Autographed Kindle

Vice

Every Saturday morning she jumps out of bed.  Before leaving the room, she pulls the sheets tight and makes sure that everything is in its place.  Each item carefully lined up on the shelf and nothing laying on the floor for someone to get their feet tangled up in.  It’s Allowance Day!  The list needs to be complete before she could even ask for that money.

The dishes are put away.  Her clothes have been taken from their basket and placed in various drawers.  And the most important thing to her father, the flowers in the kitchen had their water.  A simple list to help instill not only responsibility but a sense of accomplishment.

All week she knew what that money was going to buy.  The trick was making sure there was a little bit left over so some candy could be picked up after school.  Knowing that reaching into her pocket showed everyone she was an adult on the rise.

Each Saturday the store owner kept this week’s addition to the collection behind the counter.  Sometimes his wife handled over the package, other times it was some kid trying to earn their own money for whatever they might be dreaming about.

She’d show her bag to everyone in the house before placing it on the shelf.  Once in a while she had completed the previous week’s book.  That was what was important to my aunt, making sure she her finished last week before beginning the next weeks book.

Everything that some company thought were the classics.  At least what had been written by 1935.  So you had The Hunchback of Notre Dame next to Plato and The Collected Poems of Edgar Allen Poe.  The gold lettering covering the various shade of brown and maroon of the faux leather with titles that could take her anywhere.

My aunt collected those books for years.  Adding whenever possible, a shelf becoming a bookcase.  All of them carefully kept neat so that they could be re-read anytime.

I don’t know why she stopped buying them.  Maybe they didn’t make them anymore.  Possibly with the advent of WWII someone hit a pause button on their production.  It didn’t stop my aunt from buying piles of books throughout her life, but they were different from these.

When I was a child I was given this collection.  I’ve read them all.  Some where the copies I used for book reports in school and others just something that sounded fun.

My own collection of books has been a vice worth falling prey to.  Very few get bought in hardcover form, it’s just so much easier to hit the “Add to Cart” button.  Turn on my Kindle and there it is.

Ever been to a book signing where the only copy you own is in electronic format?  I’m a smartass who actually had an author sign the back of my device!

At some point I hope my nephew wants those books.  It needs to be something he falls in love with not something that is just handed over.  Maybe that same sense of wonder will come to him like ti did for me when reading Jules Verne.

The other reason I want him to love these books?  It will bring him closer to his own family’s history.  The way they came to him and hopefully people will tell him stories about his great-great-aunt.  Living history from words written long ago.

Advertisements

182 Seconds of Silence

Water

The pitcher is just far enough that I no longer want to reach for it. Someone should check the filter on something because I have asked any visitor to bring a bottle of water rather than taste what seems to be recycled sweat. Clearly it’s me and not the liquid, but some things never returned to their natural flavor after the chemo. In fact some things are better avoided because they are just reminders of items I enjoyed but know worry that cardboard will be the signal my brain receives.

I spent the past week being a captive of the medical establishment. At some point I really do need to ask if the drugs were designed to make things easier or worse? The entire task of getting up and walking a few feet didn’t work out as intended. Being dizzy just thinking wasn’t fun.

For 182 seconds I was dead. Nothing to report about that experience. I’ve needed the reports from the hospital to tell me what happened. Lots of people running around while I was laying on the floor of my den-mother’s living room. No bright lights, no angels telling me to go in either direction. Basically I was just there.

I’m glad I don’t remember or even understand all of it.

Being shocked back into some form of heart rhythm apparently doesn’t constitute a violation of a Do Not Resuscitate. Breathing being that line my body hadn’t crossed. Sure the heart was silent, but the rest of me was still trying to give it the “Old College Try”!

By the time people explained to me what had happened, my thoughts were about possibly making a few adjustments to what I thought I wanted versus what ended up occurring. The problem with that is this while depression thing that goes with basically everything surrounding my medical stuff.

I found a reason to not be so cavalier about my death. Not in such a rush to just let the cancer win out.

Every single attempt I have made to avoid letting new people in has led to finding the will of two people in particular to be stronger than my willingness to be alone. The therapist has always said I came back to Massachusetts to be around people who were going to push me to be more than I felt I was. But that is why she gets paid, to tell me things I don’t always see. Knowing that people did that same thing in order for me to tell them about economic forecasts, I get how much of a guessing game it can be at times.

The best thing I can offer is letting them have hope.  You can’t take that away from a person without it changing them in a very bad way.  They aren’t even hoping for a cure, it’s been about time and how best to spend it.  Facing simpler challenges that we might be able to conquer in an afternoon.  Something as simple as a puzzle or wanting to learn about a subject.

I know that there are times when people leave and that hug is about a full range of emotion.  Not too tight, but lingering long enough to carrying until the next time.

The funny thing I can say?  You drain too much water out of a person and they can’t concentrate on the world around them.  They slowly die.  You take away people who matter?  The same thing happens.

Punching the Ticket

Circus

All the important players were around the table.  Glasses dripping condensation on the wooden surface as one voice kept trying to be heard a little louder than the rest.  It was much warmer inside than out, even though the thermometer read 90 degrees.  Unusual for this time of year, but the kids were loving that they could pull out the shorts and tank-tops for an afternoon.

My parents had come into town to help manage a situation that was slowly getting odder and odder to trade emails or texts about.  Even the lawyer had taken a little time to speak from the beach, her voice calmly trying to answer questions while kids played in the background.  (Yes, there is a slim piece of land just north of Boston that we call a beach.  More rock than sand, there is a decent clam shack for those who are so inclined.)

If someone called me the ringmaster, they wouldn’t be too far off.  The circus of people with their differing opinions get heard, but in the end it is my decision to make.  Only I want them to understand how we got here.

Everyone gets the need for certain legal documents.  Even the ones that spell out how to handle my medical issues once I am no longer capable.  A game plan that I designed and hope others follow for the most part.  (I think one or two family members might be a little faster to pull the plug than others just to gain control over a few things.  But you can see them in the reptile house at the other side of the circus tent!)

Some plans in life shouldn’t need 15 year old girls being asked if they understand.  But the way my parents raised me means that they get a voice.  My niece deserves an opportunity to speak in a way that shows the adults she can handle what is being asked of her.  To just inform her and insist she act out of obedience isn’t fair.

My dad sits there and takes it in.  My mother is much more vocal, as is my den-mother in Boston.  I was taken back by the inclusion of a friend, but that was also something my mother requested.  It’s not a grand conspiracy, but I believe there is more communication there than I was made aware.  But she said she wants to help, be there in a way I need and sometimes forget to ask; so I don’t question any of this.

All of this was necessary because of an offer from the doctors.  They told me that by the end of the summer things are going to be bad.  Finding an exit strategy for me was something that needed to be addressed.  No one is actively asking me if I want to end my own life at some point, but they are asking if there is some mechanism in place if I chose that route.

When I was in the significant throws of depression after my daughter died and her mother left, I told the doctor that I could see multiple ways of ending my life just from objects in the office.  My list bothered the therapist because it showed I had not only thought things through, my plan had so many contingencies that nothing was going to stop me.  I obviously stopped myself in time, with lots of help.  But the specter of the cancer was always floating right above my head.

Sitting around that table we went through everything.  Discussed options and what I wanted versus what other people needed.  It wasn’t just water dropping from glasses that left the surface stain with moisture.

This is an ugly mindset to need to have.  But also one that requires a level of strength from not only me but in time all those other people.

And the biggest problem is now we wait hoping something beyond our control occurs so that we never have to have this talk again.

 

The Best

Generation

Never in my dreams did I deserve to ever see a vision quite like her.  Then unexpectedly, I’m taken by surprise, an Angel just appeared before my eyes.

Happy Birthday Abigail,

There’s cake!  I know you don’t have the same craving as your dad.  But the pink and yellow balloons are everything you would want.  A couple of roses around the edges that I couldn’t even begin to reproduce without it looking like a big mound of icing.

We’ve lowered the lights so the candles cast huge shadows against the walls.  Sure the flashes from the camera might blind us all, what can you expect from family!  One generation marveling at the next as another year is placed into the memory book.

Too many balloons float on the ceiling.  Disney characters from various movies you have stared at with wide open eyes.  Songs sung too many times that they still echo in my ears years later.

We went crazy with the gifts again.  Maybe next year we can be more practical, but we won’t.

I’m lucky beyond words.  And I will love you forever.

_____

I wish that was how the day tomorrow would go.  But something obvious will be missing, the guest of honor.

It’s not even that she is missing, maybe just missed?  She will always be just a few inches below where my shoulders begin.  Somewhere just to the left of center, where the muscle keeps pumping blood that gets faster and faster when I recall the first time I saw her.  More than words, more than feelings, just something that takes over and reminds me that the best thing I ever did will always be within my thoughts.  Just slightly out of reach at this time.

There’s no way to outrun these emotions.  They don’t stop me the way they did that first year.  But they do need to have their place.  Turning this negative into a positive is harder than you might think.  You can skip holidays like Christmas.  Ignore Father’s Day.  But since we celebrate the turning of a calendar of a specific person, you can’t just pretend.

That dishonors the person and it denies their place.

Abigail’s passing still makes my heavy heart bleed.  Her very existence changed me, it changed others, and in some very important ways it made me better.  A different purpose then has needed a different purpose today.  I still working on that.

Like this entry started, I waited a lifetime just to see her face.  And I would do just ab out anything to have just one more day.

Happy Birthday Abigail, the best ever….

Inevitable Probabilities…

Mask

One minute, it changed in just a simple blink of an eye.  At least from my perspective, for the people around me it went on for two days.  Caught in a moment that lasted much longer than I could have imagined.  Eventually all things catch up to you and last weeks running around pretending I can do anything I want smacked me in the back of the head as a reminder that wasn’t the case.

It took a minute to understand my surroundings and the presence of my mother.  Under the fastest of scenarios she couldn’t be in the same room with me in under six hours.  So when I last remembered Thursday and the television in the room was running a scroll that said Saturday, time had hit a pause.

The worst thing I can think of experiencing is being there one moment and not there the very next.  It happens in life and I didn’t want my family to understand it the same way I do.  Having the door slammed in your face and locked out of a portion of life for reasons you never understand.  It takes so much from you that never comes back.  Trust in yourself being the worst item on my list.

But as soon as my mother was looking at me the mask had to come out.  A subtle change that means lying to her about how I have been feeling and that I haven’t been doing more than I should be.

I’m trying to cheat death.  Rob him/her of the ability to take more than the future I wanted.  The problem has become that the faster I run the easier it is for someone to catch me.  My feet can’t move any faster.  I can’t out think this.

Death reminds me that we have been preparing for the meeting since the moment I was born.  Four and a half decades have passed but during Death’s latest meeting with the doctors they agreed.  And I want out of my bed to grab a pair of sneakers and hit the pavement.

In college I ran to Florida from Boston because I needed to find myself.  Away from expectations and the past.  It was a good experience.  I had changed my world enough to gain myself in return.

The balance between being a narcissist and having confidence in my actual abilities finally came into view.  Humility replaced being cocky.  I blame that on working with kids.

It allowed me to go back North and have a plan.

Now I worry about making it to next week.  That’s not the timeline, but when you lose a few days to physical exhaustion and drugs therapies; it might as well be.

My mother is worried.  She talks with my Landlady in a way they haven’t since I was younger and they worried I wasn’t talking about another’s death.  Add in the teenagers and one of their mothers, my life is full of strong women who are leaning on each other in ways I hadn’t seen before.  It’s not about plans but about direction.  A path that allows everyone to go at their own pace but always seeing the person in front of them.  Sometimes speeding up to catch me as I pull away.

College and Grad School helped to train me to recognize multiple needs in an organization and find a balance.  No different than family dynamics, but feelings are more pronounced within close knit groups.  As each of these women walk in and out of the room I find myself addressing them differently, knowing they compare notes later at the conference held at dinner.  But 15 isn’t 40 which isn’t 68.  The commonality is their love of me, the separation being how that love is expressed and the differences in our bonds.

Their masks are different because they play differing roles.  They are my family even though we aren’t all related by anything other than a common set of emotions.  Even the pair who actively raise their hands to run lines when they could be elsewhere.

I know I’m dying.  They know it as well.  But our play continues….

Plugged Up Ears

Fog

Leaving the show last night the cab driver asked if I was alright.  I knew I wasn’t, but for someone to wonder if we should be heading someplace other than home meant I really wasn’t as okay as I would tell people later.  It wasn’t pain, I felt physically fine.  But I was personalizing the lyrics to the point where there were truly effecting me.

No reason to get into a diatribe defending the word usage of a Progressive Rock band.  They are know for sweeping themes that are sometimes laughable.  Last nights lyrics talked about loss and trying to find a path towards some new world.  A place where things are not forgotten, just different and holding a changed meaning.  Otherwise known as living!

I’d stopped listening to this particular group because I reminded me of my daughter.  Much like Cat in the Cradle makes grown men think about picking up the phone and calling their fathers, a song entitled Along for the Ride makes me think about what life was like with a kid.  Some things could be controlled and other things were just for me to sit back and watch unfold.  But that applies to lots of events in life.

But it hurt knowing that I wouldn’t be around to hear their next album or be able to sit in my seat for 2 hours and listen to them live.  It made me wonder if those notions of a spirit meant that while I was in the room, my daughter was somewhere close by enjoying the music as well.

Part of dealing with the fog that comes and goes in my mind means accepting that dreams still exist for her.  That those hopes never will die and that sometimes they are going to sneak out and make some times more difficult.  I can prepare for some and just ride out others.  To ignore them or even worse pretend they don’t exist means forgetting about her.  That’s not an option, not ever!

My mother told me that she wished I had done something different with my life.  She’s happy about the education and that I have found ways to make my grandfather’s business survive.  But she wanted me to follow different dreams at times.  That the pressure of being something they didn’t expect was always going to be there.  Her dreams for me are still ones she voices and lately they have been more forceful.

It’s the difference between a longer ending that you can interject options into and walking out of the hospital one day without having had a clue that same morning of the outcome.  She wants to be a one woman Make A Wish Foundation, but her son has no desire to be treated special.  I don’t feel it and know I’m one of too many going through the same process.

But while sitting in that concert I had such hope.  For a little while I was again 18 and hearing them for the first time.  Sitting in a venue not far from my Frat House in Boston.  Trying to watch the keyboard player to an almost stalker level of interest.  His fingers moving effortlessly across his synthesizer.  Just a little escape from the world, my life.

Going home meant going back to normal.  That is what scared me.  Waking up this morning with a still ringing in my good ear and the emotions moving in different directions.

It will be some time before I can listen to any music.  I might not be able to again.  There is a value I place on it that means every time I’m going to wonder if the next track will hurt.  The album might not contain anything, might not even be something I’ve ever heard before.  But sitting in a chair trying to read through something, it needs to be silent so that the voices in my head can play their own tune.

I’m glad I went.  But I should have known what would happen later, life.

Ali Hit Softer Then Her…

Fight

This situation felt way too familiar.  Her face is almost a copy of the one that started this all, but there are some differences.  But we found ourselves sitting on the couch, her curled up beneath a blanket and me wondering what I could do to change anything about this.  I know what needs to happen and fear and doubt keep entering the plot to challenge that clear choice.

Susie has never gotten angry about my having not been around much for her growing up.  She gets that I’m the weird Uncle who has spent most of the last year getting my own help from her grandmother.  At this moment, she doesn’t care about that.  She’s hurt because she can’t decide how to spend her time with me.

Summer plans need to be made for her.  15 year olds who like camp and arts programs has to at least fill out some paperwork letting people know she is interested in a spot.  Only she worries that she’ll be paddling a canoe and I’ll be leaving the house for a final time.

This isn’t the way life should be for her, or anyone else around me.  It’s okay to change dinner plans with others, they can’t give up on their lives to sit around watching mine slow.

This is where the arguments come into play.  It’s the hardest part of watching others as they watch me.  This family and I did this once before with a different person, that Susie look-a-like.  Weeks sitting at a bedside waiting for something to change.

I’ve always been surrounded by strong women.  (maybe not always, but I don’t care to discuss the ex.)  That extra set of voices helped turn me into someone who has no issues learning to make a quilt or listen to boy bands or even worse, know all about various artsy things.  Even dressing up like a giant kangaroo for a children’s play.  Some of that was me, but some of it was them making sure I felt comfortable enjoying those activities.

Some fights are worth having.  I know if the situation were reversed, it would be me stopping the world and waiting for as long as life presented the opportunity.  Adults make those choices, teenagers shouldn’t have to.  One of life’s harsh realities we try to protect everyone else from.

While we sat on the couch, Susie admitted she was very angry at me.  She wanted to hit me and I let her.  A few of those punches hurt.  Words turned into just fragments when the throat gave way to tears.

Growing up is hard enough.  Some fights are worth it.

Other times it’s better to just sit there and take the punches to help someone else out.

I’m glad she got angry.  I’m proud she wanted to deal with it.

And I’m scared of how this will hurt her in the future when I won’t be around.