Others

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Playing well with others is an important skill to have.  Unfortunately, others often come with germs, which are my kryptonite.

Thrilled to have gotten out last night.

Thrilled.

But, I was next to a germ-filled and shedding everywhere young woman who should have stayed home.  She was miserable, but determined, and now I am miserable but resigned.

I got some chicken noodle soup in me before going to bed last night.  While it helped me feel a bit more comfortable for sleeping, the end result is the same.  There’s not enough soup or kleenex in the world right now, and I’m freezing again.

The crowd was huge, over 12,000 people.

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The night was cold, but tolerable for walking to and from the venue from cheaper parking.  I only had to slow R down a few times from walking too fast, and I got through the broken elevators and not-to-be-taken stairs with the aid of pursed lip breathing and climbing slowly and steadily.

Got to see some new talent – Gina Buillon:

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And some existing talent – Alfred Robles:

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While I missed Marteeeen! Moreno, I escaped my tin can home for a few hours, which is always a blessing.

Whatever you’re doing today, I hope you make time to get out and about with some good friends.  Congenial traveling companions as we make our way through life are essential to the quality of that same life, and it looks like Gabriel is still the master of making work look like he’s having fun.

 

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Breakfast

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My magical elixir against reality.

Every two weeks or so, I have to pack my COPD and NAFLD and diabetes medications and supplements.  I pack them in a grab and go plastic baggie for each day so that I, a) Don’t have to think about or deal with assembling the magical stones meant to offset mortality, and, b)  Do my best to comply with my medication orders while also supplementing my Rx’s with dietary magic to make up for the fact that I don’t eat fruits and veggies, and with the hope that these vitamin fortifications will help me beat the reality of my physical frailty.

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I have a daily diary I keep, as if that will offset the Endocrinologist’s belief that I am gorging myself daily on sugars and carbs, sodas up the yin yang, and working to actively sabotage my various doctor’s efforts to keep this old carcass upright and moving.

I also try and cook most of my own meals to ensure I know exactly what I’m putting into my body, and that any forbidden sugars and carbs were in my diet with purpose and pre-planning.

Tonight, I’m going out to see Gabriel Iglesias, Stand Up Comic, and enjoy the crowd, the laughter, and share a moment with my buddy, R, who also loves stand up.

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So, knowing that I have to be able to stay awake for an extended period of time, and knowing that I don’t want to miss any part of tonight’s performance by mis-using my limited number of “spoons” for the day, or eating the wrong thing, etc., etc., etc…  I’m sitting on my couch and being oh so good.

Perfect, even.

I’m up.  I’m showered and groomed and resting.

I’m perfectly aware that one wrong decision could leave me exhausted and unable to hide my chronic condition, so I’m behaving.

I hate behaving, but I understand that’s it’s for the greater good.  I understand that self-sabotage by fighting against my reality hurts no one but me.  And, I’m ego centric enough that I want to pass for normal for as long as possible, whenever possible, so I do what I actively dislike and live a regimented life.

 

As Springsteen says in his recent Broadway show, it’s like my own litany of “Church, school, homework.  Church, school, homework.  Greenbeans.  Greenbeans.  Fucking greenbeans.”

In my case it’s:  Get up.  Take my meds with whatever food won’t derail my plans for the most energy in any given day.  And repeat those fucking steps ad nauseam until the weather improves so that I can leave this tin can of a home, or until my next trip comes around.

I know I have it better than so many other folks who can no longer leave their rooms or their homes.  Who are confined to a hospice bed in a hospital waiting for the end.  Or worse, who are out on the streets, truly destitute and without a place to call home.

But, as I sit here contemplating my medicated breakfast of champions, I just hear Springsteen in my head making me laugh.  “Greenbeans.  Greenbeans.  Fucking greenbeans.”  Yep.  It could be worse.

I might be at home in my childhood, dealing with my daily medication routine under the watchful eye of my mother, and facing a dinner of creamed peas and tuna.

Find your laughs where you can every day, and find a way to accept reasonable compromises so that you can do whatever you still desire to do despite the odds stacked against you.

Whatever you do, though.  Stay away from that fucking creamed peas and tuna.

Deadlines with Infinity

Trip is a man with 3 first names as his moniker.  A veteran.  A proud man.  He’s coming to the end of his battle with COPD.

Westpreußen, Russlanddeutsche Flüchtlinge

He’s as skinny as a rail as the fight to breathe is stripping the fat from his body.  He’s in tremendous pain from tumors in his lungs pressing on his heart and lungs.  And he’s spending every day waiting to die when it’s not yet his time.

The man has lost well over 60 pound on his 6 foot 2 frame, but at 149 pounds he’s still getting up and driving and being ornery with his wife.

We have a group chat, a bunch of us from the COPD site, and Trip is expecting that his scans on Friday to see what’s going on with his heart and lungs will offer new hope for surgery.  Even though he’s been told that he’s too frail to operate on.  Even though they have been telling him for months that his only hope for pain management is hospice.

He is not going to go quietly into that everlasting night.

Instead, he’s badgering the Docs for a timeline as to when he will die, even as the rest of us counsel him that it’s not yet his time.

(In general, we find that dying is pretty predictable.  Folks have more exacerbations, they sleep more.  They stop caring about the world and go to bed and don’t get up.  Like my conversation with B, the boat captain, our team conversations are about dealing with our fears and finding a way to accept that we are dying.  Just not today.  Maybe not tomorrow.  There is no way anyone can give a person a timeline.  There is no date stamp on our feet).

I guess this is why I keep planning trips.  As long as I have something to look forward to, maybe my time won’t come any time soon, too.

We’ve all been there. Wanting the waiting to be over.  Wanting to know “when”.  It’s an unanswerable question as no one knows until one starts sleeping all day, being hard to rouse and stops eating, that their time is nearer.

We go out with a nap, and very rarely with a heart attack or during an exacerbation.  If we’re lucky, hospice respects our wish to end our struggles and helps us along with easy access to morphine to the point where we just stop breathing and aren’t in pain any more.

That’s how it was for my Mom.  That’s how it was for my Big Brother.

In Mom’s case, she didn’t die when she thought she was going to.  I was pestering my brother and sister long distance, and telling them to go lay eyes on her, that she wasn’t answering the phone, and I was 3,000 miles away and knowing that she wasn’t doing well.

Baby Sis found her.  Found her and called the ambulance and cleaned up the mess and got her into the hospital.  Only to lie to me for 9 days straight about what was going on, until the night that she called and said Mom was dying and I needed to be on the plane immediately.  Day 8.  35 pounds lighter, because Mom wouldn’t eat the food and had mentally checked out while trapped in the hospital.

Baby Sis accused me of willing our Mother to live.  That I was keeping Mom alive against her will.  Nothing that was said to the contrary was listened to, and I had to deal with Baby Sis’s railing against fate that Mom was in limbo and wasn’t dying fast enough.

So, after 3 days at home and fighting to get Mom’s wishes respected, I got her released from the hospital and brought home to die.  But, Mom perked up.  She thrived under Hospice care, and she had another, final, year with us before saying her final good byes.

We had a final game of scrabble on a cold and snowy Friday as I stayed at home with her, and she had a final meal (but for the life of me, I can’t recall what it was – just that she enjoyed it).  Mom went to sleep on the couch on Friday night after our last game of Scrabble, and then she was occupied with her dreams and visitors in her memory (or, maybe it was God and his angels – I’ll never be able to say).  I tried to rouse her once or twice to get up and use the bathroom, to eat, to go to her own bed, but she wouldn’t have any of it.

So, I slept in a chair by her side throughout the weekend, trying to ensure that she didn’t fall off the couch in her restlessness, and not wanting to leave her alone as something inside me just said that it was her time.

Monday morning dawned sunny and warm, with the recent snowfall melting, and my Big Brother came by again to check on her, and helped the hospice nurse move Mom into her bed.

With the sun shining on her as she lay in her bed, Mom passed peacefully in her sleep by 10am that morning.

In Big Brother’s case, which happened 6 short years after Mom’s death, he did everything he could to prepare his boys for adulthood.  His youngest had just completed his first year of college, and his oldest had just graduated on May 22, 2011.

I was back on the West Coast dealing with Las Vegas Auntie’s drama, and on the verge of homelessness from trying to care for her while getting her rehabbed and back on her feet.  I saw my brother at his oldest son’s graduation, and then he’d taken to his bed and was gone by June 1, 2011.  Peacefully, at home, in his favorite chair with all of us in attendance.

While I, too, face my own mortality, and know that they had a general forecast of 3-5 years for my stage of the disease when I stopped working, I have since passed the 3 year mark and am still doing well.

Will I make it to year 5?  Year 10?  No one knows as long as I stay stable.  So, I keep busy and try to be of comfort to others of my kind who are afraid of dying and want to know when they will be released from their worries.  It’s hard to say to them that they won’t have a date with infinity until they no longer care about life, but that’s what I’ve found to be the case.  I am not an expert, and I don’t want to be a caregiver or be dependent, but the reality is that life continues long after we’re tired of living.

So, rather than spending my time fighting with loved ones, I choose to go this road alone until my time comes, too.  Hopefully, my money will last and I will find a way to enjoy life despite any fears or worries.

 

Frailty

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I have a real hard time dealing with homelessness.  But, it’s hardest to deal with when:

– It’s a woman

– It’s raining

– The homeless person tries to connect with me to beg for money

In tonight’s encounter, I’m running around doing errands, spending money I don’t really have, but getting done what I must.  I’m also trying to get ready for a comedy show on Sunday night, so I’m trying to get spending money from the bank, gas up my car, and do all the other things that one does to prepare for a fun event with a friend.

So, it’s been pouring off and on all day, and I need to fill the tank.  Thinking about the route I’m traveling and the cheapest place to get gas without back tracking between where I was at and home, I decide to hit a local gas station that’s looking a bit seedy.

I do a run around all the pumps, and there’s some boards up by the garage doors, but the shop door is open.  All the pumps ONLY sell 87 regular gas, which is fine by me, but still weird.

So, I do the run around the pumps and end up parking farther away from the storefront than I would normally choose, but it looked safe.  Foolish me.

As I’m pumping the gas a seemingly homeless woman comes up to me and starts to beg.  I give her the hairy eye ball and gruffly tell her, “Not while I’m handling money!” in a firm voice.

As so many of the mentally frail do, she steps back immediately, hurt, and walks away upset because she feels I yelled at her.  She stops and says to me, “It’s ok to talk to you on the street!  I didn’t do anything wrong!” as she continues to walk away, agitated and upset.

Now, I don’t know this woman from Adam.  She’s not one of the regulars that I can recognize on sight.  But, she’s upset and I feel like I’ve kicked a kitten.

So, I proceed to fill my gas tank while keeping an eagle eye out.  She keeps an eye on me, and approaches a man coming out of the storefront, and he shoos her away, too.

The weather is miserable.  She’s mostly clean.  But, she’s in sandals and it’s wet and raw out.  She’s got a blanket over her shoulders, a hat on her head, and she’s layered up with these ridiculous bare feet in sandals.  Sad.

So, now I’m kicking myself for being so paranoid that I scared a sad homeless woman.  She could be me.  She could be my friend, C, who is now in the board and care home up in the Inland Empire area near the boonies…  I’m feeling like shit, when I was just protecting myself.  But, I need to make amends.

So, the car is full at 36 dollars, and I pull a $10 bill out of my wallet, heading toward the homeless woman who is now pacing and watching me approach.  Clearly, she’s in fear as to why I’m heading toward her after yelling at her.

“Look”, I say.  “You should NEVER come near anyone, but especially a woman, when we are filling up our cars and trapped at the pumps.  You scared me, and I worry about being mugged.  Now that I’m done filling my car, what did you want to ask me?”

Like a bird, she looked at me sideways, trying to smooth her ruffled feathers.  “I really just wanted to know if you could spare anything” she says, over the cigarette in her mouth.  “I’m sorry I scared you.”

“I’m sorry I upset you, too.” I replied.  “I appreciate your backing off when I asked you to leave me be, and I’m happy to share what I have with you in the hopes that it will help you in some small way.”

She smiles like a little kid at Christmas and takes the money.  “Can I give you a hug?” she asks, tentatively.

Now, anyone who knows me knows that I need my space and hate to be touched, but this was not about me.  This was about letting this woman know that I saw her and saw her humanity in a very difficult situation, so we hugged.

Not to miss an opportunity, she then asks if she can use my phone to call a friend for a ride.  I had to smile and let her know that I don’t carry a phone.  I’m not sure she believed me, but that’s ok.  I wasn’t going to be able to resolve her difficulties, but we’d come to terms so that I wasn’t adding to her burden for that small moment of time.

Frailty.  It comes to us all, and I’m thankful that I have a roof over my head on this Wintery, wet, night.  I still have $10 for my share of the concert parking tomorrow night, and life goes on.  Compromise and sharing a tiny bit of what I have allows me to look at myself in the mirror, even if the money goes for cigarettes and alcohol.  With any luck, it will go toward a nice meal and a dry place to sleep tonight, if she can find enough folks to pitch in.

Der Orange Doofus, however, is determined to divert money from our already weakened safety net, and it hurts me that people like this woman don’t have better resources than what she can beg on a rainy evening.  There but for the luck of the draw go I.

Thinking

Melanie got me thinking in her latest SparksFromACombustableMind blog, “Getting to know you“.  So, before I do what I came here to do tonight, I’ll start off by answering her questions.  Anyone reading this can feel free to jump in or not, as they wish.

QUESTIONS:

What keeps you up at night?

What’s the most surprising self-realization you’ve had?

What’s the most illegal thing you’ve done?

What lie do you tell most often?

What do you regret not doing?

What gives your life meaning?

What do you most often look down on people for? What do you think other people look down on you for?

What bridges do you not regret burning?

What are you most insecure about?

How do you get in the way of your own success?

What’s one thing you did that you really wish you could go back and undo?

What are you afraid people see when they look at you?

ANSWERS:

What keeps you up at night?

Anything and everything.  Why am I here?  Why do my feet burn?  Why didn’t I stay up longer until I was tired enough to ignore my pain and sleep.  You get the idea.  All self-centered things, combined with whomever I talked off the ledge that day, or whomever came a little closer to losing the battle that we all share when fighting COPD.  And, despite it all, it is a fight to face your mortality each and every day and remind yourself that you’re fine and that today is not THAT day.

What’s the most surprising self-realization you’ve had?

As annoying as I can be, I do have people that like me.  Really, really like me.

What’s the most illegal thing you’ve done?

Shop lifting.  As a kid, I’d steal the bottles from the back of the store and return them to the front in order to get cash for candy.  Or, I’d shoplift.  I don’t know where I was when I got the idea that this was the thing to do, but I know exactly where I was when I was busted by the store owner.  I was with my big city cousin, visiting her neighborhood, and yet I only remember me being busted.

What lie do you tell most often?

“Do what you want.  I don’t care.”  While I know that everyone will do exactly what they want, but I do care, and passionately, that they make the decision that I think is best for them.  Yep.  Shades of my Mother’s daughter.  It’s like I’m the only one in the world that can see its pitfalls, and like Wonder Woman, I must protect everyone from themselves all while standing to the side and allowing them to make their own mistakes.  Crazy.

What do you regret not doing?

Not being brave enough to defy my Mother’s worries and join the Merchant Marine upon graduation from High School.  I really wanted to be Julie McCoy, even though I’ve never been innocent enough or perky enough.  But, wiser heads counseled me on everything that she knew I’d hate, and so I listened and made a new plan.

What gives your life meaning?

Nothing.  Seriously.  I’ve struggled with the meaning of life since I was about 5 years old and I lost my baby brother and almost lost my Mother to her heartache.  It’s been 53 years, and I’m still clueless and no wiser about why we are all here and what it’s all supposed to mean.

What do you most often look down on people for? What do you think other people look down on you for?

  1. What do you most often look down on people for? Abandoning their responsibilities to children or the people that love them.  Yeah, those bags got packed a long time ago for me, and even though I made it out alive, I still worry about letting someone I’m responsible for down.  Even though I’m only responsible for myself.
  2. What do you think other people look down on you for?  THAT list is endless.  But, since I’m not supposed to be concerned with what others think of me, I try to ignore that question as people will be who they are and think what they like, regardless of the truth or circumstances.

What bridges do you not regret burning?

Kicking Daddy Dearest out of my life.  While there is not a day that goes by that I don’t think of him and wonder how he’s doing, he needs more care than I can provide to deal with his toxic unhappiness.

What are you most insecure about?

My physical safety.  As my body fails me, that worry comes back to the forefront more and more often even though no one has jumped me in years, or been mean to my face.  I just worry about cliques and mob mentalities and frailty.

How do you get in the way of your own success?

My own big mouth.  Seriously.  I know it, yet I still keep on talking.  I never learn.

What’s one thing you did that you really wish you could go back and undo?

I was a horrible 12 year old raising a 4 year old while our Mother fought depression and Daddy Dearest did his manipulating best to steal everything not nailed down from our Mother, including her children.  Into this den of snakes, I was cast in the role of child minder – even though everyone in the world KNOWS that I suck at nurturing and child care.  I had some scary moments with my Baby Sis when she was supposed to mind me, and I was not supposed to lose control of her, ever, and yet we’d be off doing something in the big city and she’d sass me and I’d lose my mind with fear that I would not be able to keep her with me as she’d run off and I’d have failed in my responsibilities to care for her, as well as failed in my attempts to give her a fun day out.

Despite our best efforts to get along, share vacations, and generally enjoy each other as adults that can choose whether or not to be in each other’s life, she has decided that I’m persona non grata and I’m clueless as to what it was that I did that was the last straw.

The baggage between the two of us is so bad that she hasn’t talked to me since 2015, and I’m still not clear about what caused me to be tossed from her life as the toxic personality.  I’d fix it if I could, but it takes two so I’m just trying not to cause her heartache by pestering her while missing her desperately.

What are you afraid people see when they look at you?

A silly, useless old woman. Family Collage