Risky

via Daily Prompt: Risky

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Having a chronic illness and a DNR preference highlights just how risky every choice I make can be to my overall level of health and wellness.

I’m in the middle of construction to improve my rat trap of a 41 year old mobile home.  I’m also living in Northern California, hiding from the poor air quality due to the ongoing fires.  Unfortunately, I can’t hide from the very risky need to breathe, so I have caught a lovely, streaming head cold as the warmth of Summer gives way to unpredictable weather, allergens and fires has hit me squarely between the eyes.

Being a DNR chooser due to my complex and chronic healthcare issues related to COPD (Chronic Obstructive Pulmonary Disease), plus my failing liver (due to the various treatments I’ve tried over the years to remain well, or, as healthy as I can be given my crappy lungs) is not an emotional choice.  It’s not risky.  Instead, it’s simply practical.  The truth of the matter is, despite all the challenges and risks, my body keeps on fighting.  It’s busy relentlessly fighting, and I just want a nap.

My birth defect damaged body is fighting to live, to take a deep, full breath.  To be well.  I get it, even when I find that I have zero energy for what * I * choose to do.  However, my body apparently has found a way to tap into energies that I cannot see.

Nights are the worst.

Not that the days are any fun, when you’re trying not to cough (as your ribs hurt like crazy from your coughing spasms), and yet the wrong inhale triggers a coughing spasm as your lungs fight desperately to expel the bloody crud clogging them.

Somehow, though, it’s easier to believe you’ll make it through the day.  A day with the sun shining and the welcome sounds of neighbors going through their lives, whistling.  Banging trash bins together.  Juggling grocery bags to get everything into the house in as few trips as possible.  Normal sounds.  Comforting noise.  Life.

The anxiety of fighting off a cough in the daylight isn’t half so challenging as doing the same battle overnight.  In the darkness.  The only one awake.

By midnight or 2am, you’ve been up and down multiple times.  Sitting up in a chair, trying to breathe without coughing, and your boney butt is killing.  Your legs are swelling because you didn’t have enough energy to move around much that day, and you just want to lay down, as flat as you can, to get an hour’s rest.  Rest before your lungs are filled up, again.  Rest before you’re up and coughing, again, trying to stop the spasms.

I know that I’m fine.  I have plans for the future which cover the next 9 months or so, and I’ll be damned if I’m going anywhere that doesn’t involve a caribbean cruise  or a trip to the British Isles next Summer.

I have done my best to prepare for my life, ensuring I have a roof over my head, food in my belly, and I’ve made my deductible for the year so my medicines are covered.  My money is stable for now.  So, believe me, I know it could be much more difficult.

I know I have things better than other folks who are suffering constant pain.

I know I have things better than the folks that have lost family members, their homes and in some cases their jobs, as the fight against the Northern CA Fires continues.

But, this pity party is about my tiny world, and my worries as I handle my own risky business and related choices.

I keep pushing the liquids and doing what I can to simply endure the anxiety while waiting out the congestion, the feelings of imminent suffocation, and fighting to win this battle once again.

Who knew breathing, or simpky trying to breathe, was so risky?

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You’re Missing

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I’ve been feeling a bit melancholy, even though everything is fine.  I’ve had this Springsteen song going through the back of my head as it gets colder and Fall creeps in, so I’m doing my best to shake it off like the nonsense it is.  This time of year always makes me restless that I’m running out of time and losing prescious minutes that will never come again.

So, background:  I left my home in 1985 because my Mom had a rule that everyone had to be out of the house by 25.

While I lived there, I paid rent (once high school was done, and I wasn’t a full time student).  I paid $30 a week – $120 to $150 a month, depending on the number of weeks in the month.  I also negotiated to pay my mother more each week in rent as I understood the purpose of the exercise (to avoid homelessness and prioritize my income to be able to afford my life’s responsibilities and make a plan for my future) and I found Mom was under-charging me compared to what I’d have to pay in reality once I moved out.

Nothing that I looked at for moving out was up to Betty’s standards.  After a number of frustrating attempts to find an acceptible place, I decided to break out on my own and move to California to see if my life would be better here.

$280 a month to live in a Winniebago in the back yard of a wealthy drunk, but it was mine and I loved sleeping and waking in the wilds of Portola Valley, with deer and bunnies running through the horse paddocks.  Plus fog, sunshiney rainbows and pouring rain vs. snow in the Winter.  It was good, and it freed my soul to become who I wanted to be.

That being said, though,I am grateful every day that I moved at a time when phones and planes existed, because it allowed me to call and visit as much as I could afford to do, despite my crazy choice to leave everything I knew and strike out on my own, far from Betty’s loving arms.  (I was her “precious”, which made our loving co-dependency something that needed shaking up in order for us both to accept that I was mature and responsible for my own mistakes and good choices, far from her loving, and sometimes crippling, support).  Moving evolved our relationship into something more than I ever thought it could be.  I still miss our Friday night conversations.  (We’d talk all the time, off and on during the week as a thought struck either of us, but Fridays were a guaranteed time to chat for an hour).

I am thankful every day over the training Betty gave her kids about priorities for home training.  It’s truly helped me enjoy exploring this world and make my own choices to highlight travel adventures and experiences over amassing too much stuff, as there are no do-overs in life and you can’t take it with you.

Along the way, though, I have made some hard choices that have slowly cut me off from my family.  Absence truly DOESN’T make the heart grow fonder when you’re not there for the daily grind, the boring stuff, the hard choices or the young explorations into a larger life.

While I can’t point to a clear cut answer for why my extended family isn’t a part of my life in a meaningful way anymore (beyond the known problem with my Baby Sis), it’s sad to see carefully nurtured long-distance relationships ignored and / or abandoned.

I don’t know if it’s because they are guys, and society is more lax in demanding they carry their social obligations themselves.

I don’t know if it’s because of earlier choices in who to align with among family members for moving forward when picking boundary lines… whatever it is, it’s still something that leaves my heart echoing with the silence and emptiness for missing people I feel are key members of my immediate family.

As a highlight to this issue, and to illustrate how truly petty my feelings are,  I didn’t get a single birthday wish from any of my nephews on FB. Yes, I know it’s ridiculous to be bent out of shape, but is it really that hard to see the notification and NOT simply pile on with a generic “happy birthday”?

I am grateful that my niece-in-law wished me a FB happy birthday, but I am not at all happy to be ignored by her husband and the other boys.  Her effort does not mean # 1 is off the hook for his own manners and social mores.

Especially significant, though, is the absence of any comment from # 4, with whom I’ve always had a chatty relationship – on or off FB.  A true extrovert, nothing keeps him quiet.  Until this year.

I know life changes things.  I know that the early passing of my Big Brother impacted us all.  For whatever reason, his boys, # 2 and # 3, get a free pass because he’s no longer here and they’ve never been good about manners or FB.

# 1, however, was partially raised by his Grandma, so I know he knows this tiny courtesy is critically important.  Heck, he helped me drive to Massachsetts after Betty fell ill, packing up and shipping out or helping me get rid of my stuff, so I thought we were stronger than time and distance.  It’s sad to see him slipping away, though.

# 4 is more like me, competitive, so he knows what is appropriate, even if he chooses not to do it.  He had Betty’s influence, too, and has always met me half way, even though I’ve lived so far away.  He’s been busy with his life, juggling a successful rock band, east coast appearances and promotional work, plus a day job AND college, so I get it that he’s busy.  I’m just sad to know he’s too busy for even a passing “hello”.

# 5 is an anathema to me.  Mama’s “precious” from the get go, he’s always gone his own way, so I never expected much from him as he never had to do anything more than show up to get credit.  (Not sure if he suffers from extreme social anxiety, or has just found a way to shrug off any social expectations as a talent, but he’s a shy guy, and a manly man, so the threshold has always been very low in his case).  I get it, so he gets a pass, too.

While I’m thrilled all my extended family boys are doing well, it’s sad to see them completely unwilling to shoulder any kind of bare bones social obligation to me, a family member.  And the silence from the two most connected to me, # 1 and # 4, is particularly sad.

I know, I know…  My choice was made long ago to live out here in CA, and to remain single, but it’s a chilly wakeup call that aging and distance hasn’t been kind to weakening familial connections.

Rather than dwell on what’s missing, though, I love them long distance in my heart and just wish they were closer.

We truly are lazy as a family, and I know that I’m just as guilty for making the decision to move all those years ago which brings me to where I am today.  Cut off from my immediate extended family.

To misappropriate Bruce Springsteen’s 9/11 song, “You’re Missing”, this is how it feels.

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Shirts in the closet, shoes in the hall
Mama’s in the kitchen, baby and all
Everything is everything
Everything is everything
But you’re missing

 
Coffee cups on the counter, jackets on the chair
Papers on the doorstep, but you’re not there
Everything is everything
Everything is everything
But you’re missing

 
Pictures on the nightstand, TV’s on in the den
Your house is waiting, your house is waiting
For you to walk in, for you to walk in
But you’re missing, you’re missing

 
You’re missing when I shut out the lights
You’re missing, when I close my eyes
You’re missing, when I see the sun rise
You’re missing

 
Children are asking if it’s alright
Will you be in our arms tonight?
Morning is morning, the evening falls I got
Too much room in my bed, too many phone calls
How’s everything, everything?
Everything, everything
But you’re missing, you’re missing

 
God’s drifting in heaven, devil’s in the mailbox
I got dust on my shoes, nothing but teardrops
Songwriters: Bruce Springsteen

Freefallin

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Tom Petty died yesterday.

I didn’t expect it to effect me, but it did.  Why?  Because I always liked his personality, even when I didn’t really care for his music.

Tom was a pioneer.  In music.  In bankruptcy court.  In copyrights.  In thinking things through, and being able to translate those moments in time into a 3 minute earworm that just won’t leave your consciousness.

He wasn’t perfect.

He was stubborn.

He wouldn’t quit, even when he couldn’t express himself well.  He just had the courage of his convictions to sustain him in any fight.

Thinking ahead, knowing that he had more money than might be good for a person, he put a plan in place about his final wishes.  He didn’t want to linger, tethered to equiment – just because he had the funds – if he could not be returned to the life he’d enjoyed and be fully functional.

Thinking ahead, his family knew what to do if he ended up hooked up to machines.

First responders did what they could to save him after he was found in cardiac arrest.  They tried.

That being said, though, his executor of his estate (family or someone else) made the final call to unhook him when it was clear that he needed life support in order to survive.

They respected his final wishes as outlined in his healthcare directive.

Left to its own devices, his body continued its functions until it slowly ran down to his death.

When the time comes, have your paperwork executed and make your wishes known.  Don’t leave your survival to the tender mercies of professionals who are driven to save people at all costs, or family and friends who cannot accept the inevitability of death.

A DNR is the kindest thing you can do for yourself and your loved ones.

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Return-to-work Survey.

Seriously.

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I know that my employer and its insurance agent considered me a faker, a la the picture of the former police officer, above.  Today, I learned that I’ve been miraculously cured, as they think I have reported back to work.

 

After spending the day running around trying to complete forms for Social Security Disability Insurance agents, I got the most bizzare phone call from the former employer’s Insurance Program Administrator asking me a few questions, “…now that I’ve returned to work.”

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Seriously ? ! ? ? ! ! ! !

They terminated me in early May.

I’ve been paying for COBRA insurance for the past month or so (and was just denied insurance coverage today, when I went to re-order my medicines).

So, to not mess up the timing of my medications, I’ve had to go back to paying for my own flu shot out of pocket (a la the pre-Obamacare days).  Now, I also have to actually go through all the mail or make the dreaded phone calls to learn where my new insurance card may be.  If such a card exists.

For a company that has done nothing but deny my benefits, harass me within an inch of my life, and then congratulate me on returning to work as part of it’s “quality” survey, should I be surprised that my insurance appears to have been cancelled?

Today’s quality survey questions were along the lines of:

  1.  Regarding your recent claim, on a scale of 1 to 5, with 1 being poorly and 5 being excellently, how do you feel we handled your recent claim?
    1. Answer:  1 – poorly
  2. Regarding your return to work, we have just a few questions to you about how well our services worked for you.  On a scale of 1 to 5, how helpful were we in getting you back to work?
    1. Answer:  N/A – I didn’t go back to work
  3. Regarding your disability, how well did our service claims administrators work to aid you in recovering your health and returning to work?
    1. Answer:  N/A – I didn’t go back to work
  4. How likely are you to recommend our services to others?  1 is unlikely, 5 is highly likely.
    1. Answer:  1 – highly unlikely.  

I could go on, but the nightmare scenario continues and won’t improve through repetition.

I acknowledge that I have been terminated from my job as a way to try and wiggle out of their disability insurance obligations to me.

Social Security Disability is now also challenging the supplemental benefits I finally received after 18 months of fighting to obtain what I was promised as part of my employment package.

And, the employer’s insurance carrier started its challenge of my continuing to receive supplemental wage benefits 9 months early (the time for challenging my ability to work wasn’t supposed to start until March 2018, at the earliest).

I’m doing fine, but my attitude could be better.  This whole issue of miracle cures for me and some phantom job are just the frosting on my cake of a 2-year anniversary for accepting my disability, leaving work in order to improve my quality of life, and being on disability benefits while hoping it will be enough to give me some actual quality of life vs. simply being a game of endurance.

So, did I ever tell you how much I hate the Fall?  Things turning brown and dying / atrophying everywhere.  Wet, fog, gloom.  Early sunsets, late sunrises.  I hate the shorter days between now and February.

October is becoming a whole other reason to want to hibernate through the Winter.

Unless, of course, that miracle cure arises.  “It’s a miracle.  I’ve been healed!”

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Twilight

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This is another blog that I’ve sat on for awhile, as I’ve been a busybody throughout the Summer, and it came to a head in early September.  So, now I’m ready to purge it and move on.

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Yesterday was a rough day, but I very much enjoyed the snippets of farming life I could see from the road as I drove home.

It was particularly uplifting to notice what appeared to be a wedding or a Saturday Night yard party coming together in the fading of the light.  I couldn’t find a picture which perfectly captured the mood I felt as I drove by, watching a duded up young man, in his best jeans and silver-buttoned vest, heading into the party.  He captured my eye as he walked down the white fenced lane between paddocks, heading for the music and the welcoming lights, with the beautifully placed white linen tables under a white party tent festooned with hanging lights.  It was in my view for just a moment, but the hopefulness and glory of the captured image lightened my heart.  It truly does take a village, and I was seeing that unfold in a more hopeful manner for me as I drove off into the twilight at the end of a long, tiring day.  Why was I so tired?

Because I’d spent the day being a busybody.

A friend of a friend reached out to me earlier in the week with a message that typically goes like this, “J, have you heard from C**** lately?”

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Having dealt with some back and forth, and having called Adult Protective Services because this mutual friend is again behind on her rent and apparently unable to maintain a stable living environment, I did what I thought was best, possibly going over the line into busybody-hood, and laid out the particulars:

– The 7 years of continual decline

– The move to the boonies to survive financially

– The failure to make a financial deal and keep it up

– The emergency room visits from falls

– The complaints for lack of care / mental health resources

– The possibility of being kicked out due to late payments of rent

– The bug problem infesting the filth in her apartment

– The utilities being cut off

– The inability to follow through and get help

Mental health challenges truly are a community concern, as well as a privacy issue.  Balancing those concerns for managing individual rights vs. helping someone see they are a danger to themselves and a risk for falling into homelessness adds an extra level of stress.

So, I called Adult Protective Services on Friday, and paid a surprise visit on Saturday.  With a 2-1/2 hour drive each way, it’s a very long day.

My doc started me on Metformin (and I don’t know if that’s making me tireder or is just part of my own disease progression), but I got through the visit by eating and drinking constantly as I tried to both be supportive without being an enabler.

Clearly, I frustrated the heck out of my friend, as she kept looking for someone to be angry with, and I kept bringing her back to me – the busybody in front of her – versus who had “betrayed” her situation to me.

I left her with the promise to drive her around if she wished to come down to her old neighborhood to visit her friends (she would be using train tickets previously paid for by her brother-in-law but never used, I believe).

I also told her that I’d be back at the end of October if I hadn’t heard from her by Halloween.

Flash forward to the middle of September (at least 2 weeks since I’d been to see her).  The phone was again disconnected, and I’d heard that her brother-in-law had passed away.  Knowing that she may not know what was happening, and that there was no way to reach her without her cooperation, I left her a simple note on facebook (that tool of troublemakers everywhere, haha) that I was sorry to hear of her brother-in-law’s passing, offered my condolences to her and the larger family, and offered my services if she needed transportation.

What I got back was a message that I was to leave her and her family alone and butt out of her life.

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Was I trying to provoke her in order to make my handling of her problem go away?  No.

Was I trying to make her crazier?  No.

Unfortunately, because I know boundaries, I have alerted the authorities that there is an elder in need of care services, and I must now let the wheels of aid grind along in the hope that they will find a way to help her, while also butting out myself until (if) she ever opens the door to me again.

I’ve done what I could before walking away because I truly do feel that Adult Protection *is* a community responsibility.

However, it doesn’t make me feel any better about abandoning a friend because she needs more help that I can give her, and she won’t accept help from the social services teams empowered (and funded) to provide such assistance.

This is now the second friend with mental health issues that is out of my life.

While I am sad, and struggling with the loss of friendship, I also can’t see where I could have done anything differently.  Until you contact the powers-that-be to see what can or should be done, non-expert friends and family are working blindly and doing what they can to prop a friend up without being swallowed whole themselves.

So, my village got a bit smaller, and I’ve been in mourning that I didn’t know what else to do.  I’m doing better, which is why I’m finally able to publish this blog, but I’m still uncertain about what more could have been done to avoid losing the 20+ years of friendship I’ve enjoyed with this woman.

 

 

Identity Drama

This blog has sat on the shelf since June 2017 as I was digesting the sight of an 8-year-old boy who feels that he is a drag queen who should be called, “Lactatia”

Re:  a version of the original story:  Is this child abuse?

Next – my thoughts as they relate to the bigger picture for why clothing and personna are so important for being able to “pass” safely in society based on being who you are by how you choose to represent yourself.  While I’m all for the parent’s being supportive of a child’s stated choices, I also feel that someone 8 years old would not be this well-versed in drag queen mannerisms / his own exhibitionism if it weren’t for early conditioning by his parents.

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Society tells little boys and little girls EXACTLY what it expects from them in terms of gender identity and social personality modeling from the minute they are born. We cheer little girls in Mom’s heels and experimenting with makeup, and we enjoy letting little boys “shave” with Daddy, among some of the most basic intimacy exchanges and shared experiences between parent and child.

The rituals and choices the parents and immediate social settings make regarding a child’s gender displays are a community issue and modeled to children from the moment they are born, with the cut, colors and choices of clothing reinforcing their Society’s expectations of ones gender role, and how the parents dress the child also indicating support or disenchantment with that stereotype.  Whether ones parent(s) is “pro” the larger society preferences, or “anti” the gender-assigned role that Society demands in the form of dress also dictate much of what Aunts, Uncles, Grandparents and extended family gift to the child to welcome it into the world.

Kids are going to be who they are, regardless of their age and social conditioning.  As members of various social, economic, race and religious communities, plus the added nuances of their regional differences world wide when comparing the same categories over time and space.  We, “the village”, are going to do our best to use a child’s biological gender to teach them about Society’s expectations of their role in life as a way to keep them safe.

Whether we are hostile or receptive to a parent’s and/or a child’s choices colors a child’s experiences in everything they think or do while their characters and ethics are being molded into the adult versions of what “Society” (their family, culture, economic and social status) will tolerate with the least amount of pushback or challenge to the intelligence behind the physical gender.

Gender identity is both a physical fact (we seek instant identity as a boy or girl / man or woman for determining a person or crowd’s potential threat level as an atavistic, reptilian response in the back of the brain) as well as a social form of currency.

If others can quickly stereotype who a person is, it determines THEIR OWN hostility or threat response for flight or fight reactions in any social situation based on the assessor’s own need for physical safety.

While this is a tough concept for many people to accept, that we care because of our history in terms of caveman mentality and tribal warfare, the reality is that it’s impossible to separate our expectations of others based on their gender cues.  It takes hard work at “deconditioning” ourselves in order to see the person vs. the socially trained potential threat.

Once we understand that we’re not going to want to be able to continue the species with every person we meet, on a 1:1 level for being physically / biologically able to accomplish that goal, and stop expecting that species survival initiative to be our first subconscious priority to “resolve” when meeting others, we can then move on to determining what we choose to prioritize as individuals establishing our own rituals and Social mores.

Once a peaceful Society is able to intellectually accept that war / tribal warfare risk in a peaceful society that considers itself “civilized” means that it should work hard to ensure it’s 2nd subconscious expectation of an immediate answer to protect ourselves when meeting others causes lots of unnecessary violence in the world, we can then step back and realize that every facet of our lives is a mental construct for the social and cultural safety of ourselves and others.

This kid and his or her supportive parents harm no one in how this child is being raised as we, generally, don’t live in a war-like society in the USA.

NOTE:  If we were in a tribal warfare area (say, Afghanistan) where gender identity is critical for determining to continuation of the species, we’d dress much differently than we do in the USA.  Women are in burkhas or other movement-hampering garments (for easier to capture by men), and such so called visually “protective” garments, are immediately singled out by threat assessment cues in their clothing as less likely to fight, so that the men can be the focus of the majority of the genocidal warfare attacks.

When one adds in their relative economic status for determining racial or cultural “freedom” for stepping outside the social “norms” or mainstream for expectations based on gender, it also makes a huge difference in whether or not that child is seen as prey (girls) or defenders / aggressors (boys) if one lives in a generally more tolerant, non-warfare environment.

Vacuuming Sucks.

I’ve been working on this living room for more than four (4) hours, as it’s important to leave a clean and organized house when traveling.

Or, so I’ve heard.

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I’m sitting here, catching my breath and dreaming of a nap.  I’ve hoovered and washed the lace curtains.  I’ve vacuumed in bits and pieces.

Then, Herself strikes.

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Four (4) hours worth of exhausting effort, and she strikes. I think she’d be happiest if we truly did live in a hoarders paradise.  Gawd knows she has the slobby manners.