The Light and Shade of Things

Fifty

The levels haven’t gotten better.  Some days are filled with such pain I can’t explain it other than to say “you have to have been there”?  But in the past I would have done anything possible to make sure no one ever knew how this feels.  The physical stuff I learned to deal with years ago.  Sports taught me how to cover up minor stuff, being an asshole taught me how to cover up the rest.

Some days I pray that the cancer will just win and a nap turns into something permanent.  Guilt gets a large opening on those days.  The lose of control over my life isn’t who I am.  Long ago I accepted the narcissistic qualities of who I am.

Now I need lots of help to get through the days.  Some of it for little things you don’t even consider.  Every now and then not being able to get a glass of water?  The hallway is just too long.  I’m not used to having to sit on the floor to just let my body catch up with my drive.

Watching the sun rise through the window is still a wonder.  And some days I consider it to be a gift.  Even if the sky if covered in grey and the guy next door is entering week two of concrete removal from his driveway, I try to hope.  One more chance to get things right.

And then it creeps back…

The darkness that makes me think of those old cartoons where the character has a cloud dripping on their head.  Even when the umbrella is open, the water still soaks them through.  The waters on the inside?  Guess that is some reference to inner turmoil?

Hope left the building some time ago.  Parts of my life that were funny, aren’t.  The doctors have told me that with so many things that occurred in my personal life in such a short period of time, my brain just isn’t wired the same anymore.  It goes far beyond a defense mechanism, my emotions have just stopped.

Could be protecting others?  Might be protecting myself?  When you close the circle around yourself it hopefully falls into a little of both.  Mostly I think it is protecting others because I still have such emotional response to certain people.  I keep grasping for the light and only come up with

I feel like I let them down.  Even with the cancer?  But you can’t control that one!  Stop acting like an idiot!

See the battle isn’t as easy as some people think.  You can’t just will your way out of a mental state.  You can delay it.  Push it off.  But it always comes back.  This change in myself isn’t one I like.

The darkness will win someday.  The sun won’t come up and that damn jackhammer will be silent to me.  I’m only wondering if the pain goes away as well?

 

 

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Useful Tool, That’s Me!

Sanctuary

The guy I roomed with for about ten seconds after joining my fraternity came with the pledge name “Tool”.  He thought it was because of his prowess with the ladies, the rest of us knew it was because he sounded like an idiot trying to regale the crowd with his tales of conquest.  Eventually he learned, not just of his nom de plume but how to act around other people.

My niece has a guy in her life.  And he is doing his best to put everyone in the family at ease while still being a 16 year old boy.  He brings flowers for her grandmother, tries to remember to “Yes Sir, No Sir” when talking to her father, and he is absolutely not sure how to deal with me.  But over the weekend he made a valiant effort towards gaining my trust.

He has a car so in need to daily repair that he actually spends time each day tightening some bolt or hoping that all the pieces come home from his lawn cutting hours.  Purchased with money from his own grandparents when he was 14, his father has helped him rebuild as much as possible.  But then I was asked for some advice…

Number One Rule: don’t get between a father and son when they are trying to form a bond.

In this case it was with permission.  It was about some electronic portion of the stereo that his father just couldn’t decide on so he opened it up to the floor.  Since the young man is over on the weekends for Sunday brunch, he asked me to sit and talk.

I know nothing about restoring cars.  Minor things I can fix, major things have me making calls to the mechanic for an appointment.  But adding some speakers and a radio, I can handle this.

It wasn’t even a talk about the price or even what he wanted it to look like.  We talked about the music.  Knowing the engine is always going to be heard, that squeaks and rattles are the symphony of the metal and rubber, it never was going to be a concert hall of silence when the doors shut.

My dad taught me about acoustic models when I was a kid.  Different power ratings, ohms, peak watts versus balanced output.  An engineer’s dream set of questions asked by his son who wanted to listen.  We were building a sound for my keyboards, but we also built a better understanding of each other.

He was the tool I needed than, I’m the tool someone needed now.

Of all the things I miss about my daughter, not having the ability to see her face when she learns something new truly upsets me.  That set of eyes growing wide [that scene in Zootopia with the Sloth is a perfect example.  That’s why everyone loves it, they know that feeling and want it every day!], her excitement with her accomplishment.  My smile knowing her exact feeling.  It’s also why I feel a simple level of guilt about having been the one to teach my nephew to ride a bike.  On a basic point I took something away, even though my brother didn’t care.  This also was the same time my daughter had passed away so I might have also been given a pass from him?

Last night, before crawling into bed I ordered something on Amazon.  Nothing big or expensive, but a puzzle piece that will get them started.  My niece will be the one who actually gives it to him, another one of our little secrets that harm no one.

Having retired last month since I felt my work wasn’t up to snuff, having someone ask me for advice made me feel useful.  Just a simple reminder that even when I don’t see it or even feel it, others do.

 

Crack of the Bat

Curve

The coach was always clear, make sure you get your feet down firmly because that was the foundation for everything that followed.  You get some strength from the kick, but put your foot down in the wrong place and your arm won’t get the ball across the plate.  You more likely were going to take off the batters head.  A foundation for everything that follows.

My belief system has always been about the ability of people to help others.  You don’t need to be an expert, only willing to stand in the box and let someone try their fastball.  You can learn to do just about anything, even when you are convinced that you have no talent.  Doesn’t mean your curve ball will get you a major league contract, but maybe you learn something about yourself that you didn’t consider.  And just because I have read a book on tumor removal and can ask questions intelligently, you don’t want to hand me a knife.

Life has thrown a few curves in my direction.  Headed straight for my helmet and forcing me to fall directly to the ground in both anger and fear.  Sometimes I got up, sometimes I’m still staring at the clouds wondering when that hand will arrive to pick me up.

The first time I ever was hit in the head I was 7 years old.  Stupid pitch that got me before I could move.  My mother screeched, my father stood up and checked me out and sent me along my way to first base.  [these days they would pull me from a game and start the concussion protocol!]  Lesson learned?  Always keep your feet planted but ready to move quickly to avoid the crush to the side of the head!

Life is full of curves.  Gentle, meandering bends in the path around a pond.  Harsh, blind round-a-bouts that block your view of what comes down the lane.  They can make you cautious and thrilled at the same time.

I’ll admit that lately the curves have been too much.  Coming too fast and my reaction time isn’t what I once had.  No longer crouched behind home plate waiting for the next pitch to hit my glove.  It’s more like the time I went to a batting cage and sat with my equipment on to learn how to handle 90 mile-an-hour pitches coming directly at my face.  [my dad was right, it helped.  But scared my 12 year old self!]

Cancer is like a pedal car going around that blind curve.  Slow progress that still doesn’t always allow for good footing.  Lately it has taken my humor and that bothers me more than anything.  Reality means dealing with life rather than joking about it.

This week scared me in a different way.  My foundation showed some cracks and the flat surface now bends.  Curves formed in the wood and now I’m wondering how many more at bats I get before the cracks splinter and pieces fly into the stands.

The screams from my mother will be different.  More people are watching as well, the crowd is still small but they cheer louder than a full stadium.  But soon they will leave the game upset the home team lost.

 

Additional work to be done…

Bedtime

The material over my face only lets in brief glimpses of light.  Sometimes the warmth of the sun radiates through the material but that only lets me know that the sun is up and that my kidnapper has let me out for some fresh air.  There aren’t many details to be seen but the memories of certain days flood back to bring me to a different place and time.

Days can go by without the veil being lifted off of my face.  Food slips through at various points but I don’t recall the smell or even what it might have been.  The blandness replacing any sensation of flavor or enjoyment.  From the moment I get up until the time comes for me to crawl back under the covers life continues without me noticing anything.

Getting up the next day just means repeating the same pattern of dull, colorless life.  Sometimes not even remembering who I have spoken with or needing to look at my phone to see if I spoke to anyone at all.

Welcome to the world I’m trying to escape.

The combination of drugs they keep adjusting takes more than it gives.  Time is the only thing they care about.  How much more can we give you without thinking about if it is quality time.  Getting through a day isn’t enough, the notion of feeling like an automaton is not a life worth living.

I want to feel again…or maybe I don’t.

Having joined a group to help deal with grief, even they are sometimes at a loss how to direct me.  Details get in the way of progress and when you don’t have details they can set you back.  So many questions about my daughter that I still don’t know.  But then those have been hidden from me for some reason.

In such a short period of time I had to deal with a world of devastating changes that I still don’t know which to address on any given day.  The longer those things are left unfocused and silent means going another sunset without making progress.

Picture rowing a boat towards shore and then falling asleep.  You wake up and realize you have been carried by the tide even further out into the vast body standing between you and terra firma.  Frustration, pain and unfortunately anger all come rushing in before you notice the amazing sunrise.  Even worse, just turning around might bring the realization that another island is directly behind you.

I’m going to go lay back down now.  It’s been a rough couple of days and people are relying on me to get some work done.  Hopefully when that’s finished I can do the other type, some on myself.  Maybe just a few minutes and when bedtime approaches tonight I can dream about a place people keep telling me about.

If not, well I can go the other route of overthinking life until I just shut my eyes.

My Crazy Uncle

Quote Me

For years the books sat on shelves in my parent’s house.  Later my collection grew as they became a portion on shelves in my own house, their dusty covers torn and aged from relatives who had kept them safe.  It took me until I was in college to really appreciate why they meant so much to people, but now I proudly am the guardian until they are eventually passed on to the next custodian.

When Faith is Lost, When Honor Dies, The Man is Dead.” – John Greenleaf Whittier 

At some point I should have asked my mother to embroider that on some throw pillow to remind me of something very simple.  When I stop being who I need to be, get wrapped up in the expectations of others, my life loses all value.  Maybe not to the world at large, but if in the course of trying for others I forget to stop and try for myself, I might as well not try at all.

Someone else’s narrative had become mine because I chose not to fight.  Well I was fighting the wrong person and for the wrong reason, so lots of things were eventually lost.  Sometimes there is no honor in falling on your sword and letting others think the worst of you.  Sometimes you just end up hurting because you can’t get that blade from your chest and carrying that anger and hurt seeps into everything else you do in life.

For a very long time I thought of my cancer as being some additional punishment for not being stronger.  I convinced myself that if I died as a result, it was earned for prior actions.  (additionally I cling to the hope that it might at some point allow me more time with my kid, unless I head for warmer climates?)  No one should think that way.  It sends you into a spiral that is very hard to pull yourself out of.  It takes the efforts of other people that they shouldn’t have to make.

Lately I have let someone help in ways I didn’t expect and still don’t know if I’ve grown enough to accept it.  It hurts thinking of letting another person into my world.  The simple act of someone offering to take me to the store or just to a movie requires me overthinking that destroys too many things.  Someone offering to just sit there, in complete silence confuses me.  I’ve lost the ability to just let another person try.

My faith in myself is the question, not them.

I was programmed from a young age to shoulder the weight of everyone’s actions.  Some people have used that knowledge for doing good and others have just used it.  But that also falls back on me.  I’m not a people pleaser but rather someone who will accept the blame even when not in the room.  The term I love is “Sin-Eater”, but I picked that up from watching The Blacklist.

There is something I heard in a song this morning-

I’m waking up, from a life left behind.  To see what lies ahead, I’m waking up.

Maybe there is a chance that this quote can become something of a new guideline.  If I can’t find a way to let hope inside, to open my eyes and let someone see whatever light is left inside of me; then my uncle is right.

I’m dead.

Wednesday’s with Me…

There are lots of things that Cancer does to you.  Let’s not pander and overlook the obvious physical toll it takes.  Not only does the hair do odd things but even the toughest of people are at times reduced to needing help just to get out of a chair.  We see that part all the time.  The part most people are afraid of is the emotional side-effects.  Ones felt by themselves that they try to hid from others, while those same people are trying their best to act as if life is normal.

Most days I can keep the emotions in my little box, along with Shroedinger’s Cat.  Are they alive or are they dead?  But when the box does get a little peek of light, we end up with a more perverse version of Pandora’s little surprise.

Today I have been running from the feelings that would drive me to put a gun in my mouth and pull the trigger.  Those are ugly thoughts.  Ones that scare everyone around me because they know for me to even admit them means they have been rolling around for longer than my words now hanging in the air.

What happened today?  I don’t know.  There’s no trigger in my past that has my memories flooding back.  No birthdays, anniversaries, or even some flashback to an event I may have once attended.  But it has a grip on me that is so tight that I needed to write about it.  These are the conversations that upset people around me and only drive my own guilt deeper inward.  Rational versus irrational, pure emotions or pure logic; one always wins.

I’m finding that as I make these lists of things I wish to do, some require my reaching out to people.  But logic takes over and makes me question if this is about me or for them?  Would I be doing the right thing in talking to people about my death or letting them read about it at some point in the future?  Deeper and deeper into myself is the result of that particular question.

I haven’t been able to answer for my therapist a very simple question.  Why haven’t I spoken with anyone?  Even the people who know about me being sick don’t know the extent of where I currently find myself.

While the doctors tell me that the time to do something is now, my brain wants to do an end-run and find excuses for waiting.  I’m running out of excuses and running out of time.  Sooner or later getting my thoughts out is going to get harder and harder than it already is.  The confusion that at times clouds my mind will get worse.  And I’ll not only not recognize my thoughts but possibly some of the people in them and unfortunately those in the room.

Self-imposed isolation is not a good thing.  I always saw those signs in someone else and worried daily about her ability to control them.  Hiding when doing something was always the better task.  But I got to a point where I knew I couldn’t change those things, only be there if she was ever ready to talk.  She never was…

For the last year I’ve tried to talk about how it feels to lose a daughter, her mother leaving and now my own life.  I still don’t know how.  All this progress I’ve made with anger is nothing compared to the need to progress with the one thing that matters most, admitting that the people in my life matter.  Not just as memories but as an active part of my life.

I’ve seen too much death lately.  Experienced it in ways that I shouldn’t, ways that make me send a package to someone telling them that this scarf is to remind them of a warm hug that I just can’t deliver.  My only thoughts being how much they mean to me without being able to tell them directly.

I know the words, understand their meaning, but yet I can’t seem to apply them to myself.  I haven’t reached the point where I believe I deserve them.  And it’s very likely I never will…

Lean Back, I’ve Got You

Happy Endings

I needed a break from everything.  Not just writing, which has been sort of a lifeline to humanity, but the pressures of life surrounding me.  Getting so spun up because some members of my family made the holiday worse than it already was for me, it sent me back to the hospital.  The anger was so out of control I wasn’t able to rest and I couldn’t find any peace.

The funny thing is that the push over the cliff was caused by something so petty, it should have just been forgotten right afterwards.  Someone getting upset because they couldn’t understand why they didn’t get an ornament for Christmas and having the gall to complain about it at dinner?  Sorry, my father had too many other things going on and just plain forgot to order more.

It was a circus without the entertainment value!  And quite selfishly this wasn’t how I wanted to spend what most likely is my last Christmas with anyone.  I know my family well enough to not expect harmony, but this was just the beginning of too much complaining.

Maybe my perspective is colored by my own life experiences at this point.  I looked at the tree and missed my daughter.  The suncatcher I gave my parents last year shining brightly down on the tree kept her in the forefront of my thoughts.  Even though the windows were open and the weather was warm, I still had on a sweatshirt and flannel pants.  Later I sat in a chair wrapped in a blanket my mother had made for me, mid 70’s be damned!

By the time others got down from Boston to help return me to my tranquil life, I was hooked up to the wires and fluids again.  If my niece had been there she would have most likely let loose on my family in a way that would have made me proud, but also sad for putting her in that space.

Getting rid of the anger has been the most difficult part of my life.  I’m at times ashamed of it and other times I know it needs to come out or it has the potential to destroy me.  In the past I would have just picked myself up and walked away, it’s a little harder now.  When I did go lay down people kept calling my name forgetting that all-day marathons are not part of my life anymore.  20 minutes of mattress time was too much to ask.

I would do just about anything to not feel this frustration.  The inability to express it without taking a part of myself has been confounding.  History proved that I could just sit and talk out my frustration until I felt like I wasn’t being heard, then the loud voice had to come out.  But everyone feels that at times, volume being a measure of the emotional state.

A friend keeps reminding me that maybe I should spend some time writing about this anger and how I have dealt with it.  That the subject matter is rarely dealt with from my side of the equation.  My uniqueness might at some point help another in the future.  He may be right, I try sometimes to put it to paper but it also means going back into some things that I don’t know if they should ever be brought out of the closet again.  Protecting some people is still a core value, even when I have faltered I still know I have to do so.  And back comes the anger.

Hopefully I’ll be able to continue writing.  The pain of the medical stuff I can handle, I always have been able to.  But lately I just keep clinging to a promise made years ago, to be a better person for my kid.  That single thought is what has kept me from sometimes doing even what I know is the right thing.  It might end up hurting someone else.

So I guess my best option is going to “Tuesday with Morrie” route.  Keep writing and trying.  Same lesson I always told someone else, just keep trying.  I catch you when you fall.