Quincineara beat down

In this generation of #MeToo, I’m watching all the quincineara preparations of the young ladies around me (similar to the debutante ball my Nana tried to get me to desire and agree to have, just before I graduated high school), and it’s just exhausting.

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I am well beyond the age of getting married and having kids, but I’m at the other end of the age scale where an unmarried older woman has no one obliged to take care of her thru means or family or birth, so the focus on a woman’s day as a married princess or object of desire is beating me down and exhausting my psyche.

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My decision was made long ago, in terms of hope, my reality, and knowledge of what I would and would NOT tacitly agree to endure, in order to “hope” for security in my old age.

I say “hope” for security, because the reality that I’ve experienced is that the woman is sold a bill of goods about her value as an untainted virgin, and her family rushes her into marriage (either approving or disapproving of the male) in the hope that any pregnancies happen within the confines of marriage, so that the grand children are someone else’s responsibility to raise.

For all intents and purposes, they bless the union hoping 2 unfinished but physically mature children  will grow old together, learning to cleave to each other, despite life’s storms.

The family hopes for prosperity and joy for the young couple, and they pile on the pressure (with Mother Nature’s full backing and manipulation of the hormones) to hurry up and add kids into the mix.  All while raising the next generation of girls to desire a fantasy as they mature,

While I have no hands-on experience of the debutante ball or quincineara party, having chosen a solo path for myself, I do have opinions on the outcome.  But, there’s no surprise in that, is there ?!???!

We are programmed at a young age to think of things life and our corner of the village or society “owes” us.  Birthday parties.  Christmas presents.  Weddings.  Showers (bridal, birth, new home, etc.).  We are taught (at least in my culture) that life events are a series of routines and obligations.  That you show up for someone, and they show up for someone, and then a combination of friends and family show up for you, “when it’s your turn”.

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(See the people peeking out of the shack in the background?  That may be her reality for living conditions once the sweet 16 ceremony announcing her availability for marriage and motherhood is over).

For some of us, the rules have changed or evolved when we weren’t looking, and we never get “our turn”.  In my case, it was embracing Women’s Lib as a way to have it all and be beholden to none.  After all, I reasoned, my Mom did everything right and still ended up working all hours of the day and night (with the help of her wonderful girlfriends) to keep a roof over our heads, and the plumbing working, and the bills paid.  Mom broke the cycle of silence by opting for divorce vs. accepting disrespect and abuse from her spouse,  and it was her choice to walk away from the insanity of her marriage that was the saving of her and all of our lives.

In my case, the passing of my Mom and Brother informed me over time that my choice to move away from my family, to break with tradition, has left me without a home port.  I became an adult orphan when I moved 3,000 miles away from my home port, and I never knew it because I made a conscious choice to build a husband and child-free life, and I moved into a youth-oriented area full of single people who appeared to have made similar choices.  Plus, my ability to hide from my family’s censure or expectations (if ever necessary) was strengthened by weekly or as necessary phone calls between myself and family and friends, so the bonds stood firm.

It is only when the fabric of our support circle is ripped through the passing of another that we realize how truly connected we were to each other, and how important it is to mend the fabric of our bonds to ensure continuity.  It is only when we see who among our family or childhood friends refuse to meet us half way in rebuilding a bond that we realize what we’ve lost with the passing of a matriarch or sibling.

So, we build again and we hope again, and time passes.  Now, we are the older, single person in a space that appears to only value youth and malleability.

Married friends launch their kids into the world, building the next generation, and the topic of Sweet 16’s, Debutante Balls, or Quincinearas become important to the next generation of Grannies and Nanas and Moms, who see the changes in the world and want to pass on “protection” to the next generation of women by ensuring the girls go down a path of set expectations for “princesses” or “queens” about how a ‘real’ woman lives, the matriarchal center of her family through the ages.

As I get ready to welcome a long term guest into my home, a women with an ex husband, grown children, and few places to turn, I wonder at that mythical young woman making her quincineara.

She’s surrounded by family, friends, momentary party excitement, and a “village” trying to direct her choices.  Trying to ensure that she is married young, before she knows who she is and what she wants from life.  Trying to ensure that she gets pregnant quickly to continue her species, as well as plant the seeds with those much hoped for children for anticipating that they, in turn, will be the extra hands of caring and support that her parents and grandparents may need as the circle of life continues and those hoped-for babies grow to adulthood, and pick up the mantle of caregiving aspirations.

I, meanwhile, deal every day with how best to retain my independence, afford to age in place, and stay as healthy as I can despite my medical issues.  Child free, and without anyone emotionally and biologically programmed to care for me as my body continues to age and my birth defects continue to evolve and plague me.

As I visit “F”, who is coping with dementia, and try and share companionship and adventures, I reflect on her 3 marriages, divorces, and childless state.

As I visit “F”, whose affairs are supposed to be monitored long distance, from Canada, while her mind and personality slowly slips away, I wonder at all the thousands of choices that had to fail to bear fruit for her to be here, at this moment in time, independence gone, and depending on the kindness of strangers as caregivers in her assisted living facility.

I am thankful “F” made good choices that lucked out to her having financial independence until her money runs out (which will hopefully not happen until after her mind is fully gone), and I’m grateful that she has some connections to family in Canada who will handle her affairs to the best of their ability, even though they won’t get on a plane or drive down from Canada to see for themselves that she’s doing ok.

Meanwhile, I’m also opening my home to “CM” who did everything society and her family expected, but..

– who ended up divorced and raising her kids solo

– who had a husband who refused to pay child support

– who now has grown children struggling to build their own lives

– who is now 64, never really worked (beyond raising kids), struggling financially, and

– who has been couch surfing since at least 2009, trying to survive.

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”CM”, if the Park managers agree, will move in with me as we try and get her back on her feet, financially, by helping her qualify for subsidized housing so that her broken and no-longer-able-to-work body can have a place to call her own in order to age in place.

At some point, if she cannot get the help she needs any other way, we may have to force her into a woman’s shelter to allow her to jump the line for necessary housing assistance.  “CM” was supposed to get on various waiting lists way back in 2009, but I suspect that pride and hiding from her reality stopped her from following thru on those recommendations to get what she needed.  At any rate, I’ve agreed to give her 6 months or so in my spare room at Old People’s “Camp”, and we’ll see what’s possible for helping her avoid homelessness.

She’s a far cry from the unknown road ahead for that quincineara girl, but in the belief that it truly takes a village to help each other get thru each stage of their lives,    I’ll try my best to help her get on her feet and stay independent for as long as possible.

It what the village is supposed to do, when one of their own needs help.

 

 

Hibernation time

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Winter is the toughest time for me.  I spend way too much time freezing, hiding in bed, and contemplating my end.

Seriously.

Everything is cranky on my body.  Sleep is anything but refreshing.  The wet and cold weather leaves me trapped in my house.  (Just to illustrate my cold weather reality).

Because I have more time on my hands to contemplate my navel, I also struggle with more philosophical concepts, and tune in to the anxiety and fear online as everyone airs their issues.

Trapped, I listen to more musicals, and I spend time creating jewelry, or sewing or whatever – despite the pain of arthritis in my hands – because I need to find a way to remain distracted in a heathy way, and not make my health issues worse.

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I’m a firm believer in the fact that I don’t have any answers, don’t know what happens after we leave this earthly realm, and frankly, I don’t want to spiral down into other people’s certainty and fears.

I have a bunch of friends, all variety of Christians, who all feel some aspect of “God’s gonna get ya” if you don’t live by whatever flavor of His Word they follow.  I’m not knocking their faith, as my viewpoint has always been, “I don’t know.  Let’s deal with what’s in front of us without getting all philosophical and ignoring the real life issue which needs attention”.

Not a put down.  Not a debate over belief systems.  Simply a focus on things which I might be able to impact in a positive way.

Some of my friends, though, are upstanding members of the, “get one for Jesus” camp, and their writings about end of days, satan among us, and postings of one depressing thing after another (missing or abused children or pets being their favorite topics), are absolutely Debbie Downers.  Not because I know all the answers, but because – if their version of faith is right – we are the evil we see in the world, Satan is fermenting unrest and violence, and God’s gonna get me if I don’t reform my wicked, unbeliever ways.

It’s like a drumbeat in the back of my brain, fighting my normal rationality and placidity, and kicking me when I’m down and trying to stay upbeat.

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I know it’s my Catholic upbringing fighting my rational brain, but it’s especially hard to silence that voice in the depths of Winter, when I’m trapped in my head, just trying to hang on until a better day comes.

I can’t explain it to my rabid Believer friends, but I’ve never been a sycophant, begging for scraps of attention from anyone.  It’s just not in my nature to kiss the ring and be grateful that I am allowed to live another day.

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Being homeless in 1996, for 3 weeks after the local utility company blew up my house, was one of the hardest things I’ve ever dealt with in life.

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Rather than kiss the ring in gratitude for being alive and only losing stuff, I was angry.  Immensely angry.  Anger is my go-to emotion, as anger gets things done and allows me to move on.

But, anger isn’t healthy for me physically.  Strong emotions – excitement, happiness, anger – whatever – can trigger breathing problems.  So, I’ve worked hard to cultivate my mellow, and to keep busy so that I do not have enough time on my hands to contemplate the cruelty in the world, whether or not something is “fair”, and to try and curb my daily anxiety for knowing things are chaotic, and one false move (or, the fickle finger of fate), could send my status quo to the ether, blowing up my semblance of stability and putting me in the midst of the fight of my life.  Again.

To quote one of my Mom’s favorite life coaches, Iyanla Vanzant, I recognize I’m in my head without adult supervision, so I do what I can to focus on the short term and stay out of trouble.

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Yesterday, I did the right thing, cancelling a pedicure appointment (medically necessary due to diabetes), and I spent all day nagging myself to death for being a wimp and not going out in the crazy rainstorms we were having.  I slept way too much (hibernating to that degree is truly how I get through the Winter, even if I know lying around all day is bad for my overall health and wellness).  Restless at night, in more pain from sleeping the day away, I spent money I shouldn’t have, running to the store for baking supplies, and kept warm in my tin can home by cooking fudge for a few hours.

Fudge I know I’m not supposed to have, but justified “sampling” as reasonable to prepare in advance for next week’s show as we also got permission to sell to my home baked goods in addition to our jewelry.  It kept the house warm.  It distracted me.  And, I could justify the warmth from cooking vs. turning the heat up higher to thaw out and wondering how much the utility bill is going to cost me this month…  did I mention I hate Winter?

Anyway, what started this blog is a topic I’ve been avoiding for a few months.  I’m drowning in anxiety, and the whole Jesus-is-the-reason thing as the holidays approach press all my buttons further, as I have too many good hearted people in my life who feel Jesus is the answer to everthing, including a stubbed toe, and are certain my health would be better and all my problems would magically disappear… if only I was a Believer.

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I’m drowning over here, but I’m not going down without a fight.  Winter will pass.   I’ll keep trying to find the good in the world while waiting out the passage of the seasons and our current political order. I’ll keep busy.

At the end of the day, I have everything I need, if not everything I desire, and I’m doing ok.  I just have to keep reminding myself of that truth.

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Fairytales

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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).

London Calling

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Well, I made it.  London, at last !

Despite my fears.

Despite the last 2 years of legal threats.

Despite the challenges of travel, including having my business class departure-only airline tickets cancelled without notice from anyone.

I made it to London after emptying my emergency stash of money in my bank account, and making traveling without a safety net my reality. (Scary, but I’m making it work).

I’m wide awake at 3am London time, having had a wonderful and exhausting time at Stonehenge and Bath today, and falling asleep right after dinner.  *That* is the reality of leaving home and one’s comfort zone.

Weird hours.

Wide awake AND exhausted at the same time.  Starving and surviving on rice krispy bars and water (as the food does NOT agree with me – even the hot dogs).

But here, capable, and curious about all that history has to offer.

On my tour today from London to Lacock to Stonehenge and Bath, it was the words of Pablo Neruda (spied on a plaque in passing) that struck me the most:

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This journey has brought me the joys of seeing Dick Francis’s world of misty fields and pastures brought to life from his racing mystery stories:

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To sharing an adventure with a very dear friend and bringing her the joy of getting in among the stones at Stonehenge:

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Running around and marveling at all the cozy Cotswold stone cottages and their lovely gardens, one could not help but feel that that the triumphs and tragedies of WWII and D-Day, Or WWI and Armistice Day happened just days past.

 

 

Red poppies were in bloom everywhere, reminding me of how much was lost in 1918 during WWI.

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…only to be repeated again in WWII and beyond.

Here live the ghosts of Man’s inhumanity to Man, along with some of his most inspiring creations made by Man to glorify a belief in a higher power, and a calling to each soul to be more to the world than a beast of burden; a brute, determined to destroy rather than create.

 

 

 

I could feel my Mother’s love all around me.  Daisies everywhere I looked (her favorite flower), and grave upon grave of strong women, buried with the children they loved and lost too young.  So many cemetaries we visited during my childhood vacations, as she struggled to come to terms with the death of my younger brother, Jimmy, who came into this world in hope and perfection, only to leave us all in 3 short days.  A SIDS mystery from which we both never recovered.

 

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Life, death, passion and endurance everywhere I looked.  So much beauty, pagentry, and the indellible mystery of how a land will keep renewing itself and its people.

I can’t wait to see what the upcoming days bring to this adventure.

 

 

Disengenuous.

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I was reading CNN this week, and found a very misleading article entitled,

What happens when a patient says, ‘Doc, help me die’”

It was an opinion piece, and I’m still furious at the life-at-all-costs doctor type deciding he knows better than me that there is nobility in suffering.

Rather than being honest with his patient that the matter went against his personal beliefs, he tries to turn the right-to-die with dignity movement into something demanding spiritual intervention.

Sigh.

According to the homily-based viewpoint of this Doc, “He who has a “why” to live can bear almost any “how”‘.

Really?!!

I have plenty of reasons to live, but if my body is not going to allow it, and I’ve been on this journey for multiple rounds during my 57 years here, what is the purpose of  denying me relief from suffering?

According to this doc, “We are sent to heal even when cure is not possible. What we should be trying to heal is often not physical disease or clinical depression, but a person’s sense of insignificance and hopelessness, which we cannot heal by eliminating the person.”

What the physician is willfully overlooking is the fact that one doesn’t need to feel insignificant, hopeless or clinically depressed to choose euthanasia.  One just has to be tired of the fight to live when they no longer have quality of life, cannot do things they used to enjoy without pain, or at all, and – last time I checked – none of us gets out of here alive under any circumstances.

Choosing to die in peace, at home in their own bed, is what my Mom wanted.  We made that possible for her.  It was humane.  It was loving.  I reject the doctor’s viewpoint that choosing an end to life is wrong.  If the doc can’t do what the patient asks – fine.

But, find the patient another doc who will honor his wishes, or set him free to find one who will, vs. trying to dress it up in pretty colors by dragging out the decline over weeks or months because you (the doctor) see some personal benefits to others suffering while under your care.

In reality, death needs help for one to die at home under hospice care, I will always go on record that I’m ready when my time comes, as fighting to live is exhausting with a chronic condition, and one has a right to avoid suffering needlessly.

That choice doesn’t make me suicial, depressed or morally bankrupt.  That just makes me a realist who plans ahead.

Unsupervised

Jesus Knows I'm right

I am spending a lot of time doing yet another round of paperwork for the Insurance Company, as they are trying everything they know to deny me my matching medical benefits.

Since I’m already in a pissy mood for having to justify my existence, seeing pictures all over the media and facebook about man’s inhumanity to man is draining the last bit of civility from me.  I’m in my own head without adult supervision, and it’s not helping.

In particular, I’m having problems with everyone (which says that the problem is my own piss-poor attitude) and their reliance on Jesus-Christ-as-their-PERSONAL-savior, to the point where some of my family and friends are calling on their “prayer warriors” on an hourly basis for everything including a stubbed toe.

Debate on Gods Favor 2017

Don’t get me wrong, I know I have it better than many as I have a safe place to live, adequate food, and enough funds to enable a life of luxury any way one looks at it.  Because, in a capitalistic society, anyone who sits on their duff and doesn’t work has a luxurious life.

But, as I read calls for “Prayer Warriors”, and referring to God as “Dad”, and bemoaning the fact that everything from a case of deteriorating sight to a new roof on the inn can be fixed by prayer, it just leaves me tired.

I don’t have the answers.  However, I do believe that prayers can’t hurt and should be a silent thing.  I don’t believe that prayers help anyone except the person praying offload a burden (kind of like writing this blog).

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And, while I’m not a fan of the atheist point of view, as often it’s confrontational and argumentative, I also believe in being practical, which many atheist/s appear to be:

 

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At the end of the day, I don’t know if Jesus knows or cares what any of us are going through.  But I have made the conscious decision to be the best person I can, and try and ignore all the rest of the “I’m right” b.s. about everyone’s invisible friend as the bible also says that “God helps those who help themselves”:

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Truly, I just don’t think that Jesus has a facebook account:

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Mentally Deficient – Not !

Or, not yet anyway…

Mentally Deficient

Part of the challenge of dealing with COPD is a lack of oxygen.  Lack of oxygen leads to exhaustion.  Lack of oxygen leads to gaps in thinking.  The only solution is plenty of rest, and planning ahead to avoid over-extending myself when the failure of my body to process oxygen as originally designed leaves me physically and mentally exhausted.

Oxygen deprivation / mental exhaustion is treated by rest.

Mental exhaustion driven by COPD is not a permanent condition, consistently predictable at every hour of the day.

It’s the good days / bad days juxtaposition that is causing the most agita within the insurance community.

Part of the challenge of dealing with my employer for the fight for survival benefits that I have paid into and worked to earn over this past 42 years is the fact that I don’t have 42 years worth of employers arbitrating my benefits earned over 42 years of payments, but rather I am dealing with the last employer to be holding the “hot potato” that is my earned benefit package.  The hardest challenge to fight has been the fact that the insurance company / my current employer have strongly implied that I am nothing more than a trained monkey, and need to be kept busy through the reward of hard work, and don’t deserve benefits because I am not “incapacitated”.  Or, not incapacitated ENOUGH.

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My employer’s insurance agency seems to feel that incapacity = not being able to enjoy life, drive a car, travel or otherwise leave my bed / couch / chair or house.

Apparently, being able to plan ahead to deal with physical and mental weakness = fakery.  Fraud.

So, it’s been very challenging to get dribs and drabs of paperwork describing what happens next after they agree that I am disabled / incapacitated.  So far, I have received 32 pages of paperwork describing how they calculated the $32k in benefits paid out to me.  I call this regurgitation of crap “disability math” or “new math”:

New Math

There’s lots more pages of paperwork they are sending over, too, but that pile of gobbledygook doesn’t have a single dollar attached to it, and contains nothing but page after page of threats about fraud, constant audits, and what disasters will befall me in the event that I am able to work and fail to report back to them that I am ready and able to hold down a job.

In particular, I find it ominous that it’s taken me 18+ months of fighting their denials to get the past-due benefits owed to me, and yet the paperwork received contains a threat of future denial of benefits and some sort of claw back due to fraud.  As if anyone in their right mind would WANT to give up a decent paying job and independence to be nagged to death and challenged about personal health choices at every turn:

Changing Scale for Defining Disability

I am not aware of anyone in this world reversing COPD and finding a cure.  (If they are out there, please speak up.  I want my life back).

I am not aware of any cure associated with avoiding disability-related depression by working at finding joy in life, or traveling, or driving a car (on my good days).  Such activities clearly have no way of becoming something that is able to cure COPD.  Apparently, though, my efforts to remain upbeat despite my challenges is causing my employer’s insurance company to believe otherwise.

Having dealt with denials of pre-existing conditions for my entire work life when it comes to paying out benefits that I’ve paid into, I am well versed in the lengths insurance companies will go to for profiteering over paying out its obligations.

But, having been put on Federal Disability – a pretty high standard and tough hurdle to cross – plus, having been a menace to others when trying to keep up a “normal” work schedule – I find it absolutely aggravating / depressing / maddening to continue to receive reams and reams of paperwork that talk about what disability means, and how it changes over time to not be as debilitating as originally thought.

Seriously???

If I didn’t have a mental health issue before starting this journey, I think I would reasonably acquire one over time after reading pages and pages of this crap.

All of this baggage, however, then brings up my final issue… the belief that I can think myself well.  The soul-destroying thought that something within me is driving me to self-sabotage by ruining my life via a “convenient” disease / birth defect.  That little voice in the back of your head which sows seeds of doubt and has your brain on a whirlwind of unproductive “shoulda / woulda / coulda” thoughts about how I’m at fault for not being well.  Not being good enough.

I’ve already been through this with my brother’s brain cancer, and I know he was a good enough person with no self-defeating thoughts to give himself brain cancer and thus end his life way too young.  But, I saw what the “happy thoughts” belief system did to bring him grief, and to make his efforts to live and stay in this world the hardest battle he ever fought.  Big Bro was an athlete, in superb physical condition.  If anyone could have found a cure through happy thoughts, prayer warriors and positive thinking, it would have been him.

Folks, I am not a Christian Scientist, and I don’t believe that the world revolves around any belief system contained between my two ears.  I have a birth defect which was / is a physical problem that fluctuates between good days and bad days, and which worsens over time.  This is a condition which has worsened despite multiple surgeries and related medications to keep me functional enough to pass for normal.

At what point will the insurance company accept that I’m as good as I’m going to get, am still declining a little bit more each day, month and year, and just leave me the breathing room to be thankful I’m not dead yet???

Would they rather pay out benefits to people who I killed because I thought I could believe in myself hard enough to deny the reality and repercussions for continuing to live in denial of my worsening health???  Three+ car accidents is enough of a real life example that it’s time to accept one’s limits when dealing with oxygen deprivation and exhaustion while trying to keep up and pass for normal.

No answers here, but this gives you an idea of the garbage that’s still in the back of my brain as I try and figure out how to keep as healthy and independent as I can DESPITE finally making some progress on this benefits issue with the powers-that-be.

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