Razor’s Edge of Sanity

<a href=”https://dailypost.wordpress.com/prompts/i-cant-stay-mad-at-you/”>I Can’t Stay Mad at You</a>

Can I try to be honest about this?  After having so many people walk in and out of my room over the past 24 hours, I’m exhausted.  The only person who isn’t smiling is me and everyone keeps asking why.  I got lucky this time, after all the build up to the potential outcomes for this round of surgery; things are bad but not ugly.

The surgeon finished with me, the scraping of my left arm for tissue, tendon, and a bit of bone to clear out yet some more cancerous garbage.  I’m to keep everything else in the places where my genetics first arranged them.  In short, still have the arm!  But the next time I can’t help wonder if I’m going to be that lucky.  And really, how many more times am I going to be able to add a little more time to the calendar.

When Kathy and her family agreed to help out there was one condition, I keep trying to find a solution.  Sounds simple?  It’s not.  There are days when I truly wish things sped up.  Selfish beyond comprehension?  Maybe?  I’m not really sure when you know that others, even when willing to give everything of themselves, are being saddened with my contribution.  This particular family and I have been down this road before and I am honored and petrified to think we are walking down that same path.  Before it was only a few weeks watching someone decline, this is much longer.

We all agreed that if I had stayed in Maryland, I would have done this by myself.  I wouldn’t have involved others.  Still carrying that guilt about needing them during the daughter issue, I would have stayed silent until someone read about it in the paper “Crazed Border Collie eats Owner!”

There is plenty of sick, childish humor I can find in all of this.  Most times I’m smart enough to know to keep my mouth shut as well.  Because I don’t want to be defined by the cancer or solely by the events regarding my daughter or even her mother’s leaving.  I’m more than those events.  While the cancer has a hold on me at present and it’s grip is definitely stronger than I would like, it can’t be me.

I love baseball, playing the piano [even when I keep headphones on to hid my mistakes], and while most people who knew me might shake their heads in confusion, I have a huge soft spot for kids.  Those things are worth wearing the label for, big letters across my chest.  And since work still sends me projects to complete, I must still have some of that?

There’s always going to be a part of me that is said about those other things, you don’t ever get over the loss of a child.  I keep reminding myself of that when dealing with my mother.

Any person who has dealt with these life-altering events understands that they can absolutely drag you down.  So much deeper into a world that you never knew, that depression being ugly and at times all-encompassing.  It’s taken lots of therapy, some interesting pharmaceuticals [chemo/anti-depressants/ other odds and ends], and running away to get me closer to who I want to be.  I’m still universes away.

There are few days when I don’t think about one or two people back in Maryland and if I did the right thing.  For any of us.  I’ll probably never know the answer.  You learn to live with that…

The doctors and nurses, Kathy and her brood, even the interaction I allow my family isn’t going to fix this.  Dying is hard.  I wish there were better, stronger words I could share, but I don’t have them.  I just know that I hope there comes a time when I’m strong enough to understand how to handle this better.  That goal of being a better person for my daughter certainly took a strange turn!

I don’t think I did the right thing by just cutting other people out.  My grief just told me they needed a break from me, I just didn’t realize how hard it would be to reach out now that I could use someone to talk to.

Still working on that forgiving myself thing.

 

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Sign here, and here, and here as well!

Just push play.  Stop staring at your phone and hit the button and let’s get this over with.  You’re going to need every bit of emotion out of you for what comes next.  Let the joy and sorrow, the pain and the memories wash over you for a few minutes.  Take the smiles or tears and let them escape, because sitting down and deciding what comes next needs to be rational, emotionless if possible.

Exactly 364 days ago I was taken somewhat by force to the hospital.  Another one of those cancer things that everyone worries about and dreads having to deal with.  My blood had become a poison onto itself and I didn’t realize it.  The doctor’s didn’t understand for another 24 hours because I was just talking gibberish.  Out came the paperwork, that set of directives that when I was mostly rational I chose a course of action.  The problem was the person who was supposed to make the decisions didn’t, or wouldn’t.  Maybe she just couldn’t?  Doesn’t matter, it just made the process longer and more exciting since I technically didn’t have a proxy any longer.

I time bombed the paperwork later so that I could make sure that everything was being handled the right way.  Or at least my way.  So today I have to finalize the new paperwork.  Going back over how I want to live and how I wish to die.  Thus the music.  A track I knew was going to absolutely leave me a wreck and make me quiver just from the title flashing on the screen.  The headphones covering my entire skull [I don’t care for those earbud junk you get with too many devices.  Thus old-school cans that cover my ears and envelop my senses].

There nothing fun about this process.  Over the last year things have not been handled in a way I always want.  I left too much leeway in case someone changed her mind and wanted to help.  My parents are doing their absolute best to understand my choices, even leaving the room when I can see on their face they disagree or want to argue a different point of view.  But now I have to chose the right person to chose for me.

What conditions will be acceptable?  How long will I be willing to tolerate other circumstances?  All simple questions until you are forced to actually put them on a piece of paper.  It’s no longer some “talk” between family, it’s a binding legal document that leaves no room for discussion.

My mother fought the distribution of some of my things.  Her viewpoint is valid, things can always change.  Maybe I should hold on to my stuff until later.  Nothing like bringing in more lawyers when this might not be the thing worth fight about, or even spending any wasted time on.

I never understood the level of confusion Kathy felt years ago when she had to say goodbye to her own daughter.  Turning off machines, acknowledging a very different world they were about to enter.  I’m trying to remove that for my parents, for my friends, for everyone.  I joke about people just doing what I tell them, but I know it will be hard in the end.  Even knowing that they really don’t have a decision to make can paralyze some.

So medical directives, new living will, and since the lawyer is getting paid a few changes to my actual will have to occur before the close of business today.  It’s stupid that at one point my brain put my ex into consideration, how would she have handled this?  Not well, that’s the thing I need to keep reminding myself.

The irony of this entire day is that my nephew turns 7 today.  While I’m plotting out the terms of my exit, everyone else is going to be celebrating the anniversary of his arrival!  I’ll give him a call after school, maybe some Facetime?  Who knows, I hope they run him into the ground with silly, goofy activities.  Uncle Lary has got to take care of the harder things.  And that’s the way it should be…

In response to The Daily Post’s writing prompt: “Ripped from the Headlines!.”

Dying Wish

When I was 15 I lost my hair, a bunch of weight and for a while my faith in just about everything.  The medieval approach to dealing with Cancer was what you got in the later 80’s.  It took a good group of friends to bring back my faith.  I was lucky that group expanded for a while, because later that year my faith was tested again.  Death touched my doorstep in a very personal way and it caused me to forget everything we had fought for over the last 9 months.

Fast forward until we reach right now, and I’m back to the no hair routine, lost some weight and my faith has been tested again.  Only this time I don’t have the energy of a bunch of teenagers rallying around me.  Sure I spend some time with kids thanks to my niece and periodic calls to my nephew, but this time I’m getting ready for a different outcome.  It’s not just about leaving a job or relationship.  I didn’t get rid of a car I’ve had forever and feel some nostalgia for the memories hidden under the seats.  This time I’m getting ready for leaving everything behind, not to return.

I’m dying.  And that phrases rings in my head more so because I saw the musical Godspell when I was a high school senior and it was a reoccurring theme throughout.  So there are times when I leave a building or group of people and it is the last time I will be around them.  It’s not the same as before because this time I’m not as naive.  That faith I need to hold onto just has been tested too much these past 18 months.

The looks on people’s faces when you say that you are wondering about what happens next.  Is it really possible for me to be with my daughter again?  Will I get a chance to stand before someone and plead my case for saving what is left of my sole?  And just as importantly, can I get a nice Chai Tea while I’m waiting your decision?  (I miss those at times, they rip up my stomach now!)

There’s no timetable I’m working on, no date circled on the calendar to let me know I should be ready.  I’m enjoying the time I get right now, even if it is what a sports guy would call garbage time.  The fun stuff isn’t possible, so we’re letting the secondary ideas take over.  Explore something new for a bit?  That is if my body is up to it on any given day.

Plenty of people in my position talk about being ready.  I’m not, I’m actually sort of angry.  I’m angry that all these months have been joyless and painful.  I miss the feeling of running.  I miss the feeling of my ex’s head on my shoulder [I sometimes just need to know that she is okay].  And mostly I just miss feeling anything positive.  Little things I try to strangle with my grasp slip through because I want to stay in some moment of happiness that is lingering.

The difference between those friends of my youth and the people around me now?  Those kids saw, or maybe prayed for, a future.  One that didn’t require death touching them.  Even when it did later, they held onto me and made sure I didn’t fall further.  Now most people are so worried about getting pulled into some nasty situation, they avoid it.  Run from it.  Run from me.

My wish is something simple.  I just want to spend one day without thinking about the past.  Not having it touch me in some manner throughout 24 hours of life.  I’m scared for what comes next and I’m scared that all that remains is unpleasant.  For me it is the hardest thing to admit, being scared.  Not some false bravado, not smiles through what others know is painful.

It’s times like this that I rely on my daughter’s memory to help me.  Those were some of the best days of my life.

In response to The Daily Post’s writing prompt: “If You Leave.”

Coins by the Fistful

My parents told me that if I wanted the bike I was going to have to come up with the money on my own.  They didn’t see the need for a sophomore in college to be asking his mommy and daddy for a couple hundred bucks for a bike.  So I started a fund, every last piece of coin I had went into an old glass water jug and I kept waiting until it hit the point where I could go to the bank, get paper for my metal coins, then head to the local sporting goods store to pick up my toy.  It took an entire semester, I probably shifted my spending habits from using a credit card to going to the ATM so I could speed the process up.  But by the end I had around $400 for my bright green, 21 speed mountain bike!

I’d take every coin that was in that jar, and every coin that has filled that jar in the years that have passed and would willing dump it into any fountain so that I could have this one wish.  It’s completely selfish and just my asking for it makes me feel bad about myself.  Actually it makes me hate myself for even considering it under any circumstances.  I want to be able to talk about my daughter in a way, some manner, that doesn’t end with me so upset I can’t think straight for little while.

It’s kept me from doing some things that might be beneficial.  It was hard seeing an old friend in March and her asking if I had any children.  The look of horror on her face when she just didn’t know how to react made me so angry.  Not with her, but with the card I had just laid on the table.  The rumors of me being sick had gone around, an invitation to dinner was offered, and I needed to go.  I needed to be around someone who knew me before all of the darkness of that past year.  But in the end, I was crying, she was crying, even her husband was overcome with my story that he needed to excuse himself for a minute.  (guys not liking to show emotion in front of people they jut met a few hours before!)

If I did the math, we’re looking at $16,000 if I saved money at the rate it took me to get my bike.  Imagine the sight of someone dragging that into their local mall and sitting on the edge of a fountain tossing handfuls of coins into the air.  The splashing making every child around wonder how they could only free a couple of pennies from their parents.  And here was some lunatic pitching multiple piggy banks into the abyss.

Tomorrow it will be 18 months and it still terrifies me to think about.  All of the therapy, sleepless nights, need for a pill when I really don’t want to be taking any more medication, I wish it made this less painful.  All things in good time?  Time isn’t the infinite thing people wish it were.  The idea of the natural order of things went out the door that day.  The only times I should have been packing her things would come at college and when she eventually escaped the basement to marry the person of her dreams!  (give a father some rope here, we can joke about that dream!)

I’m heartbroken to this very minute, to the core of everything I am and will ever be.  Maybe if I hadn’t buried it so deeply when the ex didn’t want anything to do with the conversation?  Too many questions left unanswered about too many things!

Several families benefited from the things I shared of hers.  It wasn’t many things, some are in a box that I couldn’t give away.  One box has a few items that should the ex ever ask for a single thing, well there they are.  Feel free to take them.  But that’s a different grief set that has no place here, not right now.

My wish, to just feel it a little less intensely than I do.  I love that little girl, her absence is hard.

In response to The Daily Post’s writing prompt: “Three Coins in the Fountain.”

Some Other Day…

I don’t feel like writing about the weather or what the squirrels are doing to the birdfeeder, I had prepared myself for the second half of yesterday’s prompt and wrote that instead.  I didn’t write to my younger self, it’s like creating a roadmap of things you want to warn yourself about, but wonder whether Einstein might have been correct and it would alter space/time.  The Butterfly Effect?  Just because I didn’t cross the street that day shouldn’t alter the course of your life!

So without any more delay, on with the show…

There was snow all over the ground that morning. Not enough to stop anyone from leaving their homes, but enough to cover everything. I don’t know if the news would have called it partly cloudy or partly sunny, something about percentages that rarely made sense. You just didn’t wake up that morning.

So now you can answer some of those stupid questions you’ve got rolling around your head. Is your hair going to be grey and curly or is it still going to be a shiny reflection from lights bouncing off your dome? Was there a crowd there to meet you? Was there anyone at all to guide you through to the next step? And the question that means more to you than anything else, how long will that little girl let you hug her before she pulls away?

The joke had always been that you thought you’d would end up in Hell. That was were all the fun, subversive people would be telling their off-color jokes and sipping $80 a glass Scotch! Maybe you should have rethought that, those lost two years of your life were a living hell with moments of joy thrown in to break up the monotony of it all. The Universe is vast and let’s be honest, if you want to see some of the people from your past again they aren’t going to the warmer theory!

It took some time before people were comfortable with accepting you having left them money to use for finishing their various levels of education. After your mom convinced them it was okay, the house was sold and split up among those people. For the most part they are happy. A few even smuggled some of your ashes into Fenway Park and dumped you over the Green Monster when they thought no one was looking. Dad paid the fine after he stopped laughing!

I realize you have questions about how people reacted, but I don’t know. You’d left months before to get help that some people just felt whatever it was they felt and life went on for them. The nephew understood but is still tried to find someone to crawl through the woods with him.

Mom obsessed about the dog a little more since she had to take care of her full-time. Wooglin was the most babied 13 year old Border Collie anyone knows. Dad looked at the stamps he collected over the years that had baseball themes on them, but remained quiet about it all.

I promise that everyone will be okay in time, and yes even her. Life moved forward long ago in her world.

The niece is married and has a little girl of her own. She takes her to the park and they sit on the swings and talk.

Hopefully we found some peace and you got a chance to do that thing you always talk about, dancing around the room with that little girl of yours/ours! That is a great goal. Let’s hope the universe thinks so too…

In response to The Daily Post’s writing prompt: “Through the Window.”

Someday I’ll Be A Memory…

Time heals all wounds?  These are the best times of our lives?  Memory is a funny thing.  Some scientist would just say it’s a collection of neurons firing in the recesses of my brain, bringing up some photo or smell.  Maybe an emotional response to a current situation based on something that happened in the past.  Right now my memory of the little girl who kissed me on the nose is as vivid as my memory of the first girl I ever kissed.  Sure there is a small relationship between those two events, positive emotions; but the events are separated by more than 30 years.

A rolodex of emotions and memories come flowing out when I think about how life has been the last year, the direction things are headed over the time left in front of me.  The truly fun parts of dealing with depression and declining health is that you have to fight to keep positive and the only way to do that is try to cling to “good” memories.  They call it a reason to live, something or someone to fight for or to have by your side.  That’s the entire reason for running to Boston, remove myself from the memories that are in several ways destroying me.  The pain here is only what I bring with me.

My emotions tend to be all over the place, and I keep them to myself.  Tomorrow is the birthday of two people, one my cousin who I love for all the wacky things he did when I was a kid.  Tony’s 15 years old than me and when he would come for the night, it was great.  He’d pull out a bass guitar, I’d be on a keyboard and my brother would play his guitar.  We also squeezed in some basketball with his friends.  It wasn’t until years later I realized he had been drinking way too much.  But my 13 year old mind recalls those visits and just all of the fun we had.  [Yes he got help later for the drinking, good for him!]

The other birthday is harder for me to celebrate.  I love this woman as much as my cousin, although she isn’t related to me in any fashion genealogy would recognize.  But I also know that she has no idea where I am and I’ve kept it that way on purpose.  Her happiness is extremely important to me, I don’t know if I want to give up those memories.  She’s more important than just a card, but that’s what she’ll get.

I’m learning to adjust how I allow myself to react when I recall these things.  It is completely heart-wrenching thinking about my daughter not being around.  I have other memories, really good ones like when I first heard a heartbeat or learned that she was in fact a “She”.  There are others related to her, but they sometimes get pushed back by that last memory.

For me, I’m trying to establish those positive memories for someone else.  If the medical establishment is somewhat correct, the 14 year old young lady who tries very hard to help will be 16 when it may be my turn to be a memory.  I know what loss is like at that age, for the next while the plan is to try as hard as possible to make her good memories outweigh the reality of watching someone fade.  I understand now why my grandmother came home from the hospital that last Christmas, she wanted my brother and I to remember that, not what followed.  She took a huge risk so that she could be with her family, only to return to the hospital right after we left.  That had to be the hardest thing she ever did, and the most generous as well.

I hope at some point to be a kind story told to someone else.  A memory carried forward.  Being at peace with it all is hard, believe me you don’t understand the strength you find in accepting certain things about yourself.

Distant memories are bittersweet, or they’re painful, maybe even frightening to recall.  But they can be just as vivid as the memories that we formed last night which become distant memories.

In response to The Daily Post’s writing prompt: “Memory on the Menu.”

I Can Tell You the Truth!

Who needs to “imagine” what the end of their life might be?  I can look into a mirror and start to see the signs that everyone else is so worried about.  Over the weekend someone mistook my radiation glow for some type of odd tan lines!  But hey, if this is the prompt that someone came up with for today, I’ll play along.

Saturday night I stayed up late, much later than I thought I could.  My body was as rundown as if I had been doing my old routine of miles a day on the track.  It all started with a little girl who had been visiting before heading off to the fireworks.  A beautiful little girl of 7 years, blond hair and a slight lisp when she spoke.  There I am wrapped up in a blanket and she walks up to me and kisses me straight on the nose, plops herself down next to me on the couch and starts to ask which of the children present was mine.  She didn’t ask about the tube running from my arm, not the cane that from time to time I need to use just to move around the house.  She only wanted to talk about being alive, not dead.

The adults in the room weren’t sure how to react.  I had a smile on my face so that might have defused the concerns.  Who can get spun up about a little girl being a precious little child?  My response was simple, “She’s not here.”  Lots of kids hear that and just assume that means divorce, so I got a hug and she jumped off the couch.

Later her mother walked over to me and asked if I was okay.  No, but the answer was yes.  My mind was lost in thought about two things, I wished my daughter was there and was I going to be here next year to get another kiss on the nose.

I’ve taught several hundred young adults over my lifetime.  Some between degrees when I was living in Florida and decided that high school economics was the thing to do.  Later it was the adults who walked through my office at George Washington University.  They are a net positive that I can call my legacy.  Some have gone on to teach other people, some never took another Econ class.  And yes, there are times when I wonder if I had an affect in either direction!

My nephew knows how to ride a bike, I did that!  I had to stop teaching him how to swim because I just didn’t think it was safe for either of us anymore.  But he still asks when I talk to him.  I don’t know if he’ll remember when he has kids that I taught him, I hope there is some truth to the idea that we watch over our loved ones when we are no longer around.

Memories are fun things, colored by the times and by who we are when we recall them.  Some are completely wonderful and others are painful, debilitating.  There are people who are going to be fine with me being gone.  I admit that to myself.  It uncomplicates their lives, no longer having to deal with the truth of the world.

It hurts when I think about how I can’t tell my family what is happening.  They know the broad stokes.  But the finer details, the ones that matter; those remain mine alone.  The family I stay with in Boston knows something is up, but even they are too scared to ask.  Not denial, but fear of reality.  I’m doing everything I can to protect them.  The same goes for other friends, I may think that out of sight, out of mind works; but I’ll never allow myself to hurt them.  For some reason my brain thinks it will just be easier to get a phone call saying I’ve died.  No reasons I can think of why they would sit there are watch.

Preparing for your eventual death is a lonely task.  There are lawyers and doctors, therapists and random people coming in and out of my life.  But they are no replacement for a warm hand, or that kiss on the nose from a 7 year old!  I hate that I’m wondering if I’ll see my daughter.

During a group session I kept being asked why I’m choosing to protect everyone at such a high cost to myself.  It’s what they asked when I was healthy, why would that change now that my circumstances have changed?  The emotional toll is so high I can’t describe it without sounding crazy.  Why did I set aside birthday cards and other notes, signed and dated so that someone makes sure to mail them if I’m not able?  I care about those people more than myself.  I know that’s wrong, I don’t hear from them ever.  But a friend I have mentioned in other entries, her birthday is at the end of this week.  Her card has been in the hands of another for several weeks with a Post-It Note with the date attached.  I hope she likes it, but I’ll never know.

So am I wondering about the Legacy of Lary, how people are going to remember me?  Yes, all the time.  What can I do about it, very little!  It sucks, that much I can tell you.  Hopefully this goes better than my mind allows it to plan for.

In response to The Daily Post’s writing prompt: “Don’t You Forget About Me.”