invalidism Cult. Not.

Aetna Questions - Sep2018

It’s that time.  The annual Aetna audit, where they try and get me to get off my lazy butt and go back to work because I’m clearly faking it.

Unless my life resembles this kind of image:

Invalidism

I’m a big fake that needs to take her goldbricking @ss off disability and find a job that will employ me.   In any capacity.  Regardless of the fact that I am on SSDI for the rest of my life.  Regardless of the fact that one can barely survive financially without a medical condition on SSDI, and the fact that SSDI pays better than most minimum wage jobs.  When adding in my income from LTD, with an income of over $5,000 a month, combined, there is no way I could achieve that same level of financial independence with a part-time, minimum wage job.  AND, when you think that I used to make almost $12,000 a month before becoming disabled, it becomes a circuitous conversation where I just can’t win.

Clearly, in actually expecting the policy I paid into to be there for me when I am now disabled, I’m interfering with the profits of the insurance company.  You know, that policy I paid into for 42 long years of work, so that I would be covered in the event that I did not die before I reached retirement age, and I was no longer able to work.  That policy I paid into for 42 years via various employers.

Every time I’m audited by the insurance company, it sends me to a dark place emotionally.

Not because I’m not strong enough to stand up for myself, but because years of conditioning and hiding my bodies’ weaknesses to be able to pass for “normal” hinders my ability to stand up for myself and my state of disability without apologizing.

Now that I can no longer pass for normal, it feels like the insurance company and the minions of the great, indifferent, bureaucracy, live to make me feel like crap.  Worthless.  A user.

When they ask questions like, “Is patient able to endorse checks and direct the proceeds thereof?” I have to remind myself that I am not Alzheimers-stricken.  While I can have fatigue and not be able to perform at my best, especially if I’m tired and my oxygen saturation rates are low, I am NOT incompetent.

If I had my way, I’d fill out the form honestly, but any attempt to be honest has to be made by my doctor (i.e., my “co-conspirator” in their lingo), and he must also advocate for me to the best of his ability to foresee the fight looming over the benefits I receive.

Aetna Answers - blog

If I follow my instincts and answer the questions as shown above, I create a conundrum that they will use to show that I’m goldbricking.

I keep thinking, “there oughta be a law” that protects me from their harassing and abusive queries into my state of health, but the reality is that I am subject to their audits for as long as I am collecting money from their insurance policy.  Believe me, it’s a high price to pay – but especially when one considers that it’s payment being made after one has accepted being disabled, and after one has paid into their policy for many years.

Because I’m able to travel and go to swim classes, walk, and work in the garden, then I must be able to hold down a full time job and stop goldbricking.

Having just come back from a trip to Portland and Seattle, I can see their point.  But.  (Always a But…).  They don’t see my struggles.  They don’t WANT to see the nights where I don’t sleep well, or sometimes at all, because I’m taking too much breathing medication in order to keep up and functional.  Sunday, September 9th, through Tuesday, September 11th, I was traveling to Portland, via flight, and then driving to Canyonville, where I checked into a local casino.  While I got out and walked from time to time, and pulled to the side of a parking area to sleep when tired, there is nothing to show how much that effort took out of me.

When I was coming home, after messing up my rib, there is nothing to show I was in pain and suffering, trying to put a good face on things, while dreading every step I took trying to wear my backpack and carry back a shopping bag full of items to get to the Baggage Claim area.  There is nothing to show that I took over an hour to walk from the jetway to the baggage claim (enough time for them to pull my suitcase and put it into the missing / abandoned luggage area).

There is nothing to show that I took the next 2 days to rest up, moving to chair to couch to rocking chair, and napping from exhaustion while sleeping sitting up.  Instead, all they will see is that I was well enough to travel and visit friends, and my life didn’t involve a hospital stay at any point during the trip or when I returned home, so I should stop being a lazy @ss and get off my butt and get back to work.

I look at what Russ of www.COPDathlete.com is able to accomplish.  Being competitive, I wish I could embrace the solutions that have worked for him.  But, my reality is that I can’t tolerate half the food choices of other people, never mind experimental treatments such as taking ketone esters.

Because I can use the computer and advocate for myself, I am immediately suspect as a goldbricker.  It’s all so discouraging.

 

Fairytales

Faith-IcanOnlyImagine

James Taylor was a big part of my life when it was falling to pieces.  1970.  9 years old, going on 10, and sure that I knew everything crazy in my world would straighten itself out.  The Hollies.  America.  The Beatles.  Bread.  Simon and Garfunkle.  The Carpenters.  Dianna Ross.  Three Dog Night.  Neil Diamond.  The Monkees.  Bobby Sherman.  Santana.  Creedence Clearwater Revival.  So many answers to my unanswerable questions, and they were all musically-based.  So, it was with them in mind that I watched this lovely film earlier this week, while thinking back to a similar time in my own youth.

1970-ish.  I’d recovered from the chest surgery of the prior Summer (pectus excavatum repair, AGAIN, as they tried to fix the keloid complications as my skin battled itself into knots, trying to strangle the life out of me), and we prepared to go on a road trip to Kentucky to see my Father’s mother, Nana, and her latest husband, Jim.

In the front of my brain, I didn’t know that my parent’s marriage was in the process of crumbling.  Being a child, I just knew that Mom loved me, Dad loved and hated me, was trying to get his high school diploma in an effort to solidify his ability to earn a good paycheck, and they were both struggling to be the best parents and people they could be, as Society’s expectations were imploding around them, and the world was reshaping itself it ways that nobody living through it could easily understand.

I didn’t know my favorite song, “Fire and Rain”, was about addiction, love and suicide.   I didn’t know my Dad’s taste in music was highlighting his own crisis of conscience and yet another moment or more of marital infidelity.  I just knew that words set to music calmed me and made me feel like nothing was impossible or irreparable.

Reality eventually set in.  I got through it.  And, I can say I’m the better for it.  But, like all truths, some part of your hope or faith or whatever you want to label it, comes crashing down as you learn to accept that sometimes life really sucks, and your only focus is to not make life sucky for someone else as you fight to endure and get through the tough times.

The years between my 8th birthday and my 15th birthday were wonderful and horrible.  I really can’t say I have many memories of anything except the extremes.  While I have my own emotional baggage, I have no idea of the bags my baby sister packed, living through the same period surrounded by emotional warfare in our home.  I know the baggage exists, as I’m part of her nightmares, and I accept it even when I reject her accusations that I am a waste of space as a person.

Don’t get me wrong.  There were lots of great times.  I remember Baby Sis on the beach in Prince Edward Island, Canada, as we vacationed with family friends.  That trip, living and working next door to a farm, is one of the highlights of my life.  It’s also the point where I was drowning and almost killed my Big Brother in my desperation to survive (as he was the only one who noticed I was struggling and jumped into a rip tide current to save me). Luckily, the adults finally noticed our struggle and jumped up to save us both.  But, that moment of desperate fear lives on in my brain as a moment of depravity where I mindlessly fought to save myself regardless of the danger my fear posed to anyone else.

Now, as an adult looking back, I know that I was too young to be put in charge of a 4 year old, and that’s before one understands that the child didn’t care for me, and I was clearly not nurturing material.  I’m still not.  That knowledge of my impatience and shortcomings helps me accept and acknowledge my failings, and motivated me to apologize and do my best to atone for my abuses, but my acknowledgement of her complaints only widened the gap between us, as there will never be acceptance on Baby Sis’s part that we were both screwed up and doing the best we could with what we had.

I get it.

I was older.

I was supposed to be able to put up with her crap.  I could not.  I did not.

Our family situation was not something either of us could fix, so after the divorce and our moving to a new home, having shared a bedroom for about 2 years, Mom slept on the couch in the living room and my sister and I no longer shared a bedroom to eliminate her coming home to open warfare every night over whatever piddly-@ss thing was bothering either one of us.

As an adult, I think that’s appalling to have to admit, but it’s the truth.  Baby Sis could not tolerate listening to me breathe at night, worried that every breath on a bad breathing day would be my last.  I could not tolerate her being into my stuff, my space, my clothes, and know that every time I tried to be nice to her or do something with her it always ended in failure.  I sucked as a Big Sister.

I accept that I cannot control the narrative.  I accept that Baby Sis has a right to recall things any way she chooses, with me being unable to “correct” the recollections as my memories are not hers, and my recall of the reality of the situation is not hers.  But, that being said, I still wonder why I want her in my life.  Is it entitlement?

Knowing that we have many happy memories doesn’t negate the bad ones.  Knowing that I’ve sometimes been successful in reaching her and enjoying her company doesn’t negate the fact that she has chosen to have nothing to do with me for the last 3 years.  On the surface, it’s not that big a deal as we live 3,000 miles away from each other.  However, underneath, it’s heartbreaking and I have no one to blame but myself.

In reality, I told our father to take a hike way back in 1980, as the stress and drama was too much, and I just wanted peace and quiet.  Can I then resent my Baby Sis for taking the same road and making the same choice from 2015 onward?  Nope.

So, it was with all this crap in my history that I sat down and watched, “I can only imagine” earlier this week.

Lovely.  Heartbreaking.  Incredibly sad.  But, ultimately, untrue. Hollywood changed reality and I find it sad that they needed to alter facts to suit their own narrative.  Don’t get me wrong – it was a good story.

I can see shades of myself in his evil, abusive father.  But.  But, but, but…

I cannot accept that this story is anything but a cleaned up Hollywood fantasy.  While I am pleased that this young man was able to use his Faith in a loving heavenly Father as a way to combat his personal demons, I still don’t accept that some mythical being exists elsewhere watching everything we do, and doing nothing to change our trajectory.

While I can read and enjoy all the, “those were the times I carried you” allegories from people of faith, at the end of the day they are prettying up what occurred in the hope that somehow, somewhere, they will find redemption and reward for all they have suffered.  I can’t monetize suffering that way.  There is no reward for enduring and resilience except to not torment yourself over things you cannot change.  Acceptance of sucky, unchangeable situations has always been my reality.

Me?  I don’t think we get a free pass in life.  When we look at the animals struggling to survive in a violent, prey-or-predator world, or children and innocents suffering in a war zone, I realize that my life is blessed because of proximity.  I am blessed because I was born in this place, time and geographical location – there is no other reason.

Because I’ve worked hard to not expect to be taken care of in my old age, while also planning for my end of life reality, I realize that I am just one of the fortunate ones.  In every bell curve, so many suffer, so many succeed, and a whole bunch in the middle muddle through.  I’m blessed to be one of the muddlers.

Could my life be better?  Yes.

Do I wish my Baby Sis would get over herself and accept me warts and all?  Yes.

Am I going to twist myself into misery because my life isn’t all that I could hope it could be?  No.

Life is what it is, and not the fairytales that Hollywood wants to feed us, believing that the truth isn’t good enough.  If there is a God or a next chapter after we leave this earthly plane, that will be soon enough for me to come up to speed.  For now, I just keep on concentrating on not messing up anyone else’s life due to my own unreasonable demands.

Want to learn the true story behind the film?  Check out this People magazine profile of the singer at the heart of the story.

https://people.com/movies/bart-millard-faith-based-movie-true-story/

(Disclaimer – the years 1969 through 1979 blend together in a crazy kaleidoscope, so any errors in my tales are the fault of my patchy memory as the brain works to protect the heart by wiping out consistency and just leaves one with echoes of what was a tumultuous time).